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Life So Far As A NICU Mom

In my last blog entry I wrote about my concerns regarding the antiviral medicine that Jace is on. Since then I've had the privilege of talking to two neonatologists. One was Jace's neonatologist, who I had already spoken with about my concerns. And the other is the mom of a friend of mine. I had asked my friend to share my blog with her mom, and to let me know what her mom thought. Not even half a day later, I was on the phone with her mom who is a wonderful, extremely knowledgeable, neonatologist all the way in sunny California. It was such a blessing and a favor I'll never forget. She immediately calmed me and put me at ease. She reassured me that my reaction was normal, that even though this is something that she and other neonatologists see every day, that this is something that *I* don't see every day and I was doing the right thing by making sure I understood exactly what was being done to my son and why.

After speaking with her and feeling a lot more calm, I was able to talk at length with Jace's neonatologist. I asked her every question in the book and she answered much the same way my friend's mom answered. She assured me that not only is she working with an infectious disease specialist regarding Jace, but that specialist also had access to Jace's medical records and knows everything there is to know about Jace and his exact diagnosis and the results of all of his tests and it was at THAT specialist's recommendation that Jace be on the antiviral medicine. Something about that really spoke to me. Knowing that Jace's doctors, while being specialists in their own right, have constant contact with an infectious disease specialist and THAT specialist backs up the decisions being made for Jace, really made the decision for me and for my husband. And that is that Jace will stay on the antiviral. Do the side effects still scare me? Of course they do. But I have a much better understanding of the odds of those side effects and the odds of what could happen to Jace if he is not on this antiviral. I feel more informed that I could ever hope to be and truly feel that what we are doing is in Jace's best interest.

On a more personal side of things, I am doing okay. Jace (husband Jace) is doing okay. We both have weak moments where we cry and/or get upset. This is a lot and something no parent is ever prepared to deal with. The NICU life is tough. And for most parents, it's something they're thrown into. Something they're forced into. There isn't anything you can do about it. It's all up to your baby and to God. It can be especially difficult because there are some days where I just want to be home. Some days I just don't feel like going to the hospital. But not going to the hospital means not seeing my son, and that's sad too. Not to mention how it breaks my heart to leave Scarlett every day. Luckily she is in great hands with my mom, mother-in-law, my sister or her regular babysitter. But it still makes me sad because when I leave she always says "mommy going to see baby brudder", and I just really wish she could come with me and see her "baby brudder" too. I mean, this is not how I ever expected Scarlett to experience her little brother. Not to mention that Jace goes to the hospital every weeknight around 8:30 and doesn't get back home until after 10. That can be tough too because I feel like I never see my husband. Thank God for the weekends is all I can say.

I also feel guilty a lot of the time because I'm not always spending quality time with Scarlett. Because even when I am home with her, I'm constantly pumping. I pump every 2-3 hours during the day, and every 2 hours in the evening. So that really doesn't leave me much time to start any kind of activity with her. I mean, this is how it goes: I pump for 30-35 minutes then I chart what I just pumped and then label the container with the labels from the hospital. Then I wash the pump parts, sterilize them and by the time alllll of that is done, it's been almost an hour and so I only have an hour left before I pump again. It can be pretty tiring. The other night I slept through my alarm for my middle of the night pump and I woke up with my boobs KILLING me. I thought they were going to explode. And what really kills me is that overall, I'm not producing a lot. I get the most milk during my middle of the night pumps and the first few pumps in the morning. Then the rest of the day I don't get as much. So it can feel like I'm killing myself for nothing. I've ordered a supplement that the NICU nurses recommended for me to increase my milk supply. So hopefully that works. It's something new that I've never tried. I wasn't a big milk producer with Scarlett either, so I tried several things when I was pumping for her and I don't remember them helping much, so I'm hoping this is different. Stay tuned on that!

Anyway. Enough about my breasts and milk production. On to a more important topic. And that is Jace's progress. He is doing so great, you guys. I almost hate to say that because I don't want to jinx it. He is gaining weight. As of right now, he is 4 pounds 14.5 ounces. Almost 5 pounds! Go Jace! It's amazing. His weight gain is not a concern and not what's keeping him in the NICU. He is also holding his body temperature well and he isn't having any sleep apnea episodes. More great news, and again, those things aren't what's keeping him in the NICU. He will be off of the IV antiviral as of today, and they will start him on an oral version of the antiviral. More great news because that means his PICC line gets to come out (one less accessory) AND since it will be an oral form of the antiviral that means we can administer it AT HOME! The only thing keeping him in the NICU is his feeding skills (or lack thereof). He has to start feeding better off of the nipple (bottle or breast), before they will allow him to come home. And that could take weeks. It can take weeks because they don't just throw these babies into nipple feedings. It takes a lot of energy for these itty bitty babies to suck from a nipple and the last thing we want them to do is overwork themselves. So they start with one feeding a day. Then, once the baby finishes an entire bottle they move on to one feeding per shift (night shift and day shift), or two feedings per day. Then once they master that, and by mastering I mean they have to finish the entire feeding and have zero problems, they will move on to 3 feedings per day, and so on and so on until all of their feedings are nipple feedings and they are completely off the Gavage tube feedings. The gavage tube is used for infants who do not have the strength or muscle coordination to breastfeed or drink from a bottle, and that is what Jace is currently being fed by except for the one nipple feeding he's getting daily. So now you can see how something as small as him being unable to feed on his own can keep him in the hospital for several more weeks. However, if that is the only "problem" that Jace has, we will take it.

I recognize all too well how incredibly lucky we are. NICU babies, let alone NICU babies with CMV, all have their own battles to fight. Two nights ago Big Jace texted me while he was at the hospital and said, "they admitted a new baby tonight. The new baby is so small and I don't know if it's a he or she but we need to pray for the parents and baby. This baby has to maybe be 2 lbs". And I cannot tell you how hard that hit me. It's like this: before having a NICU baby, I would see pictures of preemies and think to myself how small they were and how scary that must be for the parents. But now that we are living it, it has a much deeper meaning and connection. Your heart BREAKS for the smaller babies alongside yours. Your heart breaks for the fellow NICU parents who you see day in and day out. It's a whole new world being a part of the NICU. It really truly opens your eyes to so much. We will never be the same after this experience.

I think that's it for now though. I'm sure I'll have more to update y'all in the next few days to come, and even if I don't have any updates I'm going to try and write more often about my experience with the NICU and with CMV. Big Jace and I sometimes get so frustrated because we both feel that the education and awareness for CMV is nonexistent and that needs to change.

Oh, and two more things. The first: I wanted to ask you all for one thing. Please continue to pray for us. Pray for Little Jace's health and his life and that he will be able to come home soon and that he will thrive and do well and live the best life. And please pray for all of the NICU babies locally and around the world. Their voices are so little, and they need us to advocate and pray for them. Secondly: A huge THANK YOU to everyone who has been bringing us dinner and sending us gifts and saying prayers this whole time. I cannot explain how much it means to us to have so much support! We have gotten meals almost every night since I have been home! We even got the biggest box I've ever seen full of goodies from Omaha Steaks. We have gotten so many clothes for Jace that I haven't had to buy anything yet. Our freezer and our hearts are so full and I PROMISE to pay all of this kindness and generosity forward! Praise Jesus!

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