Adventures with Ellie: Testing today...

Today was a very big day for Ellie. Around 11:30am, they came in to walk us down to the cardiac cath lab to start testing. We had to hand our sweet baby over to the anesthesiologist (which is incredibly hard) to start her day of intense testing. She was intubated and sedated for the 4 hours of testing. First, she had a bronchoscopy (where they scope her airway to look for obstructions). As soon as that was done, they started the heart cath. During this procedure, they go into a vein in her groin and the catheter runs all the way up into the chambers of Ellie’s heart and the veins and arteries connected to her heart. Once through the cath, Ellie would head into the MRI lab for a brain MRI. Whew!

The scope went great and they did not find any abnormal obstructions in Ellie’s airway. She had some obstruction and she has what is described as a “floppy” trachea… both of which are common in babies with Down syndrome. We expected this. Next came the heart cath. After the cath, the doctor brought us into a private room to discuss his findings. He showed us images of Ellie’s right and left ventricles (below) and showed us that the right ventricle is considerably smaller than the left… considerably smaller than it needed to be, really. He couldn’t for sure say if it was just underdeveloped or if it just had so much extra muscle around the ventricle that was making the holding tank so small. Either way, it’s small. He said the surgery team would have to discuss the plan for repairing this. He also showed us that Ellie has 2 large holes in the atrial septum and a very large hole in the ventricular septum. This was not the news we were hoping to hear, that’s for sure. He also said that Ellie’s body is already starting to restrict the blood flow from her heart to her lungs. This is the body’s way of protecting the lungs when the pressure in the pulmonary arteries is so high. This isn’t necessarily a good thing because one of the treatment options is to band the pulmonary arteries to reduce the pressure… Ellie’s body is already doing this… at 3 months. I won’t make any other assumptions or predictions, though, because I can drive myself crazy. I’ll have to wait until the cardiac team has their Tuesday surgical conference where they’ll discuss Ellie’s case and determine the best option for her. From the looks of it, a 2 ventricle repair looks unlikely, but I’m not losing hope for that. An interesting fact: Dr. Hirsch (the one who did the heart cath) said that the pulmonary hypertension she’s experiencing could be the culprit for what throws Ellie into the autonomic storms she experiences.

Ellie was back in her room before we’d hear back on the MRI. We got to finally see her again around 5:30pm (after turning her over to the team at 11:30am). I cried when I saw her. She just didn’t look like my sweet baby. She was still intubated and her arms were in restraints. Someone was in the room doing an ultrasound on her veins and arteries to look for blood clots. She was still coming out of sedation, so she looked up at me, but with glossed-over eyes. I leaned into my Dad and cried… it is hard seeing your baby like that. I’m sure it was hard for Mom and Dad to see their grandbaby like that, too. I gave B a big hug and prayed for our sweet girl. They were giving her some more sedation medicine so that they could get her tube out… which would be great, but they told us it’d be an hour, so we ordered food and headed out to the family area to eat (we can’t eat in the ICU, of course). On the way there, we met up with our cardiologist from the cardiac unit and discussed other test results. She said that the MRI was clear and there weren’t any abnormalities that might be causing the storms there. Good news! She said there were some things they saw, but they were likely more related to Down syndrome than anything else. We’d know more when we talked to someone tomorrow. She said the sleep study results came back finally and that Ellie has severe obstructive sleep apnea. We’re not sure what this means, treatment wise, for our home routine, but we’ll work that out before we go home. For tonight, Ellie will be sleeping on an incline with a shoulder roll behind her (to open her airway more) and she’ll be on blended air to help keep her pulse ox up. The doc said that sleep apnea could also be the culprit for the storms she’s been having. That would make sense since the storms usually happened at night. Hmmm. We had a lot of new information and a lot to digest, so we went back into the family room to get some dinner.

While in that room, we were talking in depth with other parents eating there… they all had kiddos in CICU. One man (who was dressed in Air Force fatigues), shared the story of his little girl. She was 4 months old and they’ve been in the hospital for 3 and a half months. Ugh! This poor guy! When their baby was born, they were told that either she wouldn’t survive because of her heart defect, or that she’d need a transplant at some point. She’s been through several surgeries already. She had open heart surgery last week and coded this week. When they did CPR on her in the hospital, the pressure on her newly-mended sternum split some of her metal sutures. My heart breaks for them. So while we’re inundated with a lot of new (and scary) stuff right now, I was humbled by how much easier our path is than some others. So tonight, I’m thankful for all of you who lifted Ellie up in prayers and carried her through all of these procedures. She came through like a champ. Tonight I ask that you please pray for the other families in this unit (or in any hospital room anywhere). Some of these parents are dealing with some unimaginable obstacles. We love you and know that your prayers have done so much for our sweet bug… I know that some of these families need prayer, too. And I’m not sure if they all have the support system that we do.

God, keep these babies in your mighty hands and heal their bodies. You are the Great Physician and You work miracles every day. We trust You and know that You are guiding the hands of these doctors and nurses and surgeons every single day. In Jesus’ name, Amen!

Here are some pictures for you. Oh yeah, and our baby girl is 3 months old today. I don’t have one of those cute little shirts to put on her… sorry. Thank you again, for following along.

Helping Daddy root on the Browns on Sunday.

And sucking her thumb (now that it's not in a mitten, finally)

Lance & Kaleb helped Grandma & Grandpa decorate for Christmas. I'm shocked that Kaleb isn't terrified of this Santa. Maybe we have hope for a good picture this year!?

My sisters brought the boys to Cincinnati so we could all go to the zoo and see the Festival of Lights on Saturday.

On Friday, the boys got to help pick out a HUGE Christmas tree for Grandma & Grandpa's house.

Our pretty little Ellie before her sleep study on Monday night.

Lots of leads and such... ready for a sleep study.

The boys watching shows and eating snacks in Tracy & Josh's office.

Our bug coming out of sedation today - after her tube was removed.

Ellie & Daddy.

Ellie & Mommy.

Such a little peanut with so many monitors going around her.

Ugh... can she be any more beautiful, really??

A picture of her heart cath. I know this looks like nothing to most of you... they had to show me what everything was, too. The top picture is of her left ventricle (looking just fine), the bottom is her right ventricle (pretty tiny).