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.

Here we go Again!!!

Here is a little back story as to Why Matthew had surgery again.

When he was in the hospital a month ago he missed his 1 year appointment with his pediatrician. So I rescheduled it for 2 days after he was discharged. During her routine assessment she discovered his head was really big. Like off the charts big. He head was in the 25% for all his other visits, so this was quite alarming to her. She immediately told me to get into contact with a neurologist. I called and talked to them and they did what they do and I ended up getting an Appt for December 21st. I called the neurologist office to see if I needed a CT scan or MRI before his visit and they basically just blew it off and said they would decide at his visit. They then told me they needed some extra paperwork from my Pediatrician. So I took her the paperwork that she needed and she wanted to re-measure Matthew's head. It was bigger from 2 1/2 weeks ago when he was in there getting his Synagis shot. So she suggested we take him to the ER. So that is what I did.
I got up yesterday morning and got Finn off to a friends house and Matthew and I headed to the ER. We arrived at about 10:20am and by 10:30am I had seen the Doctor and by 10:50am we had had a CT scan. CT results came back about 10 minutes later and is was determined that Matthew had severe Hydrocephalus. Needless to say they said Surgery would be today and was scheduled for 2:00pm. GULP!!! Another Surgery???? The neuro surgeons PA came in and did a procedure on Matthew in the ER. He stuck a decent sized needle in Matthew's soft spot and drew out some of the fluid. They need to make sure it was not infected before they knew which procedure they were going to do. About 30 minutes after that was done we were rolled down to pre-op and he went into surgery at about 1:30. He did not have an infection so they ended up placing a shunt into his head. (I will do my best to try and explain this below). The surgery itself took about 30-40 minutes but he was in recovery for quite awhile before I was able to go back with him. He did great during the surgery. This one seems to be a bit tougher on him then even the previous one. Seems to be in more pain. Which is totally understandable.

What is Hydrocephalus?
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002538/

What is a shunt?
So what they told me is that they take a straw type of a tube and run that from the head to behind the ear and connect it to a valve behind his ear.From the valve they place another tube from the valve and run it down his neck, chest and into his stomach and the fluid can drain into it. The valve it electronic and completely programmable. So the Doctor can adjust it as needed. We hope he doesn't have to have this replaced, but it is a very real possibility that he will need the shunt replaced several times in his life.

My poor baby boy has been through so much in his short little life. I just hope he can catch a break soon. It terrifies me beyond belief every time he goes into the hospital. I never know what will happen.I try not to worry too much, but it is impossible. And the stress that you endure while your child is in the Hospital/Surgery is unlike any other stress I have experienced. It is not a healthy stress for me. It is a stress that makes me not want to eat, drink or sleep. All these things you need to be there for your baby and I can not seem to MAKE myself do any of them. I am usually the opposite with "normal" stress I want to eat ALL the time. I am hopeful this will be a short hospital stay and he will feel SOOO much better after this. All I want is my happy baby boy back. He has been miserable for about two months now and it just breaks my heart knowing that we could have had this taken care of sooner, if I hadn't waited on the neurologist clinic. I have learned a lesson and that is to ALWAYS trust my gut and Mommy instinct.

We just added one more thing to have to worry about all the time now. But I am forever greatfull to have my little boy here with us. So many CDH families are not as lucky as us. I do not take a single day with Matthew of Finn for that matter for granted. I cherish every moment I have with them, because you never know when you won't have another one.

Have I ever said that I HATE CDH.. Well I do. It is an evil awful defect that doesn't just get fixed with the repair surgery. It is a life long problem for a lot of kids and Matthew is showing that this might be the case for him. I urge you all to help raise awareness ANY way you can. Matthew and SOOOOO many other babies need it. I wish no other families had to go through what we have. Sadly there is a baby born every 10 minutes with CDH and 50% of them DO NOT make it. I know I have said this before and I will DEFINITELY say it again. My efforts for raising awareness are far from over, they may have just started.

