update.

Thank you so much for praying for us today as we had a couple of important appointments.  It meant so much to us knowing that we were all being lifted up in prayer today.  And we are happy to share that things went really well.  We are so thankful that God blessed us with a smooth afternoon of appointments.  Overall I’d say the day was encouraging.  Like we knew going into today, we didn’t learn any information that changes anything.  But overall, they were positive meetings.

 

Today we went to Children’s Hospital and met with a neonatal intensive care unit [NICU] social worker.  She had arranged for us to meet with one of the neonatologists there to talk about Gabriel, play out different scenarios, and ask a bunch of questions.  It was very helpful.

 

The neonatologist was very kind.  He told us multiple times how sorry he was that this was happening.  He talked with us for quite awhile answering our questions.  We found the appointment really reassuring.  He fully agreed with all of our plans and points of view, so that was encouraging to us.  We discussed a whole range of things including what our birth plan will look like, comfort care measures, oxygen, feeding tubes, respirators, NICU stays, going home, stillbirth, and medical professionals to be present at the birth.  Oh and we talked about Jack, too.  He gave us some great insight for helping Jack handle things that we just hadn’t even thought about.  So we left that meeting very encouraged.

 

Next was our appointment with the pediatric cardiologist.  We had a fetal echocardiogram which took about an hour.  It was really fun to watch Gabriel on the screen again.  I tend to get really tired laying there for a long time in the exact same position, but I kept trying to remind myself that it was an opportunity to see Gabriel and that makes it awesome.  He was really active, so it was fun to see him doing all kinds of moves on the screen!  So thankful for his activeness.  Also thankful that the estimated weight they got for him was one pound, one ounce!

 

After the echo the cardiologist discussed Gabriel’s heart with us.  We learned that he has a 3-chambered heart, rather than a normal 4-chambered heart.  He doesn’t have a left ventricle.  His heart defect is severe, but according to the cardiologist, he can most likely live with it for a little while.  Tommy and I were afraid he would tell us that it required immediate surgery upon birth or he would die, so we  were really encouraged to hear that was not the case.  While there are a few different ways it could go with the way Gabriel’s heart is structured, the cardiologist thinks the most likely scenario is that eventually Gabriel will go into congestive heart failure.  His heart would pump too much blood and oxygen into his lungs which would lead to congestive heart failure.  And consequently death.

Now this is all ignoring the fact that Gabriel has trisomy 18.  If it was just the heart and nothing else, we would pursue some surgical interventions [probably 3 in his first year-2 years of life] to help his heart.  It could never be healed or cured because you can’t turn a 3 chambered heart into a 4 chambered one, but they could do things to help his heart operate well and get the right blood to the right places.  But considering that with trisomy 18, there is no predictability to what will be the cause of death or when, that is our bigger issue.  Not the severe heart defect.  So it is likely, although there are never guarantees, that it will not be Gabriel’s heart that causes his death, but rather another aspect of the T18.  I don’t know why, but I find that encouraging.  Although it pains every natural thought in this type A, planning personality of mine to say, I think I am learning to appreciate the unpredictable more.  Who am I?

 

I asked the cardiologist how severe this heart defect is.  Because we had been told is was very severe.  The things we’ve read online say it’s severe.  And when he first came into the room with us today, he said it was severe.  But then he started talking about how it wasn’t necessarily immediate.  I had a hard time understanding how severe didn’t = immediate danger.  Good thing I’m not a cardiologist.  But anyway, he said that on a scale of 1 – 10 with 10 being the most severe and inoperable heart defect, he would rate this an 8.  I like numbers.  I can wrap my brain around numbers.  Can all of our information be presented in numbers?  Maybe I’ll start asking that.

 

I think one of the reasons I was so encouraged today was because I heard 2 physicians talking about bringing our baby home.  Not in a definitive sense of saying that we would, but in hypothetical situations.  Even just to hear them mention that brought hope to my weary soul.  The neonatolgist said something along the lines of if Gabriel was still living after a couple of days, we’d put a feeding tube in him [if necessary] and learn what to do at home.  Oh the thought of that made me so happy.  I can’t even imagine the sheer joy of walking out the doors of that hospital with our baby in our arms.  Can’t.even.imagine.  So that also added a little spark to the fire to get cracking on Gabriel’s nursery.  The boy can’t come home to an incomplete room.  Not that he’ll spend too much time in there anyway– I’m fairly certain we’ll never set him down in his life here.

 

cardhearts

 

 

So after a lot of words about today, what we learned in short…

–  We’ll keep going down the path we have been by continuing to gather information, be prayerful over it, and talk talk talk about all of our options and thoughts

–  We felt reassured in our decision to go the comfort care route for Gabriel after he is born

–  We have to be so very specific in our birth plan for baby Gabriel that it makes a type A person look laid back

 

 

Thank you again for your support and prayers today [and always!].  I was reminded yesterday of the power of taking requests before our God, and we’re so honored that you do that for us.

 

much love,

 

lauren & tommy

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3 thoughts on “update.

  1. Lauren, I love to read your blogs. They take me back to when our precious Rebekah was born and I was so scared and so very sad. It was a very different situation than yours, but because I didn’t know about her ahead of time, my emotions were all over the place. You have such wisdom in your words. I keep thinking when I read your words that God surely knew what He was doing when He picked you to be Gabriel’s mother, to carry that little fellow and love him and give him life. I’m so sorry that you all have to go through this with the potential of losing a child, but somehow you all will be blessed. And somehow, God has a plan to reveal Himself to someone who needs Him through Gabriel. Thank you for letting us have a peek into how our Lord is using your sweet family! With Love, Debbie Smith

  2. What great news. His little clenched fist shows us all he is a fighter. I am glad you and Tommy got a clearer glimpse of Gabriel’s challenges and how a team will be there to help you and Tommy at the hospital.

    Meg said Jayden is coming to play with Jack. Take pictures. I am excited Jack is his playmate and friend.

    Love to you all. Kimberly.

  3. Pingback: a year in review. | adventures of jack and me

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