On Saturday night, I had an instant message conversation with one of Abby’s nurses (because I’m facebook friends with as many of them as I can find!) and I can’t tell you how awesome/awkward/hilarious it is to be ECSTATIC about the news she had for me: “Abby had a very big and very loud fart. It was hysterical.”
Yup. You read that right. Fart.
If you’ve read my status, you’ve seen that Abby has had a rough couple of days. On Wednesday of last week, she started spitting up. While this is normal for newborns at home, it isn’t normal for a baby who has precise feeding amounts for her size and regularly digests her food well. So, when she does it more than once, it is a warning that something might be a little off. Usually it means that we’ve increased her feeding too much, or she hasn’t pooped recently, or she didn’t want to digest her multi-vitamins (because those are just gross…poor girl). But after spitting-up multiple times on both Wednesday and Thursday, the nurses started watching for other indicators that something might be wrong.
When I saw Abigail on Thursday afternoon, she was fine. She was her normal, active, alert, and animated self. Her color was good (a nice shade of pink) and I got to hold her for over an hour. When I left, we were still only concerned about the multiple spit-ups. But when Anthony and I arrived for our nighttime visit, something was definitely wrong. Her nurses had looks of serious concern, and my beautiful little girl was no longer pink – she was grey. She looked close to the color of an elephant, with pink undertones. And that animated face that you probably saw in Bree’s video last week? Gone. She was laid out like a limp doll. Her breathing was labored, she wasn’t moving, and (for the first time ever) she didn’t respond to my voice.
Her nurses didn’t need to spell it out for us – Abigail was sick. I had a meltdown. I had no control over the emotions. Fear for my precious angel overtook me and any strength I had left in reserves to keep it together suddenly disappeared. Tears were streaming down my face in a not-so-silent sob. I had to step away from her house in an attempt to pull it together. Anthony hugged me and said that I needed to remember our agreement – no negative energy inside the NICU. Those babies (not just Abby) can feel it, and it is our job to help keep them all healthy and stress free. I did the best I could. The waterworks never stopped completely, and I had that whole “snot nose” thing going on, but I managed to stop the sobs. Her nurses were sympathetic and tried to explain the situation as best they could without having any real answers.
I am NOT a nurse. I am NOT a doctor. I wasn’t even a science major! So don’t quote me (or correct me, for that matter) on any of this. I will probably get a term wrong, or at the very least, misspelled. Ok. You’ve been warned. You can continue reading now.
On Thursday night, the answer to “what is wrong with her?” was, “She may have an infection. It is either in her intestine or in her lungs.” What?!?!? How did she get an infection? Well, it turns out that infections in preemies are common, and it could be any number of things. Only, with Abby, we thought we were in the clear because most infections happen in those first few weeks. She never got one, so we thought she wouldn’t. Yup, well, we were wrong. We will probably never pinpoint it exactly, but it could be anything from something that got in her food, to bacteria grew because something stopped working, to she breathed in a floating bacteria from the air.
If seeing my baby as limp and lifeless as a doll wasn’t scary enough, let’s remember what got us here in the first place – she came 16 weeks early due to an unexplained infection. The fear factor on Thursday was at a new level for me because, for the first time since she was born, no one was in control – we had to figure it out as we went along.
That night, the nurses sent us home – they had to focus on her care and my hovering/sobbing wasn’t helping. Her night nurse said she had tests to run and that she’d be done with them in about 2 hours time. I could call the NICU then to check in. So we went home and waited. 1am rolled around and the 2 hours were up. I called and the nurse told me that Dr. Ben-Avi (one of her 3 doctors) was coming in shortly to assess the test results. While the nurse could not diagnose, she could tell me what it “looked like.” Her breathing was normal for a preemie her size. So the problem wasn’t in her lungs (thank goodness!). Which meant it was in her intestine.
Abby was no longer tolerating her feeds. So they stopped them altogether. They also stopped all medications she was on at the time. An X-ray showed that her intestines were distended. This means that there are air pockets where bacteria can grow. Her belly was blowing up like a balloon, and the nurses could see “loops” which is what they call it when you can see the coils of the intestine through the skin because they are so inflamed. All of these symptoms pointed to an infection, so they started Abby on antibiotics in an IV right away. While we still didn’t know exactly what was wrong, the nurses and the doctor felt that this was something we could handle and that she would be fine in a few days. *whew*
Friday morning brought more answers. It appeared that, for reasons still unknown, Abby’s intestines stopped working. Again, this is common in preemies her size – I have to constantly remember that no amount of personality on her part will counter the fact that her whole system didn’t get the time it needed to develop. This was her body telling us, nope! Not ready for that much work, yet! Stop it! There is a very fancy, very long, very scientific name for “intestines not working” and it starts with “Nec.” That is all I know – don’t ask me to even try to repeat it because I can’t. The point is, it means that if they didn’t get all that air out soon, parts of her intestine could actually “die” and those portions would need to be surgically removed. Ahhh!!!!! Get it out! Get it out!
