Happy 2nd Birthday baby boy!!!

Two years ago today we welcomed Mr.  Matthew into this world.  After many,  many long hours of hard work on my part he finally arrived.  It was a super bittersweet time.  I knew that while I was still carrying him he would be safe, and I was terrified of the unknown. 

Well the unknown came and went and today we are celebrating... 

The last two years have not been without struggle,  but I cherish every moment. Since his first birthday he has had 7 surgeries and several hospitalizations.  Matthew has come so far in the last few months,  after some very severe set backs he is making huge progress. He is acting like a typical 2 year old.

He finally started crawling at 23 months.  This was such a huge accomplishment for him.  He had worked so,  so hard to get to this point.  He can stand and take steps with assistance,  so this will be our big goal this year... Get him walking.  He still is 100% tube fed,  but making great progress with tolerating things in his mouth.  He will drink water out of any kind of a cup sippy or not.  So that is our other big goal..  Get Matthew eating by mouth.  I am very hopeful that this next year will bring great thing to him. 

Matthew brings so much joy to our family.  He is the happiest kid most of the time.  He loves his big brother so much and wants to be with him all the time.  He loves his doggies and thankfully they live him too.  :)  Matthew has shown me what strength really is.  He is one of the strongest little guys I know.  I am thankful for everyday we have.  I am so proud of how hard he has worked to get to where he is.  He goes to physical therapy,  occupational therapy,  and speech therapy twice a week.  He goes for a total of 2 1/2 hours each day.  Then he has a home teacher twice a week for an hour each visit.  Needless to say he gets worked throughout the week. 

I see great things for your future little man.  I am so incredibly blessed to be able to call you mine.  Here is to many,  many more happy,  healthy years ahead. 

I love you to the moon and back.
Mommy

As our world turns

I am passing time in Matthew's hospital room, so I thought I would post an update on him...
Friday he woke up with a little cough and sneezing, by Saturday his cough had progressively gotten worse and he was wheezing. I always start Albuterol breathing treatments as soon as he shows any signs of a cold. I also give him an inhaled steroid as well. I had been giving him his regular doses of all his breathing treatments and they just didn't seem to be working. I put him to bed Friday night and he just wouldn't go to sleep. So not like him as all, he usually grabs his blankie rolls over and is out. Finally at about 1 am I went into his room and his breathing was very labored. His respirations were pretty normal for him, he was just working really hard to breath. So I decided to take him in to the ER.

I tried to go to bed on Friday to hopefully get a little sleep. That didn't work out so well. Finn woke up screaming so I took him into the spare bed with me. He coughed and coughed and was running a slight fever. Then a short while later Matthew was up. So needless to say this mommy did not get any sleep last night.

We got to the ER( side note...The Childrens ER is now open at the hospital we take him to CHOC...Children's Hospital Orange County. It was very nice to have an all pediatric team and all the rooms are private. A big plus from having to go to the main hospital ER and possibly be in a shared room with big people and them not knowing how to take care of kids.) He was seen right away and they started breathing treatments immediately and gave him an oral steroid. He was sounding more clear, but his breathing just was not improving. So they made the decision to put him on a high flow nasal cannula. Also since they put him on high flow O2 he needed to be admitted and had to go to the PICU. We got settled into our room at about 6am. Poor baby had been awake all night. Daddy came to relieve me at about 10:30 this morning and he walked into a very agitated baby. Daddy was able to get the doctors to give him some Ativan to help calm him and he got some much needed sleep. They put him on a continuous albuterol treatment and it seems to be helping a little. They also started chest percussion. Basically they use little foam like cups and beat on his chest and back. Looks pretty brutal, but it isn't. It really helps to loosen things up so he can cough the crud up. He is doing ok so far. He keeps telling me tonight that he wants to go bye bye and outside. I know sweet baby, me too. :(

I am staying the night with him so I am looking forward to another night of not sleeping. I just hope both my boys are feeling better soon. I feel so terrible that they both need mommy and I can only be in one place at a time. Nothing like mommy when you are sick. Even though daddy is great and he tries really hard they just do not respond to him the same way when they are sick.

