Looking over the last year and blessings for the New Year ahead!

We are looking forward to Christmas and the New Year. We pray that everyone has a safe holiday and that God would pour his blessings on them throughout the next year!

Looking back, this last year has been a wondeful one. Mateo only had 1 hospitalization, which I don't even count since it was only for one night and it was unnecessary. He has had no surgeries or procedures and all his cardiolgy visits have checked out wonderfully. Our only issues we had to deal with was his teething. It seemed that every time he got in a tooth, he'd get sick with a cold or fever. So, every month, he got sick with something. But on December 21st, his final tooth came in....at least, until the 2-year molars start up. So we're hoping for a healthy 2010!

At Mateo's last cardiologist appointment (November 9th), his doctor said that his heart function is great and there's no valve leakage, but that he will most likely have the Fontan surgery in the upcoming summer. Prayers that it all goes well!

The one sad happening of this last year is the passing of Mel's father. He passed away suddenly on December 12th of cardiac arrest. It hit the family hard because it was not expected. Mel just got back from being with his mom for a week and a half to help with laying his dad to rest. It was heartbreaking and we hope to keep our happy memories of him all life long. Mel's mom will be moving in with us next year, possibly February. I am excited for her to get to know Mateo and for him to get to know his Grandma.

SO, we have some big changes for next year and we are hoping for the best out of all situations. Please keep us in your prayers, we'll be doing likewise for you!

Merry Christmas and God Bless!

Getting so big!

I decided to weigh and measure Mateo today. He is 31" tall (almost 3 feet now!) and weighs a good 24 pounds. He has gained almost 1 1/2 pounds in 2 weeks. That's awesome! He had lost so much weight from when he had the swine flu and has finally gained it all back, plus some. He's been eating a lot more the last few days (finally) and just doing much better all around.

I can hardly believe how much he is learning lately. It seems that he is picking up on things and putting it all together with lightening speed. He is "talking" a whole lot more than he used to. Granted, its his own jibber jabber that neither Mel nor myself understand, but its cute and its all the time. One of the purest sounds I can think of, aside from Mateo's contagious laughter. It makes me smile just thinking about it.

He is also figuring things out faster and with much more ease. He used to get so frustrated when something wouldn't work the way he wanted to. He still gets frustrated easily, but its a lot less frequently. He works on things until he figures it out and when he does.....he gets SO excited! He had a toy out tonight.....one of those toys with the buttons, pull switches and knobs that, when done correctly, makes a little toy pop up........every time he figured out how to manuever one of those knobs or push one of the buttons he would do a little dance when the toy popped up. It was hilarious. Mel and I had a good laugh over it all.

Mateo seems to be understanding verbal commands a lot more too. I am always amazed when I tell him to do something and he does it right away. Sometimes I'm shocked because I hadn't realized how quickly he was catching on to an actual language. I told him today to bring Mama his book and I would read it to him. He immediately picked up his book and walked over to me, handed it to me and crawled into my lap. Now, I'm sure he didn't understand EVERYthing I said, but I know he understands the words "book", "Mama" and possibly even "read"....and I just find it so neat how he is putting all these things together and understanding it all. It absolutely fascinates me. I think I get as excited over these things as he does....if not more!

The only down side to all this (besides the fact that my baby is growing up!) I have a feeling that all this learning is keeping Mateo wired. He has had so much energy lately. I don't mean to complain, because I LOVE knowing he has energy. No energy can be a bad sign for heart function. But he is SO on-the-go all....day.....long. He has been waking up at night, wanting to play (like around midnight....so NOT play time for mommy). When we put him down for bed at night, he cries and cried and cries like he's not tired and doesn't want to go to sleep. Because of this, he's been sleeping in til 10:30am (usually he's up by 8am), taking late naps (or no nap at all) and not wanting to go to bed until 11pm. His whole schedule is completely off right now. BUT....he's eating good. LOL I am so happy about that right now! I think Mateo is just learning so much he doesn't want to stop. He has realized how much exploring he has to do...and I really am looking forward to doing that with him....even if it means little sleep for now :)

The Dreaded Swine Flu

Yep. Mateo had it. Swine flu. Since he is in the high risk category, I was really worried about him getting it. It ended up not being a big deal for us.

Mateo came down with a low-grade fever and a cough. I didn't think too much of it since one of our friend's daughters had the same symptoms and tested negative for flu and swine flu. But the following night, one of my other friends called to tell me her baby tested positive for swine flu....and she had the same symptoms as Mateo. So I figured I better be "safe rather than sorry" and I took him in to see his doctor the next day. Of course, Mateo tested positive for H1N1. His fever was already gone but I could tell he didn't feel very well. I went to 3 different pharmacies looking for Tamiflu before I finally found one that hadn't run out. Anyway, Mateo was back "up and running" within 24 hours. It wasn't the life or death situation that the public is being warned about. I realize that for some people, it has been....but I guess we were lucky.

