Tuesday, August 13, 2013

Tethered Cord Surgery- October 21, 2010

Wow..It's been almost 2 years since I last posted...but I hope you will follow as I update you. Life has been busy...real busy. (Having 2 toddlers is no joke). In my last post, I left off with Harrison having been listed for his liver transplant and was waiting for his tethered cord surgery. My mom and I were very nervous about this surgery given that Harrison's state of well being was not good. Even the neurosurgeon questioned whether or not it was ok, but his team gave us the go. So on October 21st, we arrived at the hospital for his tethered cord release surgery.
I'll never really forget this day or drive up to surgery. We had to be at the hospital at 6am for surgery. So we were up real early and on the drive in, I clearly remember Harrison being unusually happy. He didn't stop jabbering and saying "dada" one of the few "almost" words he had just started to utter. I remember thinking how sad that his daddy couldn't be in the car with us to hear him so happy and content.(His daddy was staying to take his sister to school.) The nerves of this surgery were high on my part. I really just wanted to pick him back up and take him back home. I snapped this picture of him because it captured just how happy he was. Little did I know that this would be the last picture I had of him smiling for a long time. Little did I know that this surgery was only the beginning of major life changes to come. The tethered cord surgery, in simple terms, involved going in to release the tension at the base of the spine that contains nerves that affect, bladder, bowel, and lower body movement. Releasing this would help prevent damage to these nerves that can occur over time if not released. During the release, doctors would test his nerve response to the areas affected by the tethering to see if they got responses and how strong they were. The expected recovery for this surgery was 3 days and up to a week. We expected a week considering Harrison's condition. So surgery took place that morning and it went well with no complications. We were told he got good responses in all his nerve areas except for one side of his anal rectal area. They weren't sure if that was due to damage or if it just wasn't responding yet. And only time would tell what affect it might have on his bowel control. On we went to recovery. Harrison was on Morphine and restricted to no movement for the first 24 hours after surgery. All seemed ok until that evening when we noticed a lot of drainage from his incision site. We kept calling the nurses and telling them. He also seemed really uncomfortable. So during all this we quickly learned that Harrison had a Cerebral Spinal Fluid (CSF) leak. It would stop and start, and every time he cried it would pour out. During these episodes, he leaked enough CSF to soak through 3 sets of bedding and bandages layered on thicker than my hand. We (me, my husband, and a nurse) spent an hour holding pressure to his back as we waited for an on call neurosurgeon to arrive. There is great danger in losing lots of CSF as it also is what surrounds the brain to protect it. I expressed this concern numerous times but it fell on deaf ears. We battled this all night and into the morning. The next day doctors decided to do what they call an oversew of the suture site. So instead of using glue to close the incision, they would use sutures and literally sew the two sides of the skin slightly over the other which we hoped would not allow any more fluid to leak. At this point, doctors didn't know if this would work to stop the leak and they also didn't know if there were other reasons such as hydrocephalus or enlarged ventricles causing the CSF leak. The doctors did the oversew and the leaking seemed to slow some, but after a while it started again. It wasn't as much as before, but it was still too much. He also seemed to be in considerable discomfort so he couldn't come off the morphine.The doctors decided he would need to go into surgery and have a lumbar drain put in the next day. Well overnight, the leaking seemed to slow and we all decided to hold off on the surgery and we even began his feeds. Things were finally looking up. Yet Again all was well until later the CSF leak started again. So the surgery for the drain was rescheduled. Being a weekend, this meant the surgery was done by a resident. After the drain was put in, Harrison came out to recovery. His recovery took a sudden turn for the worse. We noticed that there was blood coming out of his g-tube. So immediately there was concern that he was having a GI bleed due to his failing liver. Labs were drawn, xrays taken and it was determined that Harrison needed a blood transfusion. We had also noticed that his urine was the color of tea. All of these were signs that his liver was going south. In addition, the lumbar drain meant an additional 5 days to his recovery. We had been hearing buzz that there might be a liver for Harrison coming soon and were praying that this hiccup in his surgery would not make him miss out if a new liver was to come available. He was now, after his most recent labs, at the top of the list for transplant. After such a grueling weekend, we finally got to meet with Harrison's neurosurgeon who had ordered a CT scan of his brain. The CT scan showed that he lost too much CSF and had caused some bleeding on the brain, and his dr was not a happy person with how his situation was handled. Harrison also was ordered very little pain relief meds after the drain and this finding meant he was having spinal headaches. This explained why he would cry and moan in his sleep. It was absolutely heartbreaking.
So 4 days after the initial tethered cord surgery, we had battled a CSF leak, and other complications due to his failing liver. The neurosurgeon informed us that due to Harrison's poor liver condition that his body was extremely slow at healing and the lining around the spinal column was extremely thin. Therefore it was difficult for him to sew it closed during surgery and he felt it was probably the cause of the leak and the drain would help as his body slowly tried to heal itself. The following day, five days after the surgery, we were told that there was a chance Harrison would receive a new liver before he even came home from the hospital. I didn't know what to think or believe. It wasn't officially being said, probably because it couldn't be, but all I knew was I could only take it one day at a time.

Monday, May 2, 2011

Its Been A While

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.

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 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.

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 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

- 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.