I am praying for health for my family and for it to stick around for awhile. I loath you cold/flu season and CDH.

Mommy

Happy 1/2 Birthday!!!

My baby boy is 1 1/2 today. I can not believe what a ride it has been. I wouldn't change it for the world, but it has not been the easiest thing I have ever done either.

 Matthew came home in December at two months old from the NICU. We pretty much stayed home bound for the rest of the winter, then we were kind of thrown for a loop and had to make a very difficult decision. We had to move for my husbands job. We up and moved away from all of our family and friends. We have done this before without kids and it was a lot easier then.

 Everything was going good with the move and adjusting until about September/October when Matthew started to regress pretty rapidly. Until this point he had been almost sitting up unassisted, could hold his head up, roll over form front to back and back to front, could stand with assistance for a minute or so, and was taking bites of food. Well, ALL of that changed. He could no longer sit up or even hold his head up. He could not roll any longer and he was not making any progress forward in therapy. This was very concerning to myself and his therapists. We were all at a complete loss as to WHY he was doing this. In the meantime I had been trying to find a pediatrician that would be comfortable taking care of Matthew. I finally found one and took him for his 1 year appointment and she measured his head and it was really big. He is only in the 20-25% for his height and weight, his head was off the charts big. She referred me to a neurologist so I called to make an appointment. The first appointment they had for an "urgent" request was 2 months out. So we kept the appointment and just kept a watch on him. We continued to go to his pediatrician for his RSV (Synagis) shots and she would measure his head everytime and it just kept getting bigger. She finally told me to take him to the ER. This was in December.

 So I waited a couple days and took him. I had Finn with me and my husband was in town, but in LA which without traffic is a good hour away from the hospital. With traffic it can be hours away, well that was the case this day. The boys and I get to the ER and I tell them I wanted a CT scan for Matthew per my pediatricians request. We got into a room very quickly and within 10 minutes we had seen the ER doctor and within 30 minutes we had been taken to get a head CT. We were waiting for the results, which they claim take 45-60 minutes to come back. Not the case with us that day. We had the results back within 20 minutes of the scan. We had a confirmed diagnosis of Severe Hydrocephalus (water on the brain). A Neuroseurgeon PA came in within an hour and had stuck a BIG needle into Matthew head to draw out CSF fluid from his brain to check for any infection. I was then told that he was going in for surgery to place a shunt immediately. The only thing we had to wait for from that point was the results of the fluid. No infection, so surgery was a GO. Well from the time we stepped foot into the ER until he was being wheeled into surgery it was less then 4 hours. Now remember I told you my husband was in LA, well he did not make it to the hospital in time for surgery. One, because he was taken to surgery so fast and two, traffic was awful that day. SO I had Finn with me the whole time. He had to sit in with the nurses while I went into recovery with Matthew. Not the most ideal situation, but we made it work. Jim finally showed up while Matthew was still in recovery. So Finn did not need to be with the nurses any longer. Matthew was then admitted to the PICU for the next 6 days. (Needless to say we never saw the neurologist, we are strictly followed by a neurosurgeon now.)

We went to the neurosurgeon for a follow up on December 21st. Well to my surprise once again we were told we were getting admitted back to the hospital, due to an infection in Matthew abdomin.  So again I had Finn with me, since we do not have any family here to leave him with for appointments. We get to the hospital and Matthew is wheeled back into surgery to externalize his shunt for a few days and then go back into surgery to re-internalize it. We ended up spending our Christmas in the hospital. Which the year before we made it out of the NICU right before.

