Saturday, October 30, 2010

The Fog

Annika came home last Friday (10/22), so we've spent our last week in the fog that envelopes all households with a newborn. We've been keeping a low profile as Annika's immune system is very immature, she's had respiratory problems, and in general we've just been really tired!
Miss Annika is doing well, lots of sleeping, eating, and pooping. Mommy and Daddy have been getting all the snuggles we can while trying to keep the big brother and big sister entertained as well.
Friends near and far have been so helpful, and even though we received such an abundant supply of meals while we were making trips back and forth to the NICU, we've continued to have people offer to keep us well fed--what a blessing!
Our biggest struggle since bringing Annika home has been transitioning from the bottle to the breast, but after getting a nipple-shield yesterday and deciding to breastfeed exclusively for 2-3 days, I think we've made a breakthrough and it's been 24 hours since she's needed to take any of her feedings by bottle!
Hopefully the next post won't be so long in coming and will be filled with cute, snuggly, newborn photos...and of course trick-or-treating pics as well!

Saturday, October 16, 2010

On the 12th Day in NICU...

My baby got to try...bottle feeding for the first time! :)

Annika continues to improve each day, slowly but surely. As of today, she's down to room air (21% oxygen) again, on 2.5L worth of air flow on the nasal cannula. She graduated yesterday to an open-top crib instead of the isolette and she's been maintaining her body temperature quite well. She is being given a 3-day course of Lasik (a diuretic to reduce water retention) to eliminate the extra fluid she has from being on IV's for 10 days. We can see the reduction in the puffiness in her face, but the main goal is actually to help reduce extra fluid retention in her lungs. It seems to be working well, as her respiration rate has come down steadily over the past couple of days and except for occasional "episodes" she's staying nicely in the optimal range (20-60 breaths per minute). Because of the reduced respiration rate and longer alert periods, she was allowed to try bottle feeding starting last night, and when we were visiting this morning, I got to give her a bottle! :)

To follow up on my last post, I'm sure most of you heard the update either in person, or via Facebook updates, but we learned on Monday (I think, it might have been days are running together) that Annika had a probable case of pneumonia on top of the premature lung disease from being born at 35 weeks without any steroid lung maturation. Sunday was a rough day, but we actually didn't become aware of the condition until she was starting to make progress again. Honestly, as rough as last weekend was, we feel very blessed that my Group B strep status was unknown when labor began. What seemed like an unnecessary precaution at the time (I've been negative with both other kids, and was again this time we found out later) turned out to make a huge difference in Annika's life. If we had known that I was group B negative, they wouldn't have started her on antibiotics immediately following birth. Without the antibiotics, the pneumonia could potentially have been even more serious than it was, and Annika could have had an even rougher start than she did. Though the journey still seems far from over, we've already starting to see God's hand working throughout the situation. Though it would never have been what we would have chosen, we can still see how much worse things could have been and how God has been keeping us and our daughter safe when we could not have done anything to protect ourselves on our own.

I think the hardest part for me is still that we're just not sure how much longer she'll be in the NICU. She's making progress on all the goals she needs to be, but I think it'll probably still be a week or two before she's ready to join us at home. It's just a bit frustrating, because everyone says she's doing well, but no one is able to tell us how long the rest of her progress might take. She's really setting the pace right now, so it's just really up to her at this point. I definitely want her to be healthy and as ready as she needs to be before we bring her home, but it gets harder and harder to leave her as she's more aware of our presence and also as we're able to do more and more for her. At the beginning it was obvious we couldn't care for her in the medical condition she was in, but now it seems like almost everything she needs we could do at home with the right equipment. However, they have protocol and so she'll continue teaching mommy a lesson in patience.

We finally got pictures of our whole family together (aren't the kiddos all just too cute?) and I just am so excited to think about our little family returning to "normal" though it may be awhile before that actually happens. In the meantime we'll treasure the time we get to spend with her and rejoice in each step she takes toward coming home!

