Our Journey with Cat Eye Syndrome

Its Been A While

2011-05-02T23:37:00.002-04:00

Well I think I set the record for longest time between posts, but I am just now getting to the point where I feel like writing again. Even now I am overwhelmed with the information I have to share, but I also regret not updating more often over the last several months because I miss not being able to remember the specific details. I hate that I might have forgotten one of the many small miracles that have taken place, but I hope that Gods glory will be revealed regardless. I am going to attempt to update since my last post which sadly was almost 10 months ago. I left off with Harrison having had his analrectalplasty which involved them creating an anal opening surgically. He had stopped taking a bottle or anything by mouth for that matter, his bilirubin was increasing, and he was scheduled to have tethered cord surgery. Well..that was July 31, 2010.
So I begin with August 18, 2010. This day was a scheduled colostomy take down surgery. On this day they were to close his colostomy and "hook up" his intestines to his new rectum. This surgery actually was supposed to be after the tethered cord repair, but his stoma from his colostomy was so prolapsed and bleeding so bad that the surgeon felt it was best to go ahead and do it now. PLUS, after seeing Harrison he realized that his KASAI was failing and that they really needed to start assessing Harrison for a liver transplant. Not the news I wanted to hear, but it was the truth I already knew in my heart. I can't express how much I love this surgeon. He immediately was on the phone with the Liver drs saying that they needed to come and work Harrison up to be listed for transplant. I thought this strange since he was a surgeon telling the Liver Drs what to do. But again, he was a strong advocate for Harrison and I loved him for it. I do believe God put him in Harrison's life for a reason and he has essentially been a guardian angel. As you read on in the future events you will clearly see why. Anyways, on this day, Harrison was brought in for the surgery and labs were drawn. His liver labs weren't great, but the surgery took place. Overall, the surgery went well. Harrison recovered pretty much on average time and was ready to return home within a few days. The surgeon checked frequently to see if the Liver team had visited and they hadn't. But on the day of discharge, the liver dr finally stopped by. She looked at him and said, "Has he always been this yellow and skinny?" Of course I told her he had gotten worse over the last month or so and she said his labs showed a high bilirubin but that we needed to get him to gain weight. Harrison was pooping normally and all looked good except for the liver numbers which they said they were still just watching since he had just went through another surgery. Of course, I knew things weren't great, but I was glad the surgery went well. So we left on the 25th of August and went home. All was well
until the evening when Harrison started screaming out and crying trying to poop. I had noticed that before we came home from the hospital that Harrison had suddenly stopped pooping as much, but I thought it was him trying to regulate his bowels. So after an awful night, I called the surgeon the next morning to tell about his night. They told me to give him a break from his feeds and that maybe it was gas and him still sore from recovery. Then as the day progressed Harrison began screaming in pain and was becoming more and more irritable and upset. I just sat and cried and rocked him. I knew something wasn't right but no one thought that but me. Finally I called the surgeon back in tears and he said to bring him in to the hospital because if I was crying then something was definitely up. (Did I mention I love this man)So 16 hrs after being discharged he was readmitted. I was terrified that Harrison had Hirschsprungs which is a whole other set of bowel problems no one wants to have. I mentioned this and they said, "well it is higly unlikely to have an imperforate anus AND hirschsprungs together, but I told them I knew of another family with a baby who had imperforate anus and was being tested for hirschsprungs. They looked at me and asked "well did she have it?" I told them I wasnt sure but I could call them. So I made my phone call as they drew labs on Harrison and took xrays of his belly. The mother of baby informed me that her daughters test was negative for hirschsprungs but of course I still was worried. The doctors came in and said Harrison had air in his intestinal track and it looked like a case of colitis but they werent sure why. The most common reason is infection so he was immediately started on IV antibiotics and stopped being fed. The next day they did a barium enema which showed an inflamed colon which only confirmed the colitis. His bloodwork showed infection in one sample but not in the other, so the continued his IV antibiotics to be safe. Since he could not be fed for the next 7 days that had to feed him through IV but it had to be a special IV that they call a central line which means it goes to the heart. Since it was a weekend and no one could put in a central line he had to have one surgically placed. This was a huge risk of infection, but he had no other options. So off he went the same day and had the line placed. Of course now he was being fed with something called TPN that affects the liver, but again he had no choice. The surgeon continued to contact the liver doctor who finally decided it was time to have him evaluated for transplant. It was such a whirlwind. I met with the entire liver team-the dr, the surgeon, the nurse practioner, the social worker, the financial worker,etc. They informed me of the process, did my social and psychological evaluation, and began testing on Harrison. After all was said and done, the transplant team assured me that he would be listed as early as the 1st of September, but they just needed approval from insurance of payment. WELL this is when the bombshell of ALL TIMES was dropped. Our primary insurance did not approve Levines for the transplant. We were all shocked. They approved many other facilites which meant Harrison would have to be transferred out. The closest facility was over 700 miles away. I was in shock. I just couldnt believe it. We had mentally prepared for a transplant, but not 700 miles away from all the doctors who knew him so well, or 700 miles away from my husband who would have to stay and work, and my daughter who would have to stay and go to school, and my mother who would have stay to care for her family. Not to mention that the estimated time of transplant was right around the time of my due date for baby #3! The transplant team even told me that I could appeal this decision, but based on prior experience with my insurance medical director, it would most likely be denied. I was unusually calm, but for some reason I just knew that things would work themselves out. I called the caseworker who had no idea it was even denied and I immediately began pleading my case. She had been in contact with me all along and knew of Harrison's complexity. I through out every thing i could think of and she said to let her make a few phone calls and she would get back. The transplant team agreed to help me pursue the appeal, but they weren't very hopeful. They agreed to go ahead and list him since his score was so high for listing. They said he was in the top 3 for their facility. Harrison was finally discharged on September 3 from his stay for colitis and we were still waiting to hear on the appeal from insurance. The following week Harrison had his 1st follow up in the liver clinic with the liver dr. She came in and began talking about how he had been approved for listing and that we needed to focus on him gaining weight. My mom and I thought she was referring the fact that he had been approved to be listed but wasn't actually listed yet. So we asked her to clarify and she said that morning the drs spoke with the medical director and Harrison had been approved to have his transplant. We asked I know like 30 more times that he had been approved at Levines and she said yes. Mom and I just cried. We were so thankful that this burden had been lifted and God had answered our prayers. We were again informed that he was in the top 3 of patients waiting for a transplant. So we left that visit excited about the good news. Later in the week, the insurance company called to confirm his approval and the case worker informed me that she had made sure that all of Harrison's information was sent directly to the medical director before he could deny services and that she worked hard to make sure it didnt get denied. I thanked her numerous times. Now we began focusing on what was to happen next. Harrisons tethered cord surgery was supposed to have been on Aug 26th but it got cancelled because of Harrison's colitis episode so it was rescheduled for October 21st. At this point, Harrison's jaundice was bad..he glowed..and he was having trouble gaining weight, and his belly was getting bigger but they still gave the go ahead for his tethered cord surgery. Considering all these factors, we continued to work with Harrison on his therapy, but he was no fan of food or anything in his mouth and he despised being on his belly or doing any hard work. But we kept on.

Take a deep breath and hold on..we are entering the ride of a life time.

2010-07-31T10:43:00.003-04:00

Ok so where do i begin..so much has occurred since my last post and I hope you haven't been holding your breath waiting on one. I have not been updating as often for several reasons..first school is out so Emily is also at home and that leaves a little less down time. Secondly Harrison has had surgery and recovery which has added to the usual list of doctor appts and things to do list. Thirdly, I have just been in one if those burn out moments. I am burned out from the adrenaline rush I survived on while he was in the nicu. I am burned out from the daily care regimen. I am burned out from having to repeat the same information over and over to my spouse, family, doctors, and whoever else needs to know what is going on. I am burned our from the constant worry. I am burned out from the constant analyzing and assessment of his general health and development. I am burned out from being house locked unless I want to pack up my house ( not really but it feels that way) just to go to the store. Did I mention that I was in one of those burned out moments? Haha..so needless to say I have not been in the writing mood. So i guess i will start where I left off.

On June 11, Harrison underwent his 2nd stage repair for his imperforate anus. They created the opening and pulled his rectal pouch and fistula which was connected to his urethra down to the opening. The surgeon said that his anatomy looked good and that in a couple of months he could close the colostomy. But along with this surgery came a setback. Harrison completely refused to take the bottle and to this day will not take anything by mouth. This has probably been one of the most depressing things for me. I know it might sound stupid to be bothered by, but him being able to bottle feed was allowing some breathing room and freedom from such a strict feeding schedule. In addition to this setback, Harrison had an MRI that confirmed he had a tethered spinal cord. This test was done before leaving the hospital from surgery. So with this diagnosis, the closing of the colostomy will be delayed because spinal surgery will take place first. And if that wasn't enough to swallow, Harrison's jaundice returned, probably the worse Ive seen it since his heart surgery. I was overwhelmed with all of this because essentially it just added more worry to my plate.

So I guess from here i will give my usual run down of updates.

Liver Harrison had to have his liver labs drawn in the emergency room on Tuesday. This was due to the fact that I noticed that his breathing was quicker. When I took him to have his labs drawn the nurse was concerned and told me the drs wanted me to take him to the ER for respiratory distress. So off we went and his liver labs came back with his bilirubin levels at 15.9. They haven't been that high since March. And they made a remarkable jump in 2 months. His enzymes were also elevated but nothing more than usual. I saw the liver dr on Thursday and he didn't really have much to say other than he needs to gain weight to get as healthy as possible for a liver transplant. He also ordered an ultrasound of his liver to be done so that they can look for any changes, cysts, or other things that can be of concern. We go back in 2 months for another followup. His stool color has also been much paler these days. We did increase his feeds and it seemed to produce more colored stool but not enough to relieve my worry. So the state of his liver is not great by any means and at the moment I guess it is stable. I am just not sure how much longer it can hold out. So please be in hard prayer that Harrison's liver will continue to work well and that bile will flow.

Heart during our recent ER trip cardiology did another echo on his heart and said that they see nothing that has changed that would be causing his breathing issues. That is a huge praise. They said his heart and function look good.

Weight and Growth Harrison weighs 12 lbs 11 oz and is 24.5 inches long. So he is still itty bitty but he is growing. Please pray for continued good growth.

Tethered cord We met with the neurosurgeon after the MRI. He said that the tethered cord surgery was to be done before any other surgery. So it is scheduled for Aug 26. This surgey is on his spinal cord and is an extremely delicate surgery. Any nerves damaged in surgery could affect his ability to move his legs, bladder and bowel function. So it is serious. Please be in prayer for Harrison and the drs during this time. Please pray Harrrison's liver status remains stable so this surgery can remain as it is. The earlier it is donnas, the better the prognosis long term.

Development Harrison currently has therapy twice a week where we he works on sitting up and pushing up on his arms when on his tummy. He has definitely gotten stronger but he still needs support to do some of these things. All of the stuff on his tummy in addition to his large liver making it harder to breathe make all of these tasks so much harder. He has also just started seeing a speech therapist for his feeding issues. All I can say is praise God for her. She really took the time to assess Harrison and all that he has been through, all that he has going on, and all that he still has to go through. With all this she has developed a plan that his specifically for him and she took the time to explain why he does some of the things he does that worry me. She helped me understand how the smallest of things are so important in development of a baby. Overall she helped me not be so frustrated with his feeding issues but instead understand how he needs to be approached,

Baptism on June 27, 2010 Harrison was baptized. An amazing moment and one in which we feel blessed to have had the opportunity to experience. Praise God for all that he has done and continues to do in Harrison's life.

Overall Harrison is still doing well. He is currently sick with a cold which is making him miserable so I ask that you pray that the Lord will relieve him of this. We are now going on a week of it. Also Praise God for Harrison qualifying for Med Cap C program. This will allow a nursing aide to come in the home and care for him for a couple hours a day so that I can do things like go to the grocery store and other errands. It is a blesing that he qualified because it also qualifies him for medicaid which will help in covering the costs of his medical bills.

And not to steal the thunder from our precious miracle, but I figured I would take this time to share the news that brought about the title of this post..take a deep breath..sit down..are you ready...ok..

We are no longer going to be a family of four but a family of Five. Yes you read correctly..No I am not kidding, no we are not crazy, no it wasn't planned, but it is by no means an accident. A true miracle of God. Yes i am handling the news in stride, we all are. I am 12 weeks and am due Feb 13. All I ask is that you please pray for the health of this baby. I am undergoing lots of testing due to Harrison's history and with each test comes the fear. I have completely relinquished it to God for I believe he will not give me more than I can handle. I have some tests coming up this week and as they draw closer I get more nervous. So please just pray.

Thank you to everyone for your kindness and support and prayers. We could not have done this without you.

I Have Been Humbled

2010-05-19T11:40:00.003-04:00

Man..I can't believe it has been almost a month since my last update. Time flies and with that I have so much exciting news to share about little Harrison. Before I share, let me give a perspective of where we were according to Doctors and where we stand today..according to Harrison..:)
In January, as I stood at Harrison's bedside after his 1st liver surgery, he was not only healing from a major surgery, but he was fighting to stay alive from the SEPSIS infection he got days after the surgery. Both doctors and nurses came in to discuss with Jamie and I Harrison's quality of life. We were told to consider what life will be like for him to suffer from liver disease, consider what life would be like for him with his syndrome and all the unknowns, consider what life would be like with all of his "complicated issues." I knew what they were wanting us to "CONSIDER" but in my mind and Jamie's mind it was not a decision for us to make. Only God knew the answers of my son's life, but I knew in my heart and soul that God had a plan for his future. So that was January..prognosis according to doctors was grim and had many unknowns. And he we are today..5 months later..celebrating all the wonderful blessings of his life..and according to Harrison..he is the healthiest he has been since the day he was born.

DEVELOPMENT- Harrison has been making good progress with his therapy. He can lift his head up while on his tummy, he can grasp and play with toys with both hands, he can bear weight on his legs and push to stand when being held, he can coo, his cry and sounds are louder, he smiles his beautiful smile and almost laughs and he GOT HIS FIRST TOOTH. He now receives therapy twice a week and is making good progress. Praise God for all of these blessings and abilities. Please continue to pray for his development.

Growth- Harrison now weighs lllbs 4oz a pound more than he was in the last update. This is the best weight gain he has had since coming home. He is still tiny for his age and not even on the charts, but he is growing. Praise God for the great weight gain, and pray that it will continue.

Feeding- Harrison has now started on solids with rice cereal. Please pray that this will go well and he will tolerate solids with no issues. He is doing a little better with the bottle but it is difficult since he has never really experienced true hunger. Overall though he is tolerating his food and I praise God for the progress he has made.

Liver- Harrison had his latest liver function tests and his bilirubin has come down from 13 to 9.8 as well as his GGT which indicates biliary function, his liver enzymes were slightly elevated, and his clotting factors were normal. So PRAISE GOD for the lower biiirubin levels and that his liver function is still stable. Please continue to pray that his levels will continue to come down, he has already defied the odds with the levels coming down so long after the KASAI procedure.

