The Big Day

Today is the day. The Big Day. Serenity's due date.

Serenity is 40 weeks Gestation age. Or, 0 days old in adjusted age. Or, 15 weeks 5 days in literal age. However you want to say it, she has reached the Big Day.

Let's talk about where Serenity is today, in terms of growth:
She is 3 pounds 8.1 ounces (unfortunately we don't know her dry weight (dry weight = weight without all the extra fluid she is holding on her body))
And she is 14 and 3/4 inches long.

So, she is not as big as a typical term baby would be if she would have waited to be born until today, but she has grown since she was born at 24 weeks and 2 days, weighing in at 1 pound 6.2 ounces, and 12 inches long.

Today has been sort of strange, not surreal, just strange. Having my mind on my sweet girl, and thinking about it being her due date, and thinking about how if things would have happened the "ideal" way, we would be taking our sweet, brand new baby girl home in a couple of days. But that will not be the case. Serenity will continue to stay in the Neonatal Intensive Care Unit for quite a while longer.

As for how Serenity, she doesn't realize today is a big day. She doesn't realize all of the thoughts flooding our minds and hearts.

The past 110 days, 15 weeks 5 days, however you want to look at it, have been, as they said in the beginning it would be, a roller coaster. The place she is now is not horrible, but it's not a good enough place to talk about sending her home anytime soon. She is still on the vent. However, there is talk around the NICU about extubating her soon. She now has a chest tube allowing the fluid in her chest to continuously drain out, since the fluid they extracted out of her chest came back, plus some. And they are currently trying to figure out what exactly is the reason for it. Also, the mucus fistula (bottom half of intestines) is still not in working order. Although, no one has been jumping up to take action to find out what is going on with the mucus fistula--I hope that will be a topic of discussion very soon.

I am thankful, though, for the care I have been able to give Serenity. I may not be able to do much, but any little bit helps me feel like I am able to take care of her at least to some degree. I have been able to give her baths when I am there during the times she needs one. And I am able to change her diaper when I am there during the time the nurses do their hands on assessment (which is when they change the diaper). The nurses have even taught me how to suction out her vent tube which is essentially suctioning out her lungs. And they have shown me how to give her a suction support breath, which gives her some extra oxygen long enough for her to recover from being suctioned. And then there are the little things such as giving her a pacifier and covering her with a blanket when she needs those things.

For now, though, we look forward to tomorrow, and many more tomorrows to come. Living day by day. Enjoying the good moments, and praying ourselves through the bad ones.

That's life.

Some things in life just make your heart hurt. Unfortunately, that's life.

Serenity: 15 weeks 1 day (Gestation age: 39 weeks 3 days)

Well... I feel like we are back in the land of constant changes. Not always changes for the better. This morning, Serenity had an ultrasound of her right lung because they had seen some fluid in an x-ray. This fluid ended up being between her lung and her rib cage. This is not an okay place for fluid to be hanging out. So, a procedure had to be done in order to remove the fluid. There was a butterfly needle (VERY tiny needle) inserted between two ribs and the fluid was (not to be gross) sucked out. They extracted 27 ml. of fluid (which is a lot for someone as tiny as her) which looked like it had quite a bit of old and new blood in it. The fluid is being sent off to be cultured so we can know more of what it might possibly be. In the meantime, we will be watching to see if more fluid builds up. We don't want this to happen. Preferably, she will stay fluid free! Also, ever since the procedure was done to remove the fluid, Serenity has been resting so well, and they have been able to go down on her vent settings considerably!

Now, on to other business. It appears as thought the bottom half of her intestines are not functioning at the moment. Thankfully, the top half is at least functioning SOME (we think), but because her mucus fistula (bottom half of intestines) has been backing up, the stool in her ostomy bag isn't a true reflection of how much stool is passing through the top half of her intestines. The first step is to stop feeding stool into the mucus fistula so we can see how much stool is actually working it's way out of her stoma. Our hope is that everything is flowing through the top half of her intestines just fine so that she can continue feedings and hopefully GROW! As for the bottom half, there is talk of a lower GI some time early next week. We will see.

This is definitly a low point on the "NICU roller coaster"... Now we just wait for it to start going back uphill.

Serenity: 15 weeks (Gestation age: 39 weeks 2 days)

I was looking at my pregnancy tracking app on my phone this evening, and realizing that it was proclaiming,  "5 Days to go!" Wow. Is Serenity's due date really only 5 days away?! Where has the time gone? Time has been sucked with a vacuum-like intensity into the abyss that is called the NICU. That's where time has gone. No one goes looking for it, for fear they may never come back.

Today, in the abyss that is the NICU, it was hard. Stopping long enough to truly think about where we are on the progress chart. Serenity is 5 days away from her due date, and not even close to going home. She is still on the ventilator. She is barely able to eat. She is holding fluid like a person wandering in the desert attempting to hold on to any water she can manage to hold on to. And to top it all off, she now has a firm spot in her side. We are still waiting on the ultrasound results as to what exactly that is.

I think Serenity is beginning to get fed up with all of this mess as well. As of late, she has become very irritable for no reason that anyone can figure out, other than she is just older now, and tired of living the NICU life. I can't say that I blame her. I love it here and all, and will greatly miss all of the hospital staff that have become great friends, but I am ready to be home.

Home. What even IS home anymore? The one time I was able to make a short trip to my actual home, it felt foreign. It smelled weird. And not just weird, but unfamiliar. When I come to the Ronald McDonald House, it feels more familiar than my own house (which makes me sad), but it still doesn't feel like HOME. So I'm left feeling as though I have no real home. I can't even suck it up and tell myself that "Home is where the heart is." Because my heart is in 3 different places right now. My heart is with Serenity, with Liam, and with Ryan. All of which are in different places.

