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.