Going Home!

We were finally given a date for our little man to come home - Friday, March 3rd!!! When we told the girls they jumped up and down and screamed. As the days got closer, our girls would ask about him daily. Every night when we put Addilyn to bed and when she wakes us up in the morning she would ask “Is Ezekiel coming home after my nap time?” Our girls were so ready to have him home and are just so full of love. One time after dinner, David asked Addilyn if she is excited to have Ezekiel come home and her reply melted our hearts. She said, “yes! And then you and mommy won’t be sad anymore?”.

Mixing Formula Training

Infant CPR Class

The last week in the hospital was filled with training and preparing for taking a dialysis patient home. We had three sessions of training on the peritoneal dialysis machine; teaching on mixing the breastmilk formula and how to give medications… Plus, David (and the rest of my family) even took an Infant CPR class. 

As the week went on... it was getting more real, Ezekiel was going to finally come home!!!  In the midst of our excitement, the anxiety swooped in… we have to get the house ready for him and we haven’t even started!!! We have to set up his crib in our room, we have to clean the carpets, we have to have a place for his machine and all the supplies, and so much more... So we got to work and spend the day cleaning. We vacuumed, cleaned the carpets and dusted everything. Addilyn and Eleanor even helped us wipe down our walls and windows. It felt so good to clean, especially for our little guy. 

Friday finally came; it seemed like it would never come. This was day 31 in the NICU for Ezekiel. Driving to the hospital everyday was exhausting; leaving the girls everyday caused minor separation anxiety and just the everyday stress from the whirlwind of life was wearing on all of us. But the day finally came and I believe Addilyn captures our excitement when she jumped up and down on the morning of, saying, “Baby Ezekiel is coming home!!!”

I will never forget March 3, 2017 -it was the day we could stop driving back and forth to the hospital, it was the day we could stop crying ourselves to sleep at night, it was the day we got to finally be a family of five and our son, Ezekiel Joseph Bell, got to come home!

Of course, when we arrived to the hospital we had a minor bump in the road with dealing with insurance, but everything else went as planned. Many of my nurse friends stopped in to say goodbye to us (even though we all know they were just there to snuggle Ezekiel one last time 😉 ). 

I can not express how thankful we are to all his nurses, APNs and Doctors who took care of Ezekiel. There are not words to describe how much they all mean to us, or enough cookies in the world to thank you all.  I hope no one reading this has to know how extremely difficult it is to have to leave your child at the hospital and go home.  But being a part of the NICU family made it easier and gave me some peace, knowing my friends were there taking excellent care of him, snuggling him, and singing to him when I couldn’t. Thank you NICU Nurses, you do amazing work!!!

Being a NICU nurse myself, it was extremely hard to be in the opposite shoes. What is most difficult is that I know way to much of what could possibly happen in all situations, especially with 2 major surgeries in his first 5 days of life, dialysis and looking into the future with a kidney transplant.  

Emotionally I was a wreck inside from day one of finding out (at 20 weeks pregnant) we were going to loose. However, there was hope at 24 weeks... Hope we clung to the entire pregnancy and still cling to today. I could not have gotten through this without all of his nurses, my friends, my family, my husband,  and especially God. I know God has a plan for our little boy and we are watching it unfold now.  God has already humbled both David and I by realizing we can’t do this on our own. Watching people clean, cook, and care for our girls for us during this last month was very hard.  You can ask anyone, I’m not one to seek out help, I like to be the one helping.  But we are so grateful for all the love and support everyone has shown us and continues to show us everyday.  Thank you all for your prayers and please keep them coming!  

We ask for continued prayers on the following 
     1. That dialysis would continue to go well,
     2. Steady weight gain,
     3. We can adjust to the new rhythm