Medically Complex and the Stories of Our Lives

My biggest fear in the NICU was that Rhyse would not be able to properly bond with me as his mom.  Many of the spilled tears were because of this anxiety that wouldn't go away.  I had heard and read of so many children who were permanently defunct in some ways because of the loss of bonding time with a mother.  I am also an adoptive mother: I know first-hand what happens to a child who has never been able to bond to their biological, God-given parent and have to transfer that powerful need to another. Though I will always advocate for adoption, there are intrinsic issues with bonding that plague both adoptees and adoptive parents for life.  And I didn't want my son to deal with those pains because of NICU time.  Maybe this was irrational, but it was an emormous burden at the time.  And one more anxiety that threatened to overtake me. If it were not for the Lord and the constant reminding through his Word that he must cast our cares on Him and receive his Peace, I don'

When I walked into my house I always went straight into my room, dropped to the floor and sobbed and sobbed.  My daughter Maggey would always  come in and ask, "are you going cry again tonight?"  I would always say, "yes."  I love Rhyse just as much as I love you and I miss him.  She would tell me she would "be there" for me, whatever I needed. Rhyse's crib is in my room.  I think that made my heart bleed all the more.  I got to the point I could not look at the empty crib at the end of my bed anymore.  It just tore me up inside. While Rhyse was in the NICU he had two bone aspirations and two heart ultrasounds.  The heart ultrasounds did show two ASDs and cardiomyopathy.  But the heart defects were minor and merely needed to be monitored.  It was the bone aspirations that were critical in their findings.  By the second bone aspiration the doctors determined Leukemia was looking less likely and Noonans more likely as the answer.  Al

With postpartum hormones flailing about wildly I couldn't contain my emotions.  I was a weepy mess.   I planted myself in Rhyse's room. I told the nurses I wasn't leaving.  I would spend the first night with Rhyse--no matter what.  How could I not?  Although time with baby is highly encouraged in the NICU, sleepovers not so much.  I could tell the nurses were not happy with my decision: "moms need their sleep, too" they said.  And I said, "I just had my son yesterday, I cannot abandon him. "    Strangers.  That is how I saw the multitudes of nurses that came and went and poked and prodded and crammed ng tubes into his nose and IV's into his small, frail body. The first couple of days are marked on my mind forever.  My little 5 pound, 4 ounce baby was instantly coined, "Mystery Man" by the specialists and other doctors.  At first the doctors administered a couple bolus's of IVIGs, thinking his blood type was simply coll

Within a very short amount of time my husband, Jon, arrived.  We clung to each other for support.  We  have been through a few other intense circumstances in life together, and we were rooted deeper because of it. But this was every parents nightmare: something was wrong with our baby and we had no idea what the future held.  This was more traumatic than anything we had ever encountered.  At less than 12 hours old Rhyse had already been moved to the "special babies" part of the nursery and hooked up to those soon to be all--too--familiar monitors.  I could no longer hold him freely.   By 8 am Rhyse was transported by EMS to Devos Children's Hospital, and I was discharged.  I could barely walk without intense pain, and I couldn't stand  up straight at all.   Jon and I drove in silence to Devos:my mind didn't know what to focus on.  I had already cried my eyes dry, how much more could I cry.   As we pulled in the parking ramp my husband ver

By late afternoon it was obvious Rhyse wasn't going to feed.  Not terribly concerned the nurses informed me that babies are born with all the extra fluid in their cells to keep them hydrated in the first few days of life.  If he went 24 hours without feeding, he would be ok.  But that wasn't OK with me. I knew that a baby's natural inclination to feed was immediate.  Not 24 hours later, unless something was amiss. Exhausted and whirling from the birth and the high of delivering another baby (one of those, "over 40 surprise babies") I was so incredibly excited to add a boy to my petite passel of two girls, Leah who was 8 and adopted from Kenya and Maggey who had just turned 5.   By evening a few family members had come and gone, husband went home to be with our girls, and I was left alone with Rhyse, ready to sleep--or at least make a valiant attempt.  My husband and I had filled out our, "celebration lunch" form for the next day courte