Home at Last
I arrived at the hospital carseat in hand. During our stay, I had seen so many parents come into the Neonatal Intensive Care Unit (NICU) with their carseats ready to take their babies home. I remember asking the dad of triplets that went home at separate times “How are you going to do this?” He laughed and shrugged. Another mom arrived with the carseat only to discover her baby could not go home yet after all. That was crushing for everyone in the NICU. Her baby did go home a few days later healthy and strong and everyone applauded. I completely connected with those parents but never saw them again after they walked out with their shiny carseats.
Today was our turn. It had been 11 weeks and 2 days since Maggie was born and she was finally coming home. I was ready. Ready to have her home, ready to stop spending days at the hospital learning so many things I did not want to know. I was ready to have my entire family under one roof, ready to stop pretending to my three and 5 year old sons that everything was ok. I would not have to pretend when she was home. It would all be fine. I knew all about the gastrostomy feedings and the colostomy. We could give her oxygen at home just as well as they could do it at the hospital. I was scared, but I was ready.
It took hours for everything to come together so we could go home. It always does, but that wait was interminable. I needed to have my little girl home. I needed to be mom, I needed to be in charge, not to rely on nurses or wait for doctors anymore. The time dragged while we waited for all the necessary pieces to come together. I had to demonstrate that I could do the procedures Maggie needed. All the specialists had instructions and follow up appointments to confirm. There were well wishes and celebration too. Finally, the hospital had to ensure that we had all the supplies we needed to care for Maggie at home. Colostomy bags? Check. Feeding tubes? Check Syringes? Diapers? Check. Oxygen? Oxygen tubes? On the way.
Oxygen, life sustaining though it may be, was almost my undoing. The oxygen guy showed up at the hospital and started loading “e-tanks” next to all my stuff. There were at least six of them. I was supposed to move these tanks along with all Maggie and all of her supplies and her shiny car seat.
My resolve failed. This was more than I could do. I could not even get her home. How in the world could I take care of her?
I stared at those tanks knowing I was a fraud. The nurse saw my stricken face and asked what the problem was. I fought back tears, pointed to the six heavy tanks, and said I cannot move all of those. Without hesitation, she barked at the oxygen guy saying, “You cannot leave this stuff here, take it to the patient’s house.” She was the type of woman you do not trifle with. He sighed and loaded the tanks back onto the dolly.
I looked at the nurse and gave her a wan smile. This was a house of cards and we both knew it. We just had to get home before a large wind came and knocked out house down.
That was 18 years ago and oxygen tanks, still part of our life, do not scare me anymore The house of cards still stands.