Gap Study #1

Lily had her first gap study on Friday. It showed that the gap between the two ends of her esophagus are approximately 4cm apart. She will have another gap study in about a month to see if the gap is any smaller. The surgeon said he has seen gaps at 5 or 6cm, so 4cm isn't necessarily great, but it's not terrible either. As we mentioned in earlier posts, the gap needs to be 2cm or less before surgery,  but Dr Elliot also said they wouldn't do surgery until she was about 10 pounds. She was 5lbs 3oz as of last night, so she's got a ways to go.

She did great with the anesthesia, but unfortunately she had a rough night last night. She had at least 20 alarms (low heart rate and/or low oxygen) and many of them required stimulation. They gave her some oxygen, suctioned her and moved her replogle back to her mouth instead of her nose. The NICU doctor thinks most of the alarms are related to her thick secretions,  but some of them are from periodic breathing which is a premie thing. So they gave her another one time dose of caffeine.  She had a much better day and she looked good when we went to see her. She had her replogle replaced, and I got a picture of her before the new one was put in.  It was nice to see her with no tube for a minute!

Thanks for all the continued love and support! Cora was 6lb 15oz at her doctor's appointment on Thursday.  Yay! And Rose is still loving her big sister role.

No tubes!

Rose loves the toys at the hospital 

One Month Old and Some Reflections

We survived our first week on our own! It was a good week at the NICU and at home. Cora is eating and sleeping, Rose is being a helpful big sister, and Lily is finally gaining some weight. She's up to 4lbs and 13oz now. Almost 5lbs!

As Joe mentioned, the plan is to do Lily's gap study at the end of next week. Thursday or Friday I'm assuming. We have really been looking forward to this procedure because it will hopefully give us an idea of how much longer she's going to be in the NICU. It's not a surgery, no incisions, but she will have general anesthesia.  Dr. Elliot will put contrast down her replogle and contrast through her G tube site and then take xrays. The contrast will show how far apart the two ends of her esophagus are. Then we repeat the procedure in another month to check how much closer the two ends have grown. Once it's 2cm or less apart,  he can do the surgery to connect the two ends.
I talked to a nurse yesterday that took care of another girl just like Lily recently who was discharged home just 2 weeks after the surgery.  She had been in the NICU for 6 months.  It was really nice to hear about someone in the same boat as us, who got through this and is doing well now at home.

The girls celebrated one month on Thursday! I can't believe it's been one month already. It's all kind of a blur to me. I'm just starting to process some of my emotions. I hope you don't mind if I talk (or write) through some of it here.

My faith is really important to me. This last month, I've been in a place spiritually that I've never been before. My faith was never in jeopardy and I never doubted God's love for me, but I had and have some huge questions that I don't have an answer for. In fact, I'm not sure I even want to have an answer right now. I don't want to talk about God's will or His plan. I don't want to talk about how the girls were knit together in my womb. How could His plan include Lily's pain, and how could He have knit Lily together this way? These are too painful to think about, so I cling to simple truths that I do know. I know that God is love and that He loves me and my family. I often think about these statements of faith from a Beth Moore Bible study (hi Tas Philas!).
God is who He says He is. God can do what He says He can do. I am who God says I am. I can do all things through Christ. God's word is alive and active in me.

I don't want to unpack the big questions, like why yet.. or maybe ever. But I do want to remember who God is and spend some time just in His presence. I think that's the way forward. I don't need all the answers. I just need Him.

No News Is Good News?

Hello friends. We don't have any big announcements at the moment, just wanted to put up a quick update.

Cora is doing great at home. Usually going a few hours between waking up to eat during the night. She's up to just over 6lbs now. 

Lily is trucking along in the hospital. She's now up to 4lbs 12oz. Her first gap study will be next week, to start the process of tracking the (hopeful) growth of her esophagus. It seems that her face is starting to fill out some, and she's getting a little more color to her skin.

Rose is keeping out hands full at home, coming into full toddler exploratory phase. She loves Cora, loves to give her kisses on the head and "hold it" (she, he, and it aren't distinct in her vocabulary yet). She's learning new words, counting to 6, and remembering things at a rate that just blows my mind. 

Thanks for all your prayers and support.

JC

New Room, New View

After Cora came home, Lily was able to move to a window room. It's so nice! The natural light makes the room seem bigger and it lifts our spirits.

