Back and Forth

Back and Forth


Sam is doing well… now. On Wednesday Samuel threw up twice, once at home and once in the cardiologist’s office. We were a bit concerned, told the experts, and kept moving forward.

Thursday was a busy day. Samuel was carted all over town. We went to the pediatrician’s office to get Sam’s weight checked. We mentioned the vomiting. A minute or two after the examination Sam threw up again. The doctor requested a blood draw in the clinic to check the level of the digoxin in his system and a stomach ultrasound at UW to make sure there wasn’t a problem with his digestive tract. The problem with babies and vomiting is that they all do it at some level. Because they all do it, it’s hard to nail down the cause.

Our little guy has become a bit of an aficionado of medical personnel and practices. He doesn’t mind EKGs. Yet, he is not a fan of blood draws. After the blood draw we went home for a time, where he threw up again. Then we headed over to the UW hospitals for his stomach ultrasound. It was a surreal. The last time I was in a room like that Kate was having an ultrasound showing us Sam (though we did not know if he was a boy or girl). Now Sam was on the table having an ultrasound. In case anyone is interested, Sam is not pregnant.

His digestive system is working great. I dropped the 24 hour heart monitor Sam had on for the day in another office in the same building. We didn’t have the blood test results by 5:00 so I headed over to the clinic. Sam’s doctor was calling Katie as I came into his office. Sam’s stomach, metabolism, etc. didn’t like the medicine. He needed to stop taking it and switch over to something else. This meant another 48 hours or more in another hospital with a whole new team for our little guy and another goodbye to the thoroughly confused cats.

So, as I type this we are in UW Children’s Hospital. We checked in Thursday night and at the earliest we will take Sam home on Saturday. It is a beautiful facility with great staff. Sam is off his old medicine and has moved on to a beta blocker. You may have heard the term used in adds for the elderly population with high blood pressure. His vitals were great throughout this. He has had even more blood drawn, but seems to forgive us moments afterward.

He is bright eyed and bushy-tailed on the current dose. They are still “loading” the medicine, so we should have a better feel for how he will handle it after we have reached the full drug density point in his system.

Thank you for the support. Keep the prayers coming…

Grandma Hughes visited Sam today. He was happy to see her and get in some good Grandma snuggling time.

We also had our cardiology appointment at UW Children's Hospital. Sam was not too happy about being poked and prodded. He had yet another EKG and was sent home with a heart monitor for the night. It includes a few sensors stuck to Sam's chest. We simply take it off and take it back to UW tomorrow night. They can download the stats over 24 hours and perhaps gather some more information. The EKG results looked good.

Our main goals today were to get Sam some more Grandma love, make sure he is still doing well, and get some guidance as to what to expect in the future. The good news is that he is doing well. The prognosis for the future is foggy, as every child is different. The pediatric cardiologist is great. She doesn't sugarcoat and she obviously knows her stuff. Around 20% of kids in Sam's situation grow out of the SVT episodes. Others may stay on medication their entire lives, or opt for surgery. The risks outweigh the rewards for surgery at this point. The medicine is working, his vitals are solid, he might grow out of it, and surgery to freeze or zap the extra electric connection would be significantly less complicated a few years out. So, the plan now is to use the medicine for at least one year. If he is still doing well we may take him off it and see how he does for a few days. If his rate jumps again, he's back on digoxin (the heart med). There are many low probability chances for setback, but right now things look ok.

He's a great little guy. In the last 24 hours he has become much more interested in who is feeding him and what is going on around him. Late last night he didn't want to sleep so I took him for a walk around the house. When we came into the dark sunroom he saw the moon. He picked up his head, opened his eyes and mouth wide, and just stared for a few seconds. He likely only saw a big white blur, but it was still pretty amazing.

First Impressions

Thank you for all the emails and calls of support. We've never done a blog before. Apparently this one was requiring you to have a Gmail account to post. It is now changed so you can post comments if you want (and now we can reply too).

Sam came home last night at 8 pm. We had had a busy day. There was another EKG, another visit by the neonatologist, another stethoscope test (hard to do when he's gurgling or yelling), and a review of Sam's info by UW cardiology. He passed his tests and the medicine is working. A picture of us on our way out of NICU is included and a shot of a few of the people that cared for Sam is included as well.

The cats seemed very intrigued at first. Now I think they may be concerned as he doesn't seem to be a short term visitor. As I type this Dusty is laying on the keyboard demanding attention.

Today we had Sam's first pediatrician appointment. He didn't like it, but he's healthy. Tomorrow we meet with cardiology. On Thursday we see the pediatrician again.

Time to feed him...

Going home tomorrow!

Sam's last night in Newborn Intensive Care. We're going home tomorrow!



Kate and I slept at home for the first night since Sam was born. When we came into the hospital this morning for his 7 am feeding we were told that he spent one 10 minute stretch in the 60 to low 70 bmp range that night. He got himself out of that range without any prodding. The slow deep sleep heart rate is a result of the medicine used to keep him from jumping to a higher heart rate. In the past few days Sam spent ten minutes or more in the 60-70 range, 120-130 range, and 240-250 range.

The top end has been a non-issue since he started his twice a day oral medicine. The drug has been around forever and its results are well documented. The amazing thing about babies is apparently adaptability. In any of the heart rate ranges he didn't seem annoyed and his oxygen saturation, blood pressure, temp, and all other vitals were perfect. It was quite insane to hold a stethoscope to his chest when his heart was beating over 200 bpm and have him looking up, stretching out, and yawning without a care in the world. He didn't seem concerned that his heart rate was moving around, while we were a bit frantic.



Now his heart rate is under control on the mellow side of normal. He is doing great and is eating and belching like a champ.


Doctors made rounds today, a Meriter resident contacted UW Cardiology, and we will be taking Sam home Monday (tomorrow)!

We will meet with UW Cardiology on Tuesday to try to get some more information if and/or when Sam might grow out of this and not need the twice a day drug. We've heard every timeline and speculation in the book thus far, so we won't send out any information until we talk to another expert.

A great day (and more pictures)

Katie making phone calls moments after giving birth. Note the phone in her lap.

Milk drunk 1 and then a few moments later Milk drunk 2

Already bored with us...

Yesterday was a great day. Samuel was released from the bonds of his IV and was moved from his isolette to a normal crib. The drug appears to be keeping his heart rate from spiking too high. When he is awake, feeding, and active the rate is fine. The issue now is that after he has eaten and goes into a deep sleep his heart rate drops too low a few times a minute. He will drop into the 60-70 bpm range for a few seconds and then recover. We will meet with a cardiologist from UW again tomorrow and the decision will be made whether the current momentary drops are ok or whether we should reduce the dose to find a "happy medium."

Attached are a few pictures, some from me, some from Lisa. Thank you for all your support and prayers.

Baby Time

Samuel was born on Thanksgiving Day at 5 am and weighed 9 pounds at birth. He is doing well.

Photo shoot

Katie and cats

Here is a shot from our little photo shoot over the weekend. I also included some cat harassment shots. The garage is done. The kitchen is done. The clock is ticking...

Mustache

Blog Setup

The baby will be here any day now. The room is done and Kate's two door car will soon to be history. The garage and kitchen need to be cleaned up. Otherwise, we are ready.