Thank you for reading,
Jaime

Another Surgery

Here is the story of what happened to Matthew:

He woke up Tuesday morning at about 2 a.m. crying and as I picked him up he started to retch. ( What I mean by retching is gagging-dry heaving. He can not throw up due to a previous surgery.) So I got a bottle and let his G-tube vent into the bottle and what was coming out was not the right color. It had a brown tinge to it. Just knowing what to look for in CDH kiddos I knew brown was not good. He continued to retch 8 times in an hour. So I woke Jim up and we decided to take him into the ER. So we got Finn up at 3 a.m and we all got in the car and drove to the ER. We spent about 7 hours total in the ER with a 3 year old. Thankfully he did amazing. While in the ER they did an x-ray and blood work. X-ray showed what looked like a reherniation, so they immediately called surgery. They came down and said they were confident he had reherniated. They finally admitted him and then they did an upper GI on him to make sure what they were going to find when they got in there. Well the upper GI showed he had a esphoageal hernia. So his stomach had herniated into his esophagus. Needless to he definitely needed surgery AGAIN. Thank goodness it was not a rehernation of the diaphragm.  So he was scheduled for surgery on Wednesday at 9 a.m. They got him in to surgery at about 10:30 and he was in recovery by 12:30. The surgeon said " He was a tough case and had lots of scar tissue" He said he was a mess in there, which we already knew that from the surgeon who preformed his other surgeries. The next day was the worst for pain for him and the poor little guy was just miserable. They were giving him pain meds, but they didn't seem to really be working as well as we would have liked. They gave him some different meds the next day and he has seemed to be a lot more comfortable since then. Each day he is improving and feeling better. He passed some gas today so we are hoping they will start feeds tomorrow. Once feeds start and go through his system and he poos then we can go home. The said he is not a typical surgery case of need to make sure he can tolerate feeds, because we already know he can tolerate them since he has been for months already. 

So the procedure the surgeon is the same thing that Matthew had on a previous surgery. He had to go in and completely undo his Nissen Fundoplication and then redo it. Here is a link to what a nissen is again.

http://en.wikipedia.org/wiki/Nissen_fundoplication

He said instead of stitching on one side he stitched it to his own tissue and then stitched it on both sides in hopes that it will never have to be redone. I sure hope so too.

I just hope that this surgery fixes everything with his stomach. It has been a very active organ. It has been up next to his heart, then it traveled to adhere itself to his patch and now it wanted to see his esophagus. I am hoping that it has decided to behave itself. I don't want ANY MORE surgeries. I know that this is the future we face with having a CDH kid. You never know when something like this will happen. There are so many different scenerios that can happen, you just hope that they won't. It is not the most fun to have to always worry if they get sick or start acting a little off. It always make you think the worst. With Finn if he gets sick and is a little off you just chalk it up to him being sick. Matthew is a different story all together. He gets a cold and I worry he will end up in the hospital. He throws up and I worry he has a bowel obstruction, reherniated, or something else all together. I hate to say I live in constant worry, but I kind of do. It is not something I really enjoy, but it is our normal and I have embraced it for all it is worth and I have learned to know my boy inside and out and I know when something is not right. 

He had been acting a little off the last couple of months and I just could not put my finger on it. Now I know I need to trust my gut and when something is not quite right. I am thankful they got it figured out and he is on the mend now.

Thank you for all your thoughts and prayers they mean a lot to us.

Jaime

Happy Birthday Matthew!!!

Matthew is ONE!!!

Wow! I can not believe it has been a year since we jumped head first into this crazy roller coaster ride we have been on.

One year ago today we welcomed Matthew into this world, He made one quick cry before they intubated him. That was the last time I heard him cry for a month. I got a very quick peek at my baby boy before the wheeled him up to the NICU. That is when he started the fight for his life. He was a fighter from the beginning.

4 weeks intubated (on and off)
3 surgeries
2 (too) many meds and IV's to count
1 Thankful Mommy

26 days before I held you for the first time
59 days total spent in the NICU

This is just a short summary of your stay.

Thanks to all the amazing Staff at St Al's our little boy is here with us today.

