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! šŸ™‚

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. šŸ™‚

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. šŸ™‚ 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. šŸ™‚ 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. šŸ™‚ So if you have a question just leave a comment here and I’ll get back to you!

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4 Comments (+add yours?)

  1. janelle
    Jan 17, 2011 @ 16:53:17

    I have to say, it tickled me to read where you said they were “starting to look identical.” I have to say I’ve never been able to tell which is which without your captions… just goes to show how bonded you are I guess. šŸ™‚

    Reply

    • klmenicucci
      Jan 18, 2011 @ 06:54:45

      Well, it does help that they are in different beds. šŸ™‚ Actually, Eva has a teeny tiny hole above her left ear…the same place I have a teeny tiny hole. And Abigail doesn’t. I’m sure other things will present themselves as distinguishable differences later, but for now the different beds is the big teller. šŸ™‚

      Reply

  2. Sharon Chastain
    Jan 17, 2011 @ 18:14:02

    Hi Laurel,

    I really enjoy your posts. You are a good writer and make it all very interesting. I suppose it could also be that I’m a nurse and naturally gravitate to this kind of information but I do find it all so interesting!! šŸ™‚ Not to mention the fact that Eva and Abigail are the granddaughters of my sweet friend, Jeanne! So, after reading today’s post I just have a very mundane question……..how much do the girls weigh now??

    Reply

    • klmenicucci
      Jan 18, 2011 @ 06:52:50

      Hi, Sharon! I just called the NICU and found out the girls’ weights. I’m happy to report that Eva has crossed the 5 lb mark! She is 5 lbs 1.6 oz. Abigail is 4 lbs 6 oz. So she is slowly starting to catch up to her sister. Hopefully it won’t be too long before they get to 6 lbs and are the size of a term newborn…they won’t be fitting into preemie clothes much longer! šŸ™‚

      Reply

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