Transitioning to Formula

Toby's doctor's appointment went pretty well on Friday. His CT scan we don't know much about except that the initial result in the computer said stable. His fontanels still don't feel right, so we will see the neurosurgeon on Wednesday of this week; hopefully we can find out more. His chest x-ray showed improvement in his lung volumes, which is great because the air in his belly has been much better also, which means his lungs have more room to expand! :) We are beginning to transition Toby from breastmilk to a formula called pregestimil (it's already partially digested, and hopefully easier on his belly), so pray that this goes smoothly and doesn't affect his stomach and digestive process too adversely. The boys arrived home safely, and had a wonderful time at Grandma's. They were so noisy tonight, and I wondered if they were extra noisy or if I had just gotten used to the peace and quiet this week! It is good to have them home; they always seem to grow up so much while they are gone.

Sleeping Too Well!

Toby had a good night, slept really well. Actually I guess he slept too well because they were afraid his shunt was malfunctioning so they did an x-ray and then a CT scan this morning. (one sign of shunt malfunction is unable to waken the baby - sleeping too much). Bruce said his fontanels felt soft, but I guess they just wanted to be safe. We will have the results today. Please pray that nothing prolongs our hospital stay.

The CT scan came back normal; his shunt seems to be working just fine. I begin my 24-hour care tomorrow at 1:30 p.m. until Thursday at the same time. The other two boys are doing well, but the next few days will be hard because mommy won't be around. We've had a few childcare changes because of sickness, and God continues to provide friends to take care of Conor & Garrett. Thursday afternoon we will get some more of our equipment. Bruce will do his 24-hour care Friday to Saturday. Pray that we will be well rested Saturday night and Sunday night as we bring him home on Monday.

Not What We Expected

Today Toby is going to have a CT scan. They also are planning on having Toby on a ventilator while he's sleeping, and on the mist collar when he's awake. They are going to switch him to a home vent. This doesn't mean he's going home, I just think it's one similar to what he would use at home to see how he tolerates it because can be different. After they see how he does with the vent., then they will try bolus feeds again. No results yet from the sleep study, but it seems he is going to need a vent when he sleeps as a result of the apnea. I don't know if he can grow out of this or not; I need to ask, and even then they may not know either. Bruce and I practiced changing out the trach and trach ties today on a dummy. When they switch him over to the home vent they will also begin training us on that. It will probably still be at least 2 more weeks before he can come home (it might take that long to have insurance approve and supply a home ventilator). It's not what we would have wanted, but we're okay with it. God is giving us joy, and we're enjoying our sweet baby boy.

Feeding Tube Change

Feb 1, 2007 4:03pm

Toby had a pretty good night last night, he slept from about 11-7:30 a.m with just a few times when he became restless and needed his pacifier. I was thankful he rested so well, he's been needing some uninterrupted sleep. They're weaning him off of C-PAP today, and he seems to be doing well with it. We continue to wait.

Oh yes, I forgot to mention that his CT scan came back normal, his ventricles were completely collapsed, which means his shunt is working properly. Yeah! :)

Feb 2, 2007 11:11am

Toby had an okay evening with daddy. They ended up having to change his feeding tube because upon x-ray they found his feeding tube was actually in his esophagus, instead of the valve that goes from his stomach to his intestine. They did take him off of C-PAP last night, and he seems to be faring well, he's on 0.5 liters of oxygen now. He only weighs 7 lbs. 2 oz., so he hasn't been growing much, pray he will continue to get stronger and gain weight. The ENT doctors are talking about doing a scope of his throat and vocal cords on Monday; he will probably be in the ICU through the weekend, so they can continue to monitor what he does without the C-PAP. Oh yes, something I hadn't mentioned is that his bladder is working great. He's out-putting the same amount he's in-putting, and when they cath him once a day they're getting less than 5 ml. Yeah! We hope this continues.

Carrie is Discharged

Thank you to Erika for starting it up so friends and family could stay updated. I was discharged from Riverside Hospital yesterday, and I'm feeling pretty good. I was actually able to walk to the elevators today while seeing Toby today, instead of being wheeled up in the wheelchair! :)
Toby is doing great! His back is healing from surgery, and he's drinking bottles and nursing well when I'm there to feed him. He's such a piggy - gained 8 oz. since Saturday! :) He weighed 6 lbs. 2 oz. today.They performed the CT scan of his head this morning, and it only took about 5 minutes. He opened one eye as if to say this is comfortable, and then went back to sleep (He was wrapped in his blanket and had cotton around his head so he wouldn't move during the scan). We don't know the exact results of the scan, but tomorrow morning they are doing surgery to put the shunt in. Surgery is scheduled for about 7:30-8:00 a.m. They will insert a rubber valve (which is the shunt) into the fluid filled part of the brain, and feed it through his neck and body cavity into his stomach. As fluid builds up in the ventricles of the brain, the shunt drains the fluid down the tubing and into the abdomen. The surgery should only take an hour. Please pray for us as it will be a long day at the hospital, and for a quick recovery for Toby.We've been blessed to have my family here visiting and taking care of the house and the boys. Last night Grandma and Grandpa Holt stayed with Toby so we could celebrate a late Christmas. Today the boys left to go to Michigan with my parents, and it's been a little difficult, but we know this is the best place for the them, and for us. My sister Lynsey is staying with us this week to transport me to the hospital when needed and to take care of us. She cleaned the house today, which was a huge blessing. Bruce and I are so thankful to our parents and siblings for taking care of the boys, being with Toby when we couldn't be, and just being there through all of this.God has been so good to us. I just can't even express His goodness. Things have gone much smoother than I could have even imagined, and we are continually encouraged by everyone's prayers and the love poured out on us.