Unsure of the future

We have recieved orders from the military (my husband serves in the Air Force) to move by the end of this year to Clovis, New Mexico. I looked it up and that AFB is in the middle of nowhere. My husband called and found out that they don't have a medical facility there that can support Mateo's medical needs, so this is all very bad news. Last year, we were given orders (that we actually wanted!) but had to have them cancelled due to Mateo's fragile condition at the time. Now we need to have these cancelled due to it not being a place that has a children's hospital. my husband is putting in a lot of time trying to get the necessary paperwork done. Mateo's doctors have all been more than accommodating in getting the letters, statements and signatures that we need. We met with the medical board on base last week to discuss all of this. But they don't have the authority to make any decisions, so we are still waiting. If we had to go, we have less than 2 months to sell our house and find Mateo a cardiologist.

We feel it would be in Mateo's best interest to just stay here in Tampa until after his next surgery. His doctor said it would most likely be sometime next summer since they don't like to operate in the winter if its not truely needed. I would really hate to move right now and try to find all new doctors and surgeons before next summer. Finding someone you trust with your son's life is not an easy task. In fact, the closest facility that could take Mateo is almost 2 hours away! I feel that things will work out though. Everyone on the base have been very helpful in getting us what we need and I am just praying that all the paperwork goes thorough without any serious issues!

Progression

This summer has been so busy! We have had a lot of fun being with friends all summer long. Mateo is almost a year and a half already....just a month left before he reaches that mid-year mark! I can hardly believe it. He is growing so fast and learning so many new things. He has been practicing his walking all summer, and he has gotten good :) He is practically running now. I had to go up a size in diapers too....and we were able to turn his carseat around so now he faces forward. The day he first got to ride around forward-facing, you could tell he was excited. He looked like he felt so special and proud of himself. I loved watching him (Mel was driving).

Mateo spent a lot of time this summer swimming in our friend's pool. He loves to float around in his "crab floatie" and kick his legs. He gets excited when all the kids start splashing around. And the other kids are so good with Mateo! They include him in on the fun and are very gentle with him. It makes me not feel like I have to worry so much.

We had a few visitors this summer too. My best friend came for a week and gushed over Mateo and his cuteness LOL Mateo loved her and had a lot of fun playing with her.
In August, we flew up to Wisconsin to see my family. It was Mateo's first plane ride and he did excellent. No problems. I was worried about needing Oxygen, but he never even turned dusky. He slept through 1/2 the flight and never even shed a tear during descent...so I guess his ears never bothered him.

In Wisconsin, he got to meet his Uncle Jake and Aunt Amber and Cousin Dawson for the first time. Mateo had laid claim to Grandpa within hours of being there. In fact, he didn't like my dad holding Dawson (4 1/2 mos at the time) either. He whacked Dawson over the head with a toy while my dad was hold him. It sure was funny....but naughty LOL

Mateo LOVED being able to run around outside. The weather was a little cool, but nothing a light jacket didn't fix. My parents have a large yard and Mateo ran around in the field and the front lawn. He absolutely loved my parent's animals.....the dog and cat. He couldn't get enough of them. We got some great pictures.

Florida has been so hot and humid this summer, its been hard to get out of the house to do anything. The park is off limits because of the heat. Now that school has started back up, most of our pals are either working or in school, so I think Mateo has gotten a little bored. But we are starting back up at the library weekly for story time and I try to get a few projects in here and there for him. His attention span is so short, its hard to continuously keep him occupied!

But Mateo is doing well. We couldn't be happier right now and his health seems to be as good as can be for now. Doctors are thinking his next surgery will be scheduled for sometime next summer. Too soon if you ask me!

Test Results

On June 26th, Mateo had a sedated ECHO and a 24-hour holter monitor performed. ECHO is short for Echocardiogram. Its an ultrasound movie of the inside of the heart. It can detect nearly any problem with the functioning of the heart muscle. Mateo has these done regularly at his cardiac appointments. However, he is usually so wiggly, that the technician has a hard time being able to take the time needed to check every part of the heart that the cardiologist needs. So that is why they scheduled a sedated ECHO.

We went in around 8 am that Friday to get started. They gave Mateo a little Valium orally and within 20 minutes, he was sound asleep. He definitely fought to stay awake, but eventually had to give in. The technician came in and took about 45 minutes to get all the pictures that she needed. Its very interesting to be able to see the inside of your own child's heart like that. It looks like an ultrasound that an expectant mother would have, so without the tech pointing everything out, I most definitely wouldn't have known what I was looking at!

Mateo came out of his deep sleep after about an hour and then we took him over to the cardiologist's office to get fitted for his holter monitor. A Holter monitor records every beat of Mateo's heart for 24 hours. Its usually used to make sure that a child isn't having dangerous heart rhythms that need more attention.

Mateo had a bunch of little stickers put onto his chest and abdomen, and then lead wires came off those stickers and attached to a little recorder that looked like a cassette tape player. He actually did really well with it. He didn't pull at the wires and he slept through the night with no problems. I thought it might irritate him because it was a little bulky, but he surprised me. Within that 24 hour window, I had to record what he was doing...whether it was sleeping, crying, eating or playing....so that if there was a change in his heart rhythms, the doctor would know if it was caused by something he was doing or if there was really a problem.