This last year has been an emotional, eye opening, rewarding, and adventurous to say the least. Not only were we learning to deal with a medically fragile child, we decided to make a huge move as well. I am not quite sure what we were really thinking, but we did it and are living it now.

Matthew has taught me the true meaning of a fighter. I can not imagine going through half of what he did and still be a happy person. I am positive I would be cranky as hell. He is the most loving, happy baby I know. ( not that I know a ton of babies) He has every right to be unhappy as I am sure he can not feel good all the time, but that never seems to matter. He gets a bit fussy at times, but what baby doesn't. He can bring a smile to my face in the darkest of times. He has shown me that I have strength that I didn't know existed inside me. I thank GOD everyday for my amazing little boy.

Matthew-
Mommy loves you more then you will ever know. You have brought such joy to our family and having you has made our family complete. You are a true miracle in every possible way. We never thought we could have you, and you surprised all of us. You came out fighting and you continue to do so. You are the happiest baby, you think your big brother is the best thing ever, and that just melts my heart to see the two of you together. I was not sure throughout my pregnancy if we would see the day you got to interact with your big brother and I am forever greatful that you did. I am looking forward to the man you will become. I know in my heart that you will do something amazing and you will make us so proud. You can do anything you put your mind and heart into. We Love you so much baby boy. Happy First Birthday. I hope to make it extra special for you. I just wish you could eat cake or ice cream to help out with that. We will make it our biggest goal for the following year to get you eating and to be able to walk.
I love you with all my heart,
Mommy

Happy 1st Birthday Matthew!!!

A Few Pictures of the Boys!!

What's been happening???

Sorry for the long breaks in between posts. I have had a few things going on lately, just can not seem to find the time to write. So here is an update...

We took a road trip to Idaho to visit family. It took up 16 hours to get there. We decided the best way to do the drive would be to leave in the late afternoon and drive ALL night. Well our plan worked for the most part (well for the boys anyways). We were exhausted when we arrived. It was a good trip and we enjoyed all the time we were able to spend with family and friends.

When we got home Finn came down with a cold and I did everything possible to keep him away from Matthew, well it didn't work. Matthew came down with it too. Finn ended up with an ear infection so he was put on antibiotics. His cold only lasted about 4 days. Well Matthew is another story. I know I have said from the beginning that Matthew can not get sick and some of you may have wondered what that means, Well here is what it means... Matthew came down with a cold and went to the pediatrician 3 times and ended up on antibiotics, steroids, and albueteral nebulizer treatments. So the same cold that Finn had totally knocked Matthew on his butt. He coughed and coughed and coughed for about 4 days. Poor baby :(. He is finally on the mend Thank Goodness. During all of this he just so happened to have appointments with Cardiology, Pulmonology, and GI. He had an Echo and an EKG and they all came back unchanged. Which is good for now. I am hoping that they eventually change for the better. He has what the call a PDA Patent ductus arteriosus. You can read about it here http://en.wikipedia.org/wiki/Patent_ductus_arteriosus The doctors call it cosmetic for now and they are not concerned with it. This is something he was born with. They will just keep watching it to make sure it doesn't get any bigger.
When we went to the pulmonologist he was actually pleased with how Matthew was doing considering he had a cold. He said he heard wheezing at the end of his breath, but it was very minimal. He said that the fact that this cold did not land him in the hospital says that he has some reserve lung. This is a good thing, but with each illness it can compromise that good lung development as well. He also said that it looks like his Pulmonary Hypertension is gone. YAY for that, But I will not hold my breath that it won't come back. He has had slight PH since he was discharged from the hospital.
The GI doctor was pleased with his growth. So she is going to leave him on infant formula for another 3 months and then discuss what we will be feeding him after that. He has made it to the 60% for weight and 25% for height. He is slowly climbing the charts. Go buddy Go!!!
So overall he had pretty good visits with all his doctors.

We have just been staying busy with therapy, and entertaining two kiddos. We are at the age that we can not do a ton with the boys. Everyone keeps asking if we have been to Disneyland yet and the answer is no. I am not going to spend a bunch of money just to push a stroller around. They are not quite big enough to enjoy it yet. So we go do things they can enjoy like go to the beach, the zoo, and parks. This is enough to keep all of us busy for now. Nothing else too exciting happening here. I will post again for Matthew's 1st Birthday which is less then a month away now. WOW!!!! Where has the time gone?!?!