Well, getting that air out isn’t as easy as you might think. We can’t simply “flush” it out, and we certainly can’t just pop her like a balloon! Much of the air (that is now turning into gas) has to make it’s way out on its own…the only way gas does. The only things we can do to help are to a) not feed her, b) give her antibiotics, and c) suck out what little air we can without hurting her. So, in comes another tube down her throat to periodically suck small amounts of gas and bile out of her intestines. Poor thing… as if she didn’t already have enough wires and tubes attached to her!
And speaking of more wires, on Saturday Dr. Mah called to ask if we would consent to have a PICC line put in. Again, PICC stands for something I don’t remember, but I can explain it just fine. See, with babies as tiny as Abby, their veins are even tinier (is that a word?). So while an IV can be put in, the fluid going through will eventually saturate the vein and (for lack of a better term) “leak” inside her body. So they can’t keep an IV in any one vein for very long. When a baby needs 10 days of antibiotics plus fluids, plus lipids (liquid fats), it means they are constantly having to change veins, which means poking her every 12 hourse at least! We needed something better than an IV. In comes the PICC line. This is a SUPER tiny catheter (about the width of a strand of hair) that they thread through her vein. It goes from the point of entry (which for Abby is her right wrist) and threads through that vein all the way to her heart! (Ok, serious cringing every time I think about it!!). This line protects the vein and can stay in for very long periods of time. Abby’s will only stay in for as long as she needs the antibiotics.
The PICC line procedure is actually considered a “surgery.” While there is no cutting into her, or even anesthetics needed, it requires a surgically sterile environment, and it needs parental consent. So we were briefed on Saturday about the procedure, given the risks and the benefits, signed the papers and helped prep Abby for “surgery” (It isn’t nearly as traumatic as a real surgery, but it still has to be taken seriously.)
Here are a few pictures from Prep. Check out the size of that bed!!! It is what typical, full term babies are put on in the nursery to keep warm. I forget just how small she really is.
After the PICC line went in, we saw a big difference in her comfort level. Always a plus. We left before the actual procedure (they don’t recommend that parents watch things like that – she has already forgotten it went in, but I’d remember that forever). Oh, and she got her first Sweetie because of it! A Sweetie is a pacifier that has glucose (sugar) on it. Research has proven it to be an effective sedative for babies undergoing procedures like this (they give them to boys having circumcisions). She has been a paci baby from the get-go. So to have a paci that tasted so good was apparently more than sufficient. She sucked away on that thing and never noticed what Dr. Mah was doing. Thank goodness.
The only thing left to do was to give her another blood transfusion (her hemoglobin levels had still not returned to normal) and wait for this whole thing to pass (in her case both literaly and figuativley 😉 ). The blood that her Nana (my mother) donated for her was on file and ready to go! And the transfusion always does wonders for her – she came back to her normal pink color before the transfusion was even finished! And I find comfort knowing that she will forever have a little bit of my mom in her. Thank you, Nana! You’ve helped more than you’ll ever know!
By the time shift change rolled around on Saturday evening (around 7pm) things were starting to look better. Her color was back, she was awake and alert again, and the waiting game had begun. The first thing we needed was for her intestines to calm down. This means she needed to pass some serious gas. And at some point late that afternoon she did just that. Her day nurse was in the milk room (where all the breast milk is stored) and when she came out, everyone in the unit was laughing. When she asked what she had missed, the charge nurse told her that Abby had let out a very loud fart. So loud that many assumed it had been an adult! When a nurse said to the group that it had been Abby, someone had said they knew grown men who couldn’t fart that loud! Definitely worth a good laugh. And the end result for Abby was a significantly smaller tummy (from about 28 CM around to about 25 CM around) and a big smile on her face for the nurses. So, now you know why an IM that night that said “she farted” was music to my ears. 😉
I have to hand it to the women in this unit. The care they take of these children is phenomenal. Thursday, Abby was just so sick. And because her nurses were so proactive in her care (blood tests, X-rays, physical exams, etc.) they caught whatever was wrong with her early. So early that the infection never got big enough to show up in her blood test. But they treated her for an infection with strong antibiotics anyway, and they worked. Here we are on Wednesday, almost a week later, and she is about 90% back to normal! It is amazing what they can do!
We got to hold her yesterday. She was a wiggle worm for both of us, which is a great sign. She was rooting like crazy for me, but that is a WHOLE other story. She is still off her feedings for now, but she is doing so much better so those will probably start back up today or tomorrow. An X-ray yesterday (Tuesday) showed that while most of her intestine had gone back to normal, the end of her bowel was still distended. That needs to go down before we can feed her again. It is amazing to me that a bag of yellow fluid and some lipids help her so much! They tell me she hasn’t wanted to eat yet, but she will tell us when she gets hungry. I don’t blame her – I wouldn’t want to eat either, if my tummy had swelled up like that! But the good news is that this too, shall pass. She will be fine and it won’t set her homecoming back at all.
So there you have it. A story about baby gas that was worth writing down.