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Friday, July 25, 2008

 

Trach FREE


Ben went in yesterday for his surgery and they removed all the rest of the scar tissue caused by his trach and then early this morning at the hospital Jonathan (under supervision) took his trach out and Ben has been doing great. The hole left by the trach has already begun to close up. They just cover it with gauze and tape and let it heal on its own. We are still in a little bit of shock that this actually happened this time! Life without a trach will be very different! Ben has to work harder to breath and I am sure he is sore but he is just doing so well. He doesn't know how to settle himself down to sleep- he keeps talking to himself (where before we would remove his Talking Valve at nap/bed time and he would just relax and roll over.) Obviously this is very exciting for us. The plan is to bring him home tomorrow morning if all goes well tonight. We will post some pictures soon.

Ty is continuing to do well and we have been slowly upping his feedings. So slow and steady but good. He looks great, a little stronger everyday. His cry is even getting louder and he is alert and very interested in looking around more often. We already love him so much. We cant wait to get him HOME!!!!!!!

Monday, July 21, 2008

 

Some Good News

Today Jeanette Harrison (the Clinical Specialist who worked with Ben at UCD) did a feeding evaluation on Ty and confirmed that he can swallow- but it is weak. His suck is stronger, telling us his desire to eat is stronger than his ability to do so. But the fact that he can swallow is great.

Last night he had two apneic episodes (he stopped breathing and they had to use the bag to give him oxygen) due to the fact he was refluxing some of his feeding and got overwhelmed. That is not so great. We have scheduled an "upper GI study" where they will put the dye in and watch how it goes down his esophagus etc. This will help us understand what kind of feeding tube will be best for him. There are several options we are considering- NG (in his nose) G-tube (like Ben has) GJ tube(one that allows the feedings to go in his stomach or lower in his stomach/intestines.) A lot of unknowns still. But overall he is doing well and the Doctors feel he has really improved a great deal over the week.

Sunday, July 20, 2008

 

My Two Cents

Jonathan did a great job of describing Ty's first day. I just want to add that during this first week of Ty's life I have noticed a few things that could be very significant. While he does have symptoms like Ben, he also seems way ahead of where Ben was at this time. When Ben was born, he required constant suctioning of his mouth to clear his secretions. Ty does not need this, in fact, while we do need to suction his nose for him, he seems to really be able to handle the secretions in his mouth. This does seem to indicate that he can swallow- though it may be very weak. Yesterday, I was with him for 5 hours and did not have to suction him once. He also can cough (protect his airway) and suck on a pacifier , Ben could do neither of those things. These are hopeful signs.

Ty seems to have woken up a little bit - the past two days when I have been with him he has been more alert and has started to have an opinion. He doesn't cry like the other babies in the NICU - his cry is soft and he kind of sounds like a little puppy. He is so sweet. Hopefully we will find out more this week.

Friday, July 18, 2008

 

Our Insurance Company must hate us.


Unfortunately, as we speculated, Ty suffers from the same condition our third son Ben has, namely Hypotonia. Hypotonia is low muscle tone and it particularly affects their ability to swallow. Beth was diagnosed with extra amniotic fluid about 2 weeks before he was born and we knew this was a sign that Ty might also have the same problems as Ben. We quickly switched doctors and hospitals so that Beth would deliver at UC Davis just in case there were any issues. Ben was transported to UC Davis a few days after he was born and spent 6 weeks there. UC Davis has an excellent Neonatal Intensive Care Unit (NICU) and we were already familiar with it.

After an hour of Beth pushing, it was discovered that Ty was posterior (face up) and was not advancing down the birth canal. Beth opted to have him by C-section. Once they pulled Ty from Beth’s stomach, they took him just outside the operating room where the nurses began to clean him up. I waited to hear the loud cry which I would take as a signal that everything was okay. It never came. About an hour later, Ty was in the NICU and the doctor gave me the bad news - Ty couldn’t swallow.


Ty has been in the NICU for 5 days now and things are going pretty well. Given that two brothers have the exact same problem, they suspect that the cause is genetic. Ty is doing well, but requires frequent nasal suctioning to maintain his oxygen saturation. He has a bit of Jaundice too.

He seems quite a bit better off than Ben was and the doctors are taking it slow. They will start the genetic testing and hopefully a long overdue muscle biopsy next week from Ben will provide some new answers. For now, we just have to wait and see how he progresses.


Sunday, July 13, 2008

 

Ty Walburger

Well, #5 has arrived. It took a bit to get him here but it was all worth it. Ty Andrew Walburger was born at 11:20 pm on July 13th. He came in to this world weighing 9lbs 4 oz. He was 21 inches long and has brown hair. His eye color seems to be a grey color, but that could change. Here are some great pictures of him.



Wednesday, July 2, 2008

 

Not just for recycling

I was cleaning "art supplies" off the table today, about to throw a pile into the recycling and realized that in my hand was a stack almost an inch think of drawings- beautiful ladies in all different scenarios- some with long hair and bangs that covered one eye- some with beautiful landscapes in the background- some that had mermaid bodies- some that had very fancy shoes or outfits.... I also found some with interesting creatures that had legs and arms hanging out of their mouths- some that had dragons with big spikes running down the back-I found colorful snakes and scary sea creatures- I found stories written and scenes from a Wii game drawn out. And I thought about Scott and Natalie giggling together last night as they sat together at the table showing eachother each page and quickly moving to draw another. I thought of the pictures they must have in their minds that they were trying to get on paper and how their imaginations run. I love hearing them talk their play out loud ("Natalie this is a guy who is going to come eat your mermaid" " No Scott! The mermaid is going to swim over to this ocean where these sea creatures will protect her....") I am so glad two of my very favorite people are such good friends....