I got the results from those tests earlier this week. It was all good news. Mateo's cardiologist said that everything looked great. He had normal heart function (as normal as a boy with 1/2 a heart could be!). There was no tricuspid regurgitation and no aortic regurgitation. (Sometimes, the valves that control the direction that the blood flows through the heart don't work properly and because of that, some of the blood that should be moving forward, flows back the wrong way...in that case, when its serious enough, those patients end up needing surgeries to replace those valves). She also said his arch looked really good....it wasn't narrowing. Results from the Holter monitor were also good. She said his rhythms were completely normal. That report from the doctor was a huge relief and Mel and I feel so much better about Mateo's heart issues right now. His doctor even made his next scheduled appointment 6 months away instead of 4! To me, that says "things are great, nothing to worry about, see you in 6 months". LOL

We were also given the "okay" to fly to Wisconsin in August. I was a little worried about Mateo flying, but his doctor says he will be fine. So that's the plan! We are excited and looking forward to this trip.

Growing Little Boy!

Mateo is growing by leaps and bounds. Every day there is something new! I love to watch him develop and learn. He loves to analyze everything. You can practically see the wheels turning in his head!

Mateo has started walking. He's not really good at it yet, but he's getting there. June 15th, he stood by himself and then took a couple tentative steps on his own. A couple days later, he walked across the living room. Just last week, he started pushing himself up to stand instead of pulling up on a piece of furniture first. He loves it. He gets so excited when he gets those walking steps going. He has a grin from ear to ear the whole time he's up on his baby feet. He KNOWS he is doing something new and neat....and I'm sure it helps that we are there cheering him on the entire time. He likes to do anything that results in cheering and clapping.

A couple of weekends ago we celebrated Independence Day. Last year was Mateo's first 4th of July, but he was in the hospital. So this year we made it special. We BBQ'd with some friends and afterwards went to watch the fireworks. Mateo did so well. He wasn't scared at all. Not even a flinch! He seemed to really enjoy watching them...he couldn't take his eyes off of them.

Mateo also started having his 1st year molars break through. He has 3 of them right now and I have a feeling that 4th one will be along any time now. He has 9 teeth all together. He has such a hard time with them until they break through. I've been giving him a toothbrush to chew on. It seems to have helped.

Mateo hasn't started talking yet (other than mama and daddy), but he is imitating a lot of sounds. He has most recently learned how to "roar" like a lion and "oo-oo-ah-ah" like a monkey. He's gotten pretty good at it.

Next month, we are planning a trip to Wisconsin. It'll be Mateo's first flight and I'm a little nervous. I don't personally like flying, so to be going with a toddler isn't exactly first on my priority list. But I know that once we're there, it'll be a lot of fun. He can ride tractor with "Papa" John and play with the kitties and meet his cousin, Dawson, for the first time. It's always a good time when family is around.

Memorial Day Weekend

This last Memorial Day weekend was so much fun. Saturday we didn't do much since Mel got called in to work. But Sunday, after church, we took Mateo to the Florida Aquarium. It was so cute. He seemed to really like looking at all the fish. He usually gets all excited with the little fish aquariums at Walmart, so we figured he would enjoy the floor-to-ceiling aquariums. He liked all the wildlife, but I think Mateo might have enjoyed just watching all the people there a little bit more. He is such a people person. He is very much the little observer. I wanted to take him out to the water play area, but it was so windy and looked like it was about to rain. So...maybe next time.

Monday, we took Mateo to the Lowry Park Zoo in Tampa. Neither Mel or I have ever been there before. Apparently, this zoo was voted #1 in the country by PARENT magazine. It was fun though. Mateo isn't quite at the age to appreciate the animals or understand much about them...but again, he enjoyed "people-watching". I look forward to when he can understand a little more and get excited about all the animals.
It was so HOT that day though. I was sweating buckets and Mateo was drinking tons of water. At the end, they have a little play area with water bubbling up out of the ground. We put Mateo in the water to cool off a little bit. He seemed to enjoy that a lot. All-in-all, we had a really good time. Although, I think the San Diego zoo is better than Lowry. But it was still a nice zoo...next time we hope to be able to make some of the shows. Since it was a holiday weekend, it was pretty packed and we didn't feel like fighting the crowds for a place to sit or to be able to see what was going on. We just took our time walking around and it turned out to be a really fun, family day.

Birthday Boy Continued.....

The Saturday following Mateo's birthday, we threw a huge 1st Birthday party for him. We rented a shelter at one of the local parks and invited EVERYONE that had been so supportive of us and Mateo while he went through the rough spots. People who bowed in prayer regularly for us. People who sent cards and meals and thoughts and wishes our way. People who visited at the hospital and sat with us through Mateo's surgery. People who were fundamental in his medical care, therapies and development. People who just gave us a shoulder to lean on and cry on. It was more of a 'thank you' to these people than a birthday party for Mateo. We just wanted to celebrate with these people and show them that all their love and care and concern hadn't been in vain. Through all of this, Mel and I grew so much....in our faith as Christians, as friends, in our marriage...and we couldn't have made it through everything without their love and support.

