Saturday, January 31, 2009

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 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!

Thursday, January 29, 2009

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 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 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 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.

Tuesday, January 27, 2009

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 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 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 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.