Since that last surgery Matthew has made great progress forward. He was able to hold his head up almost immediately after. He can sit up is rolling over again and is starting to put some weight on his legs. Still not even close to standing on them, but will bear weight with assistance. He is talking up a storm. He has about 15-20 words he says all the time and he will try to say anything. It has been quite reassuring to see.

Feeding is a different story. He has a LONG LONG way to go there. That is our biggest battle right now. Hopefully one day we can get him to put some kind of food or drink in his mouth without gagging or retching. Until then we will just keep up with his feeding therapy and hope for the best.

Now that I wrote a novel, the whole point of it is to say that we do not have to go back to the neurosurgeon for a WHOLE Year. So after the last few month of pure craziness this makes me very happy. It makes my heart very happy to know that my boy is making such great progress. He will overcome all the things thrown at him. He is one strong little boy. Not only is he strong he is the sweetest little guy, with a bit of onery starting to come through, which is a welcome sight.

So Happy Half Birthday to my little stinky guy. Mama loves you to pieces.

Light at the end of the tunnel...

Today we went to the Pulmonologist for our regular 2-3 month check up. We have the possibility to see a different Doctor each time we go, because they call it a clinic and you never know which Doctor you will get. We have had the same Doctor for most of our visits. So today was no different we saw a new Doctor, which I ended up really liking, so I hope we can see him again. He was VERY happy with what he saw in Matthew. ( a little back up first...) Last visit they decided to keep Matthew on oxygen until his respiration rate slowed down. He has always had a faster then "normal" respiration rate.
Well today Matthew's respiration rate was great and has been. The new doctor was very impressed considering Matthew has been fighting a cold. He said that the fact he had a cold and it didn't really bother him was a great thing. So he ordered a sleep study to see if we can get rid of the oxygen. YAY!!! I am not at all nervous about this, as each time he has been in the hospital lately he takes his oxygen off and still saturates at 98-100%. I know the sleep study is a lot more involved, but if they are looking if his saturation levels drop I can tell them that they do not. So I don't want to get my hopes too high, but this did excite me quite a bit. Wow, what would it be like to NOT have to haul around oxygen? I am pretty sure Matthew understood the doctor, because since we left there I can not keep his oxygen on him. Little Turkey...We are tentatively scheduled for a nighttime 10 hour sleep study, but the doctor was telling me he wanted a nap study, which is done during the day at nap time. So we will see which one it is for sure. Then we go back in June and they will decide if he can come of oxygen or not. So we have a few more months with it, but I think I finally see that light at the end of the tunnel.

Other then that things have been pretty quite around here. Matthew did great in his last surgery and was able to come home that day. He has recovered really well, all except for his cold. He seems to be getting over that now. We all had it, but ours was only about a 4-5 day thing. After several breathing treatments and steroids we managed his cold at home. Thank the Lord.

We just have all of our regular routine visits coming in the next few months and I am hoping it stays that way.
Even though the new Children's Hospital is opening section by section, I don't really need to go see it. I can see it from the outside as we drive by going to doctors. I am totally okay with that.

Here's to hoping June brings GREAT News,
Jaime

What's up?

I thought is was time for an update:

Matthew has been doing great. He has been making great progress in therapy. He is almost sitting unassisted...he can sit for about 30-45 seconds without falling. He has started talking and doing some baby sign language. He says about 10-15 words, which I didn't think he would do for awhile due to him not using his mouth to eat. I have heard you need to use all the muscles needed to eat to talk. So I was a little surprised he is talking as much as he is. As stated above he is still not taking anything by mouth. He goes to OT twice a week and we work on feeding him, but he has no interest in food. He will put ANYTHING else in his mouth, but not food. I am hoping that it will just click with him one of these days. He has started drinking water out of a cup so that is great progress. He only takes about 5-10 mls at a time, but at least it is something.