The party was so much fun. We rented a bouncy palace for the kids and ordered a full-sheet cake with jungle animals on it. The monkey represented Mateo, so it had a little red heart drawn on him. One of our friends organized games for everyone and we had lots of food. A lot of people came to celebrate with us. It was a happy day. Mateo, of course, didn't know what to think of everything at first, but he warmed up after a few minutes. There were a lot of smiles, a lot of laughing. I wished my parents could have made it down for the party. They would have really enjoyed it. Mateo was exhausted afterwards, but it was a great day. One that I know I will not soon forget.

Birthday Boy!

Mateo turned 1 year old on April 29th. It was definitely a day to celebrate. Mel stayed home from work. We decorated the house with streamers and tons of balloons. When Mateo woke up, we went into his room singing "Happy Birthday to You!". He thought it was funny. Then we brought him out and he played with the balloons for awhile. He seemed to think the decorations were pretty cool. We had to go out and do some shopping for his party that he was having a couple days later and then when we got home he went down for a nap. Once he woke up, we took him to get his hair cut. It had gotten pretty shaggy. He did great for it. I was worried that he would cry, mainly because he hates it when someone he doesn't know messes with him. He is usually pretty bad with the doctor, so I assumed it wouldn't be much different with a hairdresser. But Mateo watched Mel get his hair cut first, so maybe that helped. Sadly, with every chunk of hair she cut off, he looked less 'baby' and more 'little boy'.
Once we got home, he got to open his gifts. We bought him a little blow up pool and a book about God that came with some children's bible songs. Mateo loves music, so I thought it'd be perfect. Then we lit the candle on his little cupcake, sang happy birthday and gave him his cake. He didn't even eat any of it. He smashed it with his hands and then threw it all over the floor. But it was fun for Mel and me while we laughed and took pictures. And then....it was all over. Over much too quickly. He was now 1 year old and it was time for bed!

Doing so well!

Mateo is definitely doing well, as far as develpement goes. We went to his physical therapy appointment, where his therapist said that she just can't justify seeing him once a week anymore. He has come such a long way in such a short period of time. He's almost walking! So, she moved him to only once a month.

His speech therapist also said the same thing. About a month ago he went from twice a week with the speech therapist to only once a week. Then a couple weeks ago, she decided he really only needed to be seen once a month. So I am very happy to know that Mateo is doing so well, that he no longer needs weekly therapy!

And he IS doing so much! He "talks" all the time. Of course, I have no idea what he's saying, but he just jibber-jabbers all day long. Sometimes, it sounds like he is singing. LOL I think he has started trying to copy certain words that we say. I'm not sure, because its hard to make the words out, but if I say "Yummy" it sounds like he is trying to repeat it...even if it comes out sounding more like "Muma".
The cutest thing I have found him to be doing so far is throwing kisses. And when he throws kisses to people, he says "MUAH!". I love it. He could do that all day and I'd be in heaven. :) He is just learning so much. Before long, he really will be talking! (AND walking, Yikes!)

Easter

Okay...I have a lot to catch up on, so I will have to post a few seperate blogs so they don't get so long! We have been so busy ever since Easter. Mateo had a lot of fun for Easter. We went to an Easter Egg Hunt on March 28th. It was an absolute blast! We got Mateo his own little basket and then carried him around to a few different eggs. He knew enough to pick them up, but it was a whole other thing to get him to drop it into the basket. He preferred to just throw them! All in all, he collected about 5 eggs and smiled and laughed the whole time.

After that, Mateo got to play musical chairs. Mel carried him around the chairs....they made it 1/2 way through before they got "out". Still fun :)

For Easter, which was April 12th, we had a quiet day. When Mateo woke up, his basket was all laid out for him in the living room. I don't think he knew quite what to think at first. LOL He got bubbles, blocks, a stacker, and a variety of snacks. Mel thinks I spoiled him a little too much...but they were things that were age appropriate that I had wanted to buy Mateo anyway, so I figured I'd just get them all at once for Easter. Mateo had no problem grabbing the blocks and flinging them all around the house. He sure likes to throw things! After that, we went to church, came home and just had a nice quiet day. I look forward to the days when I can hide Mateo's Easter basket around the house and we can watch him hunt for it!

Mateo has learned a TON of things since my mom and dad left last week. He is waving bye-bye now. He started clapping yesterday...and he is so funny when he does it too. He has to bang his feet on the floor at the same time :) He has also started hugging things. He hugs his little bear...his blankets...his pants...it always makes me laugh. I like it the best when he hugs ME. He also has started shaking his head "no". Whenever he is touching something that he shouldn't (like TV cables) I always say, "no, no Mateo, no touch" and I shake my head no at the same time. Well, he has started shaking his head no now whenever I do something he doesn't like. Usually its when he is done eating and doesn't want anymore food. I am just so surprised at how much he has learned in one week!

