Yesterday (Sunday), we walked in to hear she had another bad night and found her NAVA settings were raised again. She was still struggling a little and I made a comment about why her chin strap was off. Her nurse that day had never worked with her before and looked at me surprised because she did not know she usually wore it. It is funny because the night before one of our nurses gave me lecture about how I am my child's biggest advocate and I had to speak up whenever something seemed off because though the doctors and nurses changed daily, I was there every day to know everything going on. What is funny, is the example she is used was if her chin strap was off and she was struggling!
They got a doctor's order (they need one for most things) and put her chin strap on and she started doing better immediately. Through the night, they ran a whole series of tests and x-rayed her lungs again. Like last time everything came out looking good. She had a good day, but around 2 when I changed her diaper, I noticed she was being lethargic, but we thought it was because of the crazy night/morning she had and that she finally was relaxed and exhausted. I should have known better.
About an hour later, I experienced the scariest moment of this whole ordeal since they told me I was in labor. Her blood saturation dropped and stayed dropped for a long time. They do not like when she drops in the 60s, this time she hit 28. More concerning was how long it took her to come back up to normal levels. It felt like 20 years, but was probably only a few minutes. The nurse was in the room when it started, but when the baby starts dropping they always wait to see if they self-correct (which she usually does). When she didn't, the nurse put her hands in the isolette and stimulated her, which they usually do by either rubbing her back, moving her position, tickling her feet or anything that snaps Natalie back into it.
The scariest part was that unlike usual, Natalie did not fight or struggle to get her breath, she just laid there. The nurse was incredibly professional, but I could tell she was nervous. I was happy that we had visitors, so Jimmy was in the lobby and did not have to witness it because I know how much it would have upset him. I surprisingly kept my cool and just kept rooting her on to start breathing. She finally came back to normal numbers and the nurse checked to make sure her tubes/equipment were all in the right place and that they weren't causing the problem. They re-situated her and she seemed to even out nicely.
Jimmy and myself had decided we were going to leave early that day (3:30 - the earliest we would have ever left) to get some chores done around the house. He was waiting for me in the lobby with out bags and we were going to leave when our guests were done visiting. I went out there and told him what happened and (obviously) we decided to stay longer and make sure everything was ok.
20 minutes later, it happened again. This time Jimmy was in the room and I had a much harder time not succumbing to tears as I watched Natalie decline and Jimmy try not to panic. The second time was not as bad as the first, but still worse than any of her other episodes have been in her lifetime. So, the nurse called in the calvary. Seeing all these professionals gathered around my little baby was almost as hard as watching her breathing drop. They decided to run more expansive tests. They put in an IV to start antibiotics because blood cultures take up to two days to show infections and they did not want to wait. They took a bunch of other tests I did not understand, but I was happy that by the end of it, Natalie was extremely pissed off and fighting with them.
We waited a few hours and made sure she was still doing well and she was, so we went home. We called in a couple of times throughout the night and she did good the whole time. Today we got in and she was still steady. I was surprised to hear they were upping her feedings back to 22 (they got moved down during her troubles) and that they were doing her next EKG today. The last time they did her EKG (three weeks ago) it agitated her so much, she had her first bad day. She does not appreciate the gel they put on her or the pressure from the probe and she did have some problems while they did, but they did it as fast as possible.
When they did her first EKG, they were very happy with the size of her PDA hole (Patent Ductus Arteriosus) and thought it was close up nicely. Well, it is not closing up, it is growing larger. I was very shocked to hear this, since it was something they were so positive about when they did their first test on her. Because it is growing, the left side of her heart has become enlarged to compensate. This is (almost definitely) the reason for all the respiratory problems she has been having. They will first try to treat it with medicine and she is going on a 7 day treatment of basically just tylenol and they will check to see if closes up at all. Unfortunately, there is an age range of when this usually works and she is at the top of it. Yes, she is too old for something, go figure. So, we will wait and see, but most likely she will need PDA ligation surgery. It is incredibly routine, and I felt much better when they told me they do not even bring her to the OR, but do it bedside, but of course, I don't like it.
I am glad they found a fixable reason she has had a lot of trouble this past week, but the past 24 hours have been unbelievably stressful. I forget how stressed I am in general right now, and this just makes it so much worse. The tension of watching the two bad episodes definitely took their toll on both Jimmy and myself. I held myself together until we got to to the elevator to go home and then let myself burst into tears on Jimmy's shoulder. I literally felt like a rubber band about to snap, but felt much better after a good cry. I know, even with this setback, she is still doing extremely well. We have met other parents in much more dire situations and know we are very lucky. It is just incredibly difficult to stand there helpless and watch our baby stop breathing, wondering why I just can't breathe for her!
Otherwise, there is a lot positive going on with Natalie. Even with her heart trouble, she is still a feisty little girl who continues to grow and gain weight. When she was born she was 13 inches long and 1 lb 14 oz. She lost a few ounces in the beginning, but now at almost 4 weeks she is 14.5 inches long and 2 lb 8 oz weight! They are very happy with her consistent weight gain and said it will continue to help strengthen her lungs. She is opening her eyes a lot more often and I cannot get enough of those little peepers.
So, maybe this is not the boring long haul I was hoping for last week, but we have plenty to be grateful for tonight. We will wait and hope the medication works, but I will, of course, keep you all updated.
We did not get many photos (surprisingly, that was not a main concern), but here is one photo for your daily dose of Natalie Rose:
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| Sleepy after her bad episodes and getting an IV put into her arm |
I stopped breathing several times reading your update. Prayers continue your way that Natalie will improve every day and grow bigger and stronger. 🙏
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