J

A Little Bummed

Matthew had another appointment with his Pulmonologist today and we were hoping that we might get some good news about his oxygen. Let me just catch you up a bit, at his last appointment the Dr said he would have taken him off, but he wanted a current echo and x-ray. So we got all of that taken care of and today he said he was ready to take him off his oxygen considering his echo and x-ray looked good. He was saturating at 99% today to boot. The Dr asked about his breathing (wanted to know if he always breaths heavy) Yes, he does always breath heavy. He works very hard to breathe, but is not uncomfortable. With that being said he has decided to leave his oxygen on him for the time being and gave no indication of a time to shoot for to come off of oxygen. The Dr said he needs to get bigger and stronger and so do his lungs. Once his lungs get stronger his breathing should slow down to a more normal range. He currently breathes at a rate of about 50 breaths per minute. Normal for an infant is between 30-40 bpm. This bummed me out a bit, as I was hopeful we would be oxygen free today. Oh well I guess I am glad that they are being cautious. I would rather be safe then have to try to catch up if he came off oxygen and had a set back. We are used to having it on him all the time so it will not any different then what we have been doing. This is just one of the many things that reminds you that the CDH beast is still lurking around the corners. The good news is that he doesn't want to see him for two months. His doctors visits are getting a little more spaced out, not a monthly thing. That has to mean he is doing things right. Matthew will not see any other doctors until September then he gets to see all of them that month. So we may remain quiet until then.

Cheers,
Jaime

"Moving" right along

This picture is a great picture to show the progress he has made in 6 months. The first picture was when he was 2 days old, the second one he is 6 months. He is my amazing little miracle.

 A Lot has happened since my last post. First off we packed up our family and moved to Southern California from Boise, ID. This was a hard decision as almost all of our family is in Boise. We just felt that this was the right decision for our family at this time in our lives. Jim traveled about 50% of the time, with Finn getting older and noticing when daddy is gone and Matthew's extra needs we felt that he needed to be home every night for them. That is what this move has allowed, daddy to be home every night and not having to leave. 

One of the things that made it a little harder to think about was finding ALL new doctors for Matthew. We had a great team of Doctors in Boise that were all in the same building, in the same wing. Talk about convenient. He saw a surgeon, and pulmonologist and a cardiologist all in the same place. He also had PT and OT weekly that came to the house. It has been quiet the experience getting New doctors lined up. I finally got an appointment with a pulmonologist here and he refered me to the other doctors that he will need. We saw the Dr. on Monday and he thought Matthew looked great. He said he would have taken him off his oxygen if he had a recent Echo and x-ray. So I have those scheduled in two weeks. I am hoping that his pulmonary hypertension is completely gone. Since he has been out of the NICU he has had 3 or 4 Echo's done and he still has very slight PH. I am just hopeful that it is gone. We see the pulmonologist in 6 weeks so we will have to be patient and see what comes of the echo and x-rays and what he says. I did ask the Dr if we needed a pulse ox at home and he said no. That was a relief to not have to worry about. We had one in Boise, but we had to switch Medical supply companies so we had to get all different stuff. A pulse ox was not part of the supplies the new company supplied. 

Matthew has been doing great health wise. He is making slow but steady progress with his developmental milestones. He still does not sit up and he is 7 1/2 months old. I am not worried about that as much as his feeding issues. He is still very orally aversive. I give him little tastes of rice cereal or fruit like applesauce. He will take little bits of it then he gags after a few bites. Jim gave him some ice cream the other day and he shuddered so bad. I guess he is not like his dad that way, not an ice cream lover. 

Matthew has the best personality, he is the happiest, sweetest little boy. He smiles all the time, especially when big brother Finn is around. He can not get enough of him. They are too cute together They both just sit and laugh and play all day long. It is the best feeling to just sit and watch your kids and the pure unconditional love they have for each other. It just melts my heart. 

