The ones with a blue light are because of the bili lights to treat him for jaundice. He has to have the cool sunglasses to protect his eyes from the rays
I know everyone is wondering how our little one is doing. We will be trying to keep everyone updated through the blog right now. So here it goes.
Shep is here in the PICU for a couple of reasons. One is for what is called Coarctation of the Aorta and the other is a Ventricular Septal Defect. You can go to www.pted.org and click on anatomy to see great descriptions of both of these things. They are pretty much a narrowing of the aorta and a small hole in his heart. One of the little miracles that started all this is the fact that a specialist happened to look over Shep at Rex after he was born and hear a very faint heart murmur. A number of doctors and nurses had already done extensive examinations of him and heard nothing. With the way his heart is malformed, you really only have a good chance of surviving as a newborn if it is found within the first few days of life. If she had not heard it we would have been sent home the very next day with a very sick little boy and no idea. So we praise God for the sensitive hearing of that sweet nurse.
We have seen tons of doctors today and feel like we have a pretty good idea of where Shep stands. It looks like his surgery will be planned for Thursday to give him one more day to stabilize. So far he has been stable. Only in the past couple of hours has he had a couple cases of delayed breathing, which is a by product of the medication he is on. This is being closely monitored, though. Today, he has seen a cardiologist, kidney specialist, surgeons, and geneticists. At the end of the day, they were all very encouraging. His pelvic kidney (something we have known about for a couple of months) will not be directly dealt with for a couple months. The doctor wants to get him through his heart surgery before they deal with all of the kidney stuff, especially because it is not as urgent. So, for the kidney, they will simply treat him with antibiotics through the next little while. One of our little miracle does involve the kidney specialist visit, though. We had decided not to get Shepherd his Hep B shot in the hospital, before we knew he was sick. And since everything has happened so fast, we never thought about it again. Nor has anyone else mentioned it to us. She happened to see some information and realized this fact and alerted us and the other doctors to this. She flat out told us that she probably just saved our babies life. With all of his procedures and especially considering surgery and the possibility of a blood transfusion, she was confident that if he weren't protected against hep B, it might very well have been fatal. Apparantly she was not even supposed to be working today but came in anyway and in her words "I think someone is watching over your baby." We agree.
As far as the geneticists, they are waiting on more tests to come back but as far as her initial assessment of Shepherd, she saw no physical abnormalities to cause her to think there was a gentic disorder involved. She DID say he was exceptionally cute, though. We will get most of those tests back within the week, but she saw no reason for the other docs to wait on the surgery because of gentic concerns.
The cardiologist helped us to feel confident about the procedure that shepherd will have. They will most likely go through his chest, move ribs, and cut out the narrow part of his aorta and suture together the normal parts of the valve. Because of his age, the recovery time will be longer- they think about 2 weeks in ICU. It is also a very painful procedure and he will need a lot of pain management. But we will have the best doctors and they preform this procedure often.
We have also jsut arrived tonight at the Ronal Mcdonald House and we have had our minds blown. We cannot believe that we get to be blessed by this beautiful ministry. What a picture of God's provision. We will be here until Shep goes home. It is 5 minutes from the hospital.We will even be able to have the boys with us often here. There are playgrounds for them, an entire stocked kitchen where we can make our own food. They serve free dinner every night. They literally make it their job to provide everything a family would need in this kind of a situation. The fact that we will be so well taken care of and also able to have a little sense of normalcy for the boys and us is wonderful. And best of all the house is set up so that familys can interact in a sense of community, so we should be able to love on and encourage a number of hurting families. We are so excited for this blessing and opportunity.
So for right now we are just going to be loving on our little boy and praying hard. There is no possible way we would have been able to be with him and care for him so much during this time without the selfless care of so many. We will be updating the blog and letting you know how you can be praying as Thursday approaches. I hope this answers more questions, instead of giving you more questions. It's what we know and want to make sure you all know how to pray. Thank you so much. We see God's love for us through you.
Hopefully I will get a slideshow up soon of when the boys met Shepherd. Enjoy