The ups and downs of having preemies

So I realized it’s been a couple of weeks since I posted. I want to give a quick update on Eva and Abigail. We are definitely getting closer to the end. In November I never thought we’d see the light at the end of the tunnel, but time has really flown by! And we have learned SO much. I was holding Eva today as she had a little spell, and when spells happen, the monitor alarm goes off and nurses rush over to try to get the baby breathing again. So when Eva spelled today, I heard her nurse, Morgan (who was working with another baby), shout across the room, “Don’t worry, Laurel can take care of it, she knows what to do! She’ll be fine!” Needless to say, I knew what to do, but the whole thing left me amused. Kevin and I are pretty comfortable now silencing alarms, disconnecting wires from the girls so we can hold them, watching their cues for when they are having problems, etc. I never thought I’d see the day that happened, but that day certainly came and went a while ago! πŸ™‚

Since I last wrote, quite a bit has happened. You all know Eva was diagnosed with NEC. Only a few days after she was diagnosed, Abigail decided to copy her sister and also get diagnosed with NEC. Although she didn’t have the nasty spells her sister had. And actually, she never had to be reintubated. However, she had to stop her feeds, too. And since she had to get nutrition and medicine another way, we consented to have her PICC line reinserted. It was either that or have her poked with an IV pretty much every day, which her poor sister had to endure. So after both girls went without food for over a week, they started them from square one on their feeds. Because Eva’s NEC presented first, she began eating first and was at full feeds first. Now, something they do in the NICU to add calories to help the girls gain weight is they add fortifiers to the breast milk. A couple of days after Eva was back at full feeds and on the fortifiers I received a phone call from the NICU that she had a bloody stool in her diaper. Kevin and I went to spend the day with her, and after X-rays, blood work, and careful watching Dr. Nederhoff thought that the NEC had returned. Her feeds were stopped and her meds were started again. We were frustrated. Other than the bloody stool she was acting like she was fine. She wasn’t having any spells; in fact, she kept pulling out her nasal cannula and her oxygen levels were STILL at 100%! Then that night Liz reminded us that her first bout of NEC presented a few days after she started the fortifiers. Coincidence? Probably not. The next morning her X-ray and blood work came back normal. So after some discussion and brainstorming the doctor and nurses suspected the fortifiers were the guilty culprit all along. RELIEF! Eva is now on a special formula called Neocate that is supposed to be easy on the tummy. She will be on that for a couple of weeks and then will slowly transition back to the breast milk. Abigail was never put back on the fortifiers and guess what? No NEC. So now the next hurdle we are dealing with is their feedings. They are learning how to bottle feed, and it’s a bit rough for them since they both have fairly bad reflux. It causes them to gag and retch, which in turn causes them to spell. But Kevin and I have gotten pretty good at watching them and figuring out if they are going to start to spell. It also helps that they are on Prevacid to minimize that. We are trying to learn to watch their cues and not to depend on the monitor to tell us what’s going on. We could possibly go home on apnea monitors, which would let us know when they aren’t breathing. We will either do that or something similar, just to be on the safe side.

It’s pretty awesome to see the girls developing. Now that they are getting bigger and are becoming chubby little babies, they really are starting to look identical! The nurses tell us that it’s pretty odd to have twins deal with the same exact problems (like the NEC) but I think it’s just a good indication of how special our girls are. πŸ™‚

I’m so blown away by all the support we’ve gotten from everyone. I can’t tell you how many people we have heard from who have told us stories about their own preemies who have turned out just fine. So I want to (in turn) show some support back, and I think you all will be amazed at God’s provision for even our own current situation through the lives and stories of others. So without further ado, let me begin the list of other amazing stories.

1. http://menicucci.blogspot.com
This is my sister-in-law’s blog. I think I briefly mentioned before that Eva and Abigail are not the first set of twins in our family. Kevin’s brother, Brian, has fraternal twins (no, twins do NOT run in the family; to my knowledge neither Gina nor I are genetically predisposed to twins and twins only “run in the family” through the mothers.) She has been really wonderful on helping me figure out what life with twins is really like, including pregnancy. When I first found out about the girls I texted her right away, and she asked if they had TTTS, and that was even before we talked to the perinatologist. And sure enough, they did. My nieces and nephews are pretty adorable, if I do say so myself. πŸ™‚ It’s also going to be fun growing up so close to cousins!

