Pierce - Age: 4.75 months

Pictures

Pierce - Age: 3 3/4 months

Yesterday was a good day. We took him off any supplemental oxygen yesterday and he did great. I got home from work around 1130am and when I got here, he had Ben doing so well on 23% that I thought I would try taking him off altogether and see how he did. By the way, room air is 21% oxygen so it wasn't a big stretch. He was off till he was put in his crib for the night which was around 11pm. Overall, a great day.

Thanks to Carl and Dan for coming over and having dinner and hanging out. It was great!

Pierce - Age: 3.5 months

So, sorry for the delay in posting. Things have been hectic and I just have not had the time to sit down and write. I will try to be better in the future, but unfortunately I can't promise anything.

Pierce has had a very eventful couple of weeks. The last pediatrician appointment, he was 12  pounds eight ounces. Another pound heavier than he was just two weeks ago.

Last week he went in for a three day EEG because we just didn't feel something was right and thought that he was indeed having seizures even though initially they said he wasn't. The three days were intended to capture any major events. He went in last Tuesday and was to be discharged on Friday morning. Pierce knew where he was and was VERY unhappy. Can't blame the guy really. After only about 12 hours worth of the EEG, they determined that he was having seizures and we started him on a drug called Keppra to help control them.

He was then released the next day. Yay.

Since then they started him on another anti seizure medication so that they could ultimately stop the Keppra, but the first few days we realized that it seemed not to agree him because he started scratching up face. So we have stopped it, per the doctor, and will revisit at his next neurologist appointment.

Today we just had another pediatrician appointment. He is a shrimp (10th percentile) and his weight is right in line with his height. She said it looked like we have been taking great care of him and he is certainly moving around more, is stronger and has more eye movement. This is all great news! BTW, he is 12lbs 8oz.

Enjoy some of the pictures below.

Pierce - Age: 11 weeks

Pictures....and some thoughts. 

It's its 730am on Sunday morning the 23rd. Pierce has been home for just over two weeks now. As I sit here watching him, so Nicole can get some much needed sleep, I am reminded the little things in life that we take for granted...breathing, swallowing, eating. 

It never occurred to me that I would be the parent of a disabled/handicapped child. But you know what I have realized...you figure it out. Children don't come with owners manuals. Well babies or otherwise. Modern medicine is amazing. 

I am so very thankful for all the support I have received from friends and family. It has been so wonderful and thoughtful.  All the nice emails, gifts, food, etc...It has been overwhelmingly nice. 

I am also so grateful for my colleagues and the company that I work for. Everyone has been understanding and interested in how Pierce is doing. It is so wonderful to have a work family who is that supportive. The insurance that my company provides is top notch and I am so grateful that it is available to Pierce. Without my insurance, Nicole's insurance and Obamacare, we would likely be bankrupt. 

A thank you to the wonderful people at Children's National Medical Center. They were fantastic and have given Nicole and me the skills to take care of our little man. They were great, caring, thoughtful and gave him such good care. 

Thank you to all the folks in Hyattsville. Thank you for taking us in when we moved and being such great friends. You all have been fabulous. 

Pierce has such a great group of people loving and pulling for him and for that I am grateful. I was watching the Olympics last night and they had a piece on this young girl who is a Paralympic Olympian in swimming and was born with two missing lower legs. She was adopted from Russia and lives in Baltimore. She mentioned in the piece, as she was heading to see her biological mother and father, that being disabled hasn't stopped her from doing anything. She learned early on how  to walk with prosthetics and is an extremely happy and talented young woman.  Pierce is going be that way too. As Dan said, he is going to be a beast. 

Right now he is kicking and moving and having fun on his play mat. I am very proud of him. 

Thank you all for your love and support.

Thank you Pierce for being strong and reminding me of all the small wonderful things in life.

Pierce - Age: 10 weeks

Snow! This snow came on Thursday. We got about a foot. We enjoyed looking at it and still have snow on Sunday although it is supposed to melt if next week with spring temperatures. Grandpa Kovite has come to visit for a week.