Upcoming procedure- Harrison met with the pediatric surgeon to discuss the repair of his impeforate anus. Creating the colostomy was the 1st step and there are 2 steps remaining. The surgeon sent him for a dye test to determine exactly where his connection is. Since he stooled through his urethra at birth it had to be to the bladder or urethra. The radiologist doing the test thinks it is to the urethra but I do not have his final report. The connection is very close to the area of the bladder so he could not say for sure. IF it is to the bladder, it will require abdominal surgery as well as bottom surgery to do the second step in his repair. If it is to the urethra, he could do the pull through from his bottom only. Either way, the surgeries will have to take place and they are still surgeries with the risks of complications. My prayers are this: That the area of his connection will be one that requires the least invasive surgery, that his repair will not destroy any muscle or nerve tissue that may aid in the function of his bowels, and that he will have a complication free surgery and recovery. The surgeon doing Harrison's repair is the same surgeon who did his liver biopsy, gut surgery, and KASAI, he is also the doctor who told the rest of Harrison's medical care providers that Harrison was a unique case and that each of his issues should be looked at individually and that he definitely had a chance of having a great quality of life. He has been one of my favorite doctors to work with due to his positive outlook and great care for Harrison. When he saw Harrison in his office the other day, he was so excited to see how good he looked and was in awe at how well he was doing. He couldn't wait to get back to the hospital to share the news with the others involved in Harrison's care in the NICU. Please pray that God will give him the wisdom and knowledge to make the best decisions in this next step for Harrison.

Thank you again to everyone who has provided for Harrison either through prayer, tangible, or monetary gifts. They have proved to be invaluable. There has been such a tremendous outpouring of support for Harrison since his birth and I feel so guilty that I have been unable to write each of you a thank you note. But please know that your support and generosity has not gone unnoticed or without great thanks. We have been receiving medical bills for Harrison since his coming home and they are quite astounding. To give some perspective: Harrison's first two days in the NICU cost $23,000 and no surgeries were performed. He spent a total of 106 days in the NICU and had 4 major surgeries and countless other tests and procedures. Even now, Harrison has numerous doctor visits, and weekly home health nurse visits and those are also billed. IN addition, we also purchase items for his development as suggested by the therapist, and purchase five different medications monthly for his care. So if you have sent a monetary gift of any amount, it has definitely been put to good use and we are so thankful that you have so generously given to our family. I have been greatly humbled by the generosity of my family, friends, and even those who do not know me or my family personally. I have also been humbled by the miracle that Harrison is and I hope that you too have been blessed in seeing the miracles of his life. He has been a testament to those in medical field for sure and I am again reminded that the one who wrote the book on Harrison's life is not wearing a white lab coat and working at Levine Children's Hospital, it is HE who gave the gift of life, the ever present and omniscient Lord himself. Praise God from whom all blessings flow.

Stop Raining on the Parade- Update

2010-04-27T20:44:00.003-04:00

So as we come to the end of our 1st month at home there have definitely been more triumphs than trials in my opinion. I sometimes look back and have to remind myself to look at the big picture. I have lived "in the moment" since 12/07/09 and I often miss what many others see. Living "in the moment" kept me sane, but it also can take away the reality of the magnitude of Harrison's journey in just these 4 months of his life. But when I finally do stop and take a look at what all has transpired, I am often overwhelmed by the events. I have mixed emotions of joy, awe, and disbelief, but I also am reminded of the pain, heartache, and anxiety that I felt during those times. It is very hard for me to "relive" those moments. When I first started this blog, I wanted to reach out to others who were experiencing something similar and I was excited to have people contact me and share stories and experiences. But eventually, these new connections became a source of anxiety. I would get an email with the headline "My child is just like yours" and as I would read I would relive those moments again, and then I would read about how this child had this complication, and that additional surgery and I would almost hyperventilate at the reminder that we are not out of the woods. You know, it is that whole idea of "what you don't know won't kill you" mind set. I know this, and I began to hate getting those emails. I was letting fear take over my body and my need to control dictate my emotions. So I prayed hard that I would be relieved of this burden. And so God revealed to me that I can read emails from other mothers whose children are "just like mine" all day long, but their emails are NOT the written book of my son's life. The only one who knows the path Harrison's life will take is God and I must trust that he will lead me there and hold my hand the entire way. So please continue to pray for us as we continue this journey. Harrison is home, but he is still sick. If you haven't seen him, he is still jaundiced. He is very tiny, and he fatigues easily. The signs are subtle to outsiders, but they are daily reminders to me that this journey isn't over.

Here are his updates:

Feeding/Weight- Since being at home, Harrison has gained about 10oz but he should have gained between 16 and 32oz so he is behind BUT he is gaining and not losing. He also grew a 1/2 inch. So he now weighs 10lbs 5oz and is 23 inches long. As for feeding, Harrison still is fed by G-tube, but he will take a bottle 4-5 times a day but he is unable to take his entire amount. For awhile, we were able to get him to take by bottle more than he was being fed through a g-tube, but he has slightly regressed in the past couple of days. It is very difficult to judge how much to feed him. In a healthy baby they will eat until satisfied and they give you hunger cues. Harrison has had very little opportunity to experience hunger so he will mostly just sleep if he is hungry, but he also has trouble eating the amount a 3 month baby can eat in 15 minutes. So feeding/weight is a constant battle and source of anxiety for me. Praise God for the progress thus far for it is better than most expected. Please continue to pray for his progress in feeding. We will probably start solids in the next month or so and that can pose an entirely new set of issues.

Liver- No new labs for his liver function have been drawn since my last post but new ones are due the beginning of May. I have finally relinquished my obsession over his stool for it is unreliable at this point, so now I focus on his skin color and behavior. Harrison has gained some strength but he still has days where he sleeps often. He still burns lots of calories just doing normal baby activities and tires quickly. And for several weeks, his skin color would fluctuate from being very bronze to being a pale yellow. But in the past week, his color has been fairly consistent and he looks better than he has in quite some time. I have no idea if this means anything, only the labs will tell. But I pray that it is a good sign. Please continue to pray for the function of his liver.

Neurology- Harrison had a follow up appt for his "possible tethered cord" diagnosis. At this time, Harrison is not showing signs of a tethered cord, but it can be difficult to tell in infancy. An MRI of his spine has been scheduled for June. This will either confirm or dispute the diagnosis of a tethered cord. I am praying that Harrison does not have a tethered cord. It is a possibility that he will not have a tethered cord, but the dr says "it is a slim chance." If he does have a tethered cord, it would mean another surgery at some point and can cause possible bladder/bowel issues. Please pray that test results will reveal no abnormalities in his spine.

Cardiology- Harrison had his follow up appt with the heart doctors and they said his heart is doing very well. He will not need to be seen again for 6 months and should be able to come off his baby aspirin in August. Praise God for this good news.

Development- Harrison has made great progress since coming home in many areas. He recently started cooing and reaching out for toys. He has also made great progress in his head control. Please continue to pray for his development. Tummy time is very difficult since his colostomy and g-tube are both externally located on his abdomen making it sometimes uncomfortable. His large liver also makes it difficult for him since it puts extra pressure on his stomach and diaphragm. He works hard and gets very frustrated, but he keeps trying. Praise God for the progress thus far.

Harrison regularly sees GI doctors for his liver, pediatrician for weight and basic baby care, a home health care nurse to do weekly weight and ostomy checks, and a therapist who works with his functional and oral motor skills weekly. Please pray for their wisdom as they continue to care for him.

Thank you to everyone for your kindness and support. It has been so cherished by our family. We cannot thank you enough for your love.

4 Months Old- Update

2010-04-07T16:19:00.002-04:00

Well Harrison had his homecoming on Tuesday March 23, 2010 after 14 weeks in the NICU. There was much craziness and changes that took place up to the last minutes of his stay in the hospital. The weekend before he came home, we met with the home health supply company at the hospital and spent about 2 hrs training on his apnea and oxygen monitors. That Saturday night, we roomed in with Harrison and he was hooked to the monitors we would use at home as well as the ones the hospital uses. They had to leave their monitors on. So the monitors interfered with each other all night long causing many false alarms and lots of lost sleep. So on Sunday we took Harrison back to the NICU and went home to prepare for his coming home. On Monday we returned to the hospital to learn that Harrison would NOT be going home with any of the monitors because he would not be going home on oxygen. Insurance would not pay for oxygen that wasnt needed all the time and so all that time training and the sleepless night was for nothing. So in part it was a good thing because we had a lot less equipment coming into our home but on the other hand we would have no monitors to let us know if something went wrong. I told Jamie that at some point we were going to have to let go of the worries and trust in God that Harrison would do fine even without the monitors.
On Tuesday- Coming home day we come in to find out that Harrison hadn't gained weight in the last week and actually had lost weight the past two days. So they were increasing his feeds by a good amount. We were very nervous because this would be the biggest increase he had been given all at once. We waited through 2 feeds and he did well so home we went. The only equipment we had to come home with was a feeding pump. Hallelujah!!

We came home to nicely decorated yard with beautiful welcome home signs made by my best friend Lauren and my mom. It was heart warming to see the love and thoughtfullness behind these efforts.

The first couple of days were busy organizing all of his medical supplies that were coming in for his ostomy, feeding tube, and feeding pump. And then home health came out to do a check up on him. All was well but busy.

Many have asked how he sleeps at night..Well..he sleeps great..but he is also continuously fed so he never gets really hungry. He tends to start stirring at 4am for a diaper change and by 6:30 he is usually up and smiling. So overall he does well. We are currently waiting on a foam bed to come in that will keep him elevated since he feeds all night long. We are temporarily using a smaller inclined foam seat called a NAP NANNY set in a pack in play so we can keep a close eye on him until his bed comes in.

As far as being at home...Harrison has overall done very well. The hardest part is trying to keep him on his feed schedule and learning when to increase his feeds. When you dont feed a baby by botttle or on demand it is hard to guess how much he needs or will take and I dont have scales to weigh him daily to make sure he is still gaining weight. Harrison also has numerous dr appts that require taking his feeding pump on the go. So far this has worked out well, but it initially had its difficulties while mom and I tried to figure it out for 2 hrs in the KOHL's dressing room. HILARIOUS!

So here is a glimpse at the day in the life of Harrison..

4am- Starts stirring and sometimes crying and mom wakes up to change his diaper and ostomy bag. Mom puts him bag in bed and he usually goes to sleep within the next 30min to hour.
6:30am- Starts stirring and usually wakes up quietly smiling and sometimes crying depending on how he feels. Occasionally he drifts back to sleep but usually he stays aways.
He is on a continous drip of formula through his g-tube til 8am.
8am- Stop feeding pump and change diaper, empty ostomy bag, and put on clean clothes for the day. Sometimes a bath gets squeezed in during this time.
Then it is move his feeding pump, NAP NANNY, and of course Harrison himself downstairs for the day.
8:30am- Start warming his formula for his 9:00 feed and getting 3 of his 5 meds ready to give with his 9am feeding.
8:45am-Attempt to bottle feed Harrison. (His first bottle he only took 5ml which is 1/6th of an oz. and he now regularly takes 20ml and has taken as much as 33ml which is a little over an oz.)
9am- Hook Harrison up to his feeding pump and run the remainder of his formula for the next hour. I administer all 3 meds through his tube during this feeding. During this time he stays in his NAP NANNY seat to keep him elevated while he eats. He usually sleeps during this time.
10am- turn off feeding pump and wait 30min for food to settle.
10:30am- If he is awake, I unplug his feeding tube and spend time doing some therapy with him like tummy time, or baby massage, or working on holding head up, etc.
11am-Either continue to play on floor mat or he may still be asleep and just waking up in which I will start therapy then.
11:30am- Start warming formula for his next feed at NOON. Change diaper and empty ostomy bag. Get 2 more meds ready for his noon feeding.
11:45am- Attempt to bottle feed Harrison again.
12pm- Hook Harrison up to feeding pump and drip formula in over the next hour. I administer 2 meds during this feeding.
1pm- Stop feeding and wait 30 min for it to settle.
1:30pm- Again sometimes Harrison is still asleep and sometimes he is awake. If he is awake, we have tummy time or play time.
2:30pm- Start preparing formula for his 3 o'clock feeding. Change diaper and empty ostomy bag.
2:45p-Attempt to bottle feed Harrison.
3pm-Hook Harrison up to his feeding pump. During this time he usually take a long nap
4pm- Stop feeding pump- He usually is still asleep.
5:30pm- start preparing formula for his 6pm feeding. Change diaper and ostomy bag.
5:45pm- Attempt to bottle feed Harrison.
6pmHook Harrison up to pump for his last bolus feed of the day.
7pm- Stop feeding pump and usually put Harrison down to play for a while.
7:30pm-Change diaper and empty ostomy bag and prepare him for bed. Get formula ready for the night. Change out all the bags and tubing to his feeding pump and make up new formula batch. Give Harrison 1 of this 3 meds for the night.

8pm-8am- Harrison is hooked to the feeding pump for 12 hrs so he is continuously fed during this time.

9pm- Administer Harrison's last 2 meds for the day.

12am- Change Harrison's diaper and empty ostomy bag and move feeding pump, NAP NANNY, and of course Harrison upstairs for bed.
Every 4 hours I wake up to restart his feeds and add more formula to his pump.

So you can see that there is very little wiggle room with his feeds. It is nice to have him home, but sometimes I feel much more like a nurse than a mom since I feel he spends a good deal of time in his NAP NANNY either sleeping or eating and not in my arms or in a stroller like a healthy baby would. I also spend a good deal of time preparing meds, formula, or feeding pump supplies. But we manage and do pretty well.

Many of you have asked about Emily- I feel she is doing very well with Harrison home. She loves him and always wants to hug him, kiss him, hold him, and she even washes her hands when she comes home without me even asking. She has such a beautiful heart and is so loving. She told me the other day that when Jamie and I die she would take goood care of Harrison and that she would keep him forever. So precious! She also is learning how to change his diaper and put clothes on him. She is such a great helper and very proud of her little brother.

As for Harrison's overall health-

Feeding- Since being home Harrison's feeding tolerance has gotten much better and he is able to take some feed by bottle. I have been able to increase his volume without any issues and I am currently working on cutting down the time he takes his feed in.

Weight- Harrison weighs 10lbs and he left the hospital at 9lbs 11oz. He needs to be around 12lbs to be at an ideal weight for his height.

Liver- this is the most frustrating part. His stool color has drastically changed since coming home to a pale color which is not good. His liver labs still show stable liver function and no rise in bilirubin numbers, but I have just never seen his stool do this switching back forth of pale and colored so frequently. He currently does not meet the criteria for a liver transplant at this point but he is a candidate if that time ever comes. One thing I am not sure everyone understands is that biliary atresia has no cure. Harrison could still die from liver failure before he ever receives a liver transplant and the liver transplant itself could fail or take his life due to the nature of the surgery. This disease is serious and life threatening. He obviously has some bile flow because his bilirubin levels have not consistently risen but it must go back and forth between flowing and not flowing because his stool color and skin color can change drastically in a matter of days. So it is a waiting game to see what is going to happen. Even the drs seems a little baffled at this one. Leave it to Harrison to do things differently than the textbooks.Please continue to pray that Harrison will defy all odds and bile will flow freely and allow him to keep his native liver.

Heart- Heart function is great and his defect is considered totally repaired.

Spine- Back in the first weeks of Harrison's life, a spinal ultrasound showed the possibility of a tethered cord. The neurosurgeon said they couldn's diagnose 100% without doing an MRI which they wouldn't do until about 4months of age. Harrison has an appt on the 20th to discuss this again. I do know of one parent whose child was also diagnosed with a tethered cord and that on the 4 month mRI it was revealed he did not have a tethered cord. Please pray for this area of Harrison because if he does have a tethered cord it could mean more surgeries for Harrison and other complications.

Growth and Development- As of now, Harrison is below the 5th% for height,weight, and head circumference so please pray that he will continue to grow and get stronger and healthier. He has also been assessed by therapists and it was stated that he has extremely low muscle mass particular in his upper extremeties. This means that lots of hard work on his part and therapy will be needed to build his muscle tone. Please pray that he will continue to develop in these areas as well. As for milestones, he has a few that are on target, but he is mostly behind. There are many factors that can contribute to this so please pray that he will continue to make strides in this area as well.

Harrison has definitely been living proof of the power of prayer and without the power and graciousness of God he would not be where he is today. Please continue to lift him up in prayer for his journey still continues.

