100 Days

This past Tuesday marked 100 days since the girls were born, and 100 days of NICU for Lily. My mind can't really comprehend that. 100 days seems so long. The time has gone so fast, which I guess is a good thing. I'm hopeful that the remainder of her time away from home will go just as quickly.
I can't help but feel sadness when I think about it though. I am gripped with grief sometimes when I think about how I won't get that time back with her at home. I will never have her first few months of life over again and they were spent in the hospital, filled with strangers and surgeries and lines and tubes and xrays. I know I should be grateful that she's doing "well." She's stable, and just that fact that she's here is kind of a miracle when you think about all the things that were needed and are still needed to keep her alive. But I still grieve the loss of normalcy and the loss of expectations for what our lives would have looked like with all 3 girls at home.

But enough reflections for one day. The surgeon tells us that Lily's next gap study will be mid-May, so probably in a couple weeks from now. Dr. Elliot told Joe after the last gap study that if her esophagus has grown and the gap has become smaller, then we will stay the course and hopefully repair her here when she hits the 2cm or less mark. If she has not had significant growth, then we will likely start the process of transferring her to Boston. We don't know what that would mean for us as far as jobs and who would go out there with her for how long. It's a huge questions mark, or many question marks really. I've heard that it can be difficult getting insurance on board with the transfer. We would really appreciate your prayers surrounding this. I can't wait for the day when I can give the news that she's coming home. Somedays it feels like it's so far out of reach.

I do have some good news now! The cardiologists are very pleased with how Lily's heart is doing. We thought she may need to have her VSD closed as early as 2 months old, but her pulmonary artery bands are holding up and she continues to have near perfect oxygen saturation and lab levels. They still anticipate having to surgically close the VSD, but the longer we can put it off the better. Open heart surgery isn't easy to recover from for anyone, let alone a small baby. The cardiologist said we can stop doing echocardiograms to monitor her heart until there is a need for it. They were doing an ECHO every other week, but now we don't need one unless she's about to go to surgery for her EA repair or if she starts to be symptomatic (low oxygen saturation etc.)

Cora is doing well. We just increased her reflux medication dose because she's getting bigger. 12lbs! She's a pretty good night time sleeper now which we are so grateful for. Rose is going to be 2 in a few days! We got a play structure/swing set for her birthday present. Joe and his brothers put it together last weekend. She is beyond excited to play outside every chance she gets. She spends a lot of time at home these days (as most of us are) and loves to get away and go for a ride in Daddy's twuck :)

As always, we are so grateful for all the love, support, prayers, and gifts. We have been blessed by you. Love,

Heidi

Another New Normal

I survived my first day back to work!

I have to laugh a little when I think about the differences between going to back to work after Rose was born, and going back to work yesterday. With Rose, we did a practice day at her daycare a few days before I went back to work. I cried as soon as I got in the car after dropping her off. I wandered around the empty house that day, wondering about how she was doing and missing her like crazy.
In contrast, yesterday felt no different than any other day. I'm already used to not being with the twins all the time, and to be honest, work is going to be easier than taking care of my little people :)

Thankfully, it was a pretty slow day at work which gave me time to get caught up on all the changes I missed over the last 3 months. And there have been a lot of changes.. Wearing a mask for 12 plus hours straight is awful. My ears didn't hurt actually, but my face felt like a sweaty, humid swamp after about 6 hours. I have to fill out a survey online before my shift to make sure I'm healthy. Then I have to show my completed survey to someone when I get to work. They then hand me my mask for the day which is inside a paper bag. The entrances to the hospital are all sectioned off so that you have to enter and exit specific ways and in front of the screeners. It feels SO strange. People don't stop to chat like they used to or even smile and make eye contact like they used to. It's all very serious and the mood is apprehensive. I'm sure it was even worse a couple weeks ago. I think it's extra strange for me because I haven't been involved in the process. For people working throughout all of this, the changes came quickly, but in stages. For me, I came into work yesterday and it's like everything was different. There's new policies for what PPE to wear in certain situations, there's a clean drop off bin in my work space for N95 masks that have been cleaned and are ready for reuse (you get assigned a N95 if you need it and after so many uses it gets sent to sterile processing and returned to you in a brown paper bag). There are no visitors wandering around, or staff really. People just go straight to where they need to be.

Something I didn't realize right away, but I'm grateful for is my unique position at work will limit my exposure to Covid19 patients. I work in a large holding room with several bays that can hold several patients at a time. Because of that, we don't allow any covid positive patients in our room or any suspected covid patients either. Also, because we staff minimally on the weekends (I will only work Saturdays and Sundays) I won't have to worry about getting pulled to another unit. We always need 2 nurses and we only staff 2 nurses. I'm certainly exposed to a certain degree just by being in the hospital, but I'm very grateful that I won't be directly caring for these patients very much. There may still be a brief interaction if a covid patient is in CT or MRI and they need nursing assistance, but not like caring for them for 12 hours. This makes me feel much better about still visiting Lily.
Lily is continuing to grow and develop. She is awake for longer stretches now and she loves to play with toys. Her current favorite is a little keyboard that she kicks to play music. It's so fun to watch!

