Saturday, October 31, 2009

Ok.. seriously.. how much cuter can she possibly get?!?

My little girl is so cute that she needed TWO costumes for Halloween! :)

annnddd, what a big day today! Aly's first time in her highchair and her first taste of cereal! Of course we got it on tape! (Can you tell we are always concerned about her getting as many calories as possible? :P )

That's all for now! Hope everyone had a safe and happy Halloween weekend!

Friday, October 30, 2009

4 Months Old Today!! :)

My baby girl is 4 months old today! I can't believe how fast the time goes! We have been home from the hospital for over 3 months now. I feel like it was all a bad dream and I have a hard time remembering that time like it was real. But, I'm going to be remembering what it is like pretty soon because it is getting to be time for Aly's 2nd surgery. I have such mixed feelings about this. I am excited because a) she should feel better and have more energy (not that it seems she is really lacking any right now :) ) and b) because it will mean we are done for at least a year (hopefully) and c) it will be one step closer to having these 3 surgeries be a thing of the past for her and us. Having this surgery just looming for the last couple months has been so hard. And of course, I am devastated to have to take her back there again. I have tried picturing the PCICU and remembering what it was like being there and I can't even imagine my girl going back there again. When she was just a newborn, we didn't KNOW her like we KNOW her now. Obviously it was heartbreaking and the hardest thing I've ever done getting through that first month but I was so emotionally confused at that point. When we were on the general floor after Aly's first surgery we were sharing a room with another heart baby who was leaving after his second surgery. His mom and I started talking and she said to me, "It's ok if you feel like you haven't bonded with your baby yet. No one told me that and I spent that first month feeling devastated that I didn't feel like this baby was mine and what an awful person I must be to feel this way." At the time I was so emotionally spent that I didn't really let that sink in. But after we got Aly home and I got to take care of her I started to understand what she meant. I didn't feel that strong motherly bond between Aly and I when we were in the hospital. Don't get me wrong, I loved that baby with all my heart and could hardly bear to see her like that everday. But I didn't feel like she was MINE and only MINE. (Well, her dad's too, but you know what I mean.) Aly is my first baby so all of these emotions were new to me and I didn't know what to expect. Once Aly came home we really bonded and now I know what that feels like to really be a mother. So as I was saying, we KNOW her now. I've BONDED with my baby girl and cannot even begin to imagine handing her over again. If there was a way that I could trade her hearts today I would do it in an instant, no questions asked.

Her surgery is looking to be right around early December. Her cardiologist said it is basically up to us if we want to go before Christmas or right after. Jeremy and I chose before Christmas (as long as it's best for Aly of course). We just think the holidays would be better on the road to recovery then knowing what we would have to do beginning of January. I have every confidence in our strong girl and her surgeon Dr Bove and all of the wonderful medical team at U of M. They helped my baby through a difficult and intense surgery and recovery and she is just thriving now!

As for a medical update, Aly is doing great! Whatever was holding her back from eating has finally let go! She is eating awesome and gaining weight accordingly! Her cardiologist actually used the word "awesome" the other day. :) She is up to just about 11 pounds, which is still only in the 10th percentile but I'm just thrilled she's on the charts! :) We are getting soooo close to rolling over and we are working very hard at getting ready to sit up. Her development lady (I'm sorry Laurie, I'm sure you have a more professional title then that but I am drawing a blank right now. :) ) said she is right on track socially and cognitively and now we need to work really hard on getting her sitting up! Another new step.... tomorrow we are trying CEREAL for the first time!! WHAT?!?!? She is going to be eating from a spoon?!?! I can't hardly believe it. So all is well at the Lincoln home. We thank god everyday for the blessing that Aly truly is and for keeping her road down life with HLHS with very few bumps so far. Here is a picture of Aly and her friend Jake getting excited for Halloween!! Hope everyone has a Happy and safe Halloween weekend!!

Thursday, October 15, 2009

Big House Big Hearts.....and a little ER visit....

Well, we did it! Team Aly did our first Big House Big Hearts 5k at U of M football stadium! I can't believe how amazing our friends and family are to get up sooo early on a Sunday and drive 2 hours to be a part of this. (especially the day after the Michigan/Michigan State game! :P ) Aly couldn't make it this year~ we're getting closer to her second surgery so we didn't think being around 12,000 people would be a good way to keep her healthy. My mom and I made the t-shirts and they turned out really cute!! See.....

