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