Patience

"But those who hope in the Lord will renew their strength. They will soar on wings like Eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31


Hope and Patience is what we have been thriving on since Evey was born. Hope that she will continue to make progress and patience as the Doctors plan her route of care. The above verse is no doubt one of my favorites. I first heard the verse in "Abba" a Rebecca St James' song in 1996. The hope we have renews our strength, it gives us patience as we wait to see what God has planned for Evey. 


Evey has had an eventful month. At the beginning of October she received her G-tube. At the same time, they did a LADD procedure to correct her malrotation of her intestines. She did great through the surgery! It usually takes 2-3 days to recover from the surgery, however we spent an extra 2 days due to her desating into the low 50s and high 40s. After all the medications left her body, she was able to get back into her 75-85 O2 range. They were so overflowed in the Pediatric Cardiac ICU that we had to stay in the Pediatric ICU, but thankfully we were moved to the PCICU the day before discharge and she was able to see all of her favorite doctors and nurses. 

On November 1st, she had her cath lab to look at possibly ballooning her stent and to take a look at her lungs to see if there was anything else causing her to need oxygen. The goal has always been to get her off of oxygen. We were told to check-in by 9am so knowing 85N traffic we left a little earlier to give us time incase there was a wreck and to be able to find a parking space and walk through the tunnel to get to the hospital.  We were brought back to the preop room around 945. She checked us in and then we waited.... and waited... and waited some more. Around 12:30, after passing her back and forth between the two of us because she was getting fussy, the nurse was able to bring back some sugar water for her to lick so that she could have something on her belly. At 1:30 they took her to the cath lab for the procedure, Around 4:30 they called and said they were successful in ballooning her stent. 

The Doctor came out and talked to us about the procedure and said that they tried going in through her leg but was unsuccessful so they had to go under her arm. Thankfully they are small incisions so they only look like a small boo boo. Her recovery was SO much smoother than her surgery in October. She only had to be put on supplemental  oxygen a couple of times during the night and the next day for her low saturations, but we were able to go home the next day WITHOUT supplemental oxygen. 

We have been patiently awaiting the day that she would not need supplemental oxygen! It's progress in the right direction and it has been so fun kissing her cheeks, walking around the whole house, showing her the kids room, her room and giving her a bath in the big bathtub instead of the small sink in the downstairs bathroom. You should have seen the kids when I put her in the bath for the first time. They swarmed around her to see how she would do. They tried showing her toys, shooshing her and slowly dripping water on her so that she could enjoy it. The only part she enjoyed was being out of the bath! 

Laney has had the best time holding her and playing with her since she does not have to worry about the oxygen being attached to her. She will carry her around the house like she is a baby doll. Evey loves it too! Laney has gotten some of the best smiles from Evey!

Jonah will play with her on the floor and the biggest thing is that he does not have to worry about telling us her cannula is out or that she is chewing on it. She has now found her thumb and is beginning to suck on her thumb when she is getting hungry! 

Ty has learned to be gentle with her. He likes getting in her face and giving her kisses and he tries to help feed her, but he is learning that she needs to focus more and that feeding her right now can't be done. He is our fierce lover, always hugging her and petting her.  



Now we are patiently waiting for her big OPEN heart surgery and the day that she takes the whole bottle without getting tired! 

We are praying that her heart surgery will be set sometime in March and that after surgery she will have an uncomplicated recovery. She is a strong girl and she has shown our family how to have hope and patience! 

Be like a Bee- hardworking, wise and delicate!


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