For now, this is home. As much as I wish to be with my whole family in one place, this is just where we are as a family right now. As much as it hurts, and as much as I want it to end, this is just life.

Serenity: 14 weeks 3 days (Gestation: 38 weeks 5 days)

Multiple people have started asking how Serenity is doing, so I figured that was my cue to write an update.

If my calculations are correct, today is "Day 102" for Serenity. Oh yes, and she is now considered the "Senior Resident" in the NICU. It's somewhat laughable that she is the oldest baby in the NICU, and nowhere near being the biggest baby.

Which brings me to my next point. Serenity is still small. She is over three months old and is still hanging out around the three pound mark. She has had a rough time with her gut and being able to have breast milk on a consistent basis. She had an upper GI this week to see what exactly is causing blockage in the upper part of her intestine and causing everything to back up into her stomach. The consensus is that she has "strictures". Basically, my understanding of strictures is that it means areas of the intestine that is smaller, on the inside, than the rest. When she is edematous (holding fluid/swollen), it makes the strictures worse. Therefore, not allowing very much (if anything) to pass through. Our hope is, to get her swelling down, and start feeds again. Then we will find her "sweet spot" in terms of the volume of milk per hour she is able to pass through her intestines without backing up, and keep her there so that she can grow. Unfortunately, this will mean keeping her on some amount of TPN, which has already done damage to her liver, and will continue to damage it for as long as she has to be on it.

The other issue at the moment is Serenity's lungs. Her right side has a lot of fluid right now, and they call it a "white out" on the x-ray. On the vent, she has gone up on her pressures and rate (amount of breaths per minute), but her oxygen requirement is pretty darn low most of the time, which is good. :)

Overall, our little girl is doing better than horrible, but not as good as great.

Thank you all for your love, support, and prayers.

Serenity: 13 weeks 3 days (Gestation: 37 weeks 5 days)

Today marks a pretty big milestone for Serenity Hope. Today she is 3 pounds! I cannot express how excited we are about that number!!

Despite the weight gain, Serenity is still not being fed due to her gut issues. (I can only credit everyone's prayers being heard, for that.) She had an x-ray that showed some sort of blockage in her intestine. What that blockage is, we are not sure yet. Her stomas are both edematous (holding fluid) so that may be the cause of some of the problem--creating blockage in the intestine from being swollen and causing everything to back-up into her stomach.

Thankfully, with the help of some Lasix getting fluid off of her lungs, her oxygen levels have been able to go down some from what they were the other day, which is good.

As far as updates go, I believe that is all--Besides the fact that she is cute as a button and as sassy as can be. :)

Serenity: 13 weeks 2 days (Gestation: 37 weeks 4 days)

Hello all. I'm a bit bummed to need to write again so soon. But I wanted to give everyone a quick update on how Serenity is doing.

Her feedings were stopped today because of the "junk" they've been suctioning out of her stomach looking worse. Some colors are normal and okay, but the colors they were seeing were not okay. So here she sits, once again, without being able to eat. :(

So far there is not a set game plan on what the next move will be for her stomach. I believe the plan at the moment is to let her stomach rest for the rest of the weekend. Hopefully tomorrow the surgeons will be able to come around and check up on her and see what they think.

That is about the only thing different worth mentioning. But please continue to keep her in prayer. I was just sitting next to her this evening and thinking about how nice it will be to be able to do something as simple as picking her up without having to ask permission first. I'm so looking forward to that day. In the meantime, please lift her up in prayer. Thank you all for your love for our sweet baby.

13 weeks old (Gestation: 37 weeks 2 days)

Today, October 4th 2013, is Day 91 in the NICU. Wow. When I sit and think about all the numbers, it all starts seeming so strange. Day 91, 13 weeks old, 37 weeks and 2 days gestation, and tomorrow will be Serenity's 3 month birthday! 

It's been a long time, it seems, since I've written an update (I appear to be repeating this phrase often). Overall, the phrase, "No news is good news" still holds true, but everything is not all rainbows and unicorns just yet. Serenity has proven to be one tough little cookie so far, but she still has a ways to go. 

It's still so surreal to me to have a 3 month old child that still weighs under 3 pounds. Thankfully she is VERY close to 3 pounds, but she hasn't broken that number on the scale yet. Her last weigh in was 2 pounds 12.10 ounces. 

It's also strange to me to have a 3 month old who has never had a normal feeding. She has never had a bottle, and has never breastfed for a meal (we HAVE, however, attempted two trial runs on the breastfeeding with some success). All of her feedings have been via a feeding tube. 

As far as breathing goes, this is the longest amount of time she has been off the vent. The ram cannula has been doing a good job for her thus far, but several days have passed since her last dose of steroids and she is beginning to need more oxygen. For now they are keeping her on the ram cannula, but we need her lungs to behave themselves and stay strong. 

And then there is her gut. There is so little and so much to say about her gut--all at the same time. Her gut simply needs to heal so that everything can work properly, and our tiny baby girl can grow. Having to continually stop feedings does not help in getting a person to pack on the pounds. And during the times Serenity is not able to handle the full amount of milk she needs, she is having to be on TPN. This gives her  the nutrition she is missing out on. Her liver has already been enlarged for quite some time from prolonged exposure to TPN (she has been on it for almost the entire duration of her life). The longer she needs to be on TPN, the more damage is done to her liver.

Regardless of everything that is still hanging in the balance, we have been so blessed by this precious little girl, and we have been so blessed by everyone who has been praying for her and encouraging our family and loving on us throughout this entire journey. We ask all of you to continue praying for our sweet baby girl as she struggles to grow and become big and strong.