I think I have caught up this blog for now. I will post after his other Doctor appointments and what I find out about his oxygen. 

Jaime

Long over due post

I just realized that it has been quite awhile since I have posted. Sorry about that. I guess no news is good news for the time being. Matthew has been doing really well so far. He did have to have two minor surgeries on his abdominal incision. I have been fighting his incision since he came home from the hospital. I think in the four months he has been home he has only missed about 4 weeks of not going to see the surgeon. They finally decided to go in and see if they could find any sutures in his incision. The first surgery four weeks ago they did not find any, but that spot is now healing...They went in about a week and a half ago to do the other part and they did find a suture that time. Now both spots are healing... YAY!!!! I can not tell you how happy this makes me. I was afraid that I was going to be fighting this forever.

We had his monthly follow up appointments with all of his specialists and they said he is making great progress. Unfortunately we are moving away from our hometown here in Boise and moving to southern California, so we will have to find ALL new doctors for Matthew. This makes me a little nervous. So if any of you read this blog and are in the So Cal area and have good doctors I would take any and all recommendations of doctors. If we were not moving the doctors would start to wean Matthew off of his oxygen and his meds. That was great news to hear. They are going to leave him on everything and let the Doc's in CA decide what they want to do.

Matthew continues to gain weight, thanks to him finally tolerating his formula. He is still below the 10th percentile for height and weight, but he is making good progress. He is still not taking anything by mouth, I did take him to have an eating evaluation today. They said to just forget about trying to give him formula by bottle and go straight to purees. So we can start to see if we can get him interested in food this way. I really hope that he likes real food and decides it is a good thing. He is okay with things in his mouth, just not liquids. You can put toys or fingers in his mouth and he tolerates that just fine. He loves to chew on his own hands. So his oral aversion is not as severe as they were originally thinking. More good news. So overall He is doing really good. We just need him to continue to tolerate feeds and grow. Hopefully we will continue to have more quiet times from the blog. Because we like the no news is good news. If I would have something to post everyday I am not sure I would like that situation. So until I have more news for any of you take care.

Hospital Tour

Last Monday morning I went to get Matthew up and he was soaking wet. I checked his feeding tube adaptor and everything wast closed properly. So I thought that maybe he had had a VERY wet diaper. I went to pick him up and the top of his pajamas were soaked as well. I immediately opened him PJ's and saw his feeding tube laying on his chest. It has somehow some out during the night and he never mad a sound to let us know he was getting soaked. I called the surgeon's office and they told me to meet them at the ER. So we got to the ER and got checked into a room and my phone rings, It's the surgeon asking what room we were in so I told her and she appears about 3 seconds later. She is an on-call surgeon that is from California. I have actually met her before so I knew who she was and she knew Matthew. The nurses in the ER look at her like she is crazy because they do not know who she is. Then the next thing we all know is that Jim and I are holding Matthew still while the Dr is trying to get his hole reopened to insert a new g-tube. She looks around and ALL the nurses had abandoned us. She said I see the nurses didn't want to stick around and they don't even know who I am. Made us feel real good about that hospital. (It is a different one then the one he was born and in the NICU) The Dr finally got the hole reopened and a new tube in and we were on our way. The whole process only took about an hour. Pretty impressive for an ER visit.

 We get home and Matthew is still pretty fussy all day and that night he wouldn't sleep anywhere but in my arms in the recliner. Needles to say neither one of us got much sleep. He cried most of the night so the next morning I called the surgeons office back and they told us to come in. They were not seeing patients that day, but they would see us. We got the office and the Surgeon who had done all of Matthews previous surgeries was the surgeon. He looked at the new button (g-tube) that was put in and said he thought it was too tight so they decided to put a different kind of tube in. He had a mic-key g-tube and they wanted to put a mini in. This requires him to go to the PICU to have this done. We thought about it and decided we didn't want to go through anymore sleepless nights due to his discomfort, so we headed to the PICU at the hospital. We got checked in there and the surgeon and his NP showed up a few minutes later and got the new button put in. We were then sent on our way. This process only took about 1 1/2 hours total. Not too bad considering they actually had to admit him into the hospital. Shortest hospital stay on record I think. I hope they stay that way. We got Matthew home and he was much more comfortable that day/night and continues to be. It appears that he needed to tour the other hospital in town. He needed us to see the ER and the PICU in two days. Sure glad he decided to do that. :)

He has been doing fine since then. We have a follow up appointment with the Cardiologist and Pulmonologist next Monday so I will let you know how those appointments go. We are hoping to start to see his Pulmonary Hypertension going away. He still has a very mild amount so hopefully they will see it is getting better.

