I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Tuesday, March 10, 2015

Children of God

Maelee didn't get to the NICU until pretty late into the evening. After the drama of getting her hooked up to IV's and machines and nestling her into an incubator the nurse on shift recommended that we go home and come back the next day. I hadn't been home since I checked in for delivery and was at the height of exhaustion. We never planned on leaving the hospital without our baby though and didn't feel good about it. We didn't have our room in the hospital anymore so my husband and I figured our only choice was to go home.



As we walked further away from her the feelings of fear and desperation became stronger. In the elevator we were alone and Frank said a prayer that she would be OK and protected until we got back to her in a few hours.

When he finished praying and as we walked to the car close to midnight our fear was replaced with a very specific assurance. The impression came to our mind that even though our daughter was tiny and new her spirit was mighty and strong. We knew she would be OK, not because we were protecting her, but because Heavenly Father had created our daughter and knew what she was capable of and would help her to do it.

We showered at home and tried to sleep but decided to go back as the sun rose and we would not leave again until she came home with us. We figured we could take turns sitting by her and there had to be a couch or a bench or something somewhere that the other could rest on in the hospital and we would do that until we were forced not to, or she got to come home.

We were able to get a family NICU nesting room with a bed in it to take turns sleeping in. They had a pre-designated room for mother's who wanted to pump while their babies couldn't nurse. It was a huge blessing to get to stay with her in those first few days of her life and not have to just visit her.

As Frank and I sat by her we were amongst several other babies all nestled into their necessary machines and incubators. We quickly realized that Maelee was likely the best off health wise among all the babies we were sitting by.

The feeling in the NICU was one of tangible reverence. The nurses there walked among these babies helping them and responding to all their needs literally like angels. One night, the 4th of July I had an extra special night with Maelee.

The new nurse came on shift, and saw me sitting by Maelee reading to her. I wanted to hold her but since I couldn't I figured if I read to her at least she would be hearing something besides beeping machines. The nurse watched me for a while then took action. She noticed my ankles were swelling and brought me something to rest my feet on. She found me a rocking chair and brought it right in next to Maelee's crib. She asked if I wanted to hold her then carefully got Maelee out without messing up the cords and placed her carefully in my arms. It was so incredibly kind I was overwhelmed.

So I got to sit there in that very special room with all of these spectacular little babies surrounding me and I got to hold my own. The Spirit was strong and it is a night and nurse I will never forget as I was surrounded by these children of God.
Posted by at

1 comment:

Subscribe to: Post Comments (Atom)