Anyways, going back to work just adds another layer to everything going on in our lives. We'll have to figure out a new balance between home, work, and NICU. We appreciate your prayers for the adjustment.

I am also grateful to have the day off today. In a rare situation, we had an extra nurse scheduled and I volunteered to stay home. Today is the one year anniversary of Joe's dad's passing. Ken was the best father in law a girl could have. He loved Jesus and his family. He was loud and silly a lot of the time, but also serious and full of good advice. He was super competitive and got super frustrated when we beat him in games like apples to apples or fantasy football. He teased me mercilessly and I miss him. I often wonder what he would make of everything going on and I wish he could meet Cora and Lily.

It's amazing how a change in your life can make you hear a song you know well sound like you're hearing it for the first time. Our worship this morning during online church included this song and it really spoke to my heart:

Higher than the mountains that I face
Stronger than the power of the grave
Constant through the trial and the change
One thing remains,
Yes, one thing remains.

[Chorus 3x:]
Your love never fails,
It never gives up
It never runs out on me

Because on and on, and on, and on it goes
Before it overwhelms and satisfies my soul
And I never ever have to be afraid
One thing remains
So, this one thing remains.

[Chorus 3x:]
Your love never fails,
It never gives up
It never runs out on me

[Bridge:]
In death, in life I'm confident and covered by the power of Your great love
My debt is paid.
There's nothing that can separate my heart from Your great love...

Sleepy Lily

Cora is starting to smile more :)

I made an eggless chocolate cake because Rose is allergic to eggs. She LOVED it

Surprised by some snow in mid April

Gap Study #2 In The Bag

Hi Friends,

This morning Lily had her second gap study. It was scheduled for 8:50am and when I hadn't seen or heard from a Doctor by 9am I started getting nervous. Thankfully they were just running a little behind from a procedure before Lil's. He apologized for the on-again/off-again schedule we had for it. He said he really had to fight to get it done today. So thank you, Dr. Eliot!! The procedure went well, and they were able to extubate her right away after the procedure which was good. The Doctor said that they measured the gap at 3.5cm which is about 1/2 cm shorter gap than last time. It wasn't "great" news, but it is closer than it was so it's still good news. To be honest, the cynic part of my brain says "is he just making this up to make us feel better? How can they even really tell if it's 3.5 or 4 CENTIMETERS?!". He said that they will (hopefully) measure again around the end of the month. If it is closer then, we will continue on this path and keep measuring. However, if it's not closer, then we have to start seriously considering transporting her to Boston. I guess if at this point a month goes by and there's not notable growth then it's not worthwhile to wait longer. I have no idea how that would go if it comes to that... The planner part of me wants to plot it out and know what the next steps are, what the goals and expectations are. But the scared-to-death part of me doesn't want to think about it at all. Our social worker, Tessa, stopped by to talk to me for a little while while I was up there. She was prodding a little, asking how we're handling this all and how we're doing. How we feel about it and all that. I just told her, well yeah it sucks. It's hard, it's stressful, and I'd really prefer to not be going through it. Especially with this out-of-left-field pandemic insanity thrown into the mix now. But we keep pressing on, because really, what other choice do we have?

Thanks for all your prayers, kind words, and support. It may not seem like much, but it does help and it is appreciated.

-JC

Big Day Tomorrow

I know it's been a while since we posted anything. Life has been crazy, as I'm sure it has been for all of you too. But I wanted to give a quick update because tomorrow is a big day. Lily is going to have her second gap study tomorrow morning at 8:50am. It was scheduled for last Friday, but got cancelled due to COVID19. In an effort to save supplies and resources for the surge that is yet to come, Spectrum cancelled all elective surgeries and procedures. That was heartbreaking news for me. But a few days later, Dr. Pennington called back to say that the surge is now predicted to hit later in the month, so they are doing some less urgent procedures now. Phew!
Many of you won't read this until after it's done, but if you do read this before 9am, please say a prayer for Lily and for us. We are anxious to know if the gap has decreased in size at all, if her esophagus is growing. The first gap study showed a 4cm gap between the two ends of her esophagus. Surgery to repair the esophagus can't happen until it's 2cm or closer. I'm not sure what would even be considered normal growth. I think it's different for every kid. I recently joined a facebook group for parents of esophageal atresia kids, and it's been very informative and a little eye opening. I won't get into it now, but there is still a long road even after surgery. And there are different surgeries, different schools of thought on what's the best way to repair it. I feel we can trust her surgeon though.

