It was an interesting day today. We made some contacts and some decisions. With how well Delaney has been doing we feel we need to be looking at a different kind of assistance. After speaking with our pediatrician, we will be contacting Beaumont Home Care Sevices. We need the kind of support that respects what we are seeing as parents. In turn, giving the kind of care that responds to her development and growth. We have felt a little abandoned since leaving the hospital and the current nursing care has been relatively sporadic and more reactive, more about "us" than Delaney. What we've been receiving is just basic maintenanc and I REFUSE to allow her to stagnate.
I was especially motivated to look into different home care after a phone call to the Nurse Practitioner. We had called because we were concerned about Delaney (still) spitting up at feedings. Her recommendation was to switch from breast milk to Pedialite for 24 hours. Granted, if we were experiencing other digestive issues and dehydration that might have been an option, but we aren't and with Delaney's growth and development being what it is...we see evidence of it daily.
In short, I...was...pissed! I immediately contacted our pediatrician and asked for advice on how to handle the feedings. She got us in touch with a nurse on staff and calculated exactly how much breastmilk she should be getting every 24 hours and then calculated how to manage a continuous feed using the infuser. Further in order to boost her calories and keep the volume down she recommended that we order Human Milk Fortifier. Not something that I had ever heard of, but it is often used with premie babies. It's expensive, about a dollar per unit, but it's what she needs right now and really we can't put a price on that.
On another note, I also had a very encouraging phone call from my old friend Wade (I just learned that he's a Neurologist at UofM). After a great conversation, he validated so much of what I feel and see in Delaney. He gave us a good direction to go and will soon be in contact with a colleague of his who specializes in pediatrics. I'm so excited! We talked a lot about what we were told at Children's Hospital regarding the brain trauma. What has been bugging me the whole time is that the research that they cited was from premies and neonates that experienced oxygen deprivation at birth. Delaney experienced three glorious weeks of brain development, that is a huge difference in and of itself. Further, and not to be too presumptuous, we don't know what kind of home environment those babies had, or what kind of support those families had access too. Too many variables, and too few case studies (not more than 250-300 children). And as I said before maybe Delaney is the 301st baby they didn't see. Tenacious D, in the house!
In closing, Lindsay and I were well taken care of today. Kelli and Greg were here and took care of much needed chores around the house, ran errands, and just brought good warm vibes to our home. Our good friend Caroline made it possible for a massage for each of us right here at home (It helped so much). Our other friend Cece (aka Earth Angel) made it possible to have Delaney's feet and hands imprinted in ceramic tiles. We can't wait to see the result, it will be as precious as she is!
God Bless,
B & L & d
praying for your family and beautiful little girl. So glad that you have a wonderful support system in place to help.
ReplyDeleteWe had a son with a near drowning when he was 8 years old. He suffered and a acquired brain injury also global because they had to do CPR for 20 minutes or more before they would intibate him at the hospital.
ReplyDeleteWe were given no hope and we had to keep checking into different things. We even did hyperbaric treatment which we believe helped him with mobility.
He is now 21 and is very alert young man. He understands very well. He laughs and has a great sense of humor and gets sad at appropriate times. He is non verbal and is in a wheelchair. He communicates with sounds and gaze. He is able to read and spell using a computer with a special switch. He can walk with support. We continue to take him to Physo and Occupational Theraphy twice a week.
When he was in rehab for a year the nurses said they found the kids that did showed great improvement were those whose families we greatly involved and there all the time.
The doctors told us after a 5 year window he wouldn't improve any more which isn't true. We have a great neurologist that said he will still continue to improve and believes there is so much inside of our son that is trapped. He feels he is very intelligent. We have 2 older son's that are just great with their brother. Keep the faith and keep the hope. Delaney is so young and her brain so flexible I believe she will improve over time.