Monday, October 31, 2011

Day Three - Trouble Breathing

This entry was originally written on October 16th, 3 days after Noah was born. We still didnt have any answers about his condition at this point

We hurried into the hospital so we could finally hold our baby boy again. We stopped along the way and got Katie's prescriptions filled and picked Noah up a little stuffed dog to watch over him. I was worried we would be late getting there and miss our window. I was in no way ready for what i walked into.
When we walked into the NICU there was 4 nurses around Noah's bed and alarms going off. He had stopped breathing...
He had apparently done this quite a few times thoughout the night. And in the next half hour he did it a few more times. It would only be for less than a minute but watching your newborn child's chest just stop moving...He was having apneic episodes which were in conjunction with his seizures, not separate from. Seconds felt like hours every time his breathing would stop. They were always able to get him going again with stimulation and a little blow by oxygen.
A stronger anti-seizure medication was ordered to be used with the other two he was already on. "Keppra" is what they called it. This new medication seemed to control his episodes all throughout the day.
We talked to a few new doctors and they explained a little better what it was they were doing and looking for. Needless to say since he was anything but stable they didnt have his MRI done. So the main focus now is getting his seizures under control and getting him stable for a while so we can get back to digging up reasons for them.
All day he was pretty much knocked out. The anti-seizure medications come with an extreme amount of drowsiness. We stayed all day and all sorts of people came to visit him. aunts, uncles, his great grandparents, my family. The girls at the desk where you check in (each and every time, they are very secure here!) were laughing at the revolving door we appeared to have going.
Later in the night he had a few very small sub-clinical (not seen on the outside) seizures. So we sat back there with him for a while that night. One of the nurses suggested reading him a story, or just talking to him. Which he really responds too! He would almost wake up from time to time and would yawn or cough a little. But never really opened his eyes or showed signs of true wakefulness.
I told him all sorts of things about life, his home, the dogs, anything I could think of. While Katie took a cart of supplies and made a very neat little sign with his name at the end of the bed. They told us about all sorts of programs they have to help the parents de-stress and cope with the inevitable anxiety that comes with a baby in the NICU. I am very glad we chose this hospital...not only are the one of the best places to treat Noah, they are one of the best places to be while he is treated for us.
We left around Midnight to sleep and eat and come back in the morning, and prayed that the next day would be better, not worse...

Noah's Ordeal: Day Two - One Step Forward, Two Steps Back...

This entry was written on October 16th, 3 days after Noah was born.

After passing out at about 8:30 PM we were woke by a nurse telling us that during the night, while they were observing Noah, he had a seizure.
That was never the news I thought I would wake up to. We hurried down to the special care unit to be with him and spent most of the morning just watching him. They started an anti-seizure medication, Phenobarbitol and called for an EEG.
Katies primary doctor (she didn't deliver) showed up and explained the situation a little bit and said that they would do all they could to make sure we could stay there with him a little longer than the normal hospital stay. But very quickly our plans changed again.
The SCU doctor came down and told us that it would be in our best interest to have little Noah transferred to a different hospital with a full NICU (Neonatal Incentive Care Unit) We chose University of Michigan Hospital in Ann Arbor due to is proximity to our home and their GREAT reputation. (one of the top hospitals in the country!)
The doctors started the EEG on Noah while still at the first hospital, which showed that he was having many seizures. Nearly back to back right before his transfer team got there. His eyes would blink, his lips would move, his arm would twitch up and down. mostly on one side of his body but sometimes both. They had just finished the EEG when the transport team from U of M showed up to put him into a big incubator thing and drive him to their hospital. He went by ambulance rather than helicopter, but it was the same team that would have come if he were going by air.
They explained we would have some time to eat lunch or something while they got him set up before we could see him. So we ran home and said hello to the pups, Itook a long overdue shower and grabbed some food and right as we finished eating they said he was set. So we went down to Ann Arbor to see him. It is only a 20-25 minute drive from our home so its not all that bad.
He had had a couple seizures while in transit and they were doing their best to get them under control by increasing his phenobarbitol dosage. it was madness most of the day. Meeting every doctor and nurse as well as talking with the social worker and all of that. But so far this hospital as been amazing at keeping us informed and making sure everything is fine. As well as offering all sorts of services to us to help us cope with this mess...
He was hooked up to an EEG and given a new medication in addition to the first one and it seemed to be working. So at around 10:30 PM one of the nurses basically kicked us out for our own good. Katie had given birth not even 24 hours before and needed some rest so we went home and got some sleep.
Noah was supposed to get an MRI first thing in the morning and if we showed up between 9:30 and 10 we would get to see him and maybe hold him a bit, things were looking up.
but life has a way of throwing you curve balls...

Sunday, October 30, 2011

Noah's Ordeal: Day One - Labor and Birth

This is a journal entry written 2 days after Noah was born, We still didnt know why he was having neonatal seizures or really much of anything at this point. 

Katie, my wife, went into the doctors around 1 PM on Wednesday the 12th. She wasnt sure if her water had actually broke so she just went herself and told me to stay home...I thought this was strange but just went with what she said. A couple hours later she called me and said they were keeping her and would be inducing her.
I got up there ASAP with all of our stuff and the fun began. and went...and went...she got very close to "ready" but then just hung there for hours and hours. She didnt even start actually pushing until about 9 AM the next morning. Then that went on for hours! Noah's heart rate held up perfectly the whole time. but when he finally made his appearance things got interesting.
He was not crying at birth, and didnt for hours...they put him on the cart and had to suck him out and use that pump thing to get him to breath. at first they were concerned because he was very limp, or hypotonic. however his color and muscle tone quickly improved and the muscle tone went a little too far and he was what they call Hypertonic. Someone from the "special care nursery" came down to give her opinion and she said that they would take him and just make sure everything was fine. He was held down there for a while and hooked up to a couple monitors to make sure everything was fine. He remained very hypertonic and was very irritable to the touch. And once he figured out how to cry he really used it!
He was lacking a gag reflex for quite a while, but eventually it kicked in. They tried feeding him and he took about a half an ounce, but soon spit it all back up. Later that night, after being awake for almost 2 full days we went down and held him for the first...and only time to date. We tried to bottle feed him which once again ended up right back outside of him.
The doctors suggested we both get some rest and see how hes doing in the morning....We never saw what happened next coming.
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