Stella's Story: Part 1

Here is the beginning of Stella's Story: Stella's Story: Part 1
The rest is coming soon!

Growth and Struggles

I haven't written an update for awhile because I've had trouble sorting through my feelings. Only two weeks remain until my scheduled C-section date. Now that I'm officially on bedrest, I have even more time to think about the upcoming weeks.

First for the update - Stella's Growth:

I am very thankful that Stella went through a growth spurt and is now estimated to be over four pounds. This Friday, we will find out if she has kept up her growth spurt and has made it to five pounds. This past Friday, though, my amniotic fluid dropped to between 7 and 8. This is the lowest it has been, and if it keeps dropping at the current rate, I won't make it to 38 weeks 6 days (my C-section). Low fluid combined with the concern about her size (plus, my asthma has gotten really bad) are the reasons Dr. Potter put me on bedrest. He didn't realize that I wasn't already on bedrest, so I'm glad I have made it this far without being on more than partial bedrest. Dr. Potter told me, "No website is worth the poop in her diaper." Very funny, but very true. I keep hoping and praying we'll be bringing our baby home at some point.

Some of my struggles:

I have been praying tons, of course, but lately, I feel like I can't focus well enough to pray coherently. So, I'm glad that so many people are praying for us. I'm finding it hard to wrap my head around the fact that we will soon be welcoming our daughter into the world. Part of me still doesn't believe that this is happening. I still don't know if I will be able to hold Stella or see her before she is transferred to Egleston (where she will have surgery). C-sections are scary enough even when you have a baby to hold afterwards, but that's not going to be the case this time. I'm trying to prepare myself for recovering without her.

It's funny how certain passages of scripture never strike you as difficult or even something that you'd question until you go through certain trials. Over a month ago, in Sunday School, we were challenged to read through Psalm 139 every day for one week. I found it really hard to do because these two verses kept sticking out to me:

13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

I have read these verses so many times before, but they now seem difficult to swallow. Is my baby really fearfully and wonderfully made when her heart and her kidneys aren't put together the way they should be? What went wrong? How is it that so many women drink, smoke, and don't take care of themselves while pregnant, and their babies are born perfectly healthy?

Last week in church, we sang "The Stand," which is currently my favorite worship song. One part of the song is "So what can I say? What can I do? But offer this heart, O God, completely to you." When I sing this line, I think of both my heart and Stella's little heart, because I know that we have no control over what happens. The chorus has been my prayer and what I try to focus on when I feel I am losing focus. I don't do so well when left to my own thoughts.

"So I'll stand with arms high and heart abandoned
In awe of the One who gave it all.
So I'll stand my soul Lord to you surrendered
All I have is yours."


Every little improvement or normalcy is a cause for praise! I went to my weekly perinatologist appointment yesterday, and for the first time in my whole pregnancy, my amniotic fluid is in the normal range! 12 is considered normal, and my level was 12.37. Week 34 is the peak week for amniotic fluid, but hey, better to decrease from a normal amount of fluid from here on out. We're praying for Stella to hang in there and keep growing.

Baby Stella Update

This week was a rough one for us. I three appointments including one at Egleston to meet the surgeon and social worker.

On Friday, the perinatologist did Stella's growth check. She made it to three pounds - barely. She is still in the 2nd percentile and measuring four weeks behind in her growth (29 weeks 2 days). Her current rate of growth is only about a 1/4 lb a week, which puts her at only 4 1/2 lbs at birth. We need a serious growth spurt! If she is too small, she may not be able to have surgery right away, which poses a whole other set of problems.

I also found out on Friday that my amniotic fluid has dropped again. It's down to the lowest it's been at an index of 8. It's supposed to be between 10 and 25 in a normal pregnancy and usually peaks around 34 weeks at which point it decreases until birth. I was again told to keep drinking as much as possible and to lay down as much as possible. I'm trying to follow their directions, but I'm not sure it helps. I did some reading and found out that the danger level is 5. If my fluid drops below 5, they may deliver Stella right then. I'm at 33 weeks now and really hoping to make it to my scheduled C-section on October 11th.

Meeting with the surgeon (Dr. Kirshbom) on Tuesday was really hard for both Mike and I. The more we find out, the worse it gets. We really do like the surgeon and feel comfortable with him, but learned that it is not unusal for the diagnosis to change after birth when they can do an echo on the baby. He told us that we may be having a completely different conversation after Stella's birth because visibility is only so good in utero. We also learned that flu season usually starts in October, so it's very likely that the boys won't be able to see their sister once she goes to Egleston. That was really hard for us to hear; we know it's going to be especially hard for Ely. I also got conflicting information from the surgeon than I did from the cardiologist. The cardiologist told us that we'd have some time with our daughter before they hook her up to IVs, etc, but the surgeon said that they'd probably want to hook her up right away, meaning I wont have a chance to hold her at all. Dr. Kirshbom assured us that we would be able to hold her before surgery, but I'm not sure I'll be there yet depending on when her surgery is, when I'm discharged, if I feel good enough to make the trip to the hospital, etc. We're not sure exactly when her surgery will be because of a multitude of factors. Dr. Kirshbom told us every baby is a "custom job" and there's no way of predicting a schedule. There are many, many more details, but I don't really want to try to remember everything all over again. Please keep praying for us. I spent most of the day Wednesday in tears. It's a good thing I was working from home!

While I firmly believe that God can perform miracles, I know in my head that he does not promise them. It's not that I'm trying to be pessimistic or unhopeful. The whole pregnancy I have had a bad feeling. I think this "intuition" prepared me in some small way not to be completely shocked when finding out about all of Stella's problems. I still can't shake the feeling that everything is not going to be okay. Of course I hope and pray that it will be, but I also know (again, in my head) that God is no less God or no less great if we have our little girl for only a very short period of time.

If any of you want to help us out, we could really use help at this point. Mike is doing his very best at taking care of me, the boys, and our house, but he is only one person. I feel physically horrible and have lots of cramping (I think because of the low amniotic fluid). I try to do a little bit here and there, but I am really not supposed to be doing anything strenuous.

We could specifically use help with cleaning our house, yardwork (our front yard is looking like a HUD house), and painting Stella's room. I honestly don't even want to do her room, but the boys have been asking and even praying that her room will get done. We could also maybe use a meal or two a week (although we will also need meals after Stella is born for quite awhile, so I was trying to hold off asking for meals).

Thank you everyone for your support so far.


About This Blog

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This is the story of our daughter, Stella Rose, who went to be with Jesus after five days here on this earth. Stella was born with multiple birth defects due to a severe case of Wolf Hirschhorn Syndrome. Although Stella is no longer with us in person, she has changed us forever. Stella's legacy is my journey on a new road without my daughter, and how God is working in our hearts.

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