2. http://andersonstwins.blogspot.com
I’ve known Shawnah ever since 5th grade when we both went to Hope. She and her husband, TJ, had twin girls, Kandis and Kenedi, who were born prematurely at 24 weeks. They went through many of the things we are dealing with now, and they have extended a hand of support to us to be an encouragement. I’ve gone to her about things because she knows that having twins adds its complexities, and having preemies takes it to a whole new level. I remember looking at pictures of those girls thinking how hard it must be to see your kids like that, small and hooked up to machines. But truthfully, you just see your kid. The wires and tubes: you get used to them. And for Shawnah and TJ, they now have two healthy, beautiful girls (whom we got to meet a few days ago, and they are VERY cute.) You can go to her blog to read about their amazing journey.

3. http://thelopezblog.com
I also went to Hope with Sherry (and for a few years, Bryan.) If it wasn’t enough that they already had three kids of their own, they decided to adopt identical triplet boys. How cool is that! The boys were born at 24 weeks and had a long stay in the NICU. In a graduating class of 78 people, three of us have multiples. Quite the statistic! And if that doesn’t amaze you, then how about this: one of the nurses, Liz, who worked so much with those boys is now the primary nurse at night for Eva and Abigail. And Liz also happens to be married to Kelly, who also graduated from Hope with us. Coincidence? I think not. Anyway, the Lopez family just found out that one of the boys might be Deaf, so while they wait to see if something can be done they are learning sign language. As an ASL interpreter I think it’s pretty cool they are learning; having worked with Deaf kids it’s all too common to have them isolated since almost no one in their families will bother to learn how to communicate with them. I won’t speculate on reasons that those families don’t learn ASL. But language development is so crucial for this boy right now, and the Lopez family is definitely being proactive about it. Their adoption story is inspiring, not to mention how God preserved the lives of all three of those boys. It was so good, I just have to go back and read it again!

4. http://tttsprayers.blogspot.com
I don’t know these people, but this is a blog I found when I was still pregnant and concerned about the girls. This family had a more severe TTTS pregnancy that did require the laserscopic ablation surgery. They are still dealing with some things as a result of the TTTS even months later, but their story of faith in the midst of such frightening circumstances is pretty encouraging. At least it was to me when I was wondering if my girls would even make it.

5. http://guerragang.blogspot.com
I met Jordan when I became a YoungLife leader right after high school. She and her husband, Jon, are in charge of WyldLife in Sedona, Arizona. I give them so much credit for working with middle schoolers. I’ve done it before, and middle schoolers have a gift for trying one’s patience. πŸ™‚ I’ve also long been an admirer (and slightly jealous) of Jordan’s knack for creativity when it comes to crafts. She recently made hats for the girls, and runs her own business, River Jordan Creations. If you are looking for some really cute hats or headbands, head on over to riverjordancreations.blogspot.com. I can’t wait to see my own girls in those hats!

6. http://sabepashubbo.wordpress.com
This is my brother, Adam’s blog. Adam and his wife, Sarah, gave birth to my niece, Hosanna, last year. And they have been very excited about cousins for Anna. Adam has a gift as an apologist. When he has in high school, he took an interest in the Left Behind series and wrote a 40-page paper on eschatology (the study of the end times) FOR THE FUN OF IT. But it’s pretty hard to argue with him about Christian doctrine (not that I would anyway) and so you might find yourself enlightened, informed, impressed or just curious to seek out more after reading his blog. I may be slightly partial on this one, but see for yourself if you don’t believe me.

You can find links to all of these blogs on the right side of this page under the blogroll, as well as some others. Do you have a blog that you want to share with others? Let me know and I’ll post it here, too. Also, I keep forgetting to tell you all that you are welcome to ask me any questions you’d like. I promise to do my best to answer them, and I’m usually pretty good about it. The whole purpose of this blog is to answer everyone’s questions and to simplify all of the information I’m getting from the NICU. There have been more conditions throughout the pregnancy and NICU stay than I ever thought I’d encounter that it can be hard knowing what exactly is going on. I hope this blog is helping to clear some of that stuff up. πŸ™‚ So if you have a question just leave a comment here and I’ll get back to you!

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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. Β 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. πŸ™‚

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