Greyson's breathing is still very rapid so he had another echo done today to see what may be causing it. I have not heard from the cardiologist yet about those results. Tomorrow, he will been seen by an ENT who will do a scope through his nose and down his throat to see if he has anything obstructing his airway. Pray that these tests will give us some answers on why he is breathing so rapidly!
Oh! And he drank his whole bottle this afternoon! It was his first bottle in about two days as he has been getting his feedings through his tube.
Today marks 3 weeks in the NICU. Greyson was supposed to come home with us on Tuesday, but his SATS were not good overnight so he was unable to do so. He was still gaining weight but had started to eat less. They put a feeding tube in and said he could come home once he ate 8 feedings of 80ml each. This seemed like an impossible goal as he is a lazy nighttime eater. The next day, the doctor changed the order so that he had a minimum over a 12hr period instead. I was very confident that he could meet this minimum and that he would be coming home the next day (which was Friday).
On Friday, we were expecting to bring him home and instead found out that was not doing well with his SATs again and that he had been put back on oxygen. Because it is a holiday weekend, we would be unable to get the supplies needed to train us to bring him home on oxygen so Tuesday would be the earliest he could come home.
Yesterday, when I went to visit him I was surprised to see how rapidly he was breathing. He sound congested (though his lungs were clear and the nurse could not get anything out of his nose) and he would not eat. I tried really hard but he would suck for a few minutes and then look at me like he was in pain. He really wanted to eat but could not make himself do it. He did this nursing and with a bottle. He was getting so frustrated so I told the nurse to go ahead and put the rest down the tube. I then held him for about an hour before I had to go. His breathing did slow down while he was laying on me. I felt so bad for him. I was pretty sure that he had a cold, but we wouldn't know until the pediatrician saw him the next day.
This morning when Josh called, we were informed that they had done a chest x-ray and were going to do a CBC (complete blood count). This worried us because we were unsure of what exactly they were looking for. We assumed they were looking for an infection and checking to see if he had fluid in his lungs still. That is exactly what they were doing, and both tests came back fine. So, Greyson has some sort of virus that we now just have to wait out. Pray for him to get better! We are greatful that he was still in the NICU when he got this cold because he is in the safest place he could be!
Greyson's SATs were not very good throughout the night so he will not be coming home today. They will be keeping a watch on him today and let us know how he is doing. Hopefully he will be able to come home in the next couple of days. Pray that he will have good SATs and that they will not have to put him back on oxygen.
No, seriously we would. We would love to celebrate and share the joy of his birth and homecoming with you and let you steal lots of baby snuggles, but we can't yet. Greyson has very low muscle tone and feels like he will slip right through your fingers! He has to be held just right to make sure he can breathe properly and Josh and I have spent the last couple weeks learning exactly how that is. Trust me, as soon as he seems strong enough to be held by others we will pass him around! Thank you for being understanding!
Greyson's echo of his heart confirmed that the 'hole' in his heart is what is causing his need for oxygen. His heart is letting blood through this 'hole' that has not been oxygenated and redistributing it throughout his body. The pediatrician is going to order another echo on Wednseday so we should have results from that on Thursday. If nothing has improved by then we will work on getting him set up to go home with oxygen.
Greyson is now 7lbs and 15oz and is still on 1 liter of oxygen. They have tried to wean him but his sats drop to the upper 80's (we want 100) so the pediatrician has ordered another echocardiogram to see if his current heart conditions are what's causing his need for oxygen. If they are, the cardiologist will determine whether or not Greyson can come home and if he does, whether or not he will need to come home on oxygen. Once we determine if he needs oxygen, he will do a car seat test. A car seat test is simply monitoring him in his car seat for 90 minutes to see if he can safely ride in it. We (us and the pediatrician) are thinking we may need to get him a car seat bed instead, but we will not know for sure until we can do a car seat test. We do not know how long he will be in the NICU but we do know it will be through this weekend. Please continue to pray for us all!
