Hannah’s MRI & Echo [Long Post]

25 Weeks

Today was the day we’ve been anticipating - get some solid answers and have a semi-plan. So to start off I’ll top line with: it was a good day, everything suspected was confirmed and there were no surprises. So we left Children’s Hospital feeling good. 

5:30 am: Mom & Dad wake up and shower, Nora wakes up 15 minutes later due to all the bustling. We’re out of the house by 6:20am. 

7:10am: Find our way to Children’s Hospital. Embarrassingly, after attending UC for 5 years, I’d never realized Children’s location nor seen it until today. The hospital itself is like a small busy city - people moving everywhere constantly. 

Our day-long schedule - !

7:30am: Register with Radiology for my/Hannah’s MRI. We were asked various questions and I changed into gowns and got into the MRI room by 8:15am.

8:20am: I lay on my left side and the technician secures my mid-section with some foam pieces as well as my upper legs. I laid on a pillow, had a wedge for my belly and a pillow between my legs. I opted for music, so also laid on some large headphones. I was told it was going to be loud and it was; to the point I could not hear Bob Seger singing his Night Moves in my ears. 

For those of you who have not had the pleasantry, MRIs are not fun. It wasn’t so much being in the tube, but being slightly strapped down in one position for 1-hr that was hard. It’s a major exercise in mental escapism. It helped that my head was close to the opening… when the huge noises weren’t occurring, I would wiggle my feet and hands. But knowing you can’t really stretch or move position was rough. And twice I was asked to hold my breath for 20 seconds for photos. Ugh. 

Thankfully it went a little faster than I thought and was given a handful of graham crackers and apple juice - because I wasn’t allowed to eat prior! 

10:30am: Echocardiogram for Hannah - way easier since it’s essentially an ultrasound. The cardiologist came in immediately afterwards and confirmed what had been suspected: Hannah has an AV Canal Defect. The doctor said in terms of heart defects, it’s common. He talked and drew out what a “normal” vs AVCD heart looks like - she’s basically missing some connecting walls that can be taken care of through meds until somewhere between 4-6 months old when she’ll need open heart surgery [so somewhere between January - March 2015]. The cardiologist seems confident, he was great to talk to and super friendly. 

11:30am: Lunch [finally!] in the really nice cafeteria. Two observations - 1. Lots of kids stared at me presumably because of my belly. 2. Children’s Hospital employs a lot of special need people which impressed me.

12:30pm: Meet with an RN, Amy, who was incredibly nice. Met with a Genetic Counselor who asked about extended family medical history. Met with a social worker who can recommend more resources for Hannah’s [presumed] Down Syndrome. 

2:15pm: Meet with the Director of Fetal Medicine, Hannah’s Pediatric Surgeon and the Neonatal Director. These men reviewed Hannah’s MRI and Echo photos. First, her mildly large brain ventricles were brought up due to a bit of extra fluid. There is no blockage, so this will be monitored the rest of the pregnancy. If it becomes too much, she will need a shunt put in to drain the fluid to another part of her body. I really really hope this doesn’t happen because I’d prefer Hannah to NOT have a 3rd procedure. 

Second, her Duodenal Atresia was confirmed. The surgeon was very soft-spoken, but felt this was a very straightforward occurrence that they treat often. He also drew on a board what her stomach looks like and how they'll fix it. 

Third was the only surprise of the day: they saw a 1" cyst on Mommy’s ovary! Wheeee! Haha. Honestly though, they saw no concern and will pass this information to my OB. Great. 

Next, the Neonatologist went through what will happen immediately following delivery which was a huge help so we know what to expect. They all said to deliver at Good Sam based on their Level 3 NICU. 

First, I do have a higher risk of delivering early based on the T21 - average of a couple weeks possibly. They agreed I can proceed with what birth plans I want, but said I could have increased risk of a C-section simply because Hannah could have heart stress during the labor process. 

Once I deliver her, they will give us what bonding time they can, but the Neonatology team will need to assess her quick with her lungs, then heart. They will hook her up to an IV for nutrition fairly soon and give her an NG suction tube to remove the excess fluid in her stomach and duodenum. Within 1-4 hours of birth will transport her to Children’s Hospital. Tim will follow the ambulance and they will get me over when I can. That’s going to blow : (

Once Hannah is at Children’s, our team will assess her for how quickly to do the duodenal surgery. They will transfer her IV to a picc line which they can leave in for a longer time to continue to give her the nutrition she needs while waiting for surgery  as well as any meds she’ll need. 

She’ll then receive her stomach surgery which will be a small incision in her abdomen. She could need a gastronomy tube that feeds her directly below the correction so she can get her nutrition. Hopefully within 3-5 days she’ll be eating orally. They were straightforward to tell me feeding is going to be hard - it could be a few weeks until she starts to nurse from me. I think this is what I’m anxious about because feeing any baby is hard. Feeding a baby with Down Syndrome is harder due to their condition. Feeding a baby who starts life on tubes instead of Mom is going to be super hard. I’m determined to get her breast milk as long as I can, so I think pumping is going to be key. Because her heart will be working harder due to her AVCD, she’ll burn calories faster and need my milk to be enriched or supplement with formula. 

I’m anxious about the NICU experience - I anticipate being there at the very least 3 weeks… up to 6 depending on how Hannah recovers. We’re going to schedule a tour of Children’s NICU and hopefully ask more questions like how parents stay or come and go… visiting hours, etc. We still need to have care for Nora, yet see her and Oh Yeah! We have a dog too : P We’ll figure it out and know we have an awesome village of family and friends to help us. I just know I’m going to get itchy and want to bring her home to start our New Normal. 

I can’t repeat enough how thankful we are to live in one of the best cities to care for her. I actually keep forgetting she will probably have Down Syndrome because I’m so focused on her post-delivery needs. I also keep forgetting I have to go through labor - ha! I’m reading up on the Bradley Method and again, hope that I can at least deliver naturally. Of course, her health comes first! 

3:00pm: We leave Children’s feeling confident, reassured and glad that we have confirmation of what Hannah will need, we know how the game plan will go and we can continue to focus and prepare.

3:15pm: We treat ourselves to Starbucks

4pm: We pick up Nora with the best welcome ever: She hugs us at the same time and says, “Mom, Dad I love you so much.” I nearly start crying. 

Later this evening, I told Nora that Hannah had a check-up with the doctors today because she’s going to need her heart and stomach fixed. Nora said “Oh! Hannah’s broken?” 

“Well, a little, but the doctors are going to fix her.” 

“Daddy will be the Doctor?”

“Well Daddy’s going to help.”

“I’ll help Hannah, too.”

Now we wait for her to arrive!