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