Stella's Story: Part 1

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

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.


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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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