Monday, October 11, 2010

Week 1

Well, I feel significantly better this Monday morning than I did last Monday at this time. I can't ever say I enjoy any part of labor, other than when it's over. However, I absolutely cannot believe my baby girl is one week old tonight. I don't think it's possible for someone to work herself more into my heart than Annika has this week. Not being able to hold her is incredibly difficult, as it feels like there's not any way to let her know how much I love her without doing so.
I apologize in advance, this may be a bit all over the place.
The first week has been rough, I never imagined this would be as hard as it has been. In fact, before last week, I guess I really never imagined the NICU being part of my story ever. Your entire perspective on everything changes instantly. Leaving the hospital without your baby is something no parent should have to do. I think perhaps I was even more poorly prepared, because while I knew that at 35 weeks she would likely have to stay, I saw it as more of a speed bump than a long term stay. After a week, I don't really know what to believe.
Annika is stable for now. She's still on the ventilator, which she's been on since Thursday morning. They've been able to adjust her settings lower over the past few days, but I haven't really heard talk of trying to take her off it for the past couple of days. I think it's mostly due to the fact that while she's holding pretty steady, she's not really making the forward progress the neonatologists would expect for someone of her gestational age and size. Though she doesn't seem to be in pain, she's fairly lethargic most of the time, and they feel like she's "sick." What they haven't figured out is if it's just the trouble breathing that's tiring her, or if she has some sort of bug that they haven't identified.
Yesterday we were there when they rounded, and the one neonatologist in particular seemed fairly puzzled and concerned. She was not re-assuring to a mother's heart. Their biggest concern is that they would expect a baby of her age to have started producing her own surfactant within the first 1-3 days following birth, and there's no indication that she's done so. Her chest x-ray is still very cloudy, she's still taking too many breaths per minute, which is making her oxygen usage ineffective on her own, and is working to hard to breathe. As a result they've started to investigate if there are other structural issues putting more stress on her lungs. Annika had an EKG yesterday, which didn't really turn up anything explanatory or terribly concerning. She has a few small, very common holes in her heart, but according to the cardiologist almost any baby would have visible holes at this age, just most aren't given an EKG because they close on their own in the first few months following birth anyway.
Today she has tests for liver functionality due to some bilirubin numbers that are atypical, and she'll also have another blood draw to see if she's still has elevated levels of antibodies that are usually indicative of infection. I never thought I'd be hopeful that my child had an infection, and it still concerns me, but if she has a bug that she's not getting antibiotics for, it might be a quick and "easy" solution.
The unknown is what's so difficult for me right now. If someone could tell me that she'll be fine and give me a timeline for when she's coming home, I feel like I could deal with it, somewhat regardless of when it might be. I've already mentally extended my "2 weeks at most" perspective I had before and during her birth. I'm trying to prepare myself for a long road.
Unfortunately, I'm also concerned about the doctor's concern. I don't know about all moms, but I can imagine all sorts of terrible outcomes. I know the statistics on 35 week preemies says they almost all do just fine, but yet all of us know that there are always exceptions to statistics and there's not a worse fear as a parent than the thought of losing your child.
We're trying to take things one day at a time, stay present for our kids at home, and make time for each other, but many times it seems that there's just too much uncertainty to find any "normal" in this stage.
We still cannot thank everyone enough for continued concern and support: calls, meals, offers to help with kids, and asking about how Annika is doing. Thanks for loving our daughter with us, even though most of you haven't yet met her. Thanks for loving us well too! Hopefully the next update can be more encouraging.

Saturday, October 9, 2010

Welcome Baby Girl!

As nearly all of you have probably heard, we had our baby girl this past Tuesday. Annika Caroline made her (fast) entrance into the world at 4:43am, and weighed in at 4lbs, 13oz while stretching out to 18."
Though she did make it to 35 weeks gestational age, her lungs are not fully developed. So, the past several days have been a roller coaster ride of adjusting to being a NICU-parent. We're not sure how long this road will take. For the first three days it seemed that we were only moving backwards, with Annika ending up on a ventilator by Thursday morning. She's been holding steady since and today she's actually been making forward progress going down in both oxygen percentage and number of breaths the vent is taking for her. We're hoping that she'll continue to make forward progress, but no one can really tell us when or how that may happen. The kids are both thrilled to have a little sister, but a bit confused as to why they're not able to hold her much (they've both gotten to do so once before she was vented) or play with her, or have her live here at our house. All in all they're doing OK.

Her bilirubin levels rose steadily over the first few days, but she started to poop yesterday, and the levels were down today, so she's only on a bili-light now, and was able to retire the bili-blanket. Even though she hasn't been able to work on eating yet, she's receiving intravenous nutrition, and after initial weight loss, she's picked back up a couple of ounces over the past two days, so we're hopeful her weight is on the way up for good.
So, we're taking things one day at a time and hoping and praying she'll be able to join our family at home as soon as possible. Leaving her behind when I checked out of the hospital was one of the hardest things I've ever done in my life, for sure the hardest thing as a mom!
Thanks for everyone who has prayed for us and Annika, brought us food, called, taken care of the kids, or supported us in so many other ways, we couldn't have made it through this past week without it!