During my whole pregnancy everyone kept saying that they couldn't believe how strong Rex and I are and how they didn't understand how we could continue to smile. I have to agree, it surprised me too, but our strength came from trusting in the Lord, your support along the way, and seeing the strength and fighting spirit of our little girl. Even when she was experiencing respiratory failure and the doctors didn't know if she would make it, we could just tell by looking at her beautiful face that she was going to be just fine.
Before we left neurologist and neonatologist warned us that she may have developmental delays from her time spent on ECMO/the ventilator and the fact she was three weeks early. While she was on ECMO and the vent she was sedated and stuck laying on her back all day everyday, which will stunt development. At 6 weeks old they said to think of her as a 2 week old. It worries me a little that she may be delayed, but she's perfect regardless. They also said that CDH babies are notorious for being small and that that is okay. Dr. Kays said he likes his babies lean because when you are lean your lungs don't have to work as hard. This is a relief because when we left the hospital Makenna was only 7lbs 6oz, placing her in the 2nd percentile for weight. As long as she continues to follow her own weight curve and stays on or above the 2nd percentile they are happy!
When it was finally time to leave the hospital it was such a weird feeling! We were happy and excited, but also nervous. She spent the first 6 weeks of her life in a wonderful and safe little bubble. She had monitors to ensure her health and a nurse caring for her around the clock. I couldn't help but wonder if we were ready for this! I'm sure all parents feel this way to some degree when they leave the hospital, but when you are finally able to walk out the doors with your once critically ill baby, it is amplified times 100. As we carried her and wheeled her oxygen out of the building I couldn't help but see everything and everyone as a germ ready to attack and infect my daughter.
Once we brought her back to the apartment where we were staying, the first thing I did was jump in bed and lay down with her on my chest. After four weeks of not being allow to hold her and 2 weeks sitting in an uncomfortable wooden rocking chair, it was such an amazing feeling to lay down and snuggle my miracle for the first time.
The next day we packed up the car and after 44 days in Gainesville it was time to head home. We drove for 6 hours, stopping twice to feed her and switch out her portable oxygen, but made really great time. Makenna was a wonderful traveler and slept almost the entire time!
As we approached our house it was so surreal. I remembered pulling out of the drive way 6 weeks earlier scared, excited, and unsure what the future would hold. I remembered being afraid because I didn't know if this moment of bring her home would ever happen...but there we were pulling into the drive way with our wonderful baby girl as if the last 6 weeks never happened!
We did it. We actual did it!
As soon as we walked in the door I immediately took her to her room and placed her in her crib. I remembered how bittersweet it was building a crib for our baby when we didn't know for sure she'd ever get to use it. As she lay in her crib Rex and I just stared at her in awe. She is so strong and amazing. We couldn't help but look at her and wonder how we got so lucky. God knew exactly what he was doing when we gave us our miracle. He knew we could handle this journey and as difficult as the last 10 months were, I wouldn't change a thing. I am so glad this special little girl was chosen for us. She is perfect in every way and words truly can't describe the love and admiration I have for my daughter. She has become my world. I know she was sent here and saved because God has a special plan for her. I can't wait to see all the great things she will do and what kind of person she will grow to become.
Since we came home during flu and RSV season it is important that we keep her healthy. She has spent all of her time staying home away from germs. Other that weekly doctors appointments to measure her head circumference (ECMO can cause water on the brain), she has only left the house twice. Even still it has been fun watching her really begin to experience the things we take for granted, such as seeing the sun or feeling cold wind.
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