Jan 30, 2010

Processing

Since the news of baby's tumor called a Saccrococcygeal tumor or an SCT, I have learned much more and have been slowly processing the news. I have been through many up and down swings. This tumor is extremely serious, and yet at the same time, prognosis after birth is good.

The good news is that, unlike spina bifida which we were first told, baby should not have any long term affects after she is born. A simple scar will be all that remains.
The tough and fearful part will be getting her born.

Though rare, this tumor is the most common type of tumor affecting babies, 1 in 40,000 are born with it, and 80% of them are girls. It grows off the bottom of the tailbone. It is thought to be caused by rogue cells which are not told what to develop when the neural tube seals in the first couple weeks of development. The good news is, in girls, it's usually benign. In boys, it's often malignant. She will need to be regularly checked for more tumors though in the next 3 years after birth. The tailbone will also have to be removed to ensure that it does not return.


There are a couple of factors that will dictate just how tough helping her have a good chance will be. The first is whether the tumor is mostly cystic or whether it's solid/vascular. We already know that it is very large and will grow quite a bit larger. A cystic tumor is mostly fluid, but a vascular tumor is solid and full of blood vessels which will overtax her little heart which could be pumping enough blood for two babies. If this happens, she will need to be delivered immediately. The other concern is hydrops, which is fluid around organs, such as the brain or heart, when baby is under stress. This can develop very quickly and is quickly fatal without immediate intervention. However, at this point, we don't know what kind of tumor is growing.

The other factor is how external or internal the tumor is. If it's completely external, she has a better odds of no long term affects on her lungs, kidneys, or bladder, and the surgery will go much smoother. If it's partly internal, surgery will be much more difficult. So far they said her internal organs looked good, but they weren't able to get a clear shot on how it was attached in the ultrasound.

I have already been told that she will be spending some time in the NICU when she is born and that of course she will be getting immediate surgery. How much time will depend on the complexity of the surgery and how early she is. In delivery, keeping the tumor from hemorrhaging will be a concern as well.

I have been told it's very likely that she will be born early. Their goal is to get her to 34 or 36 weeks so her organs and lungs are better developed. That would be the end of April. Depending on what we find out in the next ultrasound, hopefully, we'll know better how likely this will be. I am 20.5 weeks right now. That's 14 more weeks to stay positive and hope for the best. I count the days until the next ultrasound which is scheduled in 2 and a half more weeks. We are praying it is mostly cystic, that it grows slowly, and that it is external.

For me the risks are the same as a twin pregnancy. Specifically, preterm labor and excess amniotic fluid due to the expanding tumor can become possible concerns.

At this point, I have read too many stats. Pretty dire ones. I skip over those websites and move on to ones that can just give me good facts. Because my little girl is not a stat. She's a person, and we have a lot of hope and positive thoughts for her. I believe we will get through this and this time next year, she'll won't have a memory of it, and will be a crawling, laughing, happy girl with a big brother and sister to dote on her.

Tone has not been home since Wednesday. I have been to the ultrasound and talked to the doctors alone, and I just can't wait until he gets home today. When you are in shock and first hearing the news, it's hard to take it all in, process it, and then relay it over and over to many people who have more questions than you thought to ask the doctor.

Right now I feel an immediacy on her name. With Tone gone, we haven't been able to work on that, and I am so frustrated. A name would dignify her as a person and give her a place of significance which I so badly need right now. She is so very special to me.

I know we are bathed in much prayer, and it's means everything to us. It's going to continue to mean everything to us until our little girl is born, healed, and home. We know our God sustains and loves our little girl even more than we do. We trust Him fully in all decisions which will affect her. I am praying that I stay positive and can just let go of my worries and focus on His strength and love in the coming weeks as we count the days down towards a safe arrival.

4 comments:

  1. praying for you jenny & tone...wish i could do more...but for now i will pray. love- *laura*

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  2. What wonderful news. Best wishes to you and your family. We will continue to pray for her health and happiness.

    Nicole

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  3. Wow. just read your update. My heart just aches. I can't imagine all the fears and anxious thoughts that are flying through your mind.
    This precious girl is loved deeply by our Father God. He already has a plan and purpose for her life. He says that He intimately shapes us in the womb. I am praying for you guys as you walk through these next months. I can't wait to hear what her name will be.

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  4. With a prayerful and very full heart for the next little miss Plumb, I lift you all up.
    Stacey

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