I am also hoping Matthew doesn't decide that he needs to see any other Doctors anytime that they are not scheduled, But we all know CDH babies have a mind of their own and will do what they want.

Until the next update,

Jaime

Trucking right along

We had three appointments this morning, first one was with the pediatric cardiologist, then the pediatric pulmomologist and finally the surgeon again. The cardiologist did another echo on Matthew. He found everything to be good with the heart, things are still a little squished looking, but that is to be expected. Matthew still has a little bit of pulmonary hypertension, so he will continue to be on oxygen for approximately another 5-6 months. This is the best vasodilator that there is so it is for his PH, rather then him actually needing it for oxygen. The pulmonologist saw him today for the first time. He thought Matthew looked really good for all that he has been through. He is still a little concerned with how fast Matthew breaths, but doesn't feel that they need to do anything different at this time. He is keeping all his medications and oxygen just the same. I am pretty sure Matthew would disagree with them about the oxygen. He thinks it is not necessary. He either puts the cannula in his mouth or up by his eyes. He thinks it works better that wasy. :)  The Dr. is going to let him outgrow his medication and see how he does with that. Both Doctors want to continue to see him on a monthly basis at this point and time. They both said he is doing good so far and to just keep doing what we have been doing.

We saw the surgeon again because we can not get his abdominal incision to heal. It has been almost three months since that surgery. It could have a little to do with where the incision is and how he breathes. The incision moves a lot. So for now they put him back on antibiotics and on a prescription strength triple antibiotic ointment until it is completely healed. Hopefully we can get the incision to finally heal. They are pretty sure it is just his body reacting to the sutures that were used. His body does not like them. They do not feel they need to go in and remove them at this point. So we do not have to go back to the surgeon until the end of April unless this incision keeps acting up.

Update on day to day life:
Matthew is still not taking anything by mouth. He will take a drop or two of formula and then gags. So we have therapy twice a week to hopefully get him eating by mouth. They have said that this will be a long road, but they are confident that he will do it. Even if it is skipping the liquid stage and going to the solid stage when he is ready. He continues to gain weight, not quite as much as they would like this last week ,but he is still gaining. He is a pretty happy boy most of the time. He is getting better at not needing to be held all the time. I can lay him on his play mat or set him in his bouncy seat and he is content longer now. Which gives me a little more freedom. He is still on the feeding pump eating every three hours during the day and continuously at night for 10 hours. It has helped with our sleep at night. He is getting better at sleeping through the night. He still wakes at least once each night and you have to go thump him bum for a couple minutes. We can not really let him cry for extended periods of time because of his PH, if he cries for long periods it can make his PH more severe and that is not a good thing. So he is not allowed to cry for very long. This is a little different from what we did with Finn. So it has been a little bit of an adjustment. Other then that he is doing really good and is a pretty happy boy most of the time. I am just so thankful that we have had him home with us for over a month now. the time we spent in the NICU seems like a lifetime ago now.

Thank you for your continued thoughts and prayers,
Jaime

Asking for Help

I have been getting the question a lot. What can we do to help? When I am asked this question I do not have an answer. It kind of catches me off guard and I can not think of things that people can help with. So I thought I would think about it ahead of time and post it here. This is a very hard thing for us to do. We are not the type of people to ask for help. It is hard for us to even let people help out. I have started to come to terms with it and have realized that it is okay to have help.  I am still probably not going to call people up and say hey come help me. I just can not seem to get over this part, but if you are wanting to help out and are free and have nothing better to do then this is what we could use help with...

