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 10 and 11 Update

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

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

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

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

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

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

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

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

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.