With COVID19 spreading in Michigan, it has become even more difficult to go see her. Only Joe or I are allowed to visit, and only one of us can be in the hospital at a time. So Joe will go for the study tomorrow while I stay home with Rose and Cora, and then I will go up with Cora to see her in the afternoon. Joe is still working, and we don't have people to watch Rose now because of the stay at home order, so I can't spend full days in the NICU like I used to. We take turns on the weekends, and I've gone up a couple evenings after Joe gets home from work, but that's hard too because of dinner/bedtime/family life. I daily struggle with feelings of guilt for not being able to spend more time with her. We also have to wear a mask the whole time we are there.

Another tricky situation is that I'm returning to work next week Saturday. I checked with the NICU manager, and it's ok for me to still come visit Lily as long as I'm not symptomatic and follow all the precautions. I just can't visit during my shift. I'm very uneasy about it, but I can't just not see her for who knows how long. I will be working weekends, 7am-7:30pm every Saturday and Sunday. I'm not sure what my role will look like exactly because I used to take care of a lot of outpatients and they have cancelled or rescheduled a lot of our patients. I may be sent to another department or floor. I will most certainly be caring for COVID19 patients and I'm scared that I might expose my family. I'm just trying to trust that God will protect us.

Cora was struggling with reflux for a while, but she started a medication that has been helping. She's growing and doing great otherwise. Just keeping us up at night! Rose is doing well too. I think she's loving all the Mommy and Daddy time and she loved the warm days outside recently.

Thanks for your love and support! We'll post another update tomorrow with the gap study results.

COVID19

Hey friends,

I know life is crazy for everyone right now. I wanted to give a quick update on the girls and how this craziness is affecting us.

Lily is doing very well. She's almost 7 lbs now! (6lbs 13 oz) We are waiting on her next gap study.  Hopefully it will happen sometime next week, but surgeries are on a case by case basis right now so they haven't given us a date yet. She's off her caffeine for over a week now which is great.  She also moved into a regular crib.

The hospital has been getting stricter and stricter on visiting policies.  We can still go see her, but only one of us (Joe or myself) are allowed in the hospital at a time. Cora can still come with me, but Rose is not allowed. We understand why,  but it makes it hard to go visit.  Plus, with the shelter in place order, I no longer bring Rose to daycare or have others come to our house to watch her. So I can only go visit if Joe is home. Right now,  Joe is still working. They are moving to 4 ten hour shifts next week.

Cora is growing too. 9lbs now! Both girls got their 2 month immunizations yesterday.  I brought Cora to her pediatrician's office,  but we had to go through the back door and they checked my temperature and Cora's temperature before we could go in. Cora is off all supplements now, so she's just breastfeeding like a full term baby. She's been having some tummy trouble that may be due to switching between different supplements and then going to just straight breastmilk,  or might be reflux. The doctor wants to wait a couple weeks before giving her some like prilosec for reflux.

Rose is doing well, just a little confused by the change in routines. She's happy to play outside more now that it's warming up a bit.

We appreciate your love, support and prayers.  Love you and stay healthy!

Not Much To Say

Not a whole lot to update on since the last one. Lily is almost 6.5 pounds now and doing well. Due to the Covid 19 situation, the hospital has enacted stricter visitation guidelines. No children under 12 are allowed to visit, period. They made an exception for babies that have twins there so at least Heidi can take Cora with her to see Lily, but now we'll need to get someone to watch Rose when she goes up there during the week. Also only two adults (instead of four) in the room at a time. Heidi and I have to get "screened" (do you have any symptoms, have you traveled, have you been around anyone that has traveled recently...bla bla bla) every time we go to the hospital. Just one more thing to add to the list of factors I guess.

Joe

Staying the course

Lily is 6lbs! Growing is her main goal right now,  so we are so glad she is putting on weight at a very good rate. She had another Echocardiogram today,  and everything is stable with her heart. We don't have to think about surgery to close the VSD until she becomes symptomatic.  Right now, her oxygen saturation levels are fantastic,  so no reason to expect surgery anytime soon.

Her next gap study will be at the end of this month.  We won't know the exact date until closer to then. Really not much to report,  which is good!

Cora is gaining weight and doing well too. She's over 7lbs! For the most part,  she's a trooper when I bring her with me to visit Lily. We have settled in to some routines which is nice.

Some days at home are definitely a struggle. It's hard to be patient with Rose when I'm sleep deprived. Please pray for Joe and I to have patience and energy!

We made it to church the last couple weeks.  It's so good to see friends and to be able to worship together.

I can't wait until Lily is home.  Love you all!

No tube for a minute!