Saturday, September 13, 2008

Long Week and a Few Updates

This week was incredibly long. I wanted to write this post to update last night, but I am pretty sure I feel asleep somwhere around 7:30. Between several appointments, Back-to-School Nights, and work, Spencer and I are both exhausted.

I finally was able to talk to the doctor from CHOP yesterday afternoon, about 2 hours before our meeting with the hospital staff at Shady Grove. She said what I had been anticipating... that after reviewing the fetal MRI and our most recent ultrasound images, she agreed with the reports from Children's and from our maternal-fetal medicine group. She explained that she believes that this is more than just a giant omphalocele, and that the combination of anomalies that Isaac displays leads her to believe that he has what is called limb-body wall complex (LBWC). This is consistent what the doctor from the maternal-fetal medicine group mentioned on Tuesday. Both of them said that this was in no way a formal diagnosis, but rather their best hypothesis at this time since Isaac displays some, but not all, of the characteristics of LBWC.

We then met with folks at Shady Grove Hospital yesterday afternoon. The chief of neonatology was there, along with a charge NICU nurse, a labor and delivery nurse, and a social worker. We were able to ask more questions, discuss our birth plan, and take a short tour of the maternity ward. The neonatologist doesn't necessarily agree with the LBWC theory, but didn't really disagree either. Basically, she said we need to wait until Isaac is born to really see. She also has a background in genetics, so she will be a great person for us to consult with regarding follow up testing that Spencer and I may need to do to see if we're carriers of something that may put us at risk for something like this again. Clearly, there's still a lot left to find out and determine.

The nurses and social worker were absolutely wonderful and accommodating. Typically, after a c-section, you recover in a sort of triage-like area, with stretchers seperated by curtains. However, there is one private room across from that area that they will reserve for me to recover in and will wheel in a portable EKG machine (since I will need to be monitored after surgery). This way, we can have some alone time with Isaac as soon as possible, as both the doctor from CHOP and the neonatologist are predicting that his time on Earth will last somewhere in the realm of minutes, possibly an hour. Regardless, we're getting the sense it will be very short.

I gave the team the potential dates of my c-section, and the neonatologist recommended doing it on October 16th since it is a Thursday. She said that the pathologist should be able to do an autopsy that Friday. If I had my c-section on the 17th, then that would have to wait until Monday. The date still has yet to be confirmed, though.

They are also reserving an extra-large room in their maternity ward for me. There are two rooms like this, one at the end of each hall. They are also much more spacious, and are a bit more quiet since they're out of the way. We've also been told that we'll have no restrictions on visiting hours or number of visitors so that they can leave those decisions up to us. All in all, I think everyone is on the same page with our birth plan, and I feel very confident in the care that Spencer and I, and sweet little Isaac, will receive.

Please continue to pray for us as mid-October approaches. Spencer and I both feel the burden of this becoming increasingly more heavy, and we are very aware that the hardest part of all this is still ahead of us, despite the long road the past 4 1/2 months have been. I am also becoming increasingly more anxious about my c-section, mostly because of how "complicated" the doctors are saying it is going to be because of Isaac's positioning, the fact that the omphalocele is adhered to me, and how short the umbilical cord is. And then of course, the fact that it is major surgery doesn't thrill me either, seeing as I have never broken a bone or even had stitches.

We also appreciate your prayers for Isaac, that whlie he is with us he wouldn't be in a lot of pain, and that he would just feel so incredibly loved.

17 comments:

Angela said...

I am continuing to pray for you and baby Isaac.

Misty said...

My prayers are with you.

Devon Rene said...

my heart hurts so much for you. you are walking this journey set before you with such dignity and grace. i admire you for that!

i am so glad the doctors are being so great with you and giving you as much privacy as you need.

i am praying that your time with sweet issac would be one of peace and joy...

thinking of you always...

AngelsAmid said...

I'm glad the doctors seemed on board with your birth plan. I'm praying.. lots of prayers for you, your DH & baby Isaac *hugs*

Sharleen said...

I just found your site while searching for more info on LBWC. I am 30 weeks pregnant with a littel girl, Joy Elizabeth, who was been diagnosed with LBWC at 13 weeks. I haven't read your whole blog yet, but it looks like both Isaac and Joy are close to the same age. I read how your story started and it looks like you got your news about a week before I did. I swear I thought I was reading part of my own blog. See my blog entry titles "Joy's Story."

I will pray for you, Spencer and Isaac...for that miracle. We too pray for that here. I would love to be in contact with you. You can read about my journey in my blog.
*hugs*

Taylor said...

As I sit here trying to think of words that somehow might help, I glanced at the title of your blog... "He will carry me" and I want you to know that is so very true. God will be there in every little moment and I will be praying that you feel Him more than you ever have. I will pray that suregery goes flawless and I will pray that your time with your sweet son is special. On my knees for you daily.

Kristin (kekis) said...

I'm sure your hearts must be so heavy right now. I hope this last month feeling Isaac move, kick, and wiggle are more precious than ever. When Jesus does come for him, I pray that it is a time of peace and love for you all.

Thank you for continuing to share with all of us.

Stephanie said...

I will continue to keep you in my prayers that your surgery goes smoothly without complications. I pray that baby Isaac will spend his time in this world without pain, and I know that he will feel all of the love surrounding him.

Jennifer said...

Stacy,
Please know that you will remain in our thoughts and prayers. My heart is also hurting for you right now as I cannot even imagine how you all are feeling.... But, I can pray that God will help you have the faith to pull through. It sounds as if the medical staff is going to do whatever it takes to make you all feel comfortable! If there is anything at all that I can do to help, please don't hesitate to ask! Sending thoughts and prayers your way!

Josh, Jenifer, and Mackenzie said...

I came across your blog through a friends blog and although we don't know each other, I want you to know that I am praying big for you and your family. I am praying hard for your sweet baby.

Monica said...

Stacy, I'm heartbroken. I am so thankful that the hospital is going to be so accommodating, but I'm going to pray harder than ever that they don't "need" to be and that we all get the miracle we're asking for. Hugs.

Laura said...

I hear the tone of your voice in your writing...I hurt for you. We are praying and know Isaacs time with you is going to be so sweet. Truly holy moments..you are so brave.

Praying you and Spencer can rest this weekend and have your hearts feel held by so many.

cjinmd said...

my prayers are with you everyday. (((hugs)))

CJinMD

banbear2 said...

I continue to pray for you and Spencer and Issac every day. Your faith continues to astound me.

Anonymous said...

I am praying for you and your family.txfvu

Sheila said...

Continuing to pray for you, Spencer and Isaac....

Ellie said...

I am still praying for you, your husband and Isaac.

I live in Adamstown Maryland, just 2 minutes from you in Urbana.

I would like to be there for your family. Anything you need. A meal for when you get home, anything.
I would like to do that for you. I can drop it off before the hospital and you can freeze it.

anything we can do to help.

Just let me know if that is something you would like and we can exchange information.