Week 13 and 14 Update--There Shall Be a Homecoming

2010-03-18T21:02:00.002-04:00

Yes you read correctly..Harrison will be making his homecoming debut the beginning of next week..They are saying Tuesday. This is an exciting and long awaited moment. Please join me in this time of celebration and praise to God for such a little miracle and blessing.

So on to the updates..

Oxygen- Harrison had his oxygen removed on Tuesday and has been doing great without it. To speak to this great blessing and praise is to know that Harrison was suppose to come home on Thursday (today) and the plan was that he would still be on oxygen 24/7. As of today he is still holding his on. Praise God for this..many doubted he would be ready before coming home to come off of it and so far he has proven them otherwise. Please pray that he continues to do well.

Heart- His heart is still doing great and his incision site looks fantastic. Praise for such a great outcome.

Liver- His liver function was tested again and as I have said before we pray that his numbers go down and not up..so here is the comparison 3/1 3/8 3/17
Total Bilirubin 19.4 18.1 15.9
Direct Bilirubin 13.7 7.8 9
ALT 309 150 123
AST 144 206 200
Ammonia 98 69
So as you can see, overall his numbers are going down. Please continue to pray for him because these are still not in the normal range but praise God for the progress thus far..
Now don't you feel smarter after reading all those numbers..haha

Feeding- Well after being put back on continuous feeds, Harrison has now been able to take his feeds over an hour. He is still being fed through his G-tube and not by bottle. Please pray that as the bottle is introduced that he will be able to do so smoothly. This can be a difficult process. He still has trouble holding large volumes quickly so pray that over time this will become easier.

Growth and development- As of today Harrison weighs 9lbs and 13oz. To compare.. he weighed 8lbs 9oz on March 1st. So his gain has been steady. He has been progressing in his physical therapy and is now able to lift his head and hold it for a short time. He also has been becoming more alert and motivated to play with toys and of course interact with people. He has a smile that will warm your heart and a frown that just breaks your heart. One of his therapists stated that he is very motivated and alert which is a good sign for future progress. Please continue to pray that Harrison will only get stronger and praise God for the progress he has made.

Eyes and Ears- Harrison passed his hearing test which was wonderful news. The opthomologist rechecked his eyes based on some concerns I had. She says she sees nothing at this time that concerns her but would like to evaluate him in office. Please pray that further evaluations will bring nothing new.

Jamie and I will be staying overnight in a rooming in room in the NICU this weekend. Here we will be able to have Harrison with us in our room, but he will still be monitored by the NICU. We will be able to do all of his cares ourselves but have a nurse available at any time in case we have any questions or concerns. This is a great opportunity for us and a wonderful service the hospital has to offer.

We are about to enter a new "Normal" for our lives again so please pray that we are able to transition smoothly. Pray for Harrison's health, that he will continue to make progress in all areas of his health.

Praise for the wonderful blessings of needing no oxygen, passing hearing test, improving liver function, and improving in growth and development.

Thank you to all the prayer warriors for you have been such great support and comfort. I hope that you have also been blessed in seeing what God has done for Harrison.

And a special praise and Thank you for Harrison's doctors and nurses. Sarah, Laurie, Laura, Shanna, Amanda, Lindsey, Jennifer, Tony, and many others who have cared for Harrison since birth. You mean the world to me..I could leave with peace and rest easily at night knowing you that you each were there to hold him when he cried, comfort him when he was in pain, play with him when he was awake, tell him it was ok when he was afraid,hold the pacifier in his mouth when he couldn't do it himself, give him a bath to help him sleep, change his clothes and bedding umpteen times when he couldn't hold down his feeds, call the doctor when you knew something wasn't right, and provide the absolute best care that anyone could give to a baby with his needs. Thank you for putting up with my endless questions, obsessive concerns, and thank you for being there for me. Words do not express my gratitude and love I have for each of you. So if you read this I am sending you a virtual hug and it is filled with love and tears. I love you all and thank God for placing each of you in Harrison's life.

Week 12 Update

2010-03-09T20:14:00.004-05:00

I realized today that Harrison has now been in the NICU for the length of 1 semester of high school and time has really flown by much faster than I would have expected. Harrison is recovering nicely from his heart surgery and hopefully we are getting closer to being able to come home. So here is the update for the past week.

Heart- Harrison's incision site is healing beautifully. Many nurses have commented on how it one of the best they have seen. His most recent echocardiogram showed his heart looked great and is working well. Something that I have noticed is that his heart rate is really low. They claim that older babies have lower heart rates and it is normal..but of course as Harrison always does..every time they give a low number it seems that the he goes lower than this when he sleeps. My concern is what happens when he comes home and isn't on monitors for me to know what is too low..SO please pray that his low heart rate is as they say..NORMAL..and not a sign of future problems. Praise God for such a great recovery from heart surgery.

Liver- So they ran liver function tests again yesterday since it appeared that his liver was larger. Shortly after heart surgery his liver enzymes and bilirubin became elevated to levels higher than ever. So the best way to understand this all is remember.. we want all liver function numbers to be lower not higher. So yesterday's test revealed that his total bilirubin was 1 pt lower, but his direct bilirubin went from 13.7 to 7.9 which is great. Direct bilirubin is what becomes elevated with liver problems. One of the other liver function numbers went from 309 to 150 but a 2nd one went from 145 to 206 so one went up and the other down. His clotting factors which also indicate liver function came back as ok. So overall, his labs show that his liver is still functioning well. Please pray that these continue to come down in future labs. But praise God that his liver is remaining stable at this point. And as always..I ask that you pray for a miracle on his liver that it will begin to function normally to spare him from any future surgeries.

Oxygen- So Harrison is still on nasal cannulas due to the fact that his oxygen levels drop to extremely low levels while he is sleeping. Drs seem to think that his enlarged liver presses on his stomach and diaphragm and when he is relaxed his diaphragm doesn't fully expand. Of course I would love for him to not have to be hooked to oxygen tanks when he comes home so that he would be more free to move around. Please pray for Harrison's lungs to work at full capacity all the time so he can be free of the oxygen.

Feeding- So when Harrison came out of heart surgery he was able to receive bottles and bolus feeds through his g-tube. These were both things that he had not been able to do previously. Well after returning to the NICU and as he progressed up on his volume in feeds he vomited. So immediately he was changed to continuous feeds which means it is dripped in at a slow rate all the time. And the vomiting episode seemed to trigger a reflux and gag response that he also didn't have before this incident. Therefore, his bottle feeding has pretty much been non existent. He has no interest in taking a bottle or anything that drips liquid in his mouth. It makes him gag or he pushes it out. He will even refuse a pacifier at times because it triggers the same response. He is able to handle his feeds on continuous feeds so that is a praise because it helps him gain weight and get bigger and stronger. But please pray that time will bring about a renewed desire to eat by mouth and that he will be able to eventually transition to all bottles. Please pray that Harrison will continue to do well as they increase his feeds to meet his goal. He is so close to being there and nutrition is his primary obstacle to overcome in being able to come home.

Thank you to everyone who has prayed for Harrison. Your support has been amazing. Thank you to Carolina Dance Explosion and Explosion Martial Arts who put on a kick a thon to raise money for Harrison's medical expenses. Your kindness and generosity is overwhelming. As always, words can't express what you all mean to me and I can't thank you enough.

Please continue to lift up Harrison in your prayers. He still has a long journey ahead.

Week 10 and 11 Update

2010-02-26T19:37:00.004-05:00

These pictures are a progression
1st- Family pic before surgery 2nd- Picture of Harrison immediately after surgery 3rd- A picture of all the pumps needed to sustain and monitor Harrison after surgery..AMAZING 4th- Harrison on day 4 post operation- A true miracle!

Week 10 and 11 I have squeezed together since the two weeks had lots of things going on in preparation for Harrison's Heart Surgery. Harrison had his heart surgery on Monday February 22, 2010. It was his 11 week birthday. Harrison was supposed to have his heart surgery on Friday Feb 19th, but due to elevated white blood cell count it was postponed. So to back up and get to where we are today, I will break events down by my usual categories.

GI/Feeding- Due to Harrison's vomiting episodes a formula change was made and they got him to full feeds, but he was having diarrhea. They decided to cut his feeds in half to see if it was a volume issue causing it. This reduced his stool output but it was still watery. At this point, GI decided to start a medicine for overgrowth of bacteria in the intestines to see if it would help. They started the medicine and within a day his stools started to firm up. He still was only at half feeds but they decided to leave him there since he was to have surgery on Friday. Even though surgery was cancelled for Friday, they kept him on half feeds since it was rescheduled for Monday.

Liver- Several liver function tests were performed since he was getting ready for surgery. On Thursday before surgery, his bilirubin was 14 and liver enzymes elevated from the previous week. They did another liver function test the morning of surgery and his bilirubin was 11. So the had gone down. This seems to be a pattern with his numbers that they fluctuate. Right after surgery Harrison's bilirubin was 7 and 48hrs after surgery it was 9 and liver enzymes were way down. Now, it should be mentioned that Harrison was on the bypass machine which also cleanses the blood and could explain the lower numbers. The heart surgeon is very interested in seeing if this surgery does help his liver function which is what the article I showed them said happened for that baby, but as you can see by the 2nd day post op numbers,they are rising which is not a good sign. Today, Harrison looks very jaundiced again, so it still tells me that it is not functioning well. His urine is very dark which also shows poor liver function. But at one point, Harrison's g-tube drain had yellow colored secretions which is a first for him. That means that there is some bile flow but it appears that it is not constant. Please pray for Harrison in this. He needs good bile flow in order to prolong a future liver transplant along with the complications of liver failure which can also take his life.

Heart- Before Heart surgery, Harrison had to always be on nasal cannulas to help with oxygen. If he cried he turned a nice shade of deep blue or purple and his oxygen levels dropped immediately to alarming levels. He also hardly cried for long periods of time because it was so tiring and it made the mere act of eating by mouth exhausting. After heart surgery and removal of breathing tube, Harrison cried, or I should say squeaked for a least 20 mins and remained pink the entire time. He has never had these high levels of oxygen and it is amazing to see the difference. Harrison had 3 repairs to his heart and all were a success and totally repaired according to the surgeon.An echocardiogram done following surgery did show that his right ventricle is not squeezing like they would like to see, but this is also the side that has not had to work as hard due to the defect. As with any surgery, there can always be complications. Harrison had some colored mucous when on the ventilator which made them suspect lung infection. Tests were done and today they revealed that it was bacteria that was normally found in esophagus and lungs which is good. He still has a very wet cough and due to his being sore from surgery he doesn't want to cough hard enough to get it out and it can affect his oxygen. Please pray that Harrison will continue to make progress in his healing from the surgery and his lungs will fully recover.

Praise- Praise for a successful surgery and minimal time on the bypass machine. Praise for skilled doctors and nurses who are able to care and treat Harrison. Praise for the miracle of his life.

Prayer- Pray that Harrison will continue to make great strides in this recovery process. Pray for his feeding to be successful because according to those in the medical field, cardiac babies tend to have difficulties feeding after surgery. Pray for Harrison's liver to thrive now that it has a repaired heart to supply it with new blood and more oxygen. Pray for Harrison's heart that it will only grow stronger with time.

A little side note: Harrison has now been in the hospital for 11 weeks which is just shy of 3 months. Since this time, he has been moved to different areas in the NICU and has had many "neighbors" who are also there fighting for his/her own life. In every pod that Harrison has been in, he has had a neighbor that has lost his/her life. Having spent so much time in the NICU you come to know the families that are there and it is heartbreaking to see and hear when their little one did not make it. I share this with you not to bring sadness or gloom, but to help point out the miracle that life really is. I feel so blessed for each day that I wake up and my son is still here. I also share this to show all those prayer warriors out there, that when you pray for Harrison, he has truly been blessed with the gift of life and we should remember to praise God and give him the glory for all the ways in which he has blessed Harrison's life.

Week 9

2010-02-16T20:31:00.003-05:00

My Valentine! :)

Once again, I am running behind on the updates but again I was waiting on some test results to come in and confirmation of surgery dates.

Overall the week for Harrison has been ok. There were some bumps but we have been hanging in there trying to determine what needs to be done.

Heart- Heart still doing well despite the defect, but he is scheduled for his open heart surgery this Friday, February 19th. This is the biggest surgery yet and is technically dangerous since Harrison's liver is not in the best state. Liver function plays a major role in blood clotting and during surgery they pump the body full of Heparin in order for the blood NOT to clot so he has to be able to help them out by clotting in order to survive the surgery. Please pray for his clotting factors to be at a good level for surgery.

Liver- His liver enzymes came back really elevated again. It is frustrating, but at this point they are focusing on the heart surgery and will revisit the liver after surgery. There are still many factors playing into these numbers since Harrison has had to be on and off the TPN mix for feedings due to his trouble with feeding, illness, etc. and this TPN can affect liver enzymes and bilirubin.

Feeding/Digesting/GI- After some battling with doctors about Harrison vomiting with his feeds, they finally decided to start from scratch to determine the cause. He had an abdominal ultrasound done and all came back normal so nothing there that would be contributing to his vomiting or diarrhea. They started him on another formula and moved slowly in progression and he made it to full volume without any vomiting. But the diarrhea continued. After some further testing, they feel that he has an overgrowth of bacteria in his intestines that could be contributing to this so they are treating it with an antibiotic. Hopefully this will improve his stools and digestion and he will be able to break down these nutrients.
Due to his dumping of feeds he was put back on TPN and may remain on it until surgery.

Therapy- It is baby steps but therapists are working on head control at this point. He is trying every day but it is baby steps. I definitely see overall improvement of movement, but we still have a long way to go. Heart surgery will create another setback in this journey, but his ability to heal and time of recovery will dictate how much. Please pray for him in this area.

Unexpected events- Harrison did show signs of another fever over the weekend and they immediately began treating him while testing and ruling out bacterial infections. All tests came back negative and he showed no further signs of illness..Praise God!

Prayer- Please pray for Harrison's upcoming heart surgery. Pray for the doctors' and surgeons' wisdom, knowledge, and skill as this procedure is completed. Pray for a complication free surgery and recovery. Pray for God's divine plan in it all and that it be revealed. Pray for our family as we prepare for this surgery. Pray for strength, courage, and peace.

Praise- For Harrison's overall good week. Praise for a disappearing illness. Praise for allowing us another week with our precious son. He has touched the hearts and lives of many and I am thankful for that.

Week 8

2010-02-08T20:07:00.002-05:00

Well I am a little late on the week 8 update but lots of things were taking place at the end of the week. The overall status of the week was good, but Harrison did come down with a fever, diarrhea, and vomiting. He is now doing much better but please read on for the amazing turn of events that took place.

Heart- So if you remember in one of my earlier posts, I mentioned I found an article regarding how the TAPVR defect caused problems with the KASAI procedure in a baby who also had biliary atresia. I have been showing this to doctors since before Christmas to no avail. Well I decided to ask the cardiologist who diagnosed Harrison with the defect in utero some questions I had about the article. He mentioned there were some other issues with Harrison's heart that made them want to wait til he was bigger to do the surgery. So I began asking about future plans if the KASAI didn't work and we would be faced with the same dilemma as this baby in the article. He looked over the abstract and said that he could see where it had some good theory and he would like to look over it. I explained to him my concerns about waiting to do the surgery especially after seeing that the boy in the article was very similar to Harrison and his KASAI was failing but suddenly started working after having his heart repaired. So the dr wrote down the article and came back the next day to say that what he saw in the article had some validity and he would like to discuss it with the surgeon. I couldn't believe it. My Googling finally was being of some use. I also couldn't believe that doctors were finally listening to me.Too me this was true evidence of God's divine plan..I found this article which is now hopefully and prayerfully going to only help little Harrison in his journey. A couple of days later I was informed that after review of the article both cardiology and surgery felt it would be of benefit to go ahead and do Harrison's surgery sooner rather than later. On Friday I was told that he would have his surgery on Monday..with that being said..it got cancelled due to Emily getting sick which I will discuss later. So we are waiting now to see when Harrison's surgery will be rescheduled to.