When Jim is out of town I could use a little break during the week either to go to the grocery store, or get other needed supplies for the house or even tap a little nap. Especially if Matt continues to not sleep very well at night. 

If anyone feels so inclined I could sue help with vacuuming, mopping, sweeping and all that good stuff. I am able to stay on top of dishes and laundry. Even if it may appear that I am not. I can do a load of laundry a day and stay on top of it pretty well. I am able to do the dishes after meals and when preparing Matt's feeds. So I don't need as much help with this stuff.

When Jim is gone I could use a meal or a visitor to come by to make sure I have not gone completely insane. As I am not able to get out of the house. We can not go out in public (i.e. grocery stores, malls, bank etc..) We can go to other people's houses if and only IF no one is sick. 

I think this pretty much sums it up of what I could use help with. Again, I will probably not call you to ask for help, so if you have a few extra minutes in your busy days and want to come by and help it would be greatly appreciated. 

So that is pretty much the gist of it. I hope this helps anyone who wants to help and doesn't know how. You can also just call and come by anytime, we are more then likely home. 

Thank you in advance,

Jaime

Surgeon Follow-up

Yesterday Matthew had his first follow-up visit with the surgeon. She felt all of his post op stuff looks good and nothing to be too concerned with at this point except for one minor thing...We have been into the office a couple of times in the last couple weeks due to his abdominal incision having a bit of an issue. They say that his body is having a reaction to the sutures. They fins this kind of odd since it is almost 2 months post op. They have been wanting to avoid putting him on antibiotics, but decided this was necessary at this point. They were not having me put any ointment or anything on it and now they are. So hopefully all of this will make his incision heal like it should have.

 I also had to replace his G-tube by myself yesterday.( with the instruction of the surgeon) It was not as bad as I was anticipating. It was really pretty simple. They wanted to make sure I know how to do it so if it ever comes out. I now feel confident that I can change it if I ever have to in an emergency.

We had a peditrician appointment last week and she does not want to see him until he is 4 months. I am taking that as a positive thing. She does call every week to check on him. She just wants to make sure he does not go into the office any more then absolutely necessary.

We have our first follow up appointments with the pediatric cardiologist and pediatric pulmonologist in two weeks. I am very curious as to how those appointments will go. I have met the cardiologist briefly at the hospital but we have not met the pulmonologist. I am hoping that they have positive things to say. These are the doctors that will let us know how long Matthew will be on oxygen and how many medications he still needs to be on.

As you can see I stay quite busy with just Doctors appointments, not to mention all the home care we are receiving. We are currently receiving in home care for the following..Nursing, Physical Therapy, and a dietitian. Nursing comes once a week and the physical therapist is coming twice a week. The therapist is working with Matthew trying to get him to be able to eat orally. She says it looks like it is going to be a long road to get him to where he needs to be. That seems to be the story of his life.  Speaking of in home care I will have someone arriving any minute now so I need to say see ya later..

Jaime

First two weeks

I can not believe that it has been two weeks since Matthew has been home. He is doing amazingly well. My days are really busy just taking care of him and Finn. Matthew has to be fed through his g-tube every three hours, so that takes up a good part of my day. Jim took off the first week we were home. That was a huge help. Matthew was not sleeping more then 20-30 minutes at a time at first. You can only after being in the NICU and being poked and prodded every 30 minutes, you wouldn't sleep either. He has been transitioning quite well since the first couple of days. He now is sleeping for about five to six hours a night. (we are not due to having to feed him)

He came home on oxygen, which we knew he would. That has been a little challenging because he is on such a small amount that his cannula tube can not be very long, so when you want to walk around the house with him you have to take his oxygen tank with you. We are getting really good at doing things one handed. He has a home care nurse that comes out once a week to weigh him and check all his vital signs. He also has a physical therapist coming out two times a week to help with getting him to feed orally. Kids that have been intubated have a tendenancy to have oral adversions. He falls into that category. However he really like his pacifier. I have never been one to want my kids to rely on a pacifier or their thumbs, but with Matt this is really okay with me.