He also had his first play date today. A girl from church has an 8 month old little girl that came over today. As soon as she came through the door, Mateo was so excited! He was clapping his hands and squealing in delight. When she was set on the floor next to him, he had to touch her face and arms and legs...he was just so entranced by her. If she tried to crawl away, he would either follow her or else grab her shirt and pull her back to him. He even hugged her a few times. It was really funny and very cute. He definitely enjoyed himself and was worn out by the time they left. I look forward to exposing him to more play dates like that.

No more ear infections!

All last week Mateo got to spend time with his grandparents. It was a really great week. He got to meet Grandpa for the first time. I think they all bonded pretty well. It was nice having someone else occupy Mateo for awhile and to have daily adult conversation!

We seemed to be able to fit a lot of activity all in one week. We went to Leesburg to visit Mateo's great great aunt. We had visitors from Port Richey, who are long time family friends that "winter" in Florida. We spent a day touring around Sarasota and Ellenton outlet mall. I found him the CUTEST little suit for church. He looks like such a little man! We had a nice afternoon spent at Downtown Disney. Mateo LOVED the Rainforest Cafe. He got a little scared when all the animals started going crazy, but he had a lot to look at and stimulate his little mind. Grandma and I got to do a little shopping on Saturday and then spent the evening with some good friends of mine and Mel's. Unfortunately, it all came to an end much too quickly. They left yesterday, and now I'm a little sad and pouty...probably will be for the next couple days.

Mateo saw the pediatrician on Wednesday. His ear infection was gone and he passed all the "tests" for his 9 month evaluation. All looks good! However, this week he seems extremely cranky. I think he is getting more teeth in. But he is also touching his ear every now and then also...so I have no idea if he has ANOTHER ear infection, or if the teething is just affecting him. I'll give it a few more days...hopefully the teeth will pop through first....but if it doesn't get better, I guess it'll be back to the doctors to check his ears again. My mom showed me some good points to rub for his ears, but I have a problem with getting Mateo to sit long enough for me to do them. I may have to do it while we're in the car since he can't get away while in his car seat.

Anyway, it was a good week and I can't wait to be able to bring Mateo up to Wisconsin for a visit. Keep praying that all is well with his health and that we don't have another ear infection!

GI Appointment Update

Mateo saw his GI doctor last Thursday. She said everything looks GREAT. The hole that his feeding tube used to come out of has healed up completely. She was surprised that we haven't had any oozing (sorry, sounds gross) from it at all. Sometimes that can happen for a few months following the tube being removed....but its been clean and dry since the day it closed up. She also said Mateo's weight was excellent. He is almost up to 18 pounds. We are to keep doing whatever we are doing to keep him at a healthy weight. Thank goodness the boy likes to eat!

So...we don't see her again until Mateo turns a year old. She wants to help us transition him over to cow's milk. Since he is on the no-dairy diet due to his milk protein intolerance....I just want to make sure everything is good-to-go when it comes to starting him on dairy. I have already bought some baby foods that have dairy in it. I want to break him in easy. It will be nice not to have to buy the special formula on anymore. That stuff is so expensive! Its over $100 for a case of 6 cans...and he goes through 1 can in just a couple of days....we were lucky to find someone willing to give us 36 cans for free b/c her son was no longer on the formula....VERY LUCKY.

Mateo has been learning to wave bye-bye. Its so cute. And he has started putting his lips on my cheek....I think he is giving me kisses. I love watching him learn. I hate that he's growing, simply because I want him to stay my little boy forever....but its so exciting when he figures something out. I can almost see the wheels turning in his head sometimes...he is so intent on learning how to do something. Can't wait for grandma and grandpa to see how big their boy has grown!

Yucky Shots

Mateo got his 2nd to last set of RSV shots yesterday. Poor kid hates going to the doctors office now. He doesn't trust anyone wearing scrubs or a white coat. It seems that lately, every time he goes to the doctor's, he gets shots. Whether its been for vaccinations or his RSV or starting an IV for something. It seems to have gotten out of hand. He was fine while I was holding him, but as soon as they laid him down on the table, he started screaming. She hadn't even poked him yet...he just knew it was coming. And now, he even screams when they check him with the stethescope. However, he did great at the cardiologist's a couple weeks ago. He did great through the EKG and the ECHO.....Iam not looking forward to the days when he doesn't like that either. Tomorrow he sees GI...so no shots...but I have a feeling we won't make it out of there without some tears. He just hates check-ups. Next month is the last month for RSV shots, so I am happy about that, but in April he gets his 1 year old vaccinations....we just can't win. I would love a nice stretch of doctors appointments where he doesn't get any shots. I want to restore some faith in doctors for him instead of always being hurt by them. Its hard for me too....I still tear up every time!

