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.

Pierce - Age: 2 months 3 days

As we come to the middle of the week, we realize that we are closer to bringing him home than ever before. The last couple off days have been hectic and quite a push to get things completed before his homecoming.

We have been fighting with the insurance company to get things done expeditiously to make sure that nursing is covered. That has been a nightmare. He can't come home until we have nursing set up. We can't get nursing set up until insurance blesses it and gives the nursing company authorization. Coupled with that, we have to ask for special review through Nicole's insurance since nursing isn't covered at all in her plan. Hopefully they say yes. Keep your fingers crossed.

We just got our delivery of medical supplies last night. Honestly, it could be much worse. The armoire that I put together made a big difference...and it looks better than what everyone else was recommending. Thanks Ikea!

On top of all that, we found out yesterday, two days before being discharged, that Pierce is deaf. There was no response in his brain stem when they tested his hearing. Unsure if his brain stem will fix itself, but it seems unlikely...at least there are no documented cases of that happening. So in our spare time we will be learning a second language.

This morning we learn how to use the equipment they just sent us. That's it for now. I'll keep you posted.

Pierce - Age: 2 months 1 day

All,

So, this weekend went fine. He had some issues on Sunday with his secretions, but Nicole and the nurse put some saline in the trach, bagged it to push it down a bit in his trachea and then suctioned it out. They then kicked the warmth up on the humidifior. This seemed to work as last night he was doing well and when I came in this morning, he looked happy.

Yesterday, Pierce wore his second favorite teams colors while they were in the super bowl and sure enough, he gave them the strength that they needed to blow out the Denver Broncos. "Yay Seahawks" is how he responded when he heard the news. "That defense is a powerhouse. Peyton had no chance" was how he finished off his comment. He might be a sportscaster one day.

The most exciting and scary thing though is that it looks like the hospital is planning on releasing him on Wednesday. So now we are in the mad rush to get everything set to bring him home. Yesterday I was putting together a new armoire because we need space to keep all him medical supplies. We have realized that having everything in a 'central supply' is a good idea and just keeping what we need nearby will be important, so I am putting together boxes to keep under his crib and this beautiful armoire. We will be ready for his homecoming.