Liver- On Monday, they ran his weekly liver function tests. His bilirubin had gone from 8 to 12 and his liver enzymes were elevated. His stool was still a pale yellow and he looked very jaundiced. I almost expected these type of results. I was even more disheartened because he was now off the TPN which can affect these numbers and he was still elevated and of course GI drs were still saying you have to give it time. Well..on Tues I noticed that Harrison's heart rate was higher than normal and he felt warm. I took his temp and it was higher than normal for him, but still in the normal range so no one else was concerned. But of course I knew something was up..it is God given mother's instinct. I also noticed his stool was watery and they said they would watch it. Later that evening, I kept calling and the nurse said he had spit up a couple of times and they were having to turn up his oxygen levels to a higher % just to keep his numbers good. Needless to say I was anxious to get there in the morning and push the doctors to investigate this further. When I got there, I touched him and he was warm..I took his temp and he was 99.9 so I told the nurse. She said that he got to 100 over nite so now I was waiting for the doctors to round because something was going on. The nurse went to a meeting and I went to pick Harrison up and he was burning up..I checked his temp again and it was 101.1. I immediately got another nurse who called the doctors. They came by and ordered all kinds of tests including ones for sepsis. It was quite nerve wracking. He was now dumping (diarrhea) almost half of his food at every feed which was not good. He was sucking on his pacifier like it was going out of style which was also unusual and of course no one was concerned. One of the tests ordered was another liver function test. It came back as elevated again..his bilirubin was 12 and now was 13 but his liver enzymes had come down some..I had already mentioned the possibility of cholangitis which can result from the KASAI and they called GI who had him started on an antibiotic just in case. Throughout the rest of the week the results for bacteria type infections were turning up negative which was good, but it meant probably cholangitis but maybe also a virus of some sort. There is no test for cholangitis. Since Harrison was dumping most of his food,they had to put in an IV to give him fluids (and after 12 hrs of this he stopped sucking on his pacifier like a crazy person..I tried to tell them it wasn't normal.) They also had to stop his feeds to try and help him get his bowels to stop dumping. So he went back on TPN. The most interesting part of this ordeal was when he started dumping his stool color was not a yellow brown..much closer to the color it should be. It changed so much that the cardiologist even mentioned it looked more like normal stool. Over the next couple of days the color of his stool remained the dark color and I was amazed but in wonder. NO one,not even GI had an explanation for the sudden change..well if you remember they were also looking at doing his heart surgery on Monday so they were running liver function tests for surgery so he got another one on Saturday. That makes three..Monday- Bilirubin was 12 and liver enzymes elevated, Wed- Bili was 13 and liver enzymes slightly lower, Saturday- Bili was..HOLD ON TO YOUR HATS..9 and liver enzymes were much lower than Wed....AND..his stool was starting to become more formed and...it was still staying DARK.. NO one has an explanation other than that there has to be some bile flowing. Praise God!

Oxygen- Harrison's oxygen had to be increased while he was sick, but he is now doing better and is able to have lower levels.

Therapy- Harrison has started to receive speech (for feeding), occupational therapy, and physical therapy. I was very excited to see all of these because they are so important to his growth and development. He struggles with tiring easily and feeding is quite the chore. It is hard to say what is the cause of any and all of these because there are so many factors.

Emily- Emily saw the endocrinologist and GI doctors this week. Her appts went well and endocrinology wants to do an ultrasound on her thyroid just to rule out any possible issues. Regarding the canceling of Harrison's surgery..Emily came down with an awful intestinal virus on Saturday evening that eventually led us to the ER for fear of dehydration. She had a fever of 103 and was sick for over 8hrs straight. Today she is doing much better, but we were concerned that with Harrison having such a big surgery that we could not give her the care she needed and the possibility of infecting him was also a concern so we called and told them the situation and they were very understanding and postponed surgery.

Today..Harrison is doing well, he no longer is on the TPN, he is back up to full feeds and he looks and feels much better. Emily is also doing much better. Praise God for all of these.

Prayer- Pray for Harrison that he will continue to thrive and develop. Pray for his strength in the face of the biggest surgery yet. Pray for wisdom and guidance in the doctors and nurses who care from him. Pray for the Emily as we continue to look into the thyroid issue. Pray that it is simply nothing as they suspect. Pray for our family that we will remain healthy and strong physically, spiritually, and mentally, as we prepare for Harrison's surgery in the upcoming weeks.

I also wanted to share some amazing insights on Harrison. These are just a reminders of the incredible aspects of life that only God could provide.

1. 75% of babies with chromosome disorders never make it to birth..Harrison did..Praise God!

2. I was told that 99.5% of people who have polysplenia have what they call an interrupted inferior vena cava. This can complicate liver transplants. Harrison has an intact inferior vena cava. He is the .5%. Praise God!

3. The article that led doctors to revisit the timing of Harrison's heart surgery states that there were only 3 cases documented of patients who have both biliary atresia and TAPVR. OF these 3 cases no patients lived past the age 3 due to complications of these issues. In the case of the boy being reported, doing his heart repair saved his life and was thriving a year later after having his heart repair. This piece of literature is now being used to educate doctors in Harrison's case. Harrison is rare, his condition his rare, but in God's eyes he knows every intricate path of his tiny body and he is beautifully and wonderfully made. Amazing how these small things have come together to have such importance. Truly the hand of God.

There are many more and I could go on..but I was just reminded of these this week.

So praise God for the miracle of Harrison's life. Praise for Emily's quick recovery in her illness, and praise for the care of the nurses in the NICU.

Again- Thank you to everyone who continues to share your support love and we are entering the 9th week of this journey. May you each be blessed for your kindness and grace you have shown to our family.

Week 7 Update

2010-01-31T13:13:00.003-05:00

So week 7 has come to an end and I can say that is overall has been a good week. There have been some hurdles but overall we have made major steps. First, I finally was able to tag down the GI doctor to ask about levels. Of course they will not say the KASAI has failed even though his levels went up the past 2 weeks because he was receiving IV feeds that affect his liver as well as he was still healing. They said he would need to be on full feeds for a while to really get a good look at what his liver is doing. So here are the latest updates

Liver- Liver panels will not be ran until Monday so I dont know what they are yet. Please pray that they will have come down. His stools still show acholic color (pale) but hopefully we will see a turn around on this too.

Heart- Cardiology says his heart is still doing good and there are no changes at this point.

Feeding-Harrison's reflux really reared its head this week. After I inquired about something they kept saying Harrison had done surgically that wouldn't allow him to reflux, they realized they made a mistake and Harrison actually never had this procedure done and that is why he was able to reflux. So meds were started to help relieve the acid from the reflux. The first didn't do much, but the second med seems to help much better. Also my breast milk finally came to an end which meant he had to go to formula. Well the formula GI doctors recommended made him vomit everytime so they switched formula to a hypoallergenic kind and so far his reflux and vomiting seem to have disappeared (makes me wonder if he was allergic to something I was eating)He was able to come off of all IV feeds and they removed his IV line that he has had since being born. Tomorrow he will be at his full feeding level.

Breathing- Harrison is down to 1 liter on his oxygen and he may be able to come off of it all together.

So with all of this being said, Harrison has made great progress. He is gaining weight, acting better every day and they have even mentioned moving him to progressive care which is the step down unit before going home.

Prayer- Pray that Harrison will continue to make progress. Pray especially for the function of his liver. Having his native liver is the best possible scenario at this point. Pray for his development that he will continue to get stronger and not have to rely so much on tube feedings.

Praise- For a good week overall and that he is making progress to being able to come home.

Special Prayer Request- Pray for Emily as we have her thyroid investigated further. Her thyroid levels came back as normal, but we will be going to an endocrinologist to have it looked into. Please pray for the doctor's wisdom in treating her.

Thank you to everyone again for your love and support. Those of you who help prepare meals are angels and you even delivered admist the winter wonderland. It has been wonderful. Thank you to everyone who sends comments, emails, cards, etc that are so loving and supportive and most of all thank you for all of your prayers. You all have been a blessing to our family.

Week 6- Waiting for many warm days so I can say for sure it is Spring

2010-01-24T19:16:00.004-05:00

As I type this update, I do so with hesitation..and that is because it seems that when I finish and hit the post button, something changes. I am going ahead and updating because I am determined not to be superstitious because I believe in God's will and not luck. So I will begin where I left off..

Last Saturday as soon as I updated Week 5, I was on my way to see Harrison. While on the road, my phone rang and I immediately recognized the number as the one to the NICU. My stomach dropped. I had never received a call from them and it was the weekend. Sure enough, it was the nurse practicioner calling to say Harrison had what appeared to be seizure like spells. He was dropping his oxygen levels, doing some stiffening, heart rate was dropping, etc. He had already had 4 episodes about 30-45 min apart. So they were giving him seizure meds, and waiting on the neurologist to come. Weird, but the night before this I couldn't sleep well and I found that I was nervous and more anxious to go see Harrison Saturday than I usually was. I attributed it to things going well and scared to get more bad news which seems to have been the case in the past. But now I know it was my instinct telling me something wasn't right. So after arriving at the hospital, I went in and began questioning the nurse in detail about these episodes. Immediately they reminded me of the episodes I had seen when Harrison was sick with sepsis and on the ventilator. I expressed this to everyone, but most seemed to shrug it off. Later this week, the nurse who was with me when Harrison had similar spells while sick said she agreed that they seemed very similar if not the same. So the neurologist ordered an eeg and she then ordered a 24 hr eeg with video and then extended it for 48hrs. So for 2 days he was hooked up and videoed for seizure activity. His results of the eeg were normal. So they stopped the seizure meds but still had a MRI ordered. The MRI was done on Friday (I just love how all these important tests are always run at the end of the week when there is no one here to read them..I think it is God's way of teaching me patience and playing games with my head ..just kidding God..I know there is a reason) Anyways, the MRI says no abnormal findings but says benign hydrocephalus and something about a large head circumference which Harrison does not have. SO the nurse practitioner is going to have a pediatric radiologist read it on Monday to be sure it was read correctly.
So that was the major focus for the week and so far no other spells have occurred. Praise God..I pray that they will never return even once the seizure meds are completely out of his body which could take weeks for Harrison.
As for other updates:

Heart- The cardiologist wondered if maybe the spells were related to pulmonary hypertension so they had them up his oxygen level to get his saturations higher. They feel that this is beneficial to him so right now they are leaving it. Everything was looking good until today when all of the sudden his saturation levels were dropping and staying low. As of right now, we don't know why..Please pray that this will resolve itself..

Weight- Harrison weighs 8lbs 13oz which is the highest he has been. Please continue to pray that he grows healthy and strong.

Feeding- Harrison started being fed this week. He started off doing well, but once they increased his feeds, he began to have trouble. He seems to gag and vomit if he sits upright and sometimes even when he is fed through a tube. He also doesn't seem to want to feed by mouth. He struggles with the suck swallow breathe concept and it is hard to say what is the root cause of any of these feeding issues. I am concerned about it to say the least, but there are so many reasons this could be happening. It is overwhelming and of course the people I really need to see are not here to answer so I am frustrated to say the least. Please pray that Harrison's feeding issues resolve themselves with time and that this will not be a setback. Pray for knowledge of doctors to help in this area.

Liver- Well this part is the hardest part. At the beginning of the week Harrison was starting to produce stool that was dark and green. Surgeon said that it was exactly what he expected. He had this for a few days and even after the 1st day of feeds. Well by the 3rd day of feeds, Harrison's stools have turned to an extremely pale yellow if not white color. His latest lab results show that his liver enzymes are elevated and bilirubin is up. All of these are signs of poor liver function. So of course, I am thinking the worst that the KASAI is already failing and of course no one has been here to answer my questions. If the KASAI fails, I do not know what this means for Harrison's future. No one has gone that far, so of course I worry. Can his heart be fixed if it is failing? Will they be willing to fix it? I have read once article of a baby who had TAPVR and biliary atresia. The KASAI failed and they decided to do the heart repair only if liver transplant was considered. As soon as they repaired the heart, the KASAI all of the sudden started working.Click here for abstract of article Of course the surgery to repair is extremely risky but it is interesting to say the least. I have mentioned this to every cardiologist who will listen, I even brought it up before he had the KASAI. But please pray for Harrison's liver function. It has to be working in order for the heart surgery to be done. His life depends on this..

Praise- Again, I thank God every day for the wonderful support of the community. There are many of you out there who have never met me in person but you are praying for my son. It means the world to my family and I, and I just can't express my gratitude for all of you. Praise God for Harrison's weight gain and for wonderful caring nurses.

Prayer- Pray for Harrison's stability in all aspects of vital organ function. These are his life lines and so important to his overall prognosis. Pray for my family that we will continue to seek God's guidance and see his will in all of this. Pray for the doctor's who care for Harrison that their eyes will be opened to his most vital needs.

Thank you to all of you who lift up Harrison to the Lord in prayer. I know he hears our cries and prayers. Keep'em comin...

Week 5 Update

2010-01-16T08:58:00.003-05:00

This week began with Harrison's KASAI surgery. In this procedure, the surgeon attempts to create a way for bile to flow by taking a piece of intestine and connecting it to the liver where there are hopefully microscopic internal ducts that will secrete bile.

Harrison's surgery began around 8am Monday. The surgeon had told me they would give hourly updates but they would be very vague. He said if anything was to go differently from what was discussed that he would personally come out and talk. The procedure could take anywhere from 4-6 hours. Well at about 10:50 the surgeon came out. My stomach dropped because it was so early. He then said he was done..Whew! then he sat down to explain that the surgery itself went well and that they were able to do what they needed to do, but he also would have liked to have seen more 100 micron ducts (this is the size needed to create good bile flow.)So now it would be up to lab results and Harrison's stool color for the next 3 months to determine how well and if surgery was successful. In some ways this is a good thing to know I can look at his stool color and know what color it should change to, but in some ways it is bad because it can easily become an obsessive assessment tool. One that could drain the joy out of today if I am not seeing what I think I should see.
When we went back up to see Harrison the nursery was closed. The nurse said two different things were going on and she couldn't tell us when it would reopen. I could tell that there were lots of nurses, doctors, hurrying in and out of the nursery. When the nursery finally reopened, there was a white rose on the nursery door indicating a baby has passed away. I later learned that this was Harrison's old neighbor who had passed. My heart was saddened for this family but it also reminded me of the reality of the babies in these nurseries. Every day that they/we are here is a miracle and blessing from God and it should not be taken for granted. When we finally got to see him he was doing really well and looked really good. I stayed over night with my partner in crime (my mom :))to be close in case things took a turn. The following morning we went to visit and he was still doing well, but they were keeping him heavily sedated to keep him from moving. They encouraged us to not talk or touch him so that he would not startle or move. His incision was only be held closed by steri strips instead of stitches. This was because when they went in they found what they thought was a pocket of pus that could be possibly and infection and so they sent it to the lab for a culture and closed the area with steri strips so they easily open it back up if it became abscessed. Of course this wasn't what I wanted to hear, the possibility of another infection. Harrison continued to do well throughout the day.
The following day, Wednesday, I returned to find that Harrison was struggling a bit with the respirator and they had to turn it back up..He was more swollen than the day before and that the culture had grown something and it was now being sent to determine what type. I was disheartened to say the least. Throughout the day Harrison remained fairly stable. The surgeon came in an looked at his wound and said that everything looked good but that he didn't want his feeding for several more days. He also looked at his stool and said he thought he saw bile but would have to wait and see. Then he said that his bilirubin and liver enzymes were down from his pre surgery labs but he also didn't want to "call it spring based on one warm day." So really only time would tell.
On Thursday, Harrison was even more swollen than the day before. He had gained almost 14oz of fluid. His head had a pocket of fluid at the back and his eyes were almost swollen shut. They were using diuretics to help flush the fluid but it would take a while. Even though he was swollen, he was doing well otherwise. They even mentioned feeding him that afternoon, but I told them the surgeon said no. They called the surgeon to find out I was right..Ugh! Again another lack of communication. Come to find out, the surgeon never wrote this in his post operative notes. Thank God I was there to catch this.
On Friday, I came in to find Harrison looking completely different. He was barely swollen and they were actually getting ready to take him off the ventilator. They were weaning him off his pain meds and he was awake and alert. They removed the ventilator and he did really well. He was looking around and staring at his mirror in his bed (one of his toys he has :)) It really was amazing to see the difference today from yesterday. I also read him a book about going to the doctor that Emily gave him. He liked it. He now was producing more stool, and again I found myself obsessing over the color. I am trying to force myself not to do this, but it is really hard. It is in God's control and not mine so I try to remind myself of this.
So overall, the week is good. The infection at the incision site was found to be the same infection that made him septic, ecoli. So he was already being treated for it. They will watch it for the next 7-10 days. But it was really nice to be able to touch him, kiss his head and face, and talk to him.

