Out with the Old, In with the New

Happy new year, everyone! This year has certainly been an eventful one for us. While listening to the radio the other day, the commentator was reminding listeners to reflect on a “God moment” this year. I told Kevin that this whole year has been a “God moment” for us! We have seen amazing healing for the girls as well as a TON of restored relationships. God has supplied our needs by bringing people into our lives, and my prayer is that we can be a blessing to them as they have been a blessing to us. I don’t want to discredit the people who have been in our lives already. You all have played a major part in keeping us sane as we deal with this hiccup that will be a blip in a very long lifetime for our family.

So the girls were doing pretty well until this week. We were so excited by seeing how well Eva was developing. She was starting to practice latching on for feeds, and she even practiced eating from a bottle. And then on Wednesday everything changed. I got a call that morning that she was having spells one right after the other, and it was so unexpected that they had to take some drastic measures. So after a few weeks of being on a nasal cannula she is now reintubated. We went to see her that night, and my little girl definitely looked bad. He tummy was so swollen, even to her back, and she wasn’t breathing at all on her own. Dr. Nederhoff was there, and he told us that after some x-rays of her belly they thought she had necrotizing enterocolitis, the same condition they thought Abigail had a few weeks ago. If you look it up online it seems pretty grim. Basically (from my understanding) blood (and therefore oxygen) isn’t getting to the bowel walls, so the tissue can be compromised and even die. When it dies, her bowel can perforate and she would need surgery. I think it’s the same thing the Duggar baby had to deal with. They stopped Eva’s feedings, put her on antibiotics, and are basically going to give her bowels a week to rest. The doctor explained that if they catch NEC in time it can resolve itself before it gets to the point where she needs surgery. Over the past couple of days she has been resting quite a bit, and she is definitely improving.  Her tummy is soft and pink, and she’s not acting like she’s sick. And she is also doing some breathing on her own, even though she is still intubated. She’s being weaned from that so that she can be put back onto the nasal cannula. So while we were looking forward to getting her home soon, this little setback means it may be a little while longer before she gets home. It’s slightly amusing and touching, because we were informed that Dr. Nederhoff lost sleep over trying to figure out Eva’s situation. I don’t know what it is about our family that causes doctors to lose sleep, but we are moved to know that they care and God is using them to preserve the girls.

Abigail is still having a tougher time. She is extubated now, which is a huge relief for us. And until the last couple of days it looked like she was on track just like Eva. But for some reason she is starting to have some pretty nasty spells. I was holding her a couple of days ago as she was sleeping, and she decided to stop breathing. Not a huge surprise; it’s happened before. If she doesn’t self-resolve and bring her heart rate and/or oxygen levels up within a few seconds, she then gets some light stimulation (back rubs, head rubs) to remind her to wake up and do some breathing. Well, recently she has been spelling, and her face and lips turn blue, and the stimulation hasn’t been working. I take that back. It works, but it takes A LOT of stimulation to get her going, more stimulation than it should. The first time it happened my heart almost stopped. Thank goodness our nurse, Morgan, was there to keep me calm and to take charge of the situation. The nurses are noticing a trend that it seems to happen around meal time, so they suspect it might be acid reflux. She gets uncomfortable, has some pain, and doesn’t know how to handle it, so she stops breathing. Reflux is a common thing for preemies, and it doesn’t help that gastrointestinal issues do run in the family. But hopefully she will outgrow it. It just doesn’t do Mommy’s heart any good to see her turn purple like she does.

Lots of people have been asking me if the NICU has given us a date as to when they can come home. The best guess is sometime around their original due date, February 10th. They have to be able to do several things before they can be discharged. They have to go without spells for 5 days straight. They have to be able to feed, and that can be tough for them to learn! They have to eat and breathe in a rhythm. Although Eva was doing a pretty good job on that. Abigail hasn’t had the chance to practice yet. And they have to gain weight pretty steadily. Again, they were doing fairly well on that until they had their feedings stopped to deal with the other issues they are experiencing now. They will probably go home on oxygen, and while Kevin isn’t thrilled with the idea, I’m actually glad. I don’t know if it will reduce the risk of SIDS, but I imagine it would. I know I’m going to be nervous to even sleep when they come home. We have fought so hard for their survival, Mommy isn’t going to lose them as they sleep in their crib!

This whole journey has certainly been one where Kevin and I have learned so much, and we have had to definitely come together as a team and do what’s best for our girls. I’m starting to realize that things aren’t going to be typical for our family for the next couple of years. I guess I assumed that when the girls hit 40 weeks that they would be like a normal newborn, and all they would have to do is some catching up developmentally. But them not being in the womb has really left their immune systems pretty compromised, and I’m only beginning to understand how much so. I didn’t realize how much we would have to limit contact. I was able to reach out to my high school friend who had preemie twins to find a pediatrician who is familiar with preemies and what they need. It’s going to be a different path that our family has to travel. Thank goodness we do have some resources! It was so great talking to Kevin’s aunt, who used to be a nurse in the NICU and who could advise us on a few things. Plus we have awesome primary nurses who fill us in on every little thing that is going on with the girls. I can’t express how blessed we are to have them taking care of the girls.

Please keep Eva and Abigail in your prayers. Just seeing pictures of them from when they were first born and looking at recent ones is just a huge eye opener. Kevin jokes that they don’t look like aliens now; they actually look like babies! We are winning all of the small victories that are getting us closer to bringing two precious daughters home. 🙂

In closing, I thought I’d add some pictures of the girls. Plus, here is a YouTube video about what it’s like to be a mother of twins and the kind of questions I expect I will get asked. Some of you have seen this already, but it’s pretty amusing. Although it doesn’t totally apply to me because my girls ARE identical. Enjoy!

 

Eva spending some time with me

I swear they did this on their own

 

A smile from Abigail after her bath

Another smile from Abigail

Daddy's hands calming Abigail down

Me feeding Eva...gotta learn sometime!

Daddy feeding Eva

Cute Miss Eva!

She really doesn't like her baths much

An awesome Christmas present: our first family photo!

Cozy together, like they were in the womb

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