Home from Seattle Consultation

Well- we are home. Still feel like my brain is lagging from the ride home, but Judah did wonderfully and practiced his walking quite a bit on the stops we took. He is practically a pro now. (I think he started walking and running at the same time- so his walking is semi dangerous as he is always at full speed- and not always at full balance). It's such a joy to watch him changing and learning these new things- darn my exhaustion level gaining by the day for the last 10 weeks of this pregnancy.

Our appointment went well, we were so happy to have researched and talked to so many other families with different heart issues (mainly HLHS)- because we knew what to ask and we feel like we really have a handle on what to 'expect'.

Gabriel has HLHS with AV- which is actually good. AV is a hole in the heart, but in HLHS it is a hole that is needed (he has 2 holes). If his 'septum' was intact, it would make surgically repairing his HLHS far more complicated, and the hole is helpful for the surgeries.

We were also told (there has often been back and forth on this) that his femurs and arms are measuring at least a week behind in growth- which could be from his short genes. (Nick and I are short people at 5'5" and 5'7"). What this indicates is possible Down Syndrome, as they have said before- but it doesn't 'really' indicate it, as it could just be a normal variant.

The only reason it matters if it is DS is that the complex 3 surgery heart 'fix' is apparently not possible for DS babies. The third surgery, the Fontan doesn't seem to go well with babies with DS- no one knows why- but they just don't fair well afterwards like other children.

Other than that- we wouldn't care if he had down syndrome, but no 3rd operation means the 'fix' for the heart cannot be completed- and we aren't really sure how they would go about it otherwise.

For now, we are going to just not worry about it- since it won't change the first or second operations and there is nothing we can do either way.

We left feeling vindicated as far as the amniocentesis goes. When we asked the Seattle doctors about it- they said they don't recommend an amnio- since at this point it carries a 1 percent chance of triggering preterm labor- which is the last thing we want for Gabe. Not only that, but when Gabe is born they will take some of his cord blood and do the same tests- which will be back to us with results in 48 hours. So in all reality, they don't need the test.

This made me want to HA in our doctors faces, but I just feel happy to know that we did the right thing for us and stuck to it. That's what really matters to us.

As far as breastfeeding goes, that option flew out the window, as until he is recovered a lot from his surgery he will not have the option of even trying. We will be pumping (we were donated a breast pump from an extremely generous woman- an extremely nice one)- and giving him everything we can possibly give him. This was a huge blow for me- although I did expect it. Not getting to breastfeed Judah and not really having an idea of how to pump enough to make it happen that way was so frustrating. I was so looking forward to trying again.

I also wanted to do a natural birth at a birthing center and be a sling baby carrying mommy with a hugely fat baby- and that's not the cards I got played. So yes, I am definitely dealing with some major disappointments right now. But I just want to get to see my baby. I want to be with him, and I want to keep him for as long as possible. That is what matters to me.

So we will head up to Seattle around the 15th of August and be there until birth. After birth, the surgery will take place between 4-10 days of life- and the hospital recovery for it is about a month on average.

We will get to hold Gabe for a few minutes when he is born. Then he will go to recieve a medication called prostaglandin which will keep his extra artery (PDA) open and keep him doing well until surgery. While his on the medication, he must be monitored closely- because it can make babies sleepy and sometimes they need intubation to remember to breathe. He will be transferred to the Children's hospital within a couple hours of his birth- and I will work on recovering to get over there. Although I want to be there the whole time, until I can get around well, I am probably going to let myself rest for a moment- since I exhausted myself so much trying to be with Judah when he was born that I could hardly function. I want to be there- but I want to be rested and ready to be there for my little one.

The Children's Hospital is wonderful. It was fun to tour, it has a pool that is open for an hour every day to Judah- very warm pool. It has a beautiful outside playground and some awesome indoor things too. It's going to be wonderful to have Gabe there, since Judah will have things to do too. My brother Jonathan is going to come up with us and watch Judah when we can't after delivery- and this makes it even better. A place to take Judah- woo!

At risk of overloading information, I am going to leave this here for today and write more later. Judah is looking for some Mom time fun- so Bless you and your families and keep us in your prayers <3


Amy Bennett said...

I know it's a lot to take in, but it really sounds like you're doing a great job, mama!!!

Oh, and your quote "I also wanted to do a natural birth at a birthing center and be a sling baby carrying mommy with a hugely fat baby" - I could've written the exact same thing. I had hoped for a home birth in fact with Bodie, but obviously, that wasn't going to happen. And don't get me started on the sadness of not getting to breastfeed him (I hear ya on that one!!!). BUT, I definitely got to be a sling baby carrying mommy. Push for skin to skin as soon as possible once he's recovered enough from surgery. I had Bodie in his wrap as soon as I could and OFTEN. Once we got home,it got to the point where he wanted to be in it A LOT. He still loves his Ergo. And, he looks chunky (he's not fat, but he carries his whole 25% percentile really well and looks like a fat little guy), so there's hope for you yet!!!

Heart Hugs,

Live Joyful said...

Praying for you Julia! If you need a moment or some hang time give me a call!

juroguitar said...

Thank you so much Amy :). I will be buying a wrap then, looking at the ring style ones- they seem to be so nice! I'm hoping he will be a chubby little one- we had a lot of trouble keeping weight on Judah- but it seems that every baby is so different anyway! Still processing, and definitely tired from all the information surging around- but thankful. Thankful for doctors and hope and actually knowing what to expect.


Total Pageviews