BillstronBlog

Molly seems to be responding well to the treatment as indicated by the x-rays. Sometimes she gets a little fussy because she is hungry, but overall, she seems really content. The bradycardias don’t seem to be happening as much either. That is a huge relief because of how scary they are for her momma and me.

The big news is that Molly’s now weights over 5lbs — 5lb 1oz — as of yesterday. Krista even commented that she is starting to get some fat rolls on her arms and legs. She may be as heavy as a normal baby before we take her home, but I’m getting ahead of myself…

As before, we’re moving forward with baby steps. As long as she doesn’t have any more setback, our little porker will be home within a few short weeks.

Molly’s recent run of bad luck was precipitated by bloody stool. The doctors took all of these steps as precautions for the possibility that she would have necrotizing enterocolitis (NEC). Molly had one primary symptom of NEC, but she didn’t really have any others. The only way to tell for sure was to x-ray her belly. The first couple of x-rays were inconclusive, but by Monday morning they had enough evidence to make the diagnosis — she has NEC.

So what is NEC? The first key to it’s gruesomeness is the word necrotizing. Define necrotize: death or severe damage to living tissue. Not something you want mentioned in the same breath with your daughter. Enterocolitis refers to a disease of the small and large intestines. Basically what happens with NEC is the natural bacteria in the gut get through the intestine wall into the muscle of the intestine. Once there they eat the intestinal wall, weakening it. If the intestines get too weak they can rupture… not good. This would require surgery for sure.

Luckily for Molly, she has a very mild form of NEC that they caught very early. Her course of treatment is 10 days (counting from last Sunday) of strong antibiotics and intestinal rest (nothing consumed by mouth). We are very luck that they caught this when they did. In fact, the x-rays show that she is already improving.

I haven’t written in a while because I didn’t want to be overly negative about the diagnosis, but at this point, the main feeling I’m having isn’t fear, it’s disappointment. I know this pushes the date we get to take her home farther into the future.

One last thing: Be careful what you read about NEC on the internets. The doctor told us this specifically because she didn’t want us getting worked up. Consequently, I haven’t spent any time reading about what we’re up against. You have been warned.

Yesterday was very trying for us. We saw most of the progress Molly worked so hard to make, evaporate before our eyes. By the end of the night, she was back in an isolet (incubator) because she was having trouble keeping her temperature up. This feels like a crushing blow.

Hopefully today will be better. All we can do is remember that she is exactly where she needs to be, and we don’t want her to come home until she is ready. It’s hard to remember some times.

Well, the doctors and nurses have been telling us that Molly Z can take a few steps back at any time, and today she has. Last night she started back on the cannula. When I got here today with Andrea, the nurse told me that she was not having a good day today. She had had two Brady’s on the overnight shift, and then she had one more while Andrea and I were here. She also had some blood in her stool so our nurse, Bonnie,who is really wonderful, reported it to the doctor. She had a small cut on her bottom this weekend, but Bonnie thought the blood was more than what should be in the small cut. They ordered an x-ray of her abdomen, which looked “suspicious.” They will be doing serial x-rays to check her progress and blood work to see if she has any infection. In the meantime, she has been cut off my milk and put back exclusively on fluids received through an IV. They took out the feeding tube that was in her nose and replaced it with the IV. She is also receiving antibiotics and will continue to do so for at least 48 hours. They don’t want anything in her stomach that she has to digest in case she does have some sort of intestinal infection. They also put a tube down her throat into her stomach to suck out anything from her stomach, including bile or whatever.

I worked half a day yesterday, and I finally got to the hospital around 4:00pm. It was wonderful to see Molly without the nasal cannula blocking off her features, and one less tube makes holding her all that much easier. We did some kangaroo holding after dinner — that is where you take your shirt off and place the baby on your chest. It had been about a week and a half since I did any kangaroo holding with her. It felt wonderful.

Unfortunately, progress can be fleeting. When we got back from picking up Aunt Andrea from SFO, she was having troubles. She had a Bradycardia about 30min before we got there, and while I was holding her, she had another. I really hate Brady’s, they are terrifying. The nurse promptly put her back on the cannula.

