I have always been drawn to this precious baby, Maia. I think partly because she has always reminded me of Daylia (the picture on top is Maia and the one on the right is a photo of Daylia when she was 6 months old), with her big brown eyes, long eyelashes and such sweet cheeks. Maia is beautiful and we are so saddened by her passing.
I remember the day Maia was born. I saw her parents, Shannon and Elias came into visit her for the first time and I thought there is no way that woman just gave birth. Shannon is as beautiful as her daughter. I remember the first time I spoke with Elias in the waiting room. The usual greetings, "Hi, My son has HLHS. How is your little girl?" After a conversation about Maia and how she was handling HLHS so far Elias asked the question I began to dread, "How old is your baby?" "8 weeks," I had to tell him. We were just beginning the period of time where I had to explain that Josiah's HLHS was a little more complicated than the average HLHS and not to worry their stay hopefully wouldn't be as long.
I remember the day Maia had her first surgery and we were all sitting in the waiting room when Dr. Bradley came in to tell them how Maia had done. They didn't get the news that they wanted to hear. We were sitting on the opposite side of the waiting room and I just couldn't shake the Holy Spirit from telling me to go pray with their family who was waiting. I don't do that, but I really felt God telling me to move. So I prayed for their precious Maia in tears because I knew how badly they were hurting.
I remember watching Elias with his notebook and pen sitting beside Maia's bed writing down EVERYTHING the nurses and doctors were telling him. I asked him one day what he was reading at her bedside. It was a TEXTBOOK about HLHS! Shannon and Elias are amazing parents. They wanted to know everything there was to know about Maia's condition.
I remember the day they moved to 7C. I was so excited for them and grateful that Maia had bounced back so well from her surgery. I loved seeing Maia act like such a "normal" baby. It gave me such hope. They went home shortly after that but we got to see them every once and a while when they came for check-ups.
I remember the day they got readmitted because Maia was ready for her Glenn. I have to say I might have been a little happy they were back (not for Maia's sake but because I missed them). It's lonely in the PCICU sometimes. Maia did great through this surgery and then the drainage started. Oh the drainage that so many heart babies struggle with. That's when Shannon and I really started spending a lot of time together. Sitting in their penthouse sweet on 7C eating lunch while I was kicked out of the PCICU researching MILK. All kinds of milk! Skimmed breast milk, skimmed cows milk, skimmed goats milk. We just wanted desperately to find something that would help our babies heal. The countless hours that Shannon pumped and skimmed breast milk in 15cc tubes amazed me. She was a champion for her daughter. I remember the night at 1am that Milo and Elias planned their covert operation to sneak the centrifuge we were using out of the PCICU and onto 7C so they could use it. No one in either unit batted an eye as these two walked around with a huge piece of equipment. Sometimes when doctors say no because of policy parents have to take matters into their own hands for their babies sake. It's better to ask for forgiveness than permission sometimes!
I remember the signs Shannon had ready to post on Maia's door. "Please don't wake for vitals" ,"Pumping", "Don't come in I'll do it myself (I think I made that one up)." Maia was just precious every time I would come visit. Her spirit amazed me in spite of the nagging chest tubes.
I remember the first time Elias showed me his graph of Maia's daily chest tube output. It was because he and Shannon were such amazing advocates for their daughter that they got to take her home with chest tubes in place. I don't think Dr. Bradley has ever done that before and it is a testimony of what wonderful parents Shannon and Elias are.
I remember seeing them walk back into the hospital on the evening of Christmas Day. They were just so grateful to have had the opportunity to have Maia home for Christmas. Even though they were in and out of the hospital during the next few months I know they had some precious time with Maia at home that they will never forget.
I remember when Maia had to have her 3rd open heart surgery in March. This one was unexpected and began the very long and difficult journey Maia and her parents have been on for the past 3 months. We have been so worried about Maia and prayed for her and her family everyday. The Deebs have never been far from our hearts and mind. There are many reasons we are grateful for the journey we have been on with Josiah and one of them is the Deebs. We are so grateful for our paths crossing. We share a bond that will keep our hearts close forever. We are grieving with them this week as their precious Maia has gone to heaven. We are all to familiar with their pain and can't express the sorrow we feel for their great loss. We love this family dearly. May God's peace surround them.