We helped out at an Easter Hunt for local foster families and DCS families. Kierstyn didn’t quite know what to think.
She ended up lying down in the grass for part of it! We laughed that she was sun-bathing instead of collecting Easter Eggs.
We also tried to get family pictures on Easter.
That was quite the ordeal — as you can read about here.
Baby D had his first big cleft surgery — this one to repair his cleft lip.
He had some complications after the surgery and ended up needing to stay in the hospital for longer. (Mostly just that he had a little trouble after the sedation to be able to breathe on his own, so he needed supplemental oxygen for an extra day and a half.)
One of his favorite books! (And a sweet follower sent us the Spanish version, too!)
There were some additional concerns when we were staying at the hospital, so they ended up doing an 18-hour EEG (this is the back of his head, by the way — when I posted this picture on Instagram, so people were concerned that his face was wrapped up!)
It was so hard to have him all hooked up to so many wires for hours. Gratefully, he slept through some of it and they allowed me to hold him for some of it, too. He was SO happy to get all of the wires off, though!
After a day and a half in the hospital, Baby D took a huge turn in the right direction! Not only did his levels stop tanking when they took off the oxygen, but they EEG was completely normal!
Even better than both of those things, early Wednesday afternoon, our boy “woke up” — he started smiling and talking to me instead of just fussing and acting agitated and confused and out of it!
I could barely contain the tears! I didn’t realize how much I’d been holding my breath for two days — concerned that something was really wrong since he wasn’t acting like he knew me at all and hadn’t really been interactive at all except to be make it clear he was in a lot of pain and frustrated.
I FaceTimed Jesse so he could see and said all emotional, “Our boy is back!” He then proceeded to talk and smile with Jesse, too!
Since he did so well the entire day and was able to maintain good O2 levels without supplemental oxygen, he got to come home last night!!! We are so thrilled and grateful. And so humbled by the outpouring of prayers and support from you all! Thank you seems inadequate!
I feel like God is growing my compassion and empathy so much through this. The past few days were a tiny drop in the bucket compared to so many families we saw and interacted with at Vanderbilt. I spent a lot of time at the hospital thinking and praying for other mamas and daddies sitting at hospital bedsides.
Since we are likely going to be spending our fair share of time at the hospital over the next few years, I started keeping a log of things I learned/want to remember for next time:
1) Get showered and dressed by 6 am. Otherwise, it probably won’t happen!
2) Bring your own pillow, blanket, body wash, and towels.
3) Don’t forget disinfectant wipes!!
4) Pack more snacks!
5) Make it your goal to encourage and show gratitude to every person who steps into your room. Working at a hospital is hard — do all you can to make the staff’s job as enjoyable as possible.
6) If you have an opportunity to eat or drink or walk outside your room for a minute, take it. You never know when you’ll get the next chance. (What other tips would you who are pros add to my list?)
I was so honored to be on The Christy Wright Show recently! (You can watch it here.)
Kierstyn was so happy for Baby D to get HOME from the hospital!
I love the sweet relationship these two have.
This is one of my favorite pictures I’ve ever taken of her. It captures her personality so perfectly. She brings so much joy to our home!
Watching my man fall in love with this sweet boy warms my heart so much!
Brooke says
My husband had major surgury a few years ago. I’d add to your list:
1. Set up a meal train to feed your family at home. People want to help – if you give them a way to help they will, and it’s on less burden to deal with when both parents emotional energy is spent.
2. I had my close friends bring food for me to the hospital for lunch. If I was able to step away, I’d eat with them. If I couldn’t they would drop food, give me a quick hug, and run. It was sanity saving.
3. Make friends with the nurses. They are the true lifeblood of the patients care.
4. If you need to leave the room, make sure your phone number is written prominently on the care board so everyone knows how to get a hold of you if needed.
5. Make a plan for you to get sleep. Hospitals are terrible places for rest. Trade off nights, bring headphones – do what you need to do to fulfill this basic need to you can be present for the patient the rest of the time.
Crystal Paine says
Thank you so much for sharing these great tips! That is so amazing how many people offered to help you!
