Not Downhill, Just Straight

June 17, 2011

Yesterday I had what is called a limited ultrasound. It checks on the well being of the baby, but does not check growth. I saw the same ultrasound tech that did my first scan at 19 weeks. I think she was shocked at the well being of the baby despite the circumstances.

When Dr. P came to talk to us initially she had a funny look on her face… and of course my thoughts went to “oh no!”, but instead she sat down and said, “Well... today, everything looks ok.” Five weeks ago those words would have scared me, but now I know those words are good words. When your baby has issues you stop hearing the “the baby is healthy, everything looks good, etc.” type of responses. But when you get “OK” you are happy. Again… I could breathe easily – for a few hours at least.

There is no additional excess fluid, just the little around the heart that has been staying about the same. The heart and kidneys are healthy – except for of course the VSD defect. The cystic hygroma size is unchanged – not bigger, not really smaller. Amniotic fluid and placenta look great! The baby has no signs of anemia. The cord blood flow is actually better than at 19 weeks. It is now normal. When we met with her at 19 weeks she told us that the flow was: fast, stop, fast, stop. A normal flow should be fast, slow, fast, slow, and a really bad scenario is where it is fast, reverse, fast, reverse. This is a positive sign.

She literally told me the first time I saw you I thought things would go downhill – and gestured with her hand in a downward motion, but instead they are just staying like this – and she gestured her hand straight across. Small victories, Small smiles and a bit of relief!

We are still aware that babies with the type of issues our baby seems to have can reverse course… can pull fast ones on doctors still. So I will say we are feeling tentatively positive for now, especially since we’ve reached the magic 24 week mark. There are still no guarantees.

So where do we go from here? Well… new plans for a baby that will certainly need some “help” once outside the womb, but those plans coming from our doctor indicate plans being made for a LIVE baby. A little one that certainly exerts her presence to me on the ingestion of any ice cream, but has finally exerted her stubborn persistence to the doctors as well. So…on July 5th, I will undergo a 60-80 minute MRI, which will actually be on the baby - but since I'm the vessel I'm the lucky person that gets put in the machine! This is to assess the full structure and complexity of the cystic hygroma, and to give the doctors the information needed to remove it from the baby when/if the time comes. We are told it is very unlikely that a hygroma this large will go away at this point, so the planning has begun. It will likely require a series of surgeries as it can sometimes be complicated to remove – depending on how integrated it is with the vascular structure. The MRI will give the doctors the pictures they need to assess this. Sometime after the MRI we will meet with a pediatric surgeon to discuss our options and the course things may take with the surgeries. Also, at birth, they will be able to take a sample of the cord blood to test for any chromosomal abnormalities the baby may have.

Talking about these surgeries and tests… while exciting also reminds us that there is a VERY long road ahead whatever the course this takes. As I have been thinking of this, I know this isn’t a “do it and get it over with” thing. This is very likely going to consume me over the next several years. I hope and pray I have the strength it takes, for all of the surgeries and doctor appointments, for the waiting and the wondering. I’m wondering how I will care for my first born little “L” during this time as he deserves the best of me too. It has me worried about money and work and daycare and all sorts of things that if I think too much about will pretty much drive me crazy.

I also took the gestational diabetes test yesterday and I failed. I sometimes wonder how much more I will have to take. I wonder why I can’t even get one break. I wonder why losing 115 pounds doesn’t seem to have mattered. Good thing I posted this in the morning yesterday, since I certainly felt like a complete failure yesterday afternoon. So now, I have to do the longer test on Wednesday. I will be shocked if I pass. With “L” I was able to control my gestational diabetes with diet alone and didn't require insulin, only 4 times daily blood sugar checks. I guess I should not be surprised I have it, as it repeats in around 90% of pregnancies once you've had it.

My blood pressure and other tests – platelets/hemoglobin - were all good and normal!

My next appointment is in 2 weeks on 6/30

I cannot thank you enough for all of your positive thoughts and prayers and lovely notes of encouragement. Yesterday I felt an amazing sense of calmness and I know it was everyone lifting us up!

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  1. Great update and thrilled to hear the baby is doing okay! Any good news is very welcome! We're here cheering you on and love the updates!

  2. While I'm sad to hear of all you are going to be going through with your little one ... I'm thrilled that you're going to have the opportunity to go through it with her!
    I will continue to keep you and your family in my prayers.

  3. I think about you often, so I am always happy to see your updates. I continue to pray for you, the baby, and your family every night. You have the strength and grace that is to be admired by many.

  4. I'm glad that the doctors and your own thinking are starting to shift. Yes, there is lots that could go wrong but you have a whole community praying for her and for you. All the unknowns will work themselves out in time and I'll help any way I can!

  5. Sarah, Praying for you all!! Keep strong!!


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