Greyson is one week old today! This is bittersweet as he is still in the NICU, but he is doing well. On Thursday night, they put him back on 2 liters of oxygen. This was kinda discouraging as we were hoping to come home this weekend. This morning, they put him down to 1 liter and he is doing really well on it! We are not sure, but we are hoping they take him off of oxygen tomorrow since he has to be off of oxygen for 24 hours before we can talk about coming home. Thank you for your continued prayers!
Yep, that's right. I was allowed to nurse Greyson this afternoon! It made us both soooo happy. And guess what, he's a champ at it! Even his nurse commented that his SATs were better when he was nursing than with his bottle feeds. This is a big step towards coming home! I nursed him after a bottle feed, but tomorrow I am hoping to be able to do it the other way around! Thank you guys for your continued prayers!
Greyson is doing so well! Yesterday, I spoke to the pediatrician on the phone during the day and he told me that he was going to move Greyson down to 1 liter of oxygen and that his IV was out so he was getting all his nutrients through my milk. The next step was going to be adding more to how much milk Greyson drinks and taking him off oxygen completely. When Josh got off work, we headed to the NICU. When we got there, we were pleasantly surprised to see that he only had a feeding tube! His oxygen was gone completely! We were able to feed him a bottle where he drank 22cc and left 10cc. The nurse put the remaining 10cc down his feeding tube. I think the only reason he didn't finish his bottle was the fact that it is hard to suck with a feeding tube down his throat!
Today, he is tube free! And he is drinking bottles like a champ! I can't wait to start nursing him while I am cleared to do so!
Greyson was able to eat 10ml from a bottle! He did a great job! Before we headed home, we were able to hang out with him and feed him part of his bottle. We (us and the nurses!) were so proud of him! We do not know how his stomach handled the breast milk, but we will talk to them about it tonight. One of the things they were concerned about was if he would be able to keep his food down. If he did well, they were going to feed him 15ml at 6pm. They are also going to reduced his flow from 3 liters down to 2 liters and see how he does.
The older boys were really happy to see us (and us, them)! We are doing well at home, but we desperately miss Greyson. Thank you for your continued prayers!
I have been discharged from the hospital! We will be hanging out with Greyson for several hours and then headed home to see our other boys. Pray for us as we manage going between home and the hospital!
Good news! The pediatrician said his heart is 98% normal. All babies have a spot in their heart that is open (kinda like a hole, but not a hole) while they are in the womb. It is supposed to close when they are born but sometimes it doesn't. So Greyson has that little 'hole' (Boaz had this when he was born as well) but we will just keep an eye on it (with the help of a cardiologist) and it should close on it's own. Also, the right side of his heart is slightly enlarged. The pediatrician said that the valve on that side is a little 'leaky' so it is enlarged because it is working harder. We will also be keeping an eye on this and it should resolve.
His bowels/intestines look great.
He was on 2 liters of oxygen earlier today, but they have bumped it back up to 3 liters for now. They are going to wait to feed him because of this. But GREAT news, I get to go see him!!!!!!!!! I have even been cleared to hold him, though I will wear gloves and a gown just to be safe. Thank you for your continued prayers!
I received this text from Josh while he was in the NICU! I'm so happy that he was able to hold Greyson!
Greyson is doing great! When he was first admitted into the NICU, he was receiving 50% oxygen. He is now receiving 21%, which is the lowest amount! They are hoping to take him off of oxygen tonight. I haven't been able to see him (since yesterday evening) because I have pink eye. I have been using eye drops for almost 24hr now so I should be able to go see him again tonight! I can't wait to hold my little man! They have not fed him yet, but pumping is going well and I am slowing building a stock of colostrum in his fridge. They said that he is showing signs of being hungry so they plan on feeding him tonight!
I am recovering well, just missing Greyson. Please pray for my healing after birth as well as from all these illnesses!