Please pray that Harrison's lab results will continue to reveal the KASAI is working. Pray for his continued recovery from the surgery and that we will be able to bring him home soon.

Praise for a good recovery and that there are some signs that this surgery may be working.

Thank you again to everyone who has provided meals, called to say they were praying for us, watched Emily, and were there in any way to show support and love. We really appreciate it and it has been wonderful.

End of Week 4 Update!

2010-01-09T17:20:00.008-05:00

Wow! It is hard to believe Harrison is a month old. I feel like I have missed so much of his life trying to absorb all that it is happening. So much happens so fast and this past week's events are a true testament of this.

Harrison was diagnosed starting last weekend with an "infection in his blood." After realizing that this was also called sepsis, I quickly understood the seriousness of this type of infection. These infections are often seen in preemies, babies, or patients that spend a long time in hospitals. These types of infections can take the life of a patient quickly because they start attacking all the organs. High Dose antibiotics were immediately started and given intravenously but these also have side effects such as hearing loss if amounts get too high. Well Harrison was on three antibiotics but they had to hold off on one because the levels got too high. Harrison went immediately from looking like a healthy baby recovering from surgery to fighting for his life. On Saturday while my step dad and I were visiting with him,the nurse and I were turning Harrison from one side to the other, changing his diaper, and taking care of his other needs as we always do every 4 hours. As I was changing his diaper, I looked up and he was blue in the face. I immediately looked at his levels on the monitor and they were in the 30's (they should be at least 70 or above)The nurse immediately asks the respiratory therapist to start bagging him (breathing for him with the pump)and then another nurse steps in to help. I step back and watch and so does my step dad. We watch the monitors as his heart rate drops into the 20's his respirations drop into the teens and sometimes lower, and his oxygen levels drop into the teens. It seemed like an eternity but in reality was about 5 minutes but he slowly recovers and stabilizes. My step dad and I stay until we see he has stabilized and we both leave the nursery somewhat numb. We took a few minutes to debrief ourselves from such a traumatic site. It was a realization of how quickly the infection took over his body and how sick he really was. Jamie and I decide to stay the night since things were so shaky.
The next day (Sunday)brought on an entirely new set of worries I pray that no parent ever has to deal with. We were approached by drs to discuss all of Harrison's issues. They asked Jamie and I to essentially look at the big picture and Harrison's quality of life. They were unsure if he would be a liver transplant candidate and were unsure of his neurological development. They said we needed to discuss this as a couple and decide what we felt was the best route for Harrison. I knew what they were saying without saying it, but I was also a little confused. I knew that Cat Eye Syndrome doesn't always present with neurological issues, it actually says that most fall in the normal to mild mental function, and Harrison's cranial ultrasound showed no abnormalities. But my next thought was why would the GI doctors offer to do the KASAI procedure which is only a temporary procedure to buy time for a liver transplant if he wasn't a candidate and based on what I had read, nothing would eliminate Harrison from a liver transplant.So I just sat back and thought was there something I wasn't being told? Shortly after this conversation, low and behold the GI doctor comes into to discuss the KASAI procedure which was to be done this past Wednesday. Again, I was confused, but he then told me that Harrison would qualify as a liver candidate but they didn't discuss this yet because it was not an issue at the time. I realized then that we needed to get a meeting with all the doctors so they could communicate with each other and we could get all the facts. So I requested that this meeting take place before Wed's surgery.

Meanwhile, I ask the GI doctor to review this information with Jamie. As he is doing this, I look up at Harrison's monitor and his respirations were below 10. They should at least be in the 20's. I looked at him and he looked so peaceful but then his heartrate dropped and I quickly called the nurse who called the respiratory therapist. I looked at him again and he was blue from the chest up. I had this eery peace over me during this whole process. I really felt that God was going to give me an answer through this so I asked the nurse what could I do. She said, tap his feet and rub his chest. AND I did..they suctioned his lungs and they were full of fluid from the infection..and so again Harrison recovered but more quickly than the day before. I knew then that Harrison's journey was not over, and I was to keep fighting for him. No doctors words could tell me differently.

That night my mom and I decided to stay overnight just to be close to him. Again, we were visited by another nurse who began to question me on the same issue discussed earlier that morning. She gave a grim picture of liver disease and wanted to know where I stood with Harrison. I reminded myself that these doctors and nurses are human and so I responded with "right now, we are dealing with the infection and I can only do this one step at a time." I told her that through this whole process my gut instinct had always been right and she wanted to know what my gut was saying now. I told her that all I knew was that "right now he is fighting this infection and that we would take it one step at a time." At this point I really felt that these doctors and nurses were losing hope in my son so now I was nervous to meet with everyone on Tuesday to discuss him. I was not scared of them, just the news they might bring.

On Monday, Harrison had a much better day and he was showing signs of recovering. By Tuesday, his blood culture was negative for infection and I knew we were on the upswing.
Tuesday afternoon Jamie and I met with all of Harrison's doctors and nurses which took up an entire conference room. I expected to hear what I had been feeling all weekend.
But I was wrong..the neonatologist began by discussing how all of Harrison's issues could be surgically corrected except the liver issue. And that it was a process that would eventually lead to a liver transplant. I knew then that maybe they had hope that Harrison could do this. Then the surgeon and GI doctors reiterated the surgery of the KASAI and gave its prognosis and we discussed our questions about prognosis of liver transplant recipients. I was quickly told that the information I had received from others was not the standard and that outcomes were actually better than what I had been told. I gave them every piece of information that I had read, heard, seen, or dreamed, and nothing I gave them even gave them the slightest doubt that we shouldn't go through with the KASAI. They told me I was right in taking it one day at a time. I was so relieved that I couldn't believe my own ears. I really couldn't believe how things took such a turn. My mom had been saying that this meeting was God driven and that it would provide answers for someone and it would help someone. I thought nothing they could say would change my mind that I was going to keep fighting for Harrison and the funny thing is that what they said didn't change my mind, but it reassured me that God's hand was definitely in this and I already knew it. His surgery was postponed til Monday to give him time to heal a little more.

Throughout the week Harrison continued to get better, and as of today Harrison is now on room air. He even acts different than before the surgery but in a good way. Something took place in Harrison throughout all of this and all I can say is it definitely the power of prayer. So please continue to pray for him and this upcoming surgery. We will not fully know how well this procedure works for about 3 months after. As the surgeon said, it is like watching grass grow.

Praise- I started this blog so that others who might have a child with Cat Eye Syndrome might find help, peace, comfort, or friendship in Harrison's story. I was contacted by someone whose child is 6 wks old and has CES. I am elated to be able to help in any way I can. I have also been contacted by others who have children with similar anomalies and I am comforted in knowing that I am not alone in this. Praise for Harrison's recovery of the infection as he will be treated for 21 days.

Pray for the upcoming surgery as it will last between 4-6 hours. Pray that the doctors hands will be guided by God for they are creating a way for bile to flow with their hands, but connecting it to something that is seen only at the microscopic level. Pray for Harrison's recovery and that it is uncomplicated. Pray for Jamie and I as we enter into this next stage of Harrison's journey. The answers will not be known immediately and patience and understanding is all that we can offer.

Thank you to everyone for your kind words, prayers, support, meals, cards, and emails. They mean a lot to my family and I.

Week 4- And Yes I can say HAPPY NEW YEAR!

2010-01-01T19:54:00.009-05:00

Well- this week has brought a new year and some news that is not what we wanted but in the end is obviously what God has planned for Harrison.

After Harrison's second surgery, Doctors felt pretty sure Harrison had biliary atresia. It was found that he had no gall bladder and his liver looked like it had the beginning stages of scarring. But a liver biopsy would confirm. So on New Year's Day, the liver biopsy results came in and confirmed what I already knew and most of us already expected, but definitely not what we wanted..biliary atresia. Harrison is now scheduled for a procedure called the KASAI procedure where doctors will attempt to create a way for bile to flow. This procedure is not a cure nor is it guaranteed to work it really just buys Harrison time before a liver transplant has to take place. If you know anything about liver transplants, they are one of the most expensive medical procedures done in medical science and outcomes and prognosis are not superb, but we will take one day at time. Harrison is currently trying to recover from his last surgery and things are looking better, but they are having to start very strong antibiotics because blood results show a possible infection. We should know more about this in two days.

With all this being said, you might wonder why I can even utter the words "Happy New Year." And so my response is: It is only by God's grace. But I would like to share with you what he has revealed to me in all of this:

1. Every day that Harrison is here is a blessing, and it is ordained by God. There is a reason and purpose and I try to find it.

2. Every day that Harrison is here is one more day that more knowledge is gained about Cat Eye Syndrome, biliary atresia, and liver disease all of which are new and highly researched fields that are needed to save lives.

3. Every day that Harrison is here another doctor, nurse, family member, or friend, learns of his rare situation and can grow from it.
Ex: Today Harrison had a new nurse Andrea. She said she fell in love with him as soon as she saw him. I could tell by the questions she asked me and the tone of voice she used she really understood the seriousness of Harrison's condition but wasn't sure how I was taking it all in. By the end of the night, she finally stated she couldn't believe how well I was doing, but was concerned I was trying to hold it all in. I told her I was at the point of taking every day for what it was and that I was definitely aware of how serious this all was, but it was not in my control. She told me she was there for me and that is exactly what I should do is love Harrison right now and today and cherish it. She was so sweet and she hugged me and said she immediately felt connected to Harrison and that she was there for both of us to cry and cheer on. She is another angel sent by God to help me another day.

4. Throughout this whole process I have felt the need to research out and hunt for as much information as I can on Harrison's condition, symptoms, anomalies, etc. I did all of this because I had to know what could be done to "fix" it but I also had to know what I might be facing before it was said. If I saw it couldn't be fixed, then I panicked and then I would relinquish my fear to God and come to terms with what lies ahead. But I have also been faced with the most serious of all anomalies,biliary atresia. What Harrison has isn't curable, and no research will ever tell me how long my son will live or what the outcome of any this will be. For the first time in my life, I can't run from this news nor can I push it away. I can't control the outcomes, but I also can't let what I know swallow the joy that Harrison brings to me today. This has been a HUGE step for me.

5. I have also seen how much family, friends, and prayers are exactly what I needed. I have loved being surrounded by prayers and family members. It seems strange, but being in a crowd of people I know care and love my family has been very uplifting and help me see that I can do this, no matter what. So if I have sat in your living room or at your dinner table for Christmas this year, or you have sat in the NICU waiting room scrubbing for 2 minutes followed by the donning of the infamous yellow thermal suit, know I am thankful for those moments where your back rubs, hugs, tears, prayers, food, jokes, and laughter helped me see the light at the end of the tunnel.

6. I have also seen that some of the people that God has placed in my life such as those who also have children with special needs we now share a common bond that I never realized would connect us. I now understand so many of things I did not before, and I believe there is a reason we met. I am thankful for their support and understanding.

7. God placed me at a hospital that is fairly close to home, it is the top hospital for liver disease in the Carolina's, it is the largest hospital that does pediatric liver transplants in the Carolina's, because of this the surgeons have operated on biliary atresia more than Duke, Wake, and other big name hospitals in the region. He has placed a surgeon in the care of Harrison who says that he treats every patient as if it was his child he was operating on. He is thorough, wonderful, and hopefully optimistic. And this hospital has only been in place for 2 years..amazing.

So this New Year will be great because God is in control and not me. My New Year Resolution is live life for today for God has blessed me with it. I promise to not dwell on what the future may hold, because I want to enjoy the glory that God has brought today.

Please continue to pray for Harrison and our family. Praise God for what he has given us today.

Surgery #2

2009-12-29T20:32:00.003-05:00

After having a HIDA scan, an upper GI, and barium swallow test the following was determined:

HIDA scan showed no bile flowing so there is an obstruction but they cannot confirm biliary atresia or other causes without doing an interoperative procedure to explore what is there.

The Upper GI showed that Harrison did have malrotated guts which requires surgery.

The Barium Swallow Test showed that Harrison doesn't aspirate (get food into his lungs) when he eats, but that he does have a poor suck and small swallow. This is probably due to low muscle tone and that fact that his heart condition makes it so much harder to do anything.

So the plan to find answers and resolve issues is to do the following in one surgery.

1st- They will repair the malrotated intestines and remove his appendix to prevent drs from misdiagnosing later in life due to the appendix being on the wrong side of the body.

2nd- Through the same opening they will peform a liver biopsy to send to the lab to help diagnose the cause of the liver issues.

3rd- Through the same opening they will do a cholangiogram where they will inject die into the gallbladder and watch it flow. If it doesn't go anywhere or stops it will confirm biliary atresia.

4th- They will insert a feeding tube into Harrison's stomach. Due to his difficulty feeding and a future of several major surgeries ahead, he needs to get bigger and stronger so this will allow for him to receive his proper caloric intake without him having to burn so many calories trying to eat. He can still eat by mouth to continuing strengthening those muscles but it won't be his only way to receive his nourishment.

All of the procedures are being done at once so that Harrison does not have to go through so many different procedures.

Considering the fact that Harrison has Cat Eye Syndrome, polysplenia, TAPVR, and malrotated guts, the signs are all pointing to biliary atresia. If this is the case..Harrison will undergo another surgery the following day called a KASAI procedure where doctors will try to create a way for bile to flow. This procedure is only temporary and Harrison will need a liver transplant at some point. It could be shortly afterwards if the procedure fails or even if it works, or it could be years after if the procedure works. There is no way to know for sure. Harrison's other issues may also complicate the procedure and its results. The KASAI is not 100% successful.

But with all that being said God has a plan for him and neither the doctors or us can know the answers ahead of time. I have a peace about all of this at this time. Whether it is a calm before the storm, or God's way of letting me know it will all be ok I am assured that God's hand is in it all. I pray that HE hears the desires of my heart.

Please pray for a surgery that is successful and uncomplicated. Also if it be God's will that Harrison will not have biliary atresia and that his liver issues can be resolved with ease. Please pray for the surgeons and all those involved in Harrison's care.

Praise- Emily got to visit Harrison for the 1st time through the help of some people at Levine Children's Hospital. For the continuous love and support shown to our family by friends, family, and even those who do not know us.