I know you can't really read it, I'm trying to find a better picture. It says "Aly Jean Lincoln was born at University of Michigan Mott Childrens Hospital June 30, 2009. Beating Congenital Heart Disease one step at a time." Her little onesie has a big heart on on it and it says Beating Congenital Heart Disease. I had a lot of people stop me and comment on the shirts. At the end of the walk, I was stopped by a women who has congenital heart disease (and also has a son with congenital heart disease) and she is actually a pediatrician. We had a nice talk about raising children with CHD and treatments and things. It was really nice to talk to someone who has raised a child (her son is 20 years old) and could give me a "heads up" on some of the issues they dealt with. Overall, it was a really great experience and I can't wait till next year! Go Team Aly!

(This picture is missing a few members of Team Aly~ there were sooo many people it was impossible to find everyone afterwards! )

Thank you all so much for participating!!

Other than that what else have we been up to........ oh yeah~ first run to the emergency room last week. Keep in mind that I have never had a baby before let alone a baby with a heart problem. So last Saturday morning from about 5-7am Aly was VERY VERY upset. (inconsolable~ one sign we were instructed to take her to the hospital if we saw) She just wasn't herself. She also felt really warm but didn't have a temperature and had herself so worked up her breathing was a little labored (sign number two) . So I gave her some tylenol and did what most new mothers would do~ I called MY mom. She came over and kind of saw the same things I was seeing and suggested we call her pediatrician. Of course this happens on a Saturday and there is no pager or anything just a message saying if this is an emergency call 911. But, what if I'm not sure? What do I do then? What I do, is call her cardiologist. Who as soon as I said the words "labored breathing" he interrupted me and said bring her in immediately. LONNNGG story short 6 hours later we are on our way home with a clean bill of health. And by clean bill I mean there is not a chance there is ANYTHING wrong with that child. She got blood work, xrays, ekg, vitals checked hourly, urine tests... you name they tested her. I got a little annoyed because different nurses kept coming in and checking her oxygen saturations quite often. Then I heard them in the hallway talking about how they had never seem a baby with sats in the 80's... so I think they were doing for their own curiosity. Mainly because one nurse actually said, "I read it on the chart but I have to check for myself to believe it. " She's not a science experiment, she is my baby and she's already not feeling well so how about you not mess with her when you don't need to. (Still a little annoyed if you couldn't tell). It was scary for me to take her to a hospital that wasn't U of M. Jeremy and I were both so overprotective of her the whole time we were there because we knew that no one there really knew how to take her the way she needed. We got that after about the 4th time someone asked what surgery she had and why (after seeing her scar) and we said Hypoplastic Left Heart and the Norwood Procedure and they responded," What's that?" OKKKK, time to take your hands right off my daughter and put them onto a computer to check a little background on that first please. But, after all that, her diagnosis? TEETHING!!!!! What?!? She is 3 months old!! Now to you veteran moms you may be shaking your head that we put her through all that when it was just teething (I know, I felt AWFUL!!) but as I said before, I had no idea. New mom over here~ never sure what to expect next. And if Aly didn't have CHD, I would have not jumped so quickly to call her doctors but I am not taking any chances with this little one. I want her around for a looongg time so I am more than willing to be a little overprotective and overbearing. Am I embarassed that I took her to the ER for teething? Nope, not one bit. I'd do it again, if I thought there was the slightest chance it might be something else. Like my mom said when I called her on our way home, "we have to remember that outside of her heart problem she is still a normal baby and will have normal baby issues, like teething." Sometimes I forget that and assume every cry or every tear is cardiac related. But, I guess the positive is she got a complete physical so we know she is still doing great.

Other than that, we are still having a little bit of eating issues. She is coming up about 1-3 ounces short everyday and Dr. Z (cardiologist) is still on the fence about what to do. To put her on a feeding tube for 1-3 oz. seems unreasonable (his words~ but I totally agree) and could very possibly irritate her reflux and we don't want to head down that road again. We just got that under control. So we don't go back for another week and a half and hopefully she keeps gaining, gaining, gaining. But, of course, apparantly with teething comes a loss of appetite. She looves to chew on her bottle, not necessarily drink it. What would a day be without a challenge anyway? :)

Here's my happy girl after bath time... She always gives her Aunt Jessie the biggest smiles...