Poor little guy

Mateo gets to see the GI doctor this week for the first time since he had the feeding tube removed. I think that the doctor will be surprised. Mateo is growing so big and eating really well. He has even started on the little puffs from Gerber.

Last night, at church, he was jumping around and playing and he banged his mouth on the pew that was in front of him. He started screaming and I rushed him to the back to avoid being too distracting. When I got back there I looked at his mouth, and sure enough, he was bleeding. I was afraid it was his gums or teeth that were bleeding, but it turns out he just split his lip a little. He was fine a few minutes later and when I got him home I gave him a frozen teething ring to kind of "put some ice" on his little fat lip. Poor kid. He is always falling or doing something to hurt himself. Its almost impossible to keep him from getting hurt during the day...especially now that he's learning to walk and we have tile flooring. Mel said that I need to get used to it because Mateo is a boy...and boys are always getting bumped and bruised. Blah.

We look forward to Mateo's grandparents coming for a visit. Grandpa hasn't even met Mateo yet. Grandma has seen him only a handful of times. That's what happens when you lives states apart. :(

Mateo seems to have recovered from his double ear infection. He is still on the antibiotics, but as of Saturday night, he has been sleeping through the night. No more waking every couple of hours. So I am very happy about that. I kind of had been in fear of never making it to that point! The only bad thing, is that it means my little boy is growing up. That makes me so sad!

Just another day

We saw the pediatrician on Monday and came to find out Mateo has a double ear infection. I guess that would explain his mood and problems he has had lately. I'm glad I know and that its finally getting taken care of. I hate going to the doctors though because I'm always worried that he's going to pick up something (an illness) while he's there. The ped thought that Mateo probably picked up a cold bug or something while at the cardiologists office and then it turned into an ear infection. Grrrr....I hate that. But, he's doing better and finally sleeping better too. So, yay!
The last couple of days, he has developed a sort of "stranger anxiety" I think. I'm not sure. We were at the post office and when Mateo saw a man in line behind us looking at him, he burst into tears and was just sobbing. It was odd because he is the most personable baby I've ever known. Then at church last night, he was in bible class with us and noticed some of the people in class looking at him and he started crying again, really hard. And he did it again 3 times that night whenever a certain man was near him. Mateo just did not like him....which is weird because this man has held him many times before at church. So, I don't know what's going on with that. I'm sure he'll get over it, I just feel bad whenever he bursts into tears like that.

He saw the physical therapist again yesterday and she is just So impressed with Mateo's development ever since he got his feeding tube removed. He has learned so quickly and she expects him to be walking very soon.

Next week, we have the first GI appointment since having the feeding tube removed, so we'll see what happens there. I need to find out if I can start introducing dairy into his diet....we found out he had a milk protein intolerance, so he's been off of milk since July and that special formula is getting expensive. Hopefully, he can handle it by now!

Mateo's sleepless days and nights

Mateo is still teething....at least, that's the only conclusion I can come up with for all the crankiness. Either that, or he is going through a really rough phase right now. He will not sleep on his own. I'm so exhausted! He will NOT take his naps like he is supposed to. He absolutely refuses and fights sleep. I don't know if something is bothering him or if he just doesn't want to miss out on anything. He used to take two naps a day...each about an hour long. Now, I'm lucky if he takes even ONE nap. And if he manages to fall asleep, its only 20-30 min long. So he is extremely cranky all day long. Yesterday was the worst. He fell asleep in the car after lunch and I was able to get him into his crib...where he woke up 20 min later. He wouldn't go down for a nap after that. He was exhausted...red, swollen eyes and as cranky as can be, but he wouldn't sleep. He cried for about an hour and I just didn't know what to do. Lately, the only way we can get him to sleep is by riding around in the car with him.
Then, he wakes up a lot at night. Now, I know he is getting his top teeth in....but does that really cause this much sleeplessness? I don't know. Last night was rough. We got home late (at a Superbowl party) and I got him from the car to his crib asleep, but as soon as he touched the mattress, he woke up and started screaming. As long as I was holding him, he was fine and drifing to sleep...but as soon as I put him down, he started screaming like it was hurting him. It scares me. I never know what is normal. I never know if its heart related or not and I worry all the time that something is wrong.

So either his teeth are really bothering him, or he just wants to be held all the time. I don't know. Finally, after an hour of fighting with him to get him to sleep, I gave him some Motrin (in case he was in pain) and he slept the entire night through. Didn't even wake up once. Of course, I didn't sleep. Its so out-of-the-ordinary for him to sleep through the night, that it keeps me awake because I'm worrying that something is wrong and I have to keep getting up to check on him. So its a lose-lose situation for me. Oh well...I know "this too shall pass"......its just really hard to know when something serious is happening and when its just run-of-the-mill baby stuff. I will be very happy when those teeth pop out!

