Sunday, June 17, 2012

Looking back. Part II

Looking back on Ralph's story has brought some things into focus for me. Firstly, I filtered a lot of the information that I shared back then. I suppose I was concerned about frightening our friends and family. I may add some additional comments in blue...mainly as a reminder for myself. Memories fade quickly, don't they?

Secondly, my husband is really awesome. He was awesome back then and he is awesome still today. His work takes him away from us frequently these days, so it's easy to forget. He wrote many of these updates.

Thirdly, the feeling of complete helplessness, complete heartbreak, and complete surrender is something that I can only appreciate by looking back. When you are in the middle of the storm there is only one way to go, forward. It reminds me of a sister in the Down Syndrome community whose son is fighting Stevens Johnson Syndrome and Toxic Epidermal Necrolysis (SJS and TEN) right now. Please take a moment to pray for little Kai and his family. They are in the middle of the storm at this very moment.

Back to Ralph's story...

May 27
Ralphie has had a great day today.  His ventilator settings have come down to 35% oxygen and he is taking most breaths on his own instead of letting the machine do the work. Room air is 21%, so we are not too far away!

He has an "echo" scheduled for Tuesday to check the condition of his heart and also to check his pulmonary blood pressure. I don't expect the doctors to make any more vent changes until we get the results. He is so alert and bright eyed! Much more so than I have yet seen. He looks as if he wants to coo and make those cute baby sounds, but of course he can't do these things on the ventilator.

The nurse gave Ralphie his first book today, Chicken Little. I was reading to him and showing him the pictures when the other mom in the room snapped a polaroid of Ralphie and I and gave it to me. She said we just looked too cute. Her 2nd little girl is 8 weeks premature and is sharing the ECMO room with Ralphie. **ECMO is a treatment of last resort for patients with sick heart and lungs. The availability of ECMO was the reason Ralph was airlifted to Kansas City.The hospital in Wichita had done all they could do for him.**

He was playing around with a pacifier when I left him this evening. The nurse trimmed it to fit around the vent tube and he really enjoys it! The Children's Mercy Security guards drive me back and forth from the Ronald McDonald house to the hospital. Nursing moms get free meals in the hospital cafeteria. Everyone here is so friendly and helpful. I feel very special.

This morning Ralphie took off the bar that holds his breathing tube in place! He is so awake and active, I think we will have a hard time keeping him happy today. Thankfully the nurse has rigged up a mobile on his bed. Maybe he won't get so bored with something new to look at. Morphine was discontinued this morning and dopamine has been reduced.

May 29
Ralphie is officially 1 month old today. Yesterday went better than I thought it might. He was very relaxed most of the day and didn't get into any trouble. His dopamine has been discontinued as well as the morphine. Today is the day we get an echo of his heart. I am hopeful that the pulmonary pressures are getting better. But, at the same time, I'm fearful that they are not. I'm through trying to guess what will happen so I've been praying and fasting. **Nursing moms are not supposed to fast, but I needed something to "do" for Ralph. I had been pleading and crying out to God since the night he was born.**
More later...

2:48pm - Well, it is a good thing I was with Ralphie this morning. The "echo" machine showed up for the little girl next to Ralphie. I assumed it was for him, but the lady said he wasn't scheduled! I asked the nurse to check, and sure enough, the orders for the echo had mistakenly not been given. We fixed that and the echo was done. Now we just wait all day for the results. He's been alert and active for the past 3 hours. Ralphie is now getting 10cc's of milk every 3 hours! The vent settings are going down! All signs are looking good. He is having a spinal tap done right now. **I felt so guilty about authorizing this test. It was very painful and traumatic for him. The nurse practitioner said that he kicked like a mule.** If there is no sign of infection, his antibiotics will be discontinued soon. Thank you all for the encouraging messages!  I'm glad to be able to communicate with all of you in an unobtrusive way. Keep up the prayers!

6:30pm - We got a call from the doctor. The echo results are back and nothing much has changed. **My broken heart, amazingly enough, broke again at this news.** The right side of his heart is still moderately enlarged and the pressures are still high. We will be starting some different medication and will schedule a meeting with the cardiologist and neonatologist for tomorrow morning.

May 30
It was pouring rain when I got out of bed this morning. Good. I don't think I could stomach a sunny day. **Honestly, I didn't want to get up at all.** I'm going to try to get to the hospital around 8am. We can visit any time but between 7-8am and 7-8pm because of shift change. I hope we get a different nurse today. The gal we had yesterday would disappear on us. We would find her sitting and socializing with friends. I'd like to think she was just giving us some space, but it's hard to leave the nursery with Ralpie all alone in his room. **I could not bear to leave his side unless someone was there. Even then it was hard. The nurses' daily grind was my precious little baby boy. I didn't feel that they were attentive enough.**

2 P.M. - Today's plan is to work on weaning the breathing machine support. Ralphie is getting increasing milk feedings. We get to hold him during his 2pm feeding, even though he is still on the vent! We need to endure the waiting over the next few weeks. I say endurance rather than patience, now. We will just pray and wait. He has been resting most of the day so far. We are trying to keep him from pulling his breathing tube out. He likes to pull on it! He is getting stronger everyday and we need to remember that it is in God's Hands and Timing not ours!

3:50 P.M. - Momma just got to hold and snuggle with him for an hour or so. He looked at her with those bright eyes and then drifted off to sleep. She just put him down a little while ago and now he is sleeping. He does not like that tube in his throat. Look for more updates later. Thank you to all for the continue Prayer and Support. The other kids are great they are spending time with the Robert family and Grandma has them in the evening.


Jill said...

Thanks so much for sharing all of this. I had no idea he was SOO sick!

Elijah's ST just had a baby girl w/ Ds and she is doing really well, but was still in the NICU for a couple of weeks and came home on O2. It really makes me sad to think about what our boys (your other 2 boys) endured when they were first born w/ the lack of care they received. The results were obvious for Theo (and Carrington) but my heart still aches for what the "healthy" boys went through...hope that makes sense. :-(

Stephanie @ Ralphcrew said...


One of the reasons I was hell bent on adopting a child with DS from Ukraine is the knowledge that if Ralph had been born there he would not have survived. Or if he had survived, would I have succumbed to the pressure to abandon him?