Home at Last!

After 5 weeks away from home and having our family separated, we are now home and have been reunited. How sweet it's been to bring our baby girl home and to have our family together once again! The passed couple months have been a trial to say the least, but we are comforted knowing that God is sovereign, that the temperature is just right, and that this is just a snippet in his big story. We continually pray that God will use the life and trials of our sweet girl to bring glory and honor to his name.

Evelyn was a happy girl before we left the hotel to
go to the hospital. She is such a sweet baby!

Getting ready for her heart cath. procedure.

As most of you know, Evelyn had her 2nd scheduled heart surgery at Children's Hospital Colorado on October 5th. She was admitted into the hospital on Thursday the 4th for a heart catheterization procedure prior to her surgery. All went well and she had her surgery early in the morning on Friday. It took a good 5 or so hours and the surgeon said it was a technically difficult surgery because the anatomy of her heart is very unique even to their standards, she had a lot of scar tissue on her heart from the last surgery, and they had a few different repairs to make (I won't go into all of that here). During her surgery she developed complete heart block which the surgeon was very surprised by, so they put her on a temporary pace maker hoping that her heart would recover proper function once the swelling subsided. Her recovery after the surgery went very well and by Wednesday she was smiling and playing with her toys and in all reality we probably would have been getting ready to go home if she wouldn't have had the pacemaker.

Evelyn just after her heart surgery.

However, very unexpectedly on Wednesday afternoon Evie had a major "episode" that sent everyone spinning and still leaves the doctors puzzled. She had a sudden massive bleed in her chest that they still cannot explain, she had a very difficult time breathing and her oxygen saturation levels dropped very low. It was an extremely scary time that stretched over hours in which there was a team of medical staff trying to save her life and stabilize her. They called to have her placed on the ECMO machine twice but thankfully never had to use it. I thought for sure they were going to come and tell us that we had lost our baby. Once she was in a little better place, they took x-rays and immediately took her to get a CT scan thinking she had a seizure and/or stroke and wanting to make sure she didn't have any bleeding in her brain. Praise the Lord there was only one small blood spot in her frontal lobe so they hooked her up to an EEG to monitor over night. 

Evelyn with one of her wonderful nurses in the CICU.

She was quite agitated and uncomfortable all that night and the next day and gave us a bit of scare the following day with heavy breathing and really blotchy skin - similar symptoms to the "episode" the day before but thankfully it never escalated into anything serious. Then on Friday they decided to proceed with surgery to place her permanent pace maker. She was a little unstable throughout her surgery but the pacemaker went in fine. After the surgery, as they brought her back to the ICU, she became very tachicardic (fast heart rate) with really high blood pressure and low oxygen sats again. It took them a while to stabilize her but she finally came to a good place. They decided to monitor again for seizures and determined that she had been having several seizures. So they started medicine to get them under control. It took a little time and a couple different meds but they were able to stop the seizures. During this time she was very sensitive and agitated by touch so the nurses and doctors and even Brian and I tried to leave her alone as much as we could to let her rest and recover from all the trauma she had been through. Amidst all this she also became very congested with thick mucus so was tested and found positive for the Rhino Virus (a cold) and we also think began teething. 

Getting to hold my baby for the first time after surgery!

Because of her history and unpredictability everyone wanted to be extra cautious and move slowly with her. Therefore, we spent another good week in the ICU before they sent us to the Cardiac Progress Care Unit for her final stages of recovery. Physically, she seemed to recover well although it took some time for her to get over the cold. In addition, there was concern over her brain function due to the low oxygen levels and the trauma from a possible stroke and seizures. Over the following weeks many different specialists evaluated Evelyn for signs of disfunction but praise be to our good and merciful God everything seems to be functioning well! However, after all the trauma our little peanut decided she no longer wanted to eat. We tried for a couple weeks to feed her by mouth but for one reason or another she simply was not interested. Every kind of specialist you can think of consulted with us and everyone agreed that there seemed to be no reason she shouldn't or couldn't eat. It's as though she was choosing not to. There are a few different ideas as to why this is but no one knows for sure. On October 30th she had surgery to get a more permanent feeding tube placed in her stomach and abdomen. Surgery went well and despite everything she has gained a significant amount of weight in the last 2 months. She still does not eat much by mouth but we work on it a little every day. In addition, she is still on oxygen continually and there is a current narrowing in the shunt she had constructed during surgery that will need to be addressed in the next few weeks, but for now we are home and thankful to be among family and friends.

"Papa, what a nice beard you have!"

Now, I don't want the rather negative story you just read to be deceptive as it does not paint an entirely accurate portrait of our experiences. There have been countless blessings and beams of light gleaming through the darkness every step of the way. During our stay at the hospital we were able to meet some neat families each going through their own trials. It was encouraging and sweet to get to know them and we thank God for his many answered prayers.

We are so thankful to everyone who has helped us by sacrificing time and energy to watch the boys, to those who have provided meals and other gifts, and to all who have been praying on our behalf. We know God hears the requests of his people! Evelyn's journey is just beginning and there will be at least one more major heart surgery ahead of her but we take comfort in knowing that God loves our precious girl even more than we do! 

Looking out the window in her hospital room.

"Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

Philippians 4:4-7