Teething and doctor appointments

Mateo is teething this week and I feel so bad for the little guy. He got his 2 bottom teeth in during the week before Thanksgiving (while Gramma Lisa and Aunt Jenny were here...sorry guys...he was pretty crabby that week) . For the last month he has been extremely drooly, cranky and very sensitive about anything going into his mouth. I think he also had a cold because Wednesday, his nose was really runny and congested and he has had a slight fever ever since.....which might also be related to the teething.........not sure. SO...I can see huge lumps in his top gums and I can feel those teeth just trying to push their way through. Hopefully, it will be over with soon because I know he is miserable.

Mateo has a slew of doctors appointment beginning from this week and for the next couple of weeks. Its going to be crazy. He saw the cardiologist last Monday. We hadn't seen her since last October. They did an EKG and ECHO and everything looks great. She said that the ASD looks like its getting a little smaller again though. Mateo's surgeon had carved it out a bit more during his 2nd stage surgery to allow more blood flow, but I guess its starting to grow narrow again. But, his cardiologist said that as long as Mateo continues to do well clinically, then hopefully we can just wait and it can be taken care of during his 3rd stage surgery when he is 2 or 3 years old. All in all, it was a good visit (good O2 sats, good blood pressure, etc) and Dr. Suh said she was going to give us (what she likes to call) a honeymoon.....no appointment again until May :)

Mateo also sees the pediatrician next week for his 9 month well visit, the pulmonary specialist for his RSV shots (I hate those....good purpose, but I hate to give him shots!) and then the GI doctor which we haven't seen since December when Mateo had his g-tube taken out. So we will be busy.

He also sees a speech therapist and a physical therapist. During PT, his therapist said he is doing so well and way ahead of his age bracket, developmentally-wise, that she is having a hard time justifying seeing him once a week. He just turned 9 months old last Thursday and he is crawling, pulling up to stand and can even use a little baby toy walker, with assisstance. She said that he is doing 11-15 month old skills. That is amazing since he spent the first 3 months of life on his back and hated tummy time when he came home. But after that g-tube got pulled, he has been a different little boy...and he learns QUICK! He is such a smarty pants :) Anyway...I'll keep updating on his progress and let ya'll know how his doctor visits turn out. Hopefully, we can keep him healthy through all that. He always seems to pick up a cold or something after seeing the doctor. Those offices are so germy! We have Gramma Lisa and Papa John coming in a couple weeks though, so hopefully we're not sick and hopefully those teeth have popped through!

What was happening?

So.....this is mostly what has happened since Mateo's heart condition was found out. (There's a lot to go over since that was 9 months ago!)
He had the first open-heart surgery at 1 week old. Mel and I got to hold him, for the first time, the day before his surgery. I knew that it was most likely because they didn't know if he'd make it through the surgery and the doctors thought we should hold him while he was still alive....in case he didn't make it.....but I tried not to think of it like that, because it scared the heck out of me.
The surgery lasted for almost 8 hours. I think 1/2 the congregation we worship with showed up in support for us. It was nice to have something to take our minds off of what was actually happening, and it definitely made the time go by quicker. I was still a wreck though. Nervous as can be....and worried out of my mind. But Mateo made it through surgery with flying colors and was back in the PCICU (pediatric cardiac intensive care unit) and we finally got to see him. He looked awful, but he was doing well, so that was all I cared about. He was in the hospital until he was almost 3 months old. He had a lot of feeding issues and it seemed that once he took one step forward, he'd fall two steps back.
Mateo had a g-tube (feeding tube) put in when he was one month old. That caused a lot of issues. He was about to come home one week, but then got an infection in one of his arterial lines, and that set us back to square one. But he finally came home! Then went back the next day because he was having withdrawls from the narcotics that weren't correctly weaned before we took him home. Another couple weeks went by and we took him home again. He went back because of bloody stool...which we found out was from a milk protein intolerance. I don't think we ever had him home for longer than 2 weeks at a time before something else came up and he had to be readmitted.
Then it came time for the 2nd stage surgery...the Glenn. He got through that surgery wonderfully....even the surgeon said he was impressed at how well Mateo did. He came home a week later. A couple weeks after that, he was admitted again due to excessive vomitting. He was at the hospital again for about a week. Then we came home and I don't think was admitted to the hospital again until December.
His g-tube site had a severe infection and was leaking excessively. He was losing weight and the sore wasn't healing because it was constantly wet from the leaking. So he was admitted to be put on IV fluids and antibiotics....in the end, we had the tube removed. Mel and I were so sick of that tube. It caused way more problems than it was worth and we decided to just deal with Mateo's feeding issues. But...there really weren't any issues. Mateo ate from a spoon just fine and took from a bottle like a champ. He has continued to gain weight steadily ever since and is now, at 9 months, almost 18 lbs. And so tall! Almost 28" already.
So all in all...through out all our challenges, our little boy is doing miraculously well. We really have nothing to complain about. So many other children with HLHS have much more serious complications, and its by God's grace that Mateo is doing so well.

