12 weeks old!

We had an appointment yesterday for Maelyn and got great news! The shunt surgery is out of the picture. She is 12 weeks old and over 12 pounds, so she is now big enough to get the Glenn procedure early if needed. We are going to tentatively schedule the Glenn procedure for early October. If her oxygen drops and stays down before that, Maelyn will probably be admitted for observation and they will decide how to proceed before she has the Glenn surgery. I am so relieved to know that she will not be getting the shunt surgery and I am so glad that I can put a surgery date on my calendar. Before her surgery she will also need an MRI and possibly a heart catheterization. We are looking at having that done mid September. That will be an outpatient procedure, however she will be under anesthesia and have a breathing tube put in for the procedures, so it will be a hard day with a recovery period. 

Having a date for surgery does not mean we will be out of this day to day waiting game. I will still be checking her oxygen several times a day to make sure she is ok. Please keep praying that her oxygen stays above 75%! Her oxygen has been all over the place and has everyone on high alert. Even at her appointment yesterday she was anywhere between 70-81%. Even though it is very unpredictable these days, it is generally averaging 78%. So when she seems to have a low period I am trying to worry less and wait for it to come back up. Her nurse says that is ok as long as everything else is fine (breathing, feeding, mood and coloring), but if she stays below 75% for a couple days I will have to take her in and most likely be admitted. 

Overall she is still doing well. She is getting so big and she is getting very social! She is turning into a cute little girl baby and loosing her new born looks. She has the cutest reactions when she finds a face. Her arms flail and she give a big open mouth smile. She doesn't coo or talk very often but when she does she is very talkative. She is not a fan of tummy time, but she is getting stronger and can lift her head. I don't think she is close to rolling at all. 

Praise God, we made it to 12 weeks without surgery! Her nurse said she might be the biggest baby she's ever sent into surgery! I truly believe God has been sustaining her. He is hearing your prayers and He is in control. He must have big plans for her life! Continue to pray for upcoming procedures and surgeries. Pray for her body and her brain development. Pray for her nurse, doctor and surgeon, that they would have divine wisdom over her and that they would sense the Lord's presence when they are with her. 

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.

The day to day roller coaster

Maelyn's oxygen dictates my life right now. This past week we did not go anywhere or see anyone because I was checking her oxygen so much. I had been told that if her oxygen is below 75%, to call and take her in. This last week her oxygen was all over the place. So much that I just didn't know what to do. I was checking her oxygen 4 times a day and taking notes the range of numbers I was seeing and what she was doing at the time. I emailed her doctor to let him know what I had noticed and let him know that her oxygen had been anywhere between 69-82%. He decided to have me keep monitoring her and just see her at her Friday appointment. Thursday and Friday her oxygen was more steadily around 77%, so I was feeling better. Once we got in to see her doctor he was glad to see that her oxygen was back into the high 70's. He said he thought that he was going to have to admit her to the hospital to monitor her and formulate a plan for her but since her oxygen is still in the high 70's, sometimes 80, we were able to take her home and keep watching her oxygen here. But once her oxygen stays at or below 75%, she will be admitted, so I packed myself a small bag to keep in the car in case we don't get to come home from one of her appointments.

At this last appointment she had another echo. Nothing has changed, but as she gets bigger her blood flow needs should increase even though her blockage stays the same. So, the waiting game is seeing how her body adjusts as she grows, which is why her oxygen fluctuates. Her oxygen has to stay above 75% for at least 3 more weeks before we can say that she will not get the shunt surgery. Each week we go to her cardiologist, I get more and more scared that she is going to need the shunt surgery and dread it even more. Her doctor was explaining the shunt surgery a little more and said that sometime it makes them sicker and only works for a couple months just to get them to the Glenn surgery. But once she is 3 months old there are some other options to try to get her to the Glenn surgery at 4 months. Her doctor ordered some blood work this week to get an idea of where she is at and what he could try to get her to 4 month old without the shunt. 

There is really no explanation as to why her oxygen is still in the high 70's. She is growing like crazy and the blockage has stayed the same. With each growth spurt her oxygen drops but some how comes back up. This day to day waiting game is getting harder. 

I believe her oxygen is still ok simply because we are praying. Please continue to pray for her. Pray that she keeps growing so well but that her oxygen stays where it needs to be. 

"You can ask for anything in my name, and I will do it, so that the Son can bring glory to the Father." John 14:13