A few weeks ago I was changing his diaper and noticed that his left testie was looking very swollen, so we took a trip to the pediatrician and she said he had an inguinal hernia. Of course he did. Why wouldn't he. Everything that seems to go wrong with his results in a "hernia". So we scheduled an appointment with a urologist and found out he needs surgery to fix it. With that being said surgery is scheduled for this coming Tuesday February 26th. I am hoping and praying it will be an outpatient procedure, but they are making sure he has a room in the ICU just in case. Since he has not done anything in life normally they do not want to take any chances. I am hoping that this does not set him back any at all. I just want to see him keep making great strides in his development.

After we went back to therapy after the first of the year, they reevaluated him and gave him goals. He is already reaching his goals for OT and he is making progress towards his goals for PT. I am so proud of all the progress that he has made. All of his hospital stays and illnesses set him back quite a bit. It was very hard to watch him regress on all of the things he was doing. I am keeping a very positive outlook on all of this and treating it as a learning experience. I just hope there is not a next time for needing any of this information.

I will update after his surgery..

J

A good start to 2013

So far it has been a good start to 2013. No hospital visits for almost a month. That is a new record for the last few months. About three weeks ago we saw his pulmonologist and he thought he was looking good considering everything he had been through. He discontinued all of his oral medications that day. Yay! He is still on oxygen and will continue to be until his respiration rate is more normal. He still hangs out in the 40-50bpm range. Still faster then "normal". I was ok with this am
Nd knowing what the future plans are make it easier to deal with. It is the not knowing plan that I don't like very much.  His Physical Therapist says he should be off  once he starts sitting up and gaining more strength. She says that alone should help his breathing.

Speaking of therapy, he has been making great progress. He is able to hold his head up again and can almost sit up unassisted again. He still does not like tummy time at all, but that doesn't stop any of us from putting him on it. He still protests a lot in therapy, but now we know it is just protesting and not something wrong with him. His OT is going ok. (This is his feeding therapy) we can get him to take a bite or two but he is refusing to swallow things. He likes to let it just pool in his mouth. This will be a very long road getting him to eat and gain confidence in his swallowing abilities. You can tell he is not confident he can do it. He has had a swallow study and passed it, so we know he can swallow properly.

Today we had our cardiology and GI follow ups...
Cardiology went well said he was very happy with his progress and feels we are ready to drag our appointments further out. So now we go every 6 months instead of every 3. Yay for forward progress. He also said his pulmonary hypertension looks the same, which last time he said it was very mild to gone. He said at this age you can not say for 100% certainty it is gone, but he is pretty confident it is at the very worst very very mild. Yay again. The PH monster can go away and never come back and it would be too soon.

His GI was happy with him as well. She saw him shortly after his last hospital stay and could not believe everything he had been through. He had lost some weight, but was given a pass due to his hospitalizations. Since his last visit 3 weeks ago he has gained almost 2 lbs. I know that doesn't sound like much , but for a 100% tube fed and CDH kiddo this is great. CDH kiddos seem to not like to gain weight. She took him off of infant formula and put him on pediasure. I sure hope he tolerates it. He has been kind of sensitive to new formulas. I have been told insurance should cover it due to him being tube fed, so I sure hope that is true in our case.

Over all his doctors appointments went really well. We have is neurosurgeon follow up tomorrow and I hope that goes as well. His incisions are still pretty pink and the doctor he not liked that in that past so fingers crossed Matthew passes inspection tomorrow.

Matthew has just gotten better and better everyday. He is so much more mobile and vocal then he was about 3 months ago. It is so nice to have my baby back.he rolls around and sits up and plays with toys all the time and absolutely loves playing with his brother. It is so much fun to sit and watch   them.

We have managed to stay healthy this cold and flu season. I just hope and pray it stays that way. That is the last thing Matthew needs right now. We have been being very careful, but it is hard when you have so many Dr appts. And therapies to go to each week. We will just keep staying inside and avoiding busy "people" areas and hopefully we can make it through the rest of the cold/flu season without any of it.

I think that catches us up for now, I will keep posting when I have any information to share.