Toby continues to have wet diapers!! :) Overall we're cathing lower volumes, so this is a good pattern too. We have to continue to cath as they're telling us that 20-50 ml is a good amount, and that's what we're finally getting...before it's been a range between 40-120 ml. Please pray that he will continue to have wet diapers and be able to empty his own bladder, so we can cath. him less and less. We probably won't know for sure if we can change the frequency of his cathing until we go to clinic on January 26th. Grandma Fabian goes home today, so we will see how we do on our own this weekend. Thankfully, Grandma Holt comes on Monday, so we won't completely fly solo for another week!
Friday, January 12, 2007
Wednesday, January 10, 2007
Boys are Home and Toby's Peeing!
Today, Toby's big brothers arrived back home after spending time with Grandma and Grandpa Fabian in Michigan. Grandma is going to stay with us and help us adjust to having a new baby. Conor held Toby for the first time and just loves his little brother. Toby continues to do well. Tomorrow we will find out how much he weighs.
Toby had 3 wet diapers today!! He has not been able to wet on his own since birth. We are not exactly sure if this means anything, yet, we are trying to wait it out and see, but it is also very encouraging. I never thought I would be so excited about a wet diaper! :) So many are praying that his bladder function would return, and we are praying this also. There are a few new photos to see.
Our nights have not been too bad; we are getting some sleep. Bruce and I have a pretty good system going; He gets up to cath, goes back to bed, and then I feed Toby. Having Grandma here to get up with the other 2 boys in the morning is a blessing also. We're enjoying our time together.
Saturday, January 6, 2007
Little Sleep
We're adjusting to being home with Toby. He's really a very good baby and doesn't cry unless he's hungry or uncomfortable. The biggest challenges of the last few days have been making sure we catheterize him properly, keeping him awake enough to eat, and caring for his incisions, etc. We're also trying to function without sleep. Toby likes to be held while he's sleeping in the middle of the night, so that makes it difficult for us to sleep. Thankfully the doctor said we could try cathing every 4 hours at night and every 3 hours during the day, so hopefully this will allow us to get some more rest. Bruce and I both miss Conor and Garrett. They'll be home on Monday. It's very quiet around here without them. I'm trying to appreciate that, but I think we're ready to have our family all back together again. Thankfully we do have help these next 2 weeks, so I won't be completely on my own yet. Pray that we have wisdom differentiating between normal baby behaviors and behaviors that would tell us his shunt is malfunctioning. This is one thing that has been stressful for us. Thank you for continuing to lift us up.
Thursday, January 4, 2007
A Difficult Day
It's been a difficult day for me emotionally. They told us we would be going home, and the day just dragged on and on, until finally they released us at 6:00 p.m. We're also having to catheterize him more than we expected, about every 3 hours. The nerves to Toby's bladder are damaged from the Spina Bifida, therefore affecting the muscle, so his bladder gets unusually large. To keep it from being enlarged, we have to catheterize him every 3 hours. Even then, we're getting large amounts, and I just wonder how we're ever going to get any sleep. He has several doctor's appointments already scheduled also, and that is overwhelming also. I wonder how I will be able to handle these new challenges and still be there for the other two boys. God has been continually asking me today if I will trust him. I know He is in control, and will continue to hold us in His arms. We choose to continue to trust HIM for HE has a perfect plan.
Wednesday, January 3, 2007
Hearing Test and Learning to Cath
Today was a good day. Toby slept a lot, and had some difficulty waking up to eat, but as the day went on he improved and ate well. He failed his hearing test today, but the audiologist said that this is not uncommon in babies with mylomeningocele (spina bifida). We will just have to re-schedule another appointment in 6 weeks to have it re-tested.
Bruce and I took turns practicing performing the catheterization process. We found it isn't as intimidating as we once thought. It takes some time, about 15 minutes, since it's important for the bladder to be completely emptied. This has been good practice as they think he will be going home tomorrow! We added a few new photos today, so be sure to check them out. Good night.
Tuesday, January 2, 2007
Shunt Surgery
Toby is in recovery, and the surgery went very well. The have taken the breathing tube out, but they're trying to get his body temperature back to normal. The nurse said this is very common. The neurosurgeon said that he could be eating by tonight. He still has to have other tests before he is released, and Bruce and I need to be trained to catheterize him. Urodynamic testing on the bladder and a renal ultrasound will be performed to see how his bladder and bowels are functioning. We're hoping that Toby will go home some time at the end of the week or weekend. This is much earlier than we had hoped for, however we will take it one day at a time and see what happens. God has blessed us, and we continue to praise Him for the blessings on us and Toby.
Monday, January 1, 2007
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.
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