Week 3- Trying to find the faith of Job

2009-12-26T09:40:00.005-05:00

Oh God! I come to you in desperation, heart aching, for my son Harrison. I pray that if it be your will that his precious life be spared of the diagnosis in which the doctors are saying. Lord I am crumbling, falling apart, and dying on the inside. I need the strength to carry on, and I need the faith and energy that only you can provide. I praise you for the beautiful child that he his, and I know that he is yours and that you have given him to us to love and raise in your likeness. But God, I want him to grow and be healthy..if it is your will please bless him with this opportunity. Let his little body be a testament of your power..In your name I pray..
Lisa

Week 3 has brought the tidal wave of all decades. The week we were told we would be bringing him home is the same week we learned he may be fighting for his life.

Liver- After feeding for several days, doctors noted that Harrison's stools were not the consistency or color they should be. His lab results showed elevated bilirubin and liver enzymes. A ultrasound of his liver was done and on Christmas Eve we were informed that further testing will be needed to rule out biliary atresia. Biliary atresia is not curable and is a liver disease. It requires a surgery pretty quickly in an infant's life and the surgery only works in about 50-80% of patients. If it is successful, at some point a liver transplant will be needed. 50% of infants who have had this surgery have had a liver transplant by the age of 2. Then you deal with the prognosis of a liver transplant. In Harrison's case, his prognosis with the initial procedure is considered not great due to the fact he has other anomalies such as the heart defect and polysplenia. He will be undergoing a HIDA scan to be followed by liver biopsy and an interoperative procedure to diagnose or rule out Biliary Atresia. He also has what appears to be 2 cysts on the biliary tree. These can be choledochal cysts or something else but choledochal cysts can occur with biliary atresia. In addition, another test has to be performed to look at malrotation of the gut which can also occur in these cases. Please pray that test results will reveal exactly what the doctors need to see.

As for the other areas, it all seems so minor at this point. Nothing has really changed other than he will be at full feeds at noon today. Praise God! Please pray that he will get bigger and stronger.

Prayer- Pray that God's will be done but also pray for a miracle. Pray for strength for Jamie and I as we face the road ahead. Pray for Emily as she tries to understand it all. Pray for wisdom and knowledge of all the doctors involved.

Praise- For love and support of family and friends. It is a reminder that we will make it and get through it.

This is the hardest thing I have ever had to write. My mind is in turmoil, my heart is in pieces, and my stomach is in knots. Christmas has been a blur, and happiness seems a million miles away. Yet I feel selfish to wish for anything better for myself while my child's body struggles to maintain life itself. Love is powerful and I am searching for healing powers of God's love as I give all that is in me to my family and son.

2nd Week of Life

2009-12-20T21:39:00.008-05:00

Week 2 has brought about many great blessings from God!
Cardiac News- Cardiologists determined that the PDA had closed enough that they felt it was safe to do Harrison's open heart surgery at around 3-6 months. Praise God! They would like for him to be a little bigger to give him a better post operative prognosis. This means he can come home before surgery. It also means he could finally start eating by mouth. Hallelujah.

Spinal Cord- Finally met the Neurosurgeon who was not very helpful in answering my questions on the possible tethered spinal cord. He claims he is pretty sure Harrison has a tethered spinal cord but an MRI will be needed when he is bigger to confirm. He says that I have enough to be concerned with without adding this to the mix. I figure there is a reason why he feels I know now what I need to know so I am trusting in God that this too has a purpose.

Feeding-For the first time since he was born Harrison is allowed to be fed my breast milk. They started him out at 9ml (30ml is equal to 1oz). They wanted to see how he would eat. Cardiac babies often struggle with feeding due to the fact that is an exhausting feat. So they said that Harrison needs to be able to eat 2oz and keep it down before he can go home. Harrison did well with his first feeds and the Cardiologist was surprised and so was the neonatologist. So they decided to increase his feeds by 3ml every 3 feedings. (He gets fed every 3 hrs). Having fed Harrison, I was concerned that this might be too fast. Watching him eat is sometimes hard. He works so hard to get it down that when he is finished he is exhausted and often sleeps at the end of the feeding. Starting at only 9ml and knowing you have to get to 60ml before he can go home seemed daunting and almost impossible. I have prayed every night that his feedings go well. If he doesn't get it all down in 30min that have to feed him by inserting a gastric tube. I really didn't want him to have to do this. Well, 4 days after his feedings have started we are now up to 1oz (30ml). God has answered my prayers. We are 1/2 way there. Every time they increase his amount, I am worried, but he has proven me wrong every time. He has done it and without a gastric tube. I can only pray that this will continue.

Stats- Harrison's vitals (oxygen, respirations, and heart rate) have been good since birth until Saturday. He was DESATing (oxygen levels dropping) more in a couple of hours than he had in his entire 12 days of life. I mentioned this to the nurse who said she would ask the Dr to come take a look. Dr came immediately and ordered a chest x-ray which showed some haziness (fluid). So she ordered that his diuretic be increased since he was retaining fluid. His heart condition causes his body to retain fluid. We left to come home and I was worried, but when we called to check his progress, he was no longer DESATing and his levels were returning to normal. The meds seem to be working..Praise God for taking care of my little man.

Colostomy- Seems to be doing well..except his little bag keeps leaking and his skin is getting raw from the constant reapplication of the adhesive. :( Hopefully we will get a good one to stick.

Eyes- Opthomologist returned to check his eyes undialated for coloboma. She said she did not see any coloboma of the iris and has declared him coloboma free. Praise God for another answered prayer.

Highlight of the week- Today Jamie and I went to visit Harrison and we got there just in time for his feeding. He did well and was very alert. He was looking around and wide awake. We laid him in his bed to watch and play with him. When I picked up a stuffed mouse that was given to him, I held it out in front of him and wiggled it playing with him. He was watching it intently and reached up to grab it. It was so precious! It was a fantastic reminder of God's little miracles in such a beautiful and blessed baby. Jamie and I just looked and each other and smiled.

Please pray for Harrison to continue to grow stronger and do well with his feedings. Also pray for the doctors and nurses who handle his care. Pray for the wisdom and knowledge to continue with his care. Also pray for my other baby Emily. She has been battling on and off again illnesses for the past couple of months. She is such a beautiful little girl with a great and loving heart. She has not been able to see Harrison due to hospital restrictions and she is excited for him to come home. Pray that God will give her the strength to fight off these illnesses for good.

Praise- Praise for the blessings and great news we have received this week. Praise for the wonderful church members who have provided meals for my family. These have been wonderful and such a blessing. Praise for friends and family who have come to visit, call, send cards,emails, etc. They warm our hearts. Praise for my mother who has been my chauffeur, my bedside buddy, my back up baby sitter when Emily is sick, my partner in prayer, and my second brain when talking to doctors. She is wonderful and I cant express my gratitude or love for her in words.

Cardiac News

2009-12-16T21:19:00.003-05:00

Well today began interestingly enough. I started not feeling well yesterday afternoon. I had body and muscle aches and began to worry that I might be getting sick..I immediately began crying at the thought of being banned from seeing Harrison. After getting home, I took my temperature and was running a low grade fever. My stomach turned at the thought. Being only a week out from delivery I called the 24 line of my dr. They were concerned due to the list of symptoms I was having and I was instructed to call back if my temp went above 100. I was at 99.6. I was also scheduled for an appt at 9am today. The whole way over I felt awful. I was checking my temp and it was all over the place but I even got a reading of 100.8 and of course I cried just knowing they were going to tell me I couldn't go see Harrison. When I arrive, the sign on the door instructs me that I have to knock on the back door since I have a fever and aches. So the nurse makes me wait out in the hall at the elevators and then returns and makes me wear a mask through the office. Even when she put me in the room, she told me I had to keep it on..Dr came in and told me I didn't have to wear it that my temp was only 99..YAY! She checks out several areas of concern and pretty much diagnoses me with.."You have a lot going on, your body is trying to heal from delivery, and your body is worn out." I get a couple of prescriptions and was sent on my merry way..I was so happy that I could go and see my baby I just cried. Thank you God!

Today was the day of the repeat echo cardiogram to see if his PDA closed with the second round of meds..He was also scheduled for a CT scan of the heart.

Well..the echo revealed that the PDA is a little smaller but not closed. So this changes the course of plans.

CT scan was done and the cardiologist said they will meet in the morning to discuss the results and look at Harrison's case. We should have a better idea of when and where the heart surgery will take place. Based on the collection of information I have heard, I am assuming it will sooner rather than later due to the open PDA.

Otherwise, Harrison looks good..he has lost a good bit of weight due to not being fed other than through an IV. He was born at 7lbs 6oz but weighed 6lbs 12 oz yesterday. After stopping the diuretic, he weighed 6lbs 15oz today.

Please continue praying for my little man..Pray that God will give the doctor's wisdom in how to best care for Harrison's heart defect.

Harrison's 1 Week Birthday!

2009-12-14T21:43:00.005-05:00

Well today Harrison celebrated his 1 Week Birthday! As his gift..he was able to wear clothes for the 1st time...YAY! He looked as precious as ever..even though the 0-3 month clothes swallowed up his little 6lb body. (He has lost weight the past couple of days)

The past few days have revealed many test results which have left me in awe of the power of God. When I was pregnant, I truly felt that God's plan for Harrison would not be revealed until he was born. I had a strong feeling that when Harrison was born that he would reveal to the world the true powers and greatness of our God. And that is understatement for what has occurred that past couple of days.

Eyes- The opthomologist came and examined his eyes and said that all the major structures (including the pupil which is where the supposed coloboma might be) looked normal and in tact..No colobomas to the structures of the eye that might cause vision problems. HALLELUJAH! She will return on Sunday to examine his eyes undialated to make sure there is no coloboma of the iris..She suspects she will find nothing..Please pray..

Heart- The follow up echo to check to see if the PDA has closed revealed it was smaller but still not closed. Cardiologists agreed to do another round of the drug to close it and a follow up echo will be done on Wednesday. The cardiologist says that in term babies that if is hasn't closed up it usually doesn't but they are trying anyways..The neonatologist says that often times the 2nd dose does close the PDA..Conflicting views..but I believe God has the answers not man. :)

Tethered Cord- The head neurosurgeon came to evaluate Harrison and said his movement looked great and there was not great concern at the time. He wants to do a follow up at a later date (probably a MRI) but did not even list a date for that to be done..Praise God for my baby's great movement that is strengthened by the ONE above.

Bladder- Harrison was showing signs of producing more urine on his own and he had very little residual when being cathed. The drs ordered that his cathing be reduced and that the urologist be contacted to see if the cathing should be continued. Urologist ordered that all cathing be stopped due to the great urine output..Thank you Lord for my little man being able to do this on his own.

Cranial Ultrasound- Revealed normal results..no further testing required of his head and brain at this time.. I thank God for such great news.

overall stats- Harrison has been losing weight mostly because he is allowed nothing by mouth since birth. He is fed intravenously and it is monitored closely. He is also on a diuretic to keep fluids out of his lungs. His heart rate and oxygen levels have been good and his respirations vary, but they are expected to due to the heart defect.

The only test at this time that is pending is the CT scan of the heart..it should take place some time this week. Once this and the follow up echo have been completed we should have a better picture of where we are headed with this surgery.

Please pray that God will continue to provide Harrison with strength as we prepare for this next step..Also pray that God will be with his doctors as they continue to monitor him..and of course pray for our family as the holidays approach..It is difficult to have a baby in the hospital and another at home..We are often torn..but I also remind myself how blessed I am to have my daughter in my life and I try to cherish each moment.

Praise God for such wonderful news we have received and for the family and friends who have been so generous and kind. Praise God for my mom who has sat with me at Harrison's bedside as all of this flood of information is revealed and for caring for me and my family daily. And of course Praise God for such a beautiful little miracle who is already serving as witness to his great powers..I am humbled..

Harrison's 1st Week of Life

2009-12-12T22:01:00.004-05:00

Harrison's first week of life has been quite overwhelming. I am going to attempt to keep weekly updates but I am taking it one day at a time. So let's begin..Harrison was born and had APGARs of 7 and 7. His oxygen levels were not great after the initial assessment and due to his heart defect he was taken to the NICU. Nothing is harder than watching your baby be born to only be taken away quickly. Even though I knew this would be the case, it only prepares you..it doesn't soothe the pain. Upon initial assessment it was determined he did have imperforate anus. Harrison was born at 11:20am but it wasn't until 6pm that we were finally able to go see him. They had difficulty putting in his IVs. Also, during this time he had an echo done on his heart to assess the defect. His heart defect of TAPVR was confirmed but there was an additional concern..the arteries branching from the heart to his lung were doing so in an abnormal way. The duct that closes in all babies after they are born is located next to this abnormal connection. So there was concern that when it closes there could be other issues requiring more immediate surgery. So it was determined that he would be monitored closely and watch him for the next few days to see what happens as the artery closes. He was also being given room air to help him in is breathing and a gastric tube was inserted to help remove stomach contents and any air. The following day he has the room air removed and he was breathing on his own. Praise God! At this point..everything becomes a blur..There has been so many doctors and so many tests that I can't remember what happened when or where so I feel a list would be easiest and fastest so here it goes..

Imperforate Anus- They decided that they would give it a few days to see if he passed stool out of an opening they couldn't see or somewhere else like his bladder. And he did ending up passing stool out of his urethra meaning the connection was either to his bladder or urethra. They will determine for sure later on. It was then decided that a colostomy was needed so he could pass stool and he had surgery on Thursday to give him a colostomy. Surgery went well and he now has a colostomy. After speaking with the surgeon, we were informed that he does have an area that indicates that an anus should be there which means there is more than likely muscle there. This is a good prognosis for when they actually do the repair of the imperforate anus which is expected not to occur until he is about 10-12lbs. Please keep this in your prayers.

TAPVR- This particular type of defect has 4 different categories and Harrison has the most rare form which is to the coronary sinus. BUT although the rarest, it is the one that doesn't require immediate surgery after birth. Thank you God! Due to the imperforate anus, and the constant monitoring, cardiologists have had more time to really take a look at his heart. They have done a repeat echo that showed the duct that should be closing is getting smaller but it is still not closing so they are administering medicine to try and close it. He has another echo at 6am Sunday morning to see if it has closed. We will know more about his surgery at this point. They have also scheduled a CT of his heart and lungs this week to take a 3d look at his heart to determine exactly what needs to be done before his heart surgery. Again..the extra time has allowed them the extra testing to really workout the details of his heart surgery..I totally believe this is the hand of God!

Renal Scan- Liver and kidneys looked great, but test reveal and spleen and several smaller ones. After doctors reviewed results, it was determined that the polysplenia has no known problems.

Ultrasound of Bladder/kidneys- Revealed that the bladder was not emptying fully. Could mean he has neurogenic bladder which would require catherization to empty bladder. Monitoring of wet diapers along with catherization to see how much is left over is being done as well as a ultrasound of his spine was ordered. Most recent reports show very little residual urine so keep the prayers coming that progress will only continue..Praise God for that.

Ultrasound of Spine- Revealed a possible tethered cord at L4. At first, I was terrified of what this could mean..but after meeting with neurosurgeons, it was determined that even if it was a tethered cord, that prognosis could still be very good. A MRI will be scheduled at some point to take a better look at the spine. Again God's hands are on my little man.

Eyes- It was stated that there is a possible coloboma of the left eye. The ophthalmologist will do an eye exam on Sunday. We should know more by then. Please pray for his eyes.

Pediatric Geneticist- Identified all of the above and mentioned some other cosmetic things not noticeable to most, but she is currently researching the polysplenia and tethered cord to see if it has any relation to Chromosome 7 which is unknown as to what it may cause. She also said he looks very proportionate (thank you Lord) and that she has ordered an ultrasound of his head just to check. Please pray that this test will reveal nothing abnormal.

