Saturday, July 31, 2010

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

Ok so where do i 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? 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.

Wednesday, May 19, 2010

I Have Been Humbled

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.

Tuesday, April 27, 2010

Stop Raining on the Parade- Update

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.

Wednesday, April 7, 2010

4 Months Old- Update

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.
- 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.

Thursday, March 18, 2010

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

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.

- His liver function was tested again and as I have said before we pray that his numbers go down and not 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

- 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.

Tuesday, March 9, 2010

Week 12 Update

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.

- 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.

Friday, February 26, 2010

Week 10 and 11 Update

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.

Tuesday, February 16, 2010

Week 9

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.

Monday, February 8, 2010

Week 8

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 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 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 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.

Sunday, January 31, 2010

Week 7 Update

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.

Sunday, January 24, 2010

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

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...

Saturday, January 16, 2010

Week 5 Update

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.

Saturday, January 9, 2010

End of Week 4 Update!

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.

Friday, January 1, 2010

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

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.