Thursday, February 6, 2014

That face! And an update.

We had another ultrasound yesterday immediately followed by a meeting with the neonatologist.  But before I get to that, look at this beautiful face.

It's a little blurry (they did not give me a CD with the images on it like they normally do so this is a scan of the printout)  but still, isn't she gorgeous? 

Rebecca does not like ultrasounds or echocardiograms and likes to move around a lot when they are being performed.  But luckily the technician was still able to capture this image of her face.

Now...the nitty gritty....

Rebecca weighed in at 2 pounds, 9 ounces.  That puts her in the 20th percentile for babies in their 30th week of gestation.  So she's still small.

And even though they could see a stomach bubble, just like last time it was empty.  Which leads them to believe that there is an esophageal atresia (which is an esophagus that ends in a blind pouch instead of connecting to the stomach) or a blockage of some sort in the esophagus.  They will not be able to confirm this until delivery.

Her waist is also measuring small which is another indicator that she isn't taking in any fluids which is another indicator of the esophageal atresia.

And there is more amniotic fluid surrounding Rebecca than there should be, which is yet again, another indicator of the esophageal atresia.

After the ultrasound, we met with the neonatologist.  She was a very kind doctor who was letting us know our options for treatment for Rebecca on the day of delivery.  She stressed that they would follow our instructions completely and do as little for her as we wanted or as much as we wanted in the way of treatment.

It's now up to us to decide what to do.  If she is infact born with Trisomy 18 (which the doctors are 99.9% sure of at this point) do we do nothing and let her die naturally or do we do everything medically possible to keep her alive for as long as possible?

These are hard decisions to have to make as a parent.

On the one hand, you want to give your child a fighting chance.  But on the other hand, you don't want to put her through any more suffering than necessary.

Yesterday we decided that we fall somewhere in the middle right of the spectrum of do nothing at all to do everything medically possible.

And that means as of now (and we can change our minds at anytime) the following will happen on the day of her delivery:

  • A priest will be in the delivery room to baptize her immediately following delivery.
  • She will be given oxygen if she needs it.
  • If she is struggling to breath and the doctors think that she has more than a few minutes to live, they will insert a breathing tube after checking with us first.  This will be a little uncomfortable for her, but if it gives us hours or days with her, we consider it to be worth it.  Of course, inserting a breathing tube could also mean that at some point we have to make the decision to remove it.
  • After she is cleaned up, she will be put briefly on my chest so that I can "hold" her while they are completing the C-Section.
  • If it looks like she doesn't have much time, Dan will be allowed to hold her until she passes. If it looks like she's got a fighting chance, she will be taken to the NICU.
  • Blood will be drawn to test her chromosomes to determine with 100% certainty that she has T18.
  • A tube will be put down her esophagus to determine if she has EA.
  • And here's where it gets real tricky.  If she has EA, and we want to treat it, she will be sent to Brenner Children's Hospital while I will have to remain at Forsyth while I recover from my C-Section. Even though sending her to Brenner's while I'm stuck at Forsyth is going to be so hard, if it seems like she's got any chance at all, we will most likely do this.  Otherwise, not only will she not be able to eat, she will most likely choke on fluids from her mouth and nose.  If we chose to do this, she will be taken to Brenner's within a couple of hours.
It was a lot to have to think about and deal with in one meeting but we were assured that we could change our minds at any point and they would do whatever we wanted them to do. 

We are going to set up a meeting with a pediatric surgeon to discuss the procedure to repair the EA to make sure we understand what is involved and the implications for Rebecca.

I have been struggling with what to pray for and about.  Of course, I am still praying for a complete and total miracle and that Rebecca be born perfectly healthy.

But at the same time I am a realist, so I also have a second prayer that if she is born with T18, that at least she be born without the esophageal atresia (which I believe would also be a miracle) so that we don't have to make the decision of whether or not to do the surgery which would mean moving her to Brenner's. 

And I continue to pray that Dan and I will have wisdom to make the right decisions for her and that we are able to have peace.

18 comments:

Diane Teague said...

She is beautiful. That sweet sweet face. We are praying that God will guide you in the many decisions you have to make for your sweet Rebecca. Still praying for that miracle.

jennwa said...

What a beautiful baby girl. Praying for a miracle and much strength for you and Dan. You are always in my thoughts.

Billie Jo said...

She is beautiful!
Prayers for you, my dear friend.

Madeline said...

Oh she is SO sweet. Just so sweet. I will be praying right along with you.

Mari said...

Oh, Beth - those are decisions that have to be so hard to make. Praying for wisdom and strength for both of you.
She is just beautiful!

Joy said...

What a sweet face!! Many prayers for healing and peace as you begin to plan for Rebecca's birth.

Jenny said...

She is beautiful. You are an amazing mom.

Erica Saint said...

Look at that sweet face! Prayers continue for you and your family.

Mary Lenaburg said...

Miss Rebecca is a stunningly beautiful little girl. What a miracle she is!! Oh Miss Beth...I am so proud of you and your hubby. You are both taking each challenge as it comes handling it tenderly with prayer and openness to life. I know that this has to be so very hard, but remember you are never alone. You are ALL being lifted in prayer throughout this journey by so many. Know that. My prayer for you both is that you take in each moment and you feel peace about every choice you make for Miss Rebecca. Blessings and Grace my sweet friend. We are with you <3

Joy Beyond the Cross said...

Oh my goodness, her face is beautiful! What a sweetie. Please know of my prayers for you and precious little Rebecca!

Jamie said...

What a beautiful baby. My number one prayer is for a miracle and that she falls in that .1% chance of being born with zero complications. Then my "realistically optimistic" prayer is just simply for the Lord to be with you both and help you feel at peace with whatever decisions you have to choose.

Debbie said...

I'm thinking what Mary L. said...but could never write it as eloquently as she did. I am teaching my religion class about Mary the mother of Jesus this week and we will be learning to pray the rosary. I have not prayed the rosary since I was a little girl and didn't fully understand what the heart of a mother goes through. I'll be praying the rosary for you this week. Debbie

Amelia Bentrup said...

Beautiful face! We will pray for you.

Courtney said...

Praying. [[Hugs]]

Kathryn said...

Beth, what a blessing that you have a supportive, loving and kind neonatologist with whom to partner with during your delivery. They are worth their weight in gold. Should you go the surgery route, I will pray God provides you with a knowledgeable and compassionate pediatric surgeon. She's beautiful and I know you're cherishing every moment. After all, you get to hold her the longest ;) Hugs to you, Beth. ~K

Busy Bee Suz said...

Well, of course she is beautiful!
I'm so sorry you are having to make SO many tough decisions this early. BUT, I'm so glad you are surrounded with qualified and caring Dr's who want the best for Rebecca and for you.
Prayers for you and your family,
XOXO
Suz

Bonnie said...

Oh Beth, what a list! My heart breaks for you that you and your husband even have to consider all these things.

But she is gorgeous!

Prayers for you all.

Kathleen said...

I just found your blog. I will pray to Venerable Fulton Sheen for a miracle for your sweet Rebecca. A medical miracle involving a baby who was born stillborn has just been attributed to Fulton Sheen, as I'm sure you've heard.
http://www.catholic.org/hf/faith/story.php?id=54481