Thursday, March 18, 2010

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

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

So on to the updates..

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

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

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

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

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

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

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

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

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

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

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

Tuesday, March 9, 2010

Week 12 Update

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

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

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

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

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

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

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