Seeing Molly back on the cannula pretty well ruined the night, but it seems like the doctor was probably moving too quickly with her. They had been giving her caffeine to help her remember to breath, and they took her off that at the same time as the cannula. To me, that seems like a couple of big steps to put together…

But what do I know. We haven’t seen her yet today. Hopefully things are looking up.

Molly got her nasal cannula off today. This is a huge step! I don’t know any details yet, but we’ll update when we know more.

Ever wondered who the ugliest woman in the world is?  Google will tell you and give you an image.  Just type ‘ugliest woman in the world’ into a google search box or click the link below.  Check out the first image result.  Look who just beat out a cracked-out Amy Winehouse.

ugliest woman in the world - Google Search

Continue reading…

Well, I was starting to feel a little behind the curve in terms of diaper changes. Bill is so eager to change the diapers that I almost feel bad taking that away from him. Okay, I admit that it is also nice to get out of the poopy ones. However, I know I need to change more to get my technique down. Yesterday Bill was not in the room when it was time to change the diaper so I thought rather than waiting for him I would go ahead and change her. When I opened up the diaper, there was only massive amounts of pee. Secretly, I rejoiced that there was no poop. As I was wiping her off, she peed a little more on the wipe, but I caught it all on the wipe. As I was pulling off the dirty diaper, she shot (yes, that is definitely the correct verb to use) poop onto the clean diaper below. It was a good thing the nurses showed us how to put a clean one under the dirty one. By this time, Bill had come back in, and we both got a big kick out of that. I put another clean one below the poopy one, got Molly Z all cleaned up again, and pulled off the dirty one. Once again, she shot more poop onto the next clean one! Of course, Bill is about to fall over laughing at the whole situation, cheering Molly on. The nurse is also telling me that I am doing a very good job of contracting Molly’s abdomen, helping her to poop. By now we are up to three diapers. Can you predict where this is going? So I got a fourth diaper. Put that under the dirty one. Got Molly Z all cleaned up. Pulled off the dirty diaper. Guess what she did! That’s right–shot more poop onto the fourth diaper! We’re talking lots of it, too! I’m not exaggerating when I say that each one was the most I have seen from her. I learned my lesson then, and waited a few minutes before changing again. She was done at that point, though. Four dirty diapers later she was sooooo much more content.

That’s the way it works in the NICU — baby steps.  The fact is, we’ve been really lucky that she hasn’t relapsed in the past few days (touch wood).  The lack of steady progress and uncertainty of it all can be quite frustrating at times though.  I have maintained my sanity by keeping the attitude that she is in good hands and can take as long as she likes to come home, we just want her healthy.  This has allowed me to detach time from health, and just wait for the progress.

Speaking of progress…  Today she gained 1oz, and they lowered her oxygen to 1 liter/t (this is a flow rate but I don’t know the unit of time is) in order to ween her off the oxygen.  This isn’t huge progress, but baby steps will do for my baby.

Yesterday Molly and I attempted breast feeding for the first time. The nurses said that she would probably not do much more than kind of poke around, lick, and sniff a little. That is mostly what she did, but she did suck for a little bit. She is still developing the reflexes needed to suck, swallow, and breathe at the same time. She is also still holding her breath when she starts sucking too much (on the breast or pacifier). The nurses assured me she should still develop the ability to suck so we should eventually be able to nurse with no problems.
She is still getting my milk via a feeding tube, but it is increasing every other feeding, or every six hours. They think that there is a really good possibility that starting tomorrow or the next day she will be getting only my milk and nothing else (i.e., no supplemental nutrients). She has done a great job of digesting her food (milk) so they are able to keep increasing the amount and simultaneously decreasing the supplement. It was really fun seeing her try to latch on, and then actually latching on. I think she is a little bit cuter every day. We have been able to hold her for most of the day now because she doesn’t get overstimulated as easily as she was previously. We give her rests in the crib every few hours or when we want to take a walk together or something.

Yesterday was really a huge day for Molly Zelda. In addition to the two attempts at nursing, she got off the big mask and is now wearing only a little tube in her nose. It is much less obtrusive and allows for me to try to put her to the breast. She also got taken out of the incubator and is now in an open crib, making it much easier to kiss her, touch her, and take her in and out to hold.