Brooke says
We had a meal a day and people asking if we wanted breakfasts and lunches too. Our community is amazing! By the time our meal train ran out, I could not have taken more food. Our fridge and freezer were stuffed. We were eatting for weeks after. It was such a blessing – and we discovered new-to-us meals that have now become family staples in our meal rotation.
lyss says
I just noticed Rebekah at moreradiance.com recently posted about hospital stays with a child. Her child has been through heart surgeries. Might be helpful to someone. : )
https://moreradiance.com/how-to-navigate-a-hospital-stay-with-your-child/
Crystal Paine says
Thank you for sharing!
Julie says
I just wanted to say how special your family is. You are such giving and loving people. You and Jesse amaze me with your unselfishness in loving these sweet babies in need. Y’all inspire me. The love of God shows through you both! I enjoyed the update and all the pics.
Lana says
I spent 16 days at the hospital with my husband four years ago. People kept asking what I needed done so I put a list on my kitchen table and hid a key. Some did go to the house and take care of some things for me which was a huge help. A friend drove me back and forth from the hospital every day because I fell asleep driving home one night. Don’t be afraid to ask for help.
Crystal Paine says
That’s so fantastic that so many people offered to help!!
Anne M says
Bring small bills and change for quick runs to the cafeteria and/or vending machines.
Bring easy reading such as popular magazines or “beach reads”, for when you get a moment or two.
For after the hospital: Have about 2 weeks worth of easy-to-prepare meals for you, and whatever special foods the hospitalized child will require.
Our son is cleft-affected, and had his lip and palate surgery before we adopted him. We were there, however, for his follow-up surgeries (pharyngeal flap construction, and bone allograft to the jaw).
Crystal Paine says
Thank you so much for these suggestions!
Anne M says
Should be bone AUTOgraft (from his hip to his jaw to fill in teeny holes).
Donna says
I learned to keep a journal of all tests and surgeries. I kept it with me at all times. If we ended up in the ER and saw a new doctor I could always answer his questions because I had my “book” with me. I kept track of all the medicines he was on, any complications or reactions from medicines. I I listed all hospitalizations and what the diagnosis was. After 35 surgeries in his first 5 years I had to keep a list.
Crystal Paine says
Such great tips! And 35 surgeries in 5 years is crazy!! Our hospital has an app that lists a lot of this information in it and that has been so helpful to us since we weren’t involved in the first 7 months of Baby D’s life.
Stephinie says
Make sure you have extra clothes for you. Ask for anything you might have forgotten, most staff will make an effort to find it for you.
Crystal Paine says
Great tip!
Courtney says
I don’t know about Vanderbilt, but St. Louis Children’s Hospital has a Ronald McDonald ROOM (not house). It’s in the hospital and is designed to be like a home away from home. They have free washers and dryers, real showers with free soap, shampoo, etc., snacks and drinks, a kitchenette, and a living room to relax in. It can be so nice to get out of the hospital room and feel like you are in a house for even a few minutes!
Courtney says
Btw, our child that I have spent time in the hospital with also has a cleft lip and palate. 🙂
Crystal Paine says
You’ll have to send me all your best tips! We are learning as much as we can as quickly as we can!
Crystal Paine says
Such a great tip!! And they do have a room like this at Vandy!
Vanessa says
Vanderbilt is amazing, friends work there! The hospital’s social work dept can help with arranging for housing at RMcD house; if interested, call when you know more about dates for your next surgery. The general number is (615) 936-2113. We’ll keep you in prayer.
Crystal Paine says
Aw, thank you so much!
V. says
Take notes – I thought I’d remember everything, but I didn’t, and the discharge notes weren’t always really detailed.
The best advice I have, is from a friend, a hospital social worker – she told me if someone offers help, and you trust them, let them help, even if it’s something small that yes, you really could do. “Because time spent doing chores or whatever is time not spent in resting, playing games with your littles, or a talk or prayer with your spouse, and you will need all that to keep up your stamina for this long journey.” It is sooo hard for me to do, but time has proved how wise her advice was.
Another mama on the ward suggested we try to accept some help if possible in the first few days home, so each of us could catch up on sleep lost during those hospital vigils.
Crystal Paine says
Thank you so much for this great advice!
Katy in Africa says
I second taking notes. I found I forgot so much, especially as I was sleep deprived, stressed and things were constantly changing. Then I could more easily and accurately answer questions looking at my notes if needed. And they could be used later to jog my memory if all the days start to blur together.
Glad he’s out of the hospital!