So overall, Harrison has seen about 7 different specialists at this point and he is only 5 days old. I praise God for everyone who has lifted him up in prayer because I see miracles everyday in him. I have seen the presence of God in every day of his life in some way. For example, most of the time you never know when the doctors will show. But by God's providence, I have been at Harrison's bedside almost every time when the doctors have come to assess or provide results. I can only thank God for the perfect timing of those meetings. The most difficult part of this journey is not being able to bring him home. The hospital does not allow children to visit so his big sister can only see him through pictures and we have to leave her so often. She has been wonderful and I thank God I have wonderful family and friends who are willing to help out. Please continue to pray for our son, for his journey is definitely not over. And please pray for my family. This is a hard road, but I believe it will only make us stronger and draw us closer to the Lord. We appreciate all of the thoughts, comments, prayers, phone calls, and cards. And although we may not return the calls, emails, etc..it is appreciated and brings a smile to our face and warmth to our hearts.

My Birth Story

2009-12-08T23:45:00.005-05:00

Well..I woke up Sunday to signs of labor. Some bleeding and contractions but nothing to call the doctor. The funny part is that on Wed I was no where close to having a baby, no dilation or thinning of cervix. So I went to church and lunch with my parents all while having some contractions every hour or so off and on. I came home and finished cleaning the house and still nothing seemed to be progressing. Evening came and I started having contractions about 15-30 min apart but still not consistent. I went to sleep about 10:30 and woke up about 12am to contractions again but they felt a little stronger. But again, no pattern could be set but they were occurring enough that I couldn't sleep. So I got up and took a bath, still the same thing. I went down stairs and finished packing and decided to call the doctor at 5am to make sure that these contractions would not be putting the baby in danger. As expected they said call back when they are 5 min apart for an hour. I got frustrated and laid down and dozed off waking here and there to contractions. Emily and Jamie woke up about 6:30am Monday morning to get dressed for school and work. I decided to go get in the bed and try and sleep some more. I went upstairs and laid down and another contraction came and BAM..my water broke around 7am. So I called the dr back expecting to be told to go to the hospital but instead was instructed to time my contractions and detect fetal movement. Going on my previous labor with Emily, I knew that if we didnt act fast I would have this baby at home. LOL! Well as I waited on my dad to get to my house I was having to breathe through these contractions and they were about 5 mins apart. Finally the nurse called back and said go to the office. I was like that is stupid..why go there when my water has broke so off we went. On the way..the nurse calls back to ask about timing of contractions again..well they were now 3 min apart and I could tell she was nervous considering the circumstances of the baby and that 2nd babies come in about 1/2 the time of the 1st. She said she would call me back and let me know what the dr says..Well she called back and said the dr still hadn't called but want to know contraction time which was ranging between 2 or 3 min but they were now impossible to talk through. She hung and immediately called back and said the dr said go straight to the hospital. HALLELUJAH! FINALLY! EPIDURAL here I come..:) So we arrived and I met my mom at the front and was escorted up. They took me in and said they would need to monitor me for about 30 min before anything could be done..I was like "WHAT! I have to endure this for 30 min..well then she couldn't get the monitor to pick up my contractions..I was like "You've got to be kidding me. LOOK at my face..does it look like I am not having contractions." Then she decided to check me..I was ONLY 2cm dilated and it was 8:40am. I was then told I had to get to 4cm before an epidural..I thought I would die. By this point, contractions were 2 min apart and coming stronger than ever..I was breathing so hard that when they put the oxygen mask on me I was sucking the plastic together and couldn't breath..GO FIGURE! LOL! AND THEN..the worst part is that they were still trying to get the 30 min of monitoring and I was having to endure this while laying on my back..WHO CAME UP WITH THIS IDEA TO LABOR ON YOUR BACK? Hello...isnt supposed to be gravity working with you? I was about to go out of my mind. Meanwhile, I am begging for an epidural, they can't get the monitors to get good reading's, the baby's heartrate was all over the place, I am suffocating myself with my own oxygen mask, my husband is signing mine and his life away, the nurse is frantically trying to set everything up while dealing with my crazy self, and my mother was trying to help me get a grip, and my contractions were one right after the other..THEN the anesthesiologist arrived, but she says she can't give me anything until I have so much IV fluid in me...WELL I wasn't close considering I had just got the IV so she preps me anyway to have it ready. So I get to sit up..HOORAY! She gets everything ready and then tells me she can only give me a test dose. WHAT? She gives me the test dose while I am getting the rest of my fluids..I do fine and she gives me my 1st dose of the epidural...HALLELUJAH!! Then the dr steps in and says lets check your progress. She said "YOUR COMPLETE!" I was like "what..what do you mean complete.." She said I was fully dialated and ready to go..I was shocked..the nurse looks at my chart and says 71 mins it took me to get from 2cm to 10cm..WOWZER! I got lucky in getting the epidural b/c they dont give it once you get ready to push..Thank you Jesus for the timing..So as the epidural sets in..I am gaining my sanity and the dr has me start pushing..Again..Baby's heart rate is showing signs of distress..We try a couple more times..same thing..we rest for a while..change positions..and still not making much progress..so dr says prep the OR..she then says we are going to try a vacuum..but we are doing it in the Operating Room (OR)SO off we go...Jamie is getting dressed to come in..and the dr has me prepped for a c-section..I was given an extra dose of epidural just in case of C-Section and man that was quite some med..completely numb. She told me give it everything I had and we start pushing again and then baby Harrison entered the world with the help of the vacuum at 11:20am. He cried they NICU team took him and assessed him and then left with them after he got a kiss from his mommy. :)Meanwhile, the dr had to spend a little extra time on me due to some problems with delivering the placenta. But all was well in the end..I was then rolled to post partum recovery room and the waiting game to hear news on Baby Harrison began..

38 Week Appt

2009-12-02T22:44:00.002-05:00

So I went back today for my 38 week appointment. Although I have been having Braxton Hicks contractions and painful ones too, I knew that there would be no cervical change. This made me nervous since they had been talking about an induction at 39 weeks. Well, I was right, baby's head is not engaged and no cervical change. BUT..the dr feels there is no need for an induction. I was actually quite relieved. I am much more comfortable with letting my body do what it knows how to do. He said everything looks good. So I left feeling very much relieved that at this point there is no need for an induction. I go back next week for a growth scan on Wed and then my 39 week appt on Friday. And my little man was once again dodging the doppler as the nurse was trying to get his heartrate. But once she did get it, it was great. The past two weeks his heartrate has been the best its ever been. And on another note..I think we have finally reached a consensus on a name.....it is Harrison James. Of course as with all things..I leave it open and subject for change..but for now it is what we are going for. Keep the prayers coming for my baby boy because he really likes being inside his mommy's tummy.

36 Week Appointment

2009-11-18T18:21:00.002-05:00

Well, today I went for my 36 week appointment. Blood Pressure was great (114/68), no weight gain since last week, iron levels good, and no protein, sugar, or bacteria found in urine. Today they checked me for Group B strep and checked for dialation and effacement to see if I am showing signs of a favorable 38 week induction. But my little guy likes hanging out. I am barely a fingertip dialated and no thinning of the cervix yet. So 39 weeks is looking like the more favorable option. Please continue to keep my little man in your prayers as he continues to grow. I am getting more and more anxious for his arrival.

35 Week Dr Appts

2009-11-11T19:05:00.003-05:00

Well, today was supposed to be a day off from school, but instead, it was filled with appts. I had a hair appt @ 9am and that lasted until 12..met Jamie to eat lunch and then my 1st dr appt was with the diabetes center @ 2pm. My fasting numbers have been running high, but we think it is because I don't check them as soon as I wake up. So I guess the next week will be a test..I love going to these appts because they tell me that having ice cream as my bed time snack is good for me to have. It is the best thing to hear. I finished up here at 2:40 and my next appt was @ 2:45 with the High Risk Women's Institute for an ultrasound/growth scan. This place is literally in the same office as my diabetic center but the funny thing is I have to go back to the same front desk people and sign in AGAIN and sign the exact same payment agreement that I signed when I came for the diabetic appt. But I love going here b/c the staff and doctors are just wonderful! They know you by name, they take care of everything for you and are just genuinely caring people.
So we went in for the ultrasound and the tech begins her measurements. Junior(nickname for the baby) has definitely grown in the past 3 weeks and he now weighs an estimated 6lbs. His head measures at 37 wks(quite a noggin)but his femur bones only measure 32 weeks..That is 5 weeks behind, but they have grown since the last time. Of course I really want to see his little legs grow and catch up, but the Dr. reminded me that as he gets bigger the measurements become less accurate. I also had them look for some of the anomalies that are associated with Cat Eye Syndrome like kidneys, ears, stomach and bowels, and anal atresia. Now most of these anomalies cannot be detected by ultrasound, but sometimes they can see problems. As always, we tried to get good 3d pics of his face, but he either turns at an odd angle or puts his hands in front of his face. But the dr said he has 2 kidneys, stomach appears normal, and she tried to see abnormalites like anal atresia, but that is rarely seen but she said she didn't see anything abnormal. He did like showing his feet and toes..so precious! The dr was also able to get a picture of one ear..as far as to its location, that couldn't be determined because he wouldn't keep his head turned right. The other side of his head is lodged against my pelvis so we couldn't see an ear on that side. His heartrate runs a little on the low side (114) but it usually picks back up to 125. Overall, things look good and another appt was scheduled for Dec 9th although the dr says she doesn't expect to see me because I will have him by then. YIKES! The Genetic Counselor also came in and gave me a copy of the genetics lab report and I read and we discussed all the genetic lingo. Not only does his fragment chromosome have a piece of Chromosome 22 which causes Cat Eye Syndrome, but it also has a piece of Chromosome 7 which they have no literature to tell them what it might cause. So I leave this appt @ 4:00 and off I head to the 4th floor for my OBGYN appt @4:15.
At this appt I learned that the plan is to induce at 39wks but a more specific date will be determined as they get closer. I was told that if my cervix is favorable, I might possibly be induced as early as 38 wks. YIKES! I asked him if the heartrate being low made me more at risk for a c-section and he said that is a baby boy for ya. He said he was not concerned at all about his heart rate. That made me feel much better. He then said I will start coming weekly now and that they will check my cervix next week..UGH! So overall, everything good here too. Now it is back to school to try and finalize everything..UGH! **GROAN** **SIGH** Stay Tuned..more updates to come and Keep Praying for this little guy b/c it isn't long before he makes his grand entrance. :)

Like a Solid Rock

2009-11-05T15:50:00.000-05:00

Well, for today I figured I would spend time on those people who have been my rock throughout this journey.

My husband- God bless him for being such a loving husband. I have always said he is my number one fan and cheerleader, and he makes sure that I am taken care of as well as our family. With all that being said, he has rode along on this roller coaster ride sitting right by my side, holding my hand the whole way. When I wasn't sure if I would ever see the light at the end of the tunnel, he was there to reassure me that it would come. When I doubted everyone, when I stumbled in my faith, and when I was sure I could not go on, he challenged me and said, "Do you not believe that our God is more powerful than man? Do you not believe that God has a purpose for everything?" Oh how it was not what I wanted to hear, but it is what he and I both know is the truth. Our God is an awesome God. But,with his firmness, he also embraced me and let me know that he loved me know matter what. He gave me a shoulder to cry on, and ear to listen, and heart that was filled with unconditional love. What more could I ask for? I only hope and pray, that I can do the same in return for him. Oh how I love him, and may God lift him up for all that he has done for me.

My mother-I cannot put into words the connection that my mother and I have. It is one like no other, and if I had to name the many roles she has played in my life:my counselor, advisor, and friend, I would say these are only on the short list. Since I can remember, she has been able to read me like a book. There were times in which I wish she couldn't, but in the end was only to my benefit. Yet through it all, she is my inspiration. She is the one true person who "gets me." We can finish each other's sentences and thoughts, and we can laugh and make the other cry. But whatever it may be, we have endured it together, the thick and the thin. I love her for her ability to "jerk a not in my tail," and for her ability to "provide words of wisdom." On either end of the spectrum, she has always been able to help me maintain stability and faith in my life. I can't imagine my life without her, and her endless love and support for both my family and I are endless. She has provided for us in more ways than just those that are tangible. She has taught me so many things such as how to be strong, how to live according to God's word, and most of all the beauty and warmth of a mother's love. I love her with all my heart and soul, and I pray that she will realize the depths in which she has touched my life. Not a day goes by that I don't thank God for having her in my life.

My daughter- Only five years old, but has the mind and soul of a young lady. Since the day we told her I was pregnant, she has shown nothing but love for her brother. She kisses my belly, talks to him through my belly, and gives her brother hugs. Her innoncence revealed to me what society and science had jaded in my mind. She knew mommy would cry "because the baby had a hurt heart" so she asked her Sunday school class to pray for her brother. She knows that her brother might have some problems when he is born, but it hasn't stopped her from loving, kissing, and hugging him every night. It hasn't stopped her from practicing her reading and writing so she can teach him how to do the same things. She showed me the power and beauty of unconditional love. When I look at her, I realize the blessing she is to me, and I thank God for her.

My friends at work- There are many, but they all have been invaluable. Some of have carted me into their rooms to hear me cry my tears of sadness even when they themselves did not understand everything that was going on. There is one who has practically kept me afloat in my job and done so with no complaints and only offers to do more. There are those who tried to understand and offer their words of love, support, and sometimes just a hug. There are some who have prayed relentlessly for me and this baby, and I cannot tell them how much I appreciate it all. Regardless of their role, they have been there for me. I love them all and hope I can some day return the favor.

My best friend- Oh man I cannot thank her enough. The countless prayers, the book on Fear she mailed to me, and the words of love, faith, and strength that she has given me have only made me admire her more. She too is my rock, and I love her for everything she has done for me.

The others- It's funny, but I can't think of a word that can group together the countless others in my life who have and still do pray, send me cards, emails, and words of encouragement. The Peru Mission team who prayed for me and this baby even while spreading the word of God, the friends and coworkers of my family that have offered to pray for me or to cover for them so that they can be there for me. The countless church members who have expressed their kind words and added me to their prayers, and I am sure that there are some who I don't even know, but they are praying too. It is overwhelming, but it allows to me feel the presence of God in the midst of it all.

I cannot express enough my gratitude to everyone. I am truly blessed to have you all as a part of my life, and this baby boy, I know, can be rest assured that his life is one that has brought many people to their knees in prayer, and many hands lifted up in praise to God. Nothing short of a miracle.

Thank you and God Bless You!

Information on Cat Eye Syndrome

2009-11-04T14:22:00.000-05:00

I have found an article that I feel gives the best information about cat eye syndrome also known as tetrasomy 22pter--q11. (And yes I know the meanings of all the numbers and letters in that name, but will save that for a later post.) I am posting a link for this site in case you would like to view it. Cat Eye Syndrome is so rare that much of the information available through the internet is sparse or gives conflicting information. But then again, the symptoms vary in all patients, so finding exact answers before the baby is born is almost impossible. Very little of the anomalies can be accurately diagnosed by ultrasound.But for those of you interested here it is..

Cat Eye Syndrome

God's Little Miracle

2009-11-03T14:03:00.000-05:00

I mentioned in my first post that this journey in discovering my unborn baby has Cat Eye Syndrome has been one totally ordained by God. I truly believe this and I thought i would take the time to share what has been revealed thus far..Some might say that these are results of circumstance, but there are just too many for that claim.

1.We spent 18 months trying to having a baby, with 5 of those being monitored multiple times a week to make sure timing was perfect and none were successful.
**The first cycle I stopped all the meds, I became pregnant.

2. My initial ultrasound showed no heartbeat,
**But a follow up appointment only 4 days later showed the tiniest flicker of the heart of my little bean.

3. My first ob appointment was with a new doctor who I quickly realized was exactly what I needed to maintain a healthy pregnancy. My blood pressure on that first visit was 140/90 and I was only twelve weeks. My future prognosis was looking bleak.
**My follow up visit showed a much lower blood pressure and it has remained at a level that is better than I have when I am not pregnant. Thank God!