Those are photos of the machines in his room. Nicole has done a great job of decorating and placing the furniture so that the machines aren't too much the way. It still is a lot of stuff, but we got this!
Happy Sunday everyone. Enjoy the Olympics.

Pierce - Age: 10 weeks...I think

Man, oh man am I tired. Nicole is exhausted. This is tough. I thought that I was ready for the middle of the night feedings, etc. but I dont think that I was. Now, I have nothing to compare this to but regardless, this is tough. I think the most nerve wracking thing is having to trust a nurse to take care of your child while you are asleep. Someone that you dont know, someone who you dont trust, someone who is in your house when you are not awake. Its just weird. And irritating. And seems unnatural.

I am having a heck of a time putting together this blog post, so please bear with me.

Since we have brought him home, about 10 days, the nursing company couldnt cover two shifts. This is the most frustrating cause Nicole does have to sleep. The second most frustrating/scary part is that some of these nurses have not a darn clue what they are doing....sure, they all talk a good game, but when the time comes to play...they cant. It is so frustrating. I would guess that part of the reason why they cannot find a nurse for certain nights is because we keep firing them. I keep coming into the room (by either happenstance or from an alarm going off) and the nurse has done something wrong. The last time, the lady was pumping the ambubag as hard as she could. Now, this is scary cause he is a TINY baby. If I had not set the regulator on that bag to keep it so that it wouldnt go past a certain pressure....I think that it could have been bad. That is the sort of stuff that I am talking about. It is scary. Needless to say when I saw that, I snatched the bag right out of her hand and started doing it myself....and no, I dont plan on having her back.

Regardless of the problems with nursing care, Pierce has been doing well. He has had a couple of episodes which turn into dsats and bradys, but then other times he will have them and he will be fine. Last night, when we had no nurse, Nicole said that he slept though the night and had no incidents. I think that is great. Maybe he is really coming into his own and figuring it out.

Friday night, again, no incidents and slept through the night. Same with Saturday night. Overall it had been a good weekend. Oh, and yes, I started this post on Friday and am just finishing this post.

At this point, there is not much to report as far as things that are happening so I see this blog become more and more small comments with pictures attached. If something big happens it will be on here, but enjoy the pictures and know that we are doing well.

Pierce - Age: Nine weeks

In talking with Nicole, she recommends that I start taking his age in weeks so going forward, that is what I will do.

Pierce is officially home! Yay! We are excited and terrified at the same time. Currently we have 24 hour nursing and are going to keep that through the weekend and then reevaluate. The problem is that my insurance will only pay for 80% of the nursing cost and it is not cheap. But of course, we need to keep Pierce safe so we will see how it goes. The 24 hour nursing is supposed to end after week one anyway until we get adjusted to how to care for him during the day. We will need nursing through the night as right now, I didn't wake up to his alarms....I need to work on that as well. It will come, I'm sure.

Anyhow, he has now been home for a full 36 hours. He seems to be doing great and we are learning to take care of him in our home. It is a little but different than the hospital but that is to be expected. We just rearranged his room last night to work better for us with all the equipment that we have in the room and to get a suitable line of vision for the nurses.

He had his first pediatrician appointment yesterday. I met Nicole and the nurse at the docs because I was at work. That was tough for sure. It was the first time out if the house and boy was that nerve wracking, for me not being there and for Nicole having to it, but all in all he was fine and everything went well. The doctor is nice, we like the practice and even called them this morning for a question that we had about his not pooping in over 12 hours which I guess is normal and fine. Nicole and I are both happy with the choice.

It is now a weekend and we are going to bring him downstairs on his nose (a little filtered piece that goes over the trach that he can breathe through without being hooked up to the humidifier. We are going to put him in his pack and play and see how he likes being downstairs with digs and the fam.

I think it will be a great day. Here are some pictures from leaving the NICU to getting home, to him being in his room.