Update on all three little ones

Today has been a long hard day and I am going to humbly admit that I threw myself a pity party this afternoon. Since Maelyn was born I've been handling things pretty well, other than being stressed I've been feeling good. That is until today. Micah had an appointment at the Children's Hospital and I had to take all three kids with me. Long story short there were several potty issues that I was ill prepared for and the 4 of us were just a hot mess. I left feeling overwhelmed and defeated. I had mommy guilt and a severe case of the "why me's". Since Maelyn was born I feel like we put Micah's stuff out of our minds, other than his corn starch, and pretended he is fine. So the appointment today, even though it was not new information and he is doing really well, I was reminded that I have two kids with medical needs, and it sucked. Micah is doing well and should continue to do well, but he will need to keep going back to the metabolic clinic, keep having blood work done, keep taking cornstarch, and have liver ultrasounds once a year.

March  -  July

Over the last 4 months Micah has gone from a baby to a two year old. He got hair and has had hair cuts, he lost his baby chub, and he is so happy and silly. He started running, and going down the slide on his own. He started talking (and singing!), he is even more opinionated than ever now that he's talking and he plays intentionally and imaginatively. He's starting to help dress and undress himself, he starting to show interest in the potty, he tries to put his shoes on by himself. It's incredible how fast he caught up on everything. He has not quite caught up height wise but he has weight wise. He is still in 12-18 month pants because his legs are short, but he is wearing shirts that are between 18 month and 2T. His distended belly is so much better and his doctor said his liver feels like it's getting smaller.

Maelyn is growing so fast and is such a great baby. She is so snuggly and starting to smile and interact much more. She is still nursing well, gaining a ton of weight. She is starting to do one longer stretch at night, giving me a little more sleep. You still would never know anything is wrong with her. Some days she looks a little more purple, but I'm probably the only one who notices.

I know shes filling out well but when I take pictures of her I can't believe that double chin!
Pictures just don't do her justice, she's such a cutie!

I am still checking her oxygen all the time, waiting each day to see how she does. I'm trying to stress less about the numbers. I'm trying to live as normally as possible. But we still have weekly cardiology appointments and each week (or really each day) we hope that she does not need to be admitted. Right now she is 11.5 weeks old.  She has to make it to over 13 weeks (or 3 months) before we are in the clear for the shunt surgery, even though her doctor wants to wait until she is 4 months old before she has the Glenn. Until she has the Glenn surgery, we just have no idea what is going to happen. But once she has and is recovered from the Glenn surgery, we will not need to be taking things day by day, she should be fine until she is 2 and will have the Fontan surgery.

So we have to make it a few more weeks in this weird day to day unknown. This week her oxygen was very low and I was contemplating taking her in, but I waited a few days and it came back up. Please continue to pray, in the name of Jesus, that God would keep her oxygen above 75, even though her body is struggling to do so. God is the only one fully capable of sustaining her. He created her body and knows her heart.

Ben is good, but he is going through some sort of phase (I hope). He's been wrestling with figuring out his independence, such as following rules, obeying instructions and talking back. It makes me sad. He used to always be such a sweet polite little boy, I know it is just a phase and he is testing, I just hope it is short lived. He has also been having a little bit of trouble with sleeping and potty training regression. Pray that Ben bounces back and is his sweet normal self. I know it is totally normal and he is learning important lessons, but it's hard on me emotionally.

Daddy was gone most of the week, but we managed, and had a fun week.