Last week after being home almost a week Matthew's abdominal incision started to get red and irritated looking. It also looked like it might have some gunk in it. The home nurse had come out that day so I showed her and she told me to contact the surgeon right away. I did and got into his office within 2 hours of calling. They lanced the spot and there was definitely gunk in there he had a little bacteria in it. They are pretty sure it was a stitch that had absessed. They were asking if he had been retching or had any fevers. He had not had a fever, but I told them he retched with feeds. They asked how we were feeding him and we explained that we were gravity feeding him. ( this is putting a syringe into his g-tube and filling it with formula and letting gravity force it into the tube.) The surgeon was not happy with this way of feeding and especially since it was causing him to retch. Retching can cause his fundoplication to come undone and we do not want that. So they ordered a feeding pump that you can set the amount and for how long you want the feed to go. This has helped a great deal with his retching. He still does every once in awhile, but not every feed.  So that is a good thing.

We have only been to see the pediatrician once since he was discharged on the 22nd of December. She has not felt that she needs to see him yet. Our next appointment with her is next week. Then we have a follow up with the surgeon in two weeks and in a month we have an appointment to see the pediatric cardiologist and pulmonologist. We have had strict orders for all of the doctors to not take Matthew out into public or for that matter around groups of people. So we have been pretty much homebound since he came home. We have not had many visitors either.

Speaking of having visitors we are welcoming them, but there are strict guidelines that must be followed.
First and foremost You can not be sick AT ALL. Not a sniffle, sneeze, cough, sore throat or any other symptoms. If you even have a slight thought that you might be we ask that you please stay home. Also you will be asked to wash and sanitize your hands before touching Matthew. Last but not least you will be asked to wear a mask whether you are sick or not. A lot of times you have been exposed before you know you are sick. So if you meet all of these guidelines and would like to come visit we would love to have you. I know this may seem a little extreme to some, but Matthew is still very fragile and we do not want him to go back to the hospital.

Sorry for the long post, just thought I would give an update as to how life at home has been.
We are loving having him home and I will take all of his equipment to have him home. He seems to be enjoying being home as well. He smiles and talks all the time. Oh and his big brother LOVES him. He has to give him a kiss every night before he goes to bed. I was certain that he was going to tell us to take him back the the hospital, but to my surprise he likes having him home.

Thank you for keeping up with us,
Jaime

Matthew is Home!!!!

So this is the post I have been looking forward to since the day Matthew was born. After 58 days in the NICU Matthew is home.

 Here is a little about how it all happened. Yesterday morning Jim was up doing Matt's 9:00am feed and the Doctor came in and told him the plan was for Matt to go home tomorrow. (Thursday Dec. 22nd) So I frantically got bags packed for myself made arrangements for Finn to stay at the grandparents for two night and also found grandparents to watch the dogs too. I managed to get everything done and get to the hospital at about 12:30pm. I had to keep reminding all the nurses to ask the Dr if there was still a final Echocardiogram that need done. Sure enough there was so he had his echo done at about 3pm. Then we got to spend the rest of the day waiting for the on-call pediatric surgeon to come change his feeding tube to his button and pull his broviac (central line) out. She arrived at about 7pm to do that, and then we spent the rest of the evening in a private room in the NICU. We roomed in with no monitors to watch. I did not sleep very well at all, but that is why we decided to room in. Matt did really well and slept most of the night. I guess having a feeding tube can be a positive thing, when you don't have to disturb the baby to eat. This morning the Doctor came in and checked on Matt then we started the discharge process. We officially left the hospital at 12:30pm. Since we have been home things have gone great. It is just myself, Jim and Matt right now. We thought we needed a little break in time. So no dogs, big brother, or visitors today. It has actually been a nice change from the crazy life we have been living.

Now that we have Matt home my life will be extremely busy with LOTS of Doctor appointments and just having a 2 year old and an infant. I am looking forward to every minute of it.

I will try to keep you all updated as I have time, but there are no promises on that.
Thank you for all your thoughts and prayers we ask that you continue to keep us in your thoughts and prayers. We have made it a long way, but we still have a long way to go.

Jaime