Friday, May 3, 2013

May 3

Today was my due date. 40 weeks ago, when we were trying to get pregnant, I never thought it my wildest dreams that I would only be pregnant for 6 months. 23 weeks and 1 day, to be exact. My pregnancy with Elsie's sister and for the first 6 months with Elsie were so easy. I had hardly any morning sickness. I didn't have any problems. None. I loved being pregnant. Sure, it was uncomfortable, and I had some hip pains at night with Evje in my third trimester. But I loved being pregnant.

It took us three long and very heartbreaking years to get pregnant with Evje, Elsie's older sister. Like any other woman with fertility problems, it's crushing to hear pregnant ladies complaining about being large with child. I would have given anything to experience what they were feeling. Even now, it's still a tender subject. So when we finally did conceive, we were obviously thrilled. I treasured each kick that I felt inside of me. My swollen belly was something to be treasured and caressed, because of the precious child within my womb. It helps that my pregnancies were so easy; maybe if I was sick the whole time, then I'm sure I wouldn't have enjoyed it so much. But being pregnant was a piece of cake for me.

Needless to say, when I suddenly went into labor that night in January, it was the last thing I was expecting.

Anyway, four months later, here we are.

We had Elsie's 120-day care conference today. Here's what we talked about:

  • Elsie is still learning how to eat by mouth. During her second attempt at breastfeeding, she latched on right away and did great. Since then, we had a little setback when she had to have her second ROP surgery and was re-intubated. Each time Elsie has an uncomfortable or traumatic experience with her mouth, like being intubated, it makes her even more sensitive to touch around her mouth. She is still learning to trust me, and that nursing isn't going to hurt her. Also, I'm not at the hospital around the clock, so when I am there during feeding time, she's not always awake or alert enough to be interested in nursing. We've had a few learning experiences, and she's getting practice and is learning to trust me, but it will take time. We're pretty confident that she'll get the hang of it, but if not, then she might have a feeding tube when she goes home, and we'll keep practicing breastfeeding at home until she can do it well enough to gain weight. 
  • Elsie is back to the oxygen settings that she was at before her latest ROP surgery, which is good. When they were weaning her back down after the surgery, she was very annoyed with the bulky CPAP cannula. She is much happier now that she's back on the small low-flow nasal cannula.
  • Elsie's eyes are pretty much her biggest hang-up right now. She had an eye exam today (at the same time when we were supposed to be trying to breastfeed, so there goes another opportunity to practice-- babies who have their eyelids propped open and given eye drops and otherwise manipulated are not happy and don't have energy to try to learn a new skill like breastfeeding after the eye exam is over). The exam today went well, but she will need to be monitored every week until the ROP has been completely resolved. This could take several weeks. Which means that . . . .
  • Until Elsie's ROP has been resolved, she can't go home. When babies are discharged still on oxygen, which Elsie will be, they are on 100 percent oxygen at a very very low rate. However, too much oxygen exacerbates the ROP and can cause it to get worse. While she is in the hospital, Elsie is on a blended oxygen mixture and it is closely monitored and constantly adjusted by the nurses. We can't take a blended oxygen mixture home. The "at home" oxygen that comes in a tank is 100 percent oxygen. Am I making sense? What I'm trying to say is that it will take several weeks to make sure that her eyes are completely healed, and until then, she can't come home. The best case scenario that we were given today (rough estimate) is another 4-6 weeks. Ugh.
I'm trying not to think about it too much tonight, or I'll get depressed. 4-6 more weeks of driving to the hospital each day, finding babysitters for Evje, and not having my baby at home with our family.

I'll try to look at the bright side. I'm sure there's got to be a bright side somewhere. I just don't know what it is yet.

Elsie got a new "Riley sign" today. Cute butterfly!


  1. Right now it seems like such a long time. It is taxing on you and your family. It is so hard to know what child to be with,but as the years with her at home pass, this will be but a moment,and in the eternities not even that. What all that time in the hospital did for me is made me more aware even now of the blessings we received. I look at Heidi so often now and marvel. My heart fills with gratitude and I have to say a quick prayer. That's not a bad thing. It will get better, and it won't be like this forever. Oh, and I am available to tend Wednesday - Friday. Let me know if one of those will help.

  2. I'm guessing this probably won't help because of how frustrated you are, but the biggest bright side I can think of is that you have a sweet baby, strong faith, and a supportive family. You have been blessed with so much. Every day in the hospital will help you to appreciate when you finally get to take her home. Hang in there!

  3. Remember that when Elsie does come home she will be bigger and stronger than she is now. That will mean that life at home should be a little less stressful than it would be now.
    Enjoy these nights of not having to worry about whether Elsie is still breathing okay and whether she is getting enough nourishment. You have all come too far and seen too many miracles to get discouraged now. Keep the faith!

  4. I'm sorry if this comment is totally inappropriate, But I read this couldn't help but giggle a little because in my head I was hearing Riley say every word as it was typed.

    1. Not inappropriate! Totally funny :) She cracked me up while I was trying to type. We love Riley!

    2. I bet she asked you a million questions along the way, also! What can I say, she's a bit obsessed!

  5. If it helps any think of it like this. 4 long months are behind you, only 1 1/2 to endure, & then a lifetime & ETERNITY full of endless love & possibilities.

  6. Hang in there...your almost there!!!