Our Uncertain Journey

June 03, 2011

I can always tell from the number of blog hits that people are stalking for updates. That’s ok… I totally get it. I have done the same thing on some of the blogs I read. So, I’m sorry when its takes so long for me to post one. These posts are sometimes hard to write and after my appointments lately I am just so exhausted from the whole thing that I collapse.

Yesterday was no exception. My appointment was at 11:45 am. I got home around 2 pm, and finally got to sit down to eat lunch – I was starving! Then, I owed my mom a call, as I obviously need to update my family before any blog or facebook posts. By then it was time to pick up my son from daycare. Later that night I promptly collapsed into the couch being both physically and emotionally drained from the day.

So… on to what you are waiting for. The short answer is that we made it three more weeks, and things are not worse! While I longed to hear that things were much much better, knowing that things were not worse is really good news. Our definition of good news has changed so much in the past three weeks. This new reality we walk in is often surreal.

Now for the long description. The cystic hygroma size is at least unchanged and possibly very slightly smaller than it was 3 weeks ago. It is still a very large one – in the spectrum of hygromas, but it is not growing along with the baby, and that is good. They are seeing some grainy areas of the hygroma that they are not sure what is going on. It could be a sign of some bleeding, but the baby is not at all anemic, so there is no immediate concern with that.

The fluid in the lungs is completely gone! There is still some fluid around the baby's heart, but there is no excess fluid in any other areas. This is good. We now pray for the fluid to be cleared from around the heart as well. From what I understand, the fluid is very bad. This is a small victory for us.

The baby’s growth is similar to last time. The belly and head are measuring right at 22 weeks, and the limbs are measuring about 3 weeks behind. The baby overall is growing, and the proportions are remaining about the same. The baby is about a pound right now, which overall is average for 22 weeks.

Yesterday it was confirmed that our baby does indeed have a heart defect, but it does not look to be a serious one. My doctor believes it is a hole in the heart type of defect, and is one of the more common ones seen. Sometimes this type of defect even resolves without surgery. We will learn much more about this defect and its severity and prognosis as we met with a pediatric cardiologist for an echocardiogram on Tuesday.

At this point the maternal fetal medicine specialist will take over all my care. I will see her in 2 weeks and then every 2 weeks until the end of this pregnancy. I am going to make it 2 weeks at a time. That is what I have to hold on to. The first goal is 24 weeks, which is the age of viability in this state. Next goal is to make it to 28 weeks – at which around 95% of babies survive. My next goal is 30+ weeks. I need these goals. 30 weeks is only 7-1/2 weeks away. With God’s grace we are going to get this baby as far as we can.

We are feeling overall more optimistic, but with caution. As my doctor said yesterday she is encouraged, but also knows these babies do not always play by the rules. Good news now does not predict good news in the future. All I can do is appreciate the reality of that.

We got to see her face in 3d and we’ve confirmed she has the same nose as her big brother! Looking at my baby’s face only confirmed to me that she is absolutely 100% perfect! No question. Starting my car, the first thing I heard was this song:

I won’t readily admit to always believing in concrete signs from a higher power, but I feel there is no way that this can be a coincidence.

I will say that I left the appointment yesterday with as much hope as I’ve had in 3 weeks, and walked into the afternoon sunshine with a small smile on my face – underlining the word small.

Reality is easier these days. The initial shock of everything worn off a little, and now it just feels like we are dealing. I want to be living versus dealing, but that is not my reality right now. Dealing is OK.

Thank you for your thoughts and prayers. Please keep praying for our daughter. We have a long ways to go, but every day is a step further.

I am not a patient person. I like absolutes. I like to plan. Right now I can’t do or have any of those things. There is only one thing I’m certain of– this is an uncertain journey!

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  1. HI Sarah- I am a sister-in-law of your cousin Sarah here in Prinsburg, MN. I started reading your blog to help motivate me in my weight loss and now have been reading your updates on your precious little girl. I just wanted to let you know that you and your family are in my prayers. I too, feared for the life of my precious daughter while I was pregnant with her (for different reasons than yours-we had a very tough pregnancy as well, but a different type of problem). I understand what it feels like to count every move and pray every second that she is there and is healthy. I cry for and with you during this trial. I know how much you love her! Hang on tight to your loving Father. He is there even in the toughest and darkest moments. Praying for you. -Laura B.

    P.S. I too would get those "signs" from God like the song you heard. They come at just the right times and can be just that thread of hope we need to hold on:)

  2. I got goosebumps listening to that song! Just beautiful. I'm glad that you were able to be a little bit encouraged by this visit. I will pray for you and your family, especially that you be comforted with all of the uncertainty that faces you each day. I will also pray that it will be many weeks (at least 16) before you meet your little girl!!

  3. God bless you and your family! I'm glad to read that she is growing. I will continue to pray for her.

    I LOVE that song. I couldn't play it now because I would be crying alone in my basement...but the message is so powerful.

    God is bigger than all of this.

  4. So glad to hear some positive news. You continue to be in my thoughts.

  5. Sarah, My thoughts and prayers are with you and yours. God is holding you and your baby girl in his hands and with his help, miracles can be accomplished! Jill from Take2

  6. Thank you for your comment on "The News." So many feelings came rushing back as I was reading this post... I am praying (and will continue to pray) for your baby girl and for you. I know there are so many ups and downs, and God is holding both of you close! :)


  7. I am still holding you, baby girl and your family in my prayers, but I am so glad for this next set of information and news. Here's to the next two weeks bringing good news too!

  8. I am a friend of your sister, Cathy and have been reading your blogs off and on for about a year just because I thought it was a wonderful and inspirational thing that you did to turn your life around by conquering the issue of weight in your life. I have been moved by your recent blogs about your baby girl. God has blessed you with incredible strength to get through this emotional and uncertain time. I will pray for you, your family and your unborn daughter during this time.


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