Lily has had a pretty uneventful few days. As some of you may know, premie's often have episodes where their heart rate and/or oxygen drop and they need stimulation to keep that from happening. They give caffeine to help keep the brain stimulated. Lily had her caffeine stopped earlier this week, but she started to have episodes of low heart rate and also low oxygen. So they restarted her caffeine yesterday, and she's having way less episodes now. Her nurse thought they would try taking her off again in another week. Otherwise, Lily is doing great. She's getting lots of rest and starting to gain some weight. She's up to 4lbs 6.7oz now. She had a good bath today and got to wear some of our clothes for the first time! They were waiting for her sutures to come out. The sutures that were from her chest incision from heart surgery almost 2 weeks ago came out Friday night, and her chest looks great!

Rocking the NICU like a boss

Tomorrow starts a new week and the first week of a new routine. My mom spent 2 1/2 weeks with us, and she and my dad went home today (back to Wisconsin). Figuring out a new normal with Joe at work, me at home with Rose and Cora, and trying to visit Lily in the hospital (for maybe another 4-5 months) will be tricky. I want to be at the hospital all the time, but I also want to spend time at home with Rose and Cora. As Lily's nurse said today, my heart is going to be in two places.  It's hard for me to imagine Lily being 6 months old and still being in the hospital. How can I create some sort of normal for her? A normal beginning to life where I would be feeding her, playing with her and putting her down for naps; where I would be taking pictures of her as she discovers her world around her in our house and the places we love to go.. it seems so sad sometimes to imagine her not having all of that the way it would have happened had she not been born with esophageal atresia. I know she's in great hands at the hospital, and that helps a little. I know that the staff does everything they can to help us do the normal things for her, but it's just hard.

On a happier note, Rose is being such a wonderful big sister. She loves helping me burp Cora. When Cora cries, she pats her head and she gives Cora kisses. It melts my heart. Rose also loves going to the hospital to ride the up down (elevator) to go see baby Lily :)

Welcome Home Cora!

Cora is home!! She ate well overnight and the nurse, occupational therapist and doctor all cleared her for discharge today. We stayed at the hospital for a while after she was officially discharged to visit Lily. They are leaving a bassinet in Lily's room for Cora for when we come to visit. Rose was very excited to welcome Cora home. She is doing a great job of being gentle with Cora, and being quiet when she is sleeping :)

In addition to breastfeeding, Cora will continue to get bottles of milk fortified with HMF, or extra calories and nutrients, until she gains some more weight. She has an appointment on Thursday with her pediatrician and he will decide when we can cut back and stop the HMF. 

It was hard leaving Lily there today..

Lily is doing great though, and just working on gaining weight for the next few weeks before the next step in her exophageal atresia journey, which will be a gap study to see how far apart the two ends of her esophagus are. Then they will repeat the study another month after that to see how the esophagus is growing. The two ends need to be 2cm apart before they can do surgery to repair it. 

Thank you for all the love and support! Today was a big day!

Oma snuggles with Cora

Rose loves Cora's new seat

Sister sister.

Driving home

Cora home at last

Quick Update

Miss Cora is still in the NICU, but we are hopeful that she will go home tomorrow. She finally passed her carseat test, twice! Now we are just making sure she can handle drinking her milk safely, without her oxygen or heart rate dropping. So the plan right now is to go home tomorrow (Tuesday).

Lily is doing well also. It's been a quiet few days for her, which is great. They've been increasing her feedings every 6 hours, and are now adding some fortifier to her milk. So hopefully, she will start putting on some weight. Her PICC line is going to come out today, so all she will have is her feeding tube in her stomach and her roplogle in her nose (sucks secrtions out of her esophagus pouch).

We're very excited for Cora to come home, but also a little anxious on how coming to visit Lily will work now that there will be 2 girls at home to figure schedules and care for.

Mom and Lily

Dad and Cora

(Almost) Halfway There

Hello Friends!

We've had some more positive changes since our last update.

Lily is now back down in the NICU with Cora. She's off the ventilator and CPAP and doing very well in that respect, so thank goodness for being able to see our baby's face clearly finally! They are increasing the amounts of her feedings at a higher rate than they were before, to stretch out her stomach. More food, more growing, more progress! Yay! Also, they moved her Replogle tube from her mouth to her nose (the tube that pulls saliva secretions from her upper esophagus) and she *really* liked that. I'm sure having a tube going through your mouth and down your throat would be very annoying. Hopefully, now she can just rest comfortably and grow and be done with surgeries for a while.

Cora is also doing great. She is eating well above the minimum required amount and is now 5lbs 9oz. We were hoping/planning to bring her home today, unfortunately, we found out this morning that she didn't pass her car seat test. Due to her size and premature birth, before she goes home they put her in her car seat (in the NICU) for 90 minutes and monitor her blood pressure and oxygen level. Apparently, her oxygen level was dropping throughout the test. We're not sure yet what that means for us if she will just have to stay there longer or what.

Is it just me, or is there a resemblance here? -->

Yay Cora! No tubes! No tape mustache!