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.

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.

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.

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.

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

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

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

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

Week 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.

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 said..it got cancelled due to Emily getting sick which I will discuss later. So we are waiting now to see when Harrison's surgery will be rescheduled to.

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

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

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

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

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

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

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

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

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

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

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

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

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

Week 7 Update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Week 5 Update

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.

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.

Surgery #2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Week 3- Trying to find the faith of Job

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

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

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

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

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

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

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

2nd Week of Life

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

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

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

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

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

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

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

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

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

Cardiac News

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

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

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

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

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

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