4. At sixteen weeks, my daughter contracted 5th's disease, a common childhood virus, but one that can be harmful to an unborn baby.
**Tests revealed that I was already immune to it and neither I nor the baby were at risk.

5. At 18 weeks, I went in for an ultrasound and a standard technician noticed a shortened femur bone and possibly rotated heart. A follow up ultrasound with a high risk doctor was recommended, but I was told I would have to wait because the office was closed.
**I received a phone call the following morning from a lady at my drs office who offered to schedule me an appointment at a different location. I was so relieved and thankful because I was sure I would have to call and remind them to schedule the appointment. I found out several weeks later that the lady who called me recognized my name and remembered I had coached her daughter. She later told me she wanted to help in any way she could so she called to see what other offices were available so I could be seen sooner. Truly an angel of God!

6. I went for my follow up ultrasound with a highly trained techinician and high risk doctor and they revealed that the femur was actually in normal range and heart looked normal. But further testing was scheduled just to be sure and reassure me

**This testing eventually led to the diagnosis of a congenital heart defect known as TAPVR and of my baby's condition of Cat Eye Syndrome which are rarely diagnosed prenataly.

7. At 26 weeks I found out I had gestational diabetes. I was terrified of what this might mean for my health and busy life.
**Despite my high test numbers on diagnosis, I have been able to maintain control through diet alone. I have yet at 34 weeks to gain any weight during this pregnancy, but baby is growing just fine.

8. Being a patient at a high risk facility put me in contact with a genetic counselor who has truly been an angel.
**From the beginning, she has offered me her office and cell phone number to call at anytime if I had questions or concerns. She even answered my call on a weekend. God bless her because I was a basket case. She has kept me frequently updated on every step of the process of testing and has informed me of every conversation that she has had with the geneticists locally and those in Washington State. And despite all the overwhelming news she has had to deliver to me, she has always remained optimistic and went out of her way to give me every possible scenario.

9. This pregnancy fell at time that was just perfect for what I was about to go through.
**Being a head volleyball coach and something I love to do, my season began at about the same time I was finding out all of this information. It gave me the motivation to get up and get going, and it provided an outlet where I could not dwell in my own self pity. It surrounded me with people who were supportive, and helped me see the light at the end of the tunnel.

10. Most of all, this journey is not over, but I have been provided with an overwhelming peace, and I know that God has not revealed to the world his purpose for this baby. But I know there is one. All of these circumstances have educated me in ways I would have never known.
**I now realize the true miracle it is to even conceive a child.
**I have seen the miracle it is to give birth to a healthy child.
**I have learned that genetics are complicated, but yet every single fiber of our dna is so vital to our existence. Only a mighty and superior God could have ordained such a thing.
**I have learned that being in control is not the most important thing, and I am still trying to fully relinquish my grip on this.
**And I know that this journey has only just begun.

Where Do I Begin?

2009-11-02T15:09:00.000-05:00

It's really amazing to reflect back on the circumstances that have led us to the point we are at today. Yet, as wild as it has been, I can only describe this journey as one completely ordained by God. So with that being said, here is how it all began.

In October of 2008, my husband and I began to see a fertility specialist to help us determine the reason for my long and sometimes absent cycles. I was quickly diagnosed as having polycystic ovaries and was put on fertility drugs to help regulate ovulation. I went through 3 cycles of this drug and all were successful in ovulation, but none succeeded in producing a pregnancy. At this point, I was beginning to think that my dream of having a second child was ending quickly. I could not afford to do IVF, and the medication route was proving to be a dead end. After the 3rd failed cycle, the doctor switched me to a different fertility drug to see if I would respond better. Again..this only led to successful ovulation but no pregnancy. The reality of never having a second child was really starting to take a grip, and the emptyness I felt was really beginning to eat away at me. After meeting with the doctor, it was decided that I should have some further testing done to determine if I had blocked ovaries which may prevent fertilization. I was to call and have it scheduled with the upcoming cycle. Well, I called, but somehow the paper work never made it through in time to have the testing done during that cycle so I was going to have to wait until the next cycle. This was in March of 2009.

April 6th, 2009- Although I was not currently on fertility drugs, I was still keeping track of my cycles. So on April 6th of 2009 I was officially late for my cycle and decided to take a test just to see. And tada..I was pregnant. I was so excited and couldn't wait to tell my husband. I completely felt that this was a miracle of God. We had been trying to conceive for 18 months and it finally happened. I called the fertility clinic who then immediately brought me in for blood work. Having conceived one child already, this was an entirely new process for me. I was told that my initial bloodwork showed positive results for pregnancy, but I would need to return in 2 days to have it tested again to see if the numbers were rising..Again, this was all new for me. What happened to the good ole days where if your test showed positive, that was it?
So two days later, I returned and my results showed that my HCG levels were rising so now a viability scan was scheduled. I was told that in order for this pregnancy to be considered viable, a heartbeat had to be found.

April 13, 2009- I show up for my ultrasound with much prayer and hope that a heartbeat would be found, but with a nervous energy that I would leave with shattered dreams. As the doctor is doing the scan, I hold my breath waiting to hear the answer. As my gut instinct told me, he said, "I see a sac, but I can't find a heartbeat." He did say that it could be too early and that I needed to come back in a week and have another scan to see for sure. If there was still no heartbeat, then I would have a reason to be concerned. So I was rescheduled for another ultrasound.

April 17,2009- I return to face the machine again. This time, I am even more hopeful that a heartbeat will be found. And as my instinct told me, the doctor said "Here's the heartbeat." I was so relieved. But then he said, "It looks like there is another sac in there." He scrutinizes the screen and takes pictures, but he said he just couldn't say for sure so he wanted to see me in another week to take another peek. So I left the office with an entirely new set of worries, is there one or two?

April 24, 2009- I again return for the second look. The doctor immediately finds the heartbeat again, but it is at the same rate it was the week before. I mention this to him knowing that the heartrate should be increasing, but he says not to worry. Yet he still thinks there is a second sac but that it looks empty. He decides he wants me to go for a second opinion at about 8 weeks because it should be very clear if there is one or two at this point. So I am scheduled to have another ultrasound.

May 9th, 2009- I show up at the hospital to have another ultrasound to confirm if there is one or two babies in there. If you have had any experience with an ultrasound tech, they are not allowed to tell you anything so I did my best to pry answers out of her. She said she did not see a second baby, but that the one she could see had a good heartrate. So I left knowing that I had one viable pregnancy and could begin the exciting journey of preparing for this little one. I was then released to go to my regualr obgyn.

I decided at this point to go with a different obgyn since I was not pleased with my previous clinic. After contacting the new facility and finally getting scheduled for an appointment, I was almost 12 weeks pregnant.

I met with my new doctor, went over all my confusing reports from the fertility clinic, and discussed my prenatal plan. Being only 29, I was not considered high risk, but I was offered the option to have a NST scan done at 12 weeks. I had been on many pregnancy forums and was told that you got to have an ultrasound with an NST, so I couldn't resist the urge to take another peek at my little bean. I opted to have it done.

June 2009- Around the 1st week of June, I was scheduled to have my NST scan done at hospital in Charlotte, NC. When I was taken back to the room, I was so glad I ended up there because the facility was great. After reading the paper work and having the procedure explained, I suddenly became very nervous. They would be measuring the neck fold of the baby as well as some other parts of the baby to assess my risk for having a child with Down Syndrome, Trisomy 13, or Trisomy 18. I was quickly thrown into the reality of what this test might reveal, and my desire to have another peek at my little bean seemed not so important anymore. As I lay there, the ultrasound tech took all her measurements and said everything looked great. I was relieved and left with some great photos of my little peanut. I was happy. A few weeks later, my results were mailed to me showing normal findings with the NST.

July 2009- I continued the standard prenatal care and was anxiously awaiting the next ultrasound to be done at my obgyn so I could find out the gender. It was scheduled and my husband and I planned to take our 5 year old daughter so she could see the baby.

July 16, 2009- Off we went to the doctor with only hopes and dreams of what color the nursery would be and what names would we like the most. As I lay on the table for the ultrasound, I watched the ultrasound tech maneuver around and take many measurements. She was not talking very much, and I noticed that she kept taking repeat measurements of several parts of the baby. Now it had been 5 years since my last experience with ultrasound, but I quickly began to think that she was not being silent just because she was non social. She also knew we were waiting to hear the gender and my daughter was getting ancy to leave. She continued to take many measurements and my instinct was telling me that she was seeing something but I just couldn't figure out what it was. She finally did a quick scan of the baby's bottom, revealed it was a boy, and quickly got up and said, "I'll bring you pictures back in a minute." I knew then that something was not right. THe tech returned and gave me a few pictures and said to have a seat outside the doctor's office. My husband and daughter left to go back to the waiting room. The tech then went into the doctor's office and shut the door. I definitely knew then, that what was being said behind that door was not how beautiful my baby was, or that everything looked great. A few minutes later the doctor called me in and asked the nurse to bring my husband to the office too. My stomach turned and I could feel my adrenaline rushing. And so it began..
"This is not the news I was expecting to give to you today."
"The baby's heart looks rotated."
"The baby's femur bone is measuring behind."
"You have 2 markers for Down Syndrome."
"One good thing is your NST scan shows a low risk."
"You will need to go for another ultrasound at a high risk facility."
" There are many things that can cause these results."
Oh the flurry of thoughts, the rush of adrenaline, the sudden feeling of doom..I couldn't handle it and I broke into sobs. I wanted to know now exactly what the problem was. I needed answers, but I was told that the office would be closed until the following Monday. I honestly thought I couldn't wait that long. So my family and I left that office in total shock and devastation and I left my dreams of having a healthy baby laying on the ultrasound table.

At home, I couldn't eat, sleep, or do anything but cry. I needed answers and all this unknown was ripping me apart. On Friday morning, I received a phone call from the doctors office. The lady said she knew that the Level 2 ultrasound office was closed until Monday but that she could try and schedule me with the clinic in Charlotte that I went to for the NST scan. I jumped at the chance and thought to myself..only God can open doors like this..he knows my heart. She quickly called me back and said I was scheduled for Monday afternoon. I cannot express to you what that weekend was like..Some moments I was a complete basket case, other moments I was a zombie, and sometimes I was so overwhelmed I just couldn't think straight. Of course I also spent considerable time researching the internet trying to find the answers myself. None of which brought any sense of peace or calm to my life. So on Monday, we go in for the level 2 ultrasound. After having the ultrasound done, the doctor explains that she doesn't really see anything significant that would be cause for concern. I asked about the heart and she said, "well he is not giving me text book pictures, but I really don't think there is anything to be concerned about. I will schedule you for a fetal echocardiogram just to rule out all possibilities." I asked about the femur bones and she said "Well it measures about a week behind, but unless we find other markers, I don't consider the femur bone an accurate tool for diagnosis." I then asked about an amnio..At this point the genetic counselor came in and explained that I had no medical reason to have one done so I would probably have to pay out of pocket. She then explained that my NST risk assessment and ultrasound results gave me a .033% chance of having a baby with downs, trisomy 13, or trisomy 18 and that an amniocentesis carries a .367% chance of a miscarriage. She also reassured me that there was nothing that indicated to them that there were problems and reminded me that I was in a facility that looked at nothing but high risk patients. So I was relieved for the most part. I opted to not go through with the amnio and my fetal echocardiogram was scheduled for a few weeks later. I praised God that all was well.

August 2009- I return to Charlotte to meet with the fetal echocardiologist. He does an ultrasound of the baby again, and quickly turns to me and says "I think they are right in that your baby has a heart defect, but it is one that can easily be fixed. Let's talk about it in my office." So down the emotional roller coaster I go again. We are then informed that what he suspects my baby has is a rare heart condition called TAPVR or Total Anomalous Pulmonary Venous Return. He says it is fixed in one open heart surgery procedure and he suspects that my babies procedure would not need to be performed immediately. He did tell me that I would now have to deliver at that hospital which meant switching obgyn's again, but he made everything seem so simple and not a big deal that I was really not concerned. I left the hospital with a pretty good feeling.

But then I got home..I sat down and remembered the doctor telling me that if the baby had a heart defect, his risk of having chromosomal abnormalities would increase. I immediately was devastated. I just felt that this was inevitable. Over the next few days, I spoke with the genetic counselor and cardiologist and discussed my concerns. Both assured me that this was not a defect found in babies with downs, trisomy 13, trisomy 18. But I wanted confirmation, I just knew I needed to know for sure. The genetic counselor informed me that since there was now a heart defect, I could have an amnio done but it needed to be done quickly since I was getting closer to the time in which doctors did not do them. The discussion with my husband proved to be much more difficult than I thought. He is a numbers man and I am a realist. Statistically, he just couldn't justify taking a risk of miscarriage when my risk of a baby with chromosomal abnormalities was so low. I completely understood, but my point was that IF there was something wrong, I needed time to mentally prepare myself for the journey. I just didn' t think I could handle having another stick thrown into the fire when the baby was born. I felt having an amnio was important for my mental sanity. I completely respected my husband's viewpoint, but I was so anxious inside that I just couldn't let it go. We met with the genetic counselor again and discussed the options, weighed the risks, and heard each other's side. We were at a standstill, but finally agreed to go through with it. The procedure went well and I had a busy weekend and upcoming week to help pass the time for the upcoming results.
THe following week, I received the initial results for downs, trisomy 13, and trisomy 18 and all came back negative. I was relieved. She said that the other results would be back in about 2 weeks but those were abnormalities that were much more rare.

Two weeks later I got the call: The results showed that the baby's cells had an extra fragment of a chromosome that was in every cell.
*This could be something that my husband and I carried, and if so, it would carry no significance.
*This could be something completely new, but still carry no significance.
*This could be something completely new, and be related to a specific syndrome but the chromosome had to be identified.
Regardless, I just couldn't believe what I was hearing. I mean, less than 1% of babies have something like this. So of course I began researching what chromosomal abnormalites were related to the heart defect. Immediately I found Cat Eye Syndrome. I just knew that had to be a possibility.
The genetic counselor called and confirmed that neither my husband nor I carried that fragment so this was something completely new in the baby. She also confirmed that it was either Chromosome 14 or 22 and that if we wanted to go for further testing it would have to be shipped to Washington State. We opted to go through with this testing. Meanwhile, I mentioned Cat Eye Syndrome to the genetic counselor. She said she had looked it up and discussed it with the geneticist, but he wasn't sure that it was that. In my heart of hearts, I just knew it had to be. How can you say it is not Cat Eye Syndrome when it comes from a fragment with chromosome 22 and the heart defect most commonly associated with this syndrome is TAPVR? It just seemed to fit. Well after a month and half of waiting, I finally received the phone call with the final results.

October 22, 2009- I decided to ride home with my husband from the volleyball game. (I am a head coach of a varsity team.) Again, this proved to be another decision led by God. It was something I never did, but I wanted to spend some time with my daughter. On the way home my phone rang, and it was the genetic counselor. And again, my gut instinct was confirmed. The fragment was confirmed to be the section of chromosome 22 associated with Cat Eye Syndrome. I was more numb than anything. Here I was so close to the end of this pregnancy, and I was just now finding out what I knew all along. I looked at my husband and explained everything she relayed to me and the car went silent. I didn't know what he was thinking, feeling, nor did I know what to say myself. Once home, the silence continued. I wanted so bad to know what he was thinking, but I wasn't sure how to approach it. He had watched me cry, scream, and shout, doubt God, be angry with God, and question everything and everyone, even my own existence and he always remained solid and optimisitic. Now here I was with no emotion, and I wondered if he was just waiting. Waiting for the next bomb to explode.