It’s Monday morning. It was a different one for Mary and I. I was flat out exhausted and overwhelmed with things piling up. I stayed at home to work for a bit, while Mary went to her OBGYN for a check up. She was so busy last week that she forgot she has been through a lot too, and should probably make sure she’s doing all right. She is. She got to the hospital in the afternoon to get a ton of news from the doctors. Remy had had some trouble breathing in the morning. She was taken off nasal cannula and put back on SIPAP early that morning. This happens with preemies, but we haven’t gotten used to it yet. Sometimes they just forget to breathe, and you have to startle them, and in this case give them more assistance to remind them to breathe.
The residents also told Mary that Remy had a temperature, and may have possible fungal infection. Her temperature was up to 100.3. Normally when she has a temperature, it is below 98.7, which is more typical of preemies. This is a pretty big concern as our residing physician later told us. When a preemie’s temperature rises and it is not treated right away it could result in death. On the flip side, NICU personnel are so on top of these things and catch them right away and it is very rare I assume in any NICU for that matter that a temperature is not recognized and treated for immediately. Another round of blood work, and a second spinal tap was necessary. In the meantime, she was immediately put on an on antibiotic called Abelcet, which should eliminate any fungal infection should there be one. Mary called to download me and I couldn’t stay home any longer, I headed to the hospital. The doctors were finishing the spinal tap as I arrived, so I waited with Mary in the family room, then spent the rest of the afternoon with Remy. Mary was still able to Kangaroo. I sat with them, hoping for the best for Remy as always.
Tuesday morning we arrived at the hospital to find that Remy’s temperature was down and she was doing great, besides the fact that she still can’t poop without a suppository. Preemies aren’t supposed to know how to go on their own, they don’t have ab muscles or know how to push. But for some reason Remy isn’t able to go at all, which could mean a blockage in her colon or intestines. She was taken off of the feeds and a procedure was scheduled for Wednesday morning. The rest of the day was pretty relaxed, as relaxed as you can expect the NICU to be. I was able to Kangaroo with Remy for a few hours, while Mary pumped as usual. We watched her relax in her incubator and headed home for the night hoping for good results tomorrow. We went home thinking positive!
On Wednesday, Remy had a tough morning, and so did Mom and Dad. When we got in, we expected her to be whisked away at any moment for a barium enema. We had no idea that we would be able to come along for the procedure, which of course we did. As I mentioned, she had been having problems in the restroom area and the attending doctor wanted to check and make sure there were no blockages in her colon. Poor thing is 21 days old and already has to have an enema. It was a pretty hardcore morning for my little girl. To watch the process, well lets just say wanting to switch places with her was at a maximum. Most of the time in the NICU the babies are kept in or near their incubators, and they are only moved if they have to be. Doctors will even do surgeries right there in the NICU. Moving the babies is very traumatic for them, especially if they are getting breathing assistance, as Remy is.
The doctors had to change her from CPAP to SIPAP while manually pumping her in between in order to get her down to the radiation floor for the test. Remy did not like this at all! It took some time to even get the correct size to fit her face, as she is still just a little nugget. Later in the radiation room, we came to find out that she was also pretty clogged up in her nostrils. That made it harder for her for her to breathe. She was a tough little one and made it through, but not without a fight. She was throwing punches the entire time, with fists clenched. I kid you not! It turned out, she was all clear of any major blockages and the doctors didn’t find anything alarming. Sigh of relief! Later in the day she proved how good she was doing by pooping on her own, and it was a good one. I mean projectile! I never though I would say this, but Mary and I have never been so proud. If that was too graphic, well….. I’m sorry, but this is really good stuff for Remy! Ultimately despite our morning it was a great day. While at the NICU, I admittedly spent most of my day working, even holding a business meeting in the lobby while Mary kangarooed. Nothing makes me feel better than to round the corner and see my sweethearts together. Mary got to Kangaroo with Remy for almost 3 hours, and I don’t think the smile ever left her face.
We are hoping she can tolerate the feeds that she will resume today (Thursday), gain some weight and be able to digest the .05 cc’s of formula she gets each hour and go to the bathroom on her own. In fact, she may be taking another stab at her Mom’s milk today! Even though Remy went to the bathroom numerous times yesterday and throughout the day today, she gained 30 grams and weighs a whopping 1210 grams, which is 2.6 lbs. HUGE! Mary says she will change diapers proudly all day. Not to be stereotypical to all of my women readers, but I’d be lying if I didn’t say, “I am perfectly okay with that.” Don’t worry; I’ll be getting in my fair share as well. I’m not afraid to get my hands dirty, pun intended. We’re still waiting on results regarding a possible fungal infection, but so far all available results from blood urine and spinal tap have been negative. We will know more tomorrow and hope for more negative results. It’s only Thursday and it’s been a rollercoaster of a week, but we’re smiling today, and that’s wonderful.
I want to thank Donna and Allison for creating “Help for Remy” on Facebook, we feel so loved and words will never describe how grateful we are to everyone who is supporting us through this time. It is so nice to know that through the years we are all still connected, regardless of how long it has been, and we are truly grateful for all of your friendships. All of you and all of your words give us so much hope and help keep us positive. We had a great day at the NYU Blood bank too. Props to Dave Simone who brought almost his whole office to donate blood for Remy and to Kelly and Marty and all of those who are making their way over to donate too. Remy thanks you!
Here are some pics from this week, She’s getting bigger everyday. The nurses tell us that first she gets cheeks on her face, then her butt cheeks fill in and then come thighs! Our close friend Brenda gave Mary a tiny giraffe while she was in the hospital, and we gave it to Remy and are going to take pics with it all the time, so show how much she is growing. Enjoy!