Lets begin with Madaline. Every 2 weeks they have to change the babies’ incubators for hygiene reasons and Madaline was due for a fresh clean one. Since there was not an updated one available, they gave her an outdated ugly one that was hard to move her in and out of. Not to mention, it gave her more room to possibly roll around and hurt herself. Well, leave it to me to make a stink long enough for them to decide that Madaline was ready for a big girl CRIB. That’s right folks, she has graduated to an open crib now. She has been doing well in it and seems to be maintaining her body temperature as long as she is swaddled and wears a hat most of the day. Her weight as of tonight was 5lbs, 4oz, which leads me into her feedings. The staff have put her on a feeding schedule of bottle every other feed and the rest by feeding tube. When she has been taking her bottle she usually takes the whole thing by mouth. If not, they just give her the remaining amount by feeding tube. However, in the last couple days she has been showing us signs that she wants more feeds by mouth. When she gives us the “Cue”, we feed her the bottle even if it is not on her normal schedule to be getting one. This is called “Cue Base” feeding. On top of that we have also been doing a little breast-feeding. Yesterday she took half of her feed by breast and the rest by tube. It is very exciting to see how well she is progressing. One thing she is not enjoying is the vitamins and extra calories that they are adding to her feeds. They can cause really bad gas, so she has been a little uncomfortable lately. It’s sad to watch her squirm around when she is feeling like that.
Because Madaline is doing so well, it looks like she may be coming home in a week or so. Once she is taking all of her feeds fully by bottle or breast, she will be ready to come home. There has been so much we have been trying to prepare for, it’s been really crazy around here. The things that she will need to get done before she comes home are: Another eye exam scheduled for tomorrow I believe, and ear exam, the “Car Seat Challenge”, vaccines, and of course all her feeds. I believe she will pass both the eye and ear exam with flying colors. The other day I asked the development team to make sure she would be getting a hearing exam. Karin elevated her above the bed with an open palm under her head and started calling out Madaline’s name to her and she turned her head towards the sound. She turned her in the other direction and did the same thing and again Madaline turned her head towards the sound. It was amazing to watch her do that.
The “Car Seat Challenge” is a procedure they do at the hospital where they have us bring in the car seat that Madaline will be using. They set her in it for at least a half hour (or the length in which it takes you to get home from the hospital), to make sure that she can handle the positioning without any issues. This insures that she can tolerate the ride home (not that we live far from the hospital, but its good for her to do).
Brady and I also have to prepare ourselves by watching a couple videos on car seat safety and sleeping to make sure we understand the safest ways for her to sleep. As well, I am going to attend an infant CPR class tomorrow morning and we will also schedule a car seat safety class. We also (along with anyone that will be coming to visit her) will need to get the flu shot. Both Brady and I have already been vaccinated for the Whooping Cough, but we are asking anyone that wants to come see her after she is home to make sure that they get these vaccines. The last thing we need is another trip to the ER from a cold or flu after she gets home.
While she remains at the hospital, we get to bring in clothes for her to wear. I went out and bought her some Preemie clothes to dress her up. I figured that she should get as much use out of those clothes as possible, and good use she is getting. But she is growing out of them pretty fast already. She looks so darn cute! The other day, I came in to find that they put a bow on her head. She looked so sweet; I just wanted to kiss her silly.
Now for an update on Ethan. Last time I had posted that he had started the Video EEG to look at his brain waves for a longer period of time. As a reminder, this was a test to see if his brain activity is normal and at what stage in his development his brain is in and if it is the correct age. They kept him hooked up for about 48 hours before disconnecting him. Poor little guy had wires surrounding his head and on his chest as well. He was a trooper though and tolerated it rather well. It took a while for them to get the results back. After much anticipation the doctor came and said that the level of activity that he has is presenting as a 32 week old baby (and he was 35 weeks at the time), and the activity and movements that Ethan is having that we thought might be seizures are not. This was awesome news to get! But it also leaves us with question marks. If it’s not seizures, what is it? And will his brain catch up to the normal age he should be at? Hopefully it is just preemie activity and he will grow out of it soon enough. Nonetheless we were able to soak up the good news for a couple days before Ethan got ANOTHER infection. This poor little guy can’t catch a brake. It was hard to tell where it was coming from and he had just started gaining momentum on his feeds before they had to stop them once again and give him antibiotics. They just started him back on feeds a couple days ago. But of course he is back at the beginning with minimal amount.
On Monday Ethan also went in for his MRI to look at both his brain and his spinal cord. It was a very scary morning all together. CHOC does not have an MRI machine, so Ethan had to be transported over to St. Joseph’s for the procedure. On top of that, they had to sedate him it. I can’t put into words how stressful of a day that was. After all was said and done, Ethan did what he has been doing best, and pulled through. The doctors said it would take a day or so to get the results back, but we ended up getting them back the same day. NORMAL!!!!! The Lord has once again blessed us! At this point Ethan is not showing an abnormal development in his brain. Also, his lower spine does not show that he has Spina bifida or a tethered cord that would restrict his lower extremities or leave him paralyzed. At this point some of the problems we are seeing, we are just going to chalk up to prematurity and growth restriction. Once again, all of our prayers have helped him pull through.
So what’s next? Well, we need to get his feedings going again. This is so important for his bone development and all around nutrition and growth. At this point, his bones are so fragile, anything could cause a fracture. Also, since he is still on the breathing machine, we need to start considering steroids as the option to help get him extubated again and onto the CPAP machine. The steroid helps with any inflammation, but has its own side effects we are concerned about. At this point though, the long-term problems he could have from being intubated for so long, out way the side effects of the medication. It’s also not a guarantee that it will work. So, once again I turn to my family and friends and ask that you please pray for our Little Superman to give him the strength to pull through and to start progressing on his feeds and get off that stupid breathing machine and onto the CPAP.
On the calendar of events, we just had Halloween. I did dress the twins up and they looked absolutely adorable. Ethan was, of course, Superman and Madaline was a Cupcake (inspired by her crib bedding and by a hat that was at the hospital). I have posted some photos for everyone to see.
This weekend is our long awaited baby shower hosted by my mom and sister Stephanie. I can’t tell you how excited I am and how much I am looking forward to seeing everyone. Who knows, I might even have a drink from the margarita machine. (Mmmm.. No salt please.)
I would like to take a moment now to share some sad news. Our much-loved Uncle Tom (Brady’s uncle; Tim’s brother) passed away from pancreatic cancer last Monday at his home in Dana Point. He was a wonderful person who was very loving and will be missed immensely.
And now…. Pictures! I also uploaded some pictures from the CHOC walk onto my Facebook page. If you aren't a "Friend" request me to view them. I will try to upload some more pictures of the twins soon.
Ethan's costume was a Build-A-Bear outfit! And it's still way too big on him
No comments:
Post a Comment