Friday, July 18, 2014

Chloe Update & Upcoming Surgeries

It's been a whirlwind the last couple of weeks since Chloe got her trach. We call it her trach trunk. Goes well with her elephant theme ;). It was meant to be I guess.

Originally we were told after her trach that we'd wait 3 weeks out and get the g tube (feeding through stomach) and fundoplication (aka fundo, fixes hiatal hernia and helps prevent reflux). Then one week after that surgery she'd get her BT shunt in her heart.

However, that's been changed about a thousand and 2 times now. We haven't updated a prayer request for this because we didn't know how and what and when to be praying. But now we have a plan...

Her PDA duct is closing off, and the prostins are helping it stay open right now. Because this is closing off, if she weren't on the prostins, she'd be desatting constantly and in serious trouble. With her heart not stable without the prostins, she needs the heart surgery first so that she's stable for the gtube surgery. New game plan is now to do BT shunt last week of July (haven't narrowed down day, but somewhere between 28th-30th it sounds like). This would put her 4 weeks out from the trach surgery for that BT shunt surgery. Another reason we're waiting is because her trach site-the stoma-needs to be healed before surgery as there is a chance they might intubate and take the trach out during surgery for easier access to her heart.

After the shunt surgery is done and healing is well under way, and her heart is stable, then she's have her g tube and fundo. After healing from that, there's a chance she could go home to continue growing for her next heart surgery, the Glen, at around 6-ish months old. I have no idea anymore when they'll do things like her cleft lip surgery. Everything is somewhat up in the air until we figure out the heart issue.

Ways to be praying:
1. Pray for low vent settings. She cannot be on very much vent settings for surgery.

2. Pray for continued relief from extra secretions (which could cause her to aspirate or cause damage to her new trach if suctioned often). She's on a new med for this, but it's highly delicate...a lot of possible side effects, so they're only using it long enough to see if it works. If it doesn't, we get rid of it. However, I got to hold her for 2.5 hours last night and she only needed suctioned 3 times. This is amazing! Usually she needs suctioned at least twice every 15min before.

3. Continued wisdom for the doctors as they all consult with each other-between cardiologists for BT shunt surgery, ENT for intubation thoughts on surgery, ENT for continued healing of her trach site, neonatologists, nurse practicioners, nurses...please pray for wisdom, knowledge, skill for her whole team.

4. Pray for the surgery. We're getting nervous as we start to approach surgeries. Chloe is doing well, but with any surgery comes risks. Please pray for healing and peace in our hearts during these coming weeks.

5. For our kiddos. We've had them with us since July 9th and will continue to have them until the 27th, then we'll have a friend keep them that week of Chloe's heart surgery. They're loving time with us, and we're making a point to do fun things with them, zoo/Deanna Rose farm/parks, while Alan and I trade off who sits with Chloe. One of us is always with the kids when the other is with Chloe. Feels weird not getting to get updated together by Chloe's bedside, but it's helping the other two to thrive. Nervous for their little hearts to have to go back to friends soon.

6. For Chloe's delicate dance. Example: We were able to take her off lipids since her feeds are up to 15mL per hour. Nixing the lipids means we can up her chloride which will then help with her heart and extra fluid. Getting the right balance of nutrients for her means she can grow better and not keep doing this gain fluid, lose fluid game. It means we can get her electrolytes under control as well. Having the right balance of the rubinol (meds for secretions) means hopefully less side effects. Having the right balance of feeds, meds, reflux meds, nutrients, etc. will help her to grow. We were joking the other day with her neonatologist that we need to get her little ballet slippers to hang on her bed to remind us all of the delicate dancer she is ;). Anyone know where I can find some???

7. Please continue to pray for safe travels for our family around KC and between KC and Manhattan.

8. PRAY SHE GAINS REAL WEIGHT and gets to that 7lbs soon!!!!!!!

Ways to be praising:
1. He is with us always. He will never leave us or forsake us, even now.

2. Thank you to the National Worship Leader Conference for free tickets to the Brilliance, Rend Collective, and Meredith Andrews concert. A much needed night of worship. Thank you also to our friend Chelle for watching our kiddos that night. #blessed #recharged

3. For all who have sent cards and gifts. We have not forgotten about you all, but have been so, SO blessed by each and everyone of you, whether it be money, gift cards, things for the kids, meals, coffee...the list goes one and we are so, so grateful. You all are carrying us through this time. I may not get a chance to thank each of you personally or with a hand written card like I'd like to do, but know that as I sit and rock Chloe, each of you comes to mind and we are thankful. 

4. Alan led worship back home last week and we were beyond encouraged and loved by the many at Grace Baptist in Manhattan. We are grateful for each of you. Thank you to the elders for loving on us and asking us how we're doing, for the hugs, for the encouragement. We are blessed to see the body of Christ loving us through this time. 

5. Praise for down time. We came home last weekend since Chloe was doing good. I took the kids to the pool. We played with their toys. We had family dinners together, just the four of us at our own dining room table. Alan hopes to cook spaghetti this weekend in our own kitchen as he commented just yesterday how much he misses cooking. Ever since we got married, cooking dinner together as a family has been a favorite nightly activity, and we both miss it. On Monday Alan went to work while I took the kids shopping for a dresser to store all of Chloe's trach care stuff in when we get her home. According to nurses, Chloe needs to be in a common area by kitchen and bathroom because home health nurses will be with us 24/7 for the first couple of weeks. So after Hobby Lobby, happy meals, and having fun on the playground playing and running in the rain, I loaded up the kiddos and we went home to work on cleaning and organizing for when Chloe does make it home. Perhaps it's wishful thinking at times, but we choose to call it Hope as we prepare our home for her. Here's a few pics of our living room/nursery. 

Taking the time to smell the roses at Hobby Lobby.

Some sketches I did during church that are verses we're clinging to these days...

...that I framed on our mantle.

Chloe's corner. Can you tell? Perhaps the elephants gave it away. Soon this cabinet will be filled with trach tubes, vent stuff, saline bullets, gloves, 2x2s and 4x4s, alcohol wipes, extra suction catheters, diapers, wipes, clothes, swaddle blankets, the list goes on...

We'll move the little cradle we have there that the kids have been playing with their baby Chloe dolls in and a friend is lending us her old crib so that we can put the other crib in our bedroom so that we have one on each floor. Love this arrangement as the chair will be close to her crib and vent stuff for when we hold her. We were really hoping the laundry would fold itself, but no such luck. 

6. Finally, praise the Lord for our sweet little friend Charlotte. After a 7+ month journey, the words "going home soon" have fallen out of the mouths of her doctors, and her family is OVERJOYED. Let's celebrate this victory with them!!! Please pray for them as they adjust, not just to bringing her home, but to the house they JUST bought yesterday as well, that they can get moved in and set up quickly. 

THANK YOU ALL for your continued prayers and support. 


  1. Loving my Kansas family.....Be strong. Be brave. God has you in his hands and heart....I have you in prayer. Love, Mom