8:30 A.M. - A couple of things from last night... Ralphie got a bath last night and believe me he needed it. He enjoyed the washing. He only got a sponge bath but boy did he like that. **Did I ever tell you about the poor nurse who gave Ralph his first bath? Some frazzled and emotionally beat mommy nearly strangled her!** I then got to hold him and I read "Morris Goes To School" to him. He just looked at me and the book as I read to him. When I finished the book he snuggled up and went to sleep. I called the nurse this morning at 5 and she said he was awake and has been awake since 11P.M., we will have to correct that before he comes home. Awake during the day asleep at night. More later.....
12:30 P.M. - Great news! Ralphie will be extubated before his 2pm feeding today. God willing, he will not need to go back on the breathing tube. We were able to meet with the cardiologist today and the news is promising. Our plan is to slowly discontinue many of his IV medications and the nitric oxide gas over the next month or so. He said that Ralphie would probably go home on some oral medication and maybe oxygen. This is big. No one else has ever brought up the subject of going home. His pulmonary pressures are still high, but not imminently life threatening. There is a chance that they will improve over the next 4 years as he grows. There is a chance that they won't. There is no way to predict what may happen. Praise God.
4:00 P.M. - His tube is out and he is off the vent. We are not sure how long this will be he may have to go back on the vent if his stats don't stay up. His stats dropped quite abit while they were taking it out. He was mad and very upset. They did get him calmed down and his stats back up. **This must have been the worst, most horrible, successful extubation EVER! Ralph's sats were dropping, people were yelling and screaming at each other. Chaos, disorganization, running around looking for equipment...my baby turning purple. I nearly passed out. **
He is now in a tent. They will monitor him like this for awhile then decide what to do. Pray that they will only put a cannula in his nose and keep him in the tent. The next few hours are pretty important to see how his stats do. He is resting well now and we hope he sleeps the rest of the day. He was up almost 12 hours today. I will post some more pictures tonight when Steph and I get back to the RMH and I can download the pictures off my phone. Praise God for the distance we have come and the long road ahead.
Wow, another month has come and gone. Ralphie had a good night last night. After a difficult extubation yesterday, his blood gases continue to improve and he is breathing deep and easy. All good signs. Perhaps we will move out of the ECMO room soon.Maybe to a room with a window. James goes back to Wichita today. Thomas and Jordan have their first baseball games tonight. Thomas has been talking about it for the past 3 months! I'll be staying here in Kansas City for the duration. 11:30am - We just made the switch from the oxygen hood to a nasal cannula. It went very smooth. I wish I could get some pictures of his unobstructed face, but James left and I don't have a camera. If his blood gases stay good we can start oral feedings. The nurse asked me if I want to nurse Ralphie or bottle feed him. It is so nice to be asked instead of told. It almost feels like he belongs to me. **It is difficult for an experienced mother to have a child in the hospital. When you are used to running the show, this experience can be very humiliating.**
9:30pm - What a big day. Ralph is wearing a sleeper tonight. I never thought that his first time wearing clothes would be a big deal, but it is. He attempted to nurse for the first time today as well. He really did great! James is driving up tomorrow with the kids and his mom. He just can't bear to be away from the baby! I make sure he gets some more pictures tomorrow.
10pm - Ralphie got to visit with his Grandma, his Daddy, Wesley, Chipper, Thomas, Jordan, Rose, and Leroy today. Five of the Terpstras stopped by while they were in town as well. The baby had a good day. Lord willing, he is done with all of his IV medications. His oxygen has been weaned down to 50%. However, he is not sleeping well and his breathing was more labored tonight. Maybe he is just worn out. Please pray for rest and healing for Ralphie.
Ralphie got his own room today. We are in that nice room across the hall with the window that faces West. He looks different in the sunlight. A bit too pale for my taste. Incidentally, he has never seen sunlight until today. We have gone down to 32% oxygen and 13 parts per million nitric oxide. He seems to be tolerating this very well. Grandma Connie visited again today. Some of the kids were coughing last night, so they didn't go into the nursery today. I'm glad that James brought everyone up for a short visit. I know that it is hard for him to leave Ralphie and me here. Thank you all for the "love notes." I really enjoy hearing from all of you.
This morning I arrived to find Ralphie sleeping on his tummy with an oxygen mask on his behind! He has been suffering from a diaper rash for a few days now. His sweet nurse left his diaper off and was hoping that some extra oxygen would help it heal. It's too bad that daddy isn't here to get a picture! Ralphie's cardiac echo this morning was not conclusive. The doctor was not able to measure the pulmonary pressures with certainty. I believe he will have another test as soon as he is fully weaned off of the nitric oxide. This should be in the next couple of days.
I arrived to find Ralphie in a big boy crib this morning! He has a musical mobile to look at and room to stretch out. Ralphie's NO is down to 4ppm today. It will be off before tomorrow morning's cardiac echo. His oxygen is at 27%. We are getting very close! He looks great. He is starting to make those cute baby sounds and is smiling. The diaper rash is improving. The nurse practitioner has even mentioned going home sometime next week. From her lips to God's ear!!
Now that we are past the stage of a life-threatening case of meconium aspiration and pulmonary hypertension, we would like you to all know that God has seen fit to bless our family with a baby with Down Syndrome. You may wonder why we waited so long to share this. We are not in any way ashamed of our Ralphie or devastated by his chromosome disorder. We simply wanted to focus on the matter at hand, his survival. We wanted our friends and family to have the same focus. We refuse to put Ralphie under the burden of a label. God only knows what he will accomplish. We are as fortunate to have him in our family as he is to have friends and family like ours!
With that said, Ralphie looks great today! Very pink and happy, just like a new baby should look. I asked the nurse to fix the tape that holds his central line in place. It made the cadiac echo difficult the other day. I didn't want anything to interfere with today's test. It is almost 1pm and I am now waiting on the results. I am cautiously optimistic that the pressures are down. Ralphie is only on 25% oxygen now and the NO has been turned off. His sats are great, even when he is nursing, being changed or held. I'll update as soon as I get more information...
4:00pm - Great news! Ralphie's pulmonary pressures are down. We can now think of homecoming. He will start taking a bottle tonight and he will be able to come home when he is taking about half of his feedings by mouth. Some babies have a difficult time feeding after being on a ventilator, so please pray that we will be successful. Some of you have asked about how I am truly holding up. I have virtually no responsibilities here, other than feeding the baby. I don't cook, clean, or care for any other children. You should be asking how James is holding up. He has been doing my job plus his job for over a month now. He has shielded me from the world when I needed it. He is a very special person and I am so thankful for him.
**Can you imagine how much crap I took for waiting to announce that Ralph has Down Syndrome? It was brutal. My midwife told me her suspicions immediately after he was born. We knew it was true, but it just seemed to be so insignificant compared to his other challenges. James and I NEVER focused on DS to begin with and we didn't want our friends and family to be distracted by it. If we had it to do all over again, right or wrong, I don't believe we would do it differently.**
Wednesday, June 20, 2012