A Rough Start

Since I am just starting this blog, I guess I should give some background on how we actually came to find out about Mateo's condition.
I had a really rough pregnancy. I found out August of '07 that I was pregnant and by the beginning of September, I had such bad "morning" sickness I could hardly pick myself up off the couch. I use "morning" very loosely because it lasted all day, every day, for 5 months. I lost 30lbs in the first month alone and was hospitalized in the first week of October because I couldn't keep food or liquid (not even water) in my stomach. By December, I was still vomiting, but nearly as much and by the end of January..I could eat normal again. In fact I gained 17 pounds in 2 weeks once I was able to begin eating again.
My water broke at 3am on Tuesday, April 29th, 2008 and my husband and I got to the hospital around 5am. We weren't in a hurry...didn't feel the need to be since I wasn't even having any contractions.
The doctor wanted to start me on petocin, but my childbirth class had put the "fear of pitocin" in me so I refused it, along with all other pain control medications. I was determined to get through this labor as natural as possible. But at that point, I wasn't even in any pain yet. I didn't start to really feel it until around 10am.....and the pain got worse, and worse, and worse. Finally, by 3pm (12 hours of natural labor), the contractions were coming fast and furious.....and I couldn't even move because I was hooked up to monitors that would fall off if I changed positions. So I begged for the epidural. After 12 hours of natural labor and then finding out I was only 5cm and not even 100% effaced, I wanted that epidural.
The anesthiologist came in and after that...I was in heaven. I could finally rest and get some sleep. 5 hours later, time to push. I pushed for 2 hours and that baby was NOT coming out. The doctor came in (he was letting the nurse deliver...grrr) and decided to get the forceps and vaccuum because the baby was stuck. Then he actually took a look and realized that Mateo wasn't going to come out without a c-section. All that work for nothing! I had an emergency c-section...which went really really well.....and I got to see Mateo for the first time. So precious!
The nurses were doing the apgar scores and the pediatric nurse decided they needed to do some additional testing because Mateo wasn't "pinking up" as quickly as he should. I was wheeled back to my room, and 2 hours later, one of the pediatric doctors came up to tell us what was going on. He tried to explain Mateo's condition to us and what exactly it meant...but my mind was pretty much in a fog and I couldn't grasp what he was saying. All I knew was that something was wrong. I was praying it wasn't anything too serious and that it would be very fixable.
They wheeled me down on my bed to the NICU and I got to see Mateo and touch him for the first time. He was attached to so many wires, tubes and monitors..it was so scary. Then they whisked him off in a helicopter to the nearest Children's Hospital and I didn't see him again until a few days later after I was discharged. Needless to say....things got complicated from that point on.

The Beginning of it all

I wanted to start out explianing what exactly Mateo's struggles have been since birth...and will be throughout his life. Mateo was born with Hypoplastic Left Heart Syndrome (HLHS). The very basics of this condition is that the left side of his heart did not grow properly and is therefore not useable. The doctors have to go through and change his blood flow by re-routing different arteries so that the right side of his heart does all the work. This will require a 3 stage surgery. Normally, the blood from the body would go to the heart, be pumped to the lungs by the right side of the heart to recieve oxygen, then flow back to the heart and be pumped out to the body by the left side of the heart. Since the left side is too small to work, the surgeries will make it so the unoxygenated blood from the body will flow directly to the lungs (directed by gravity) to be oxygenated, and then to the heart where the RIGHT side will pump it out to the body, therefore bypassing the left side of the heart completely.

Mateo had his first open-heart surgery on May 6th, 2008 when he was one week old. He had his second heart surgery on August 14th, 2008 when he was 3 1/2 months old and his third surgery (to complete the set) will be performed sometime when he is 2-3 years old.
While this will help him survive, I want people to realize that this is not a forever fix. The right side of his heart (of ANYone's heart) is not designed for this amount or type of work, and it will eventually wear itself out. How long until that point....is not set in stone. It could be a few years, it could be MANY years, but eventually (unless the medical world comes up with something new) he will need a heart transplant. So he is in need of continued and constant prayers. 20 years ago, there wasn't an answer to this condition and the babies were sent home where they only lived for a few days. We consider ourselves very lucky that his condition was caught early (only a few hours after birth) and he has the best team of surgeons and cardiac doctors that we could hope for.
As to how this will affect Mateo's every day living....as far as I know, it shouldn't be too noticable. Once we get through this craziness of hospital visits and surgeries, he should be able to have a relatively normal life. He will always be on some kind of medication and he will need to limit himself on physical activity (probably no contact sports, but we don't mind if he becomes a professional golfer anyway!) but he can run and play like any child. He has been doing great on making all his milestones and is developing right on schedule. And he has quite the personality! So funny...he is always making Mel and me laugh. :) We love him so much and look forward to watching him grow into a wonderful young man.
I wanted to include a website you can check out for further information on his condition if you are interested. There is a lot that I didn't add just for the sake of space and time, but it will go more in depth as to how the heart of a normal child works and how Mateo's heart will work after the surgeries. Check out http://www.healthsystem.virginia.edu/UVAHealth/peds_cardiac/hlhs.cfm for more information. And thank you to EVERYONE who has been thinking of us, calling to check on us and praying for us. Prayers have definitely been answered.