Maelyn is 2 months old

It's been hard to update the blog lately. We are still taking things day by day. Overall, life is feeling normal and we are doing great. But at the same time each day is stressful as I check Maelyn's oxygen 2-4 times a day. The last week her oxygen has been all over the place. She had an appointment with her cardiologist on Monday, then she dropped lower on Wednesday, so Friday I called the clinic and they told me to bring her back in. But by the time we go there she was back up higher than she was Monday. There are several different reasons her oxygen might go up or down, so we never know what is going to happen. 

At the impromptu appointment on Friday I got to meet one on one with her cardiologist. I got to ask every question and discuss every concern that has been floating around my mind over the last couple weeks. Her cardiologist is so great. He explains things in a way that is honest and true but somehow not super scary. He knows what he's talking about because he specializes in single ventricle heart defects. And I can tell that he really cares about Maelyn, he really adores her. We discussed different aspects of the 3 different surgeries such as time frames for recovery, risks and complications and what to expect after each. He really wants her to be 4 months old before she has the Glenn surgery. He talked about different option we could explore to get her there if her oxygen drops before then, however if it drops in the next 3-4 weeks we would most likely have the shunt surgery. Even though her oxygen has not be consistent, she is ok for now. We are praying her oxygen can stay high enough to get her to 4 months before needing surgery, but once it is more consistently in the low 70's we will discuss options. Her doctor offered that if we are nervous about her oxygen we can do an overnight in the hospital to monitor her oxygen for 24 hours to see where she is at at all times of day and night. We don't think she needs that, I think we can just monitor her at home. 

I also asked about how lower oxygen might affect her brain and cognitive development and at what % will it affect her. He said they don't really know since there are so many different contributing factors other than oxygen saturation and every individual with congenital heart defects are unique. They think she is fine as long as she isn't staying in the 60's. But pray for her brain development and cognitive development, as her oxygen has been in the the low 70's this week. 

She gave us her first social smiles this week, but they are few and far between. I am glad she is doing it, I was getting nervous that it was taking so long, but it is still hard to get her to do it. She is very serious looking all the time and I wish she would smile at me more! I think I am just always a little worried about her, so I want her to smile at me and let me know she's still happy and ok. The boys were much more expressive babies. Even if it wasn't a smile they just made more coo's and facial expressions but Maelyn still does not express much. 

She is still waking up about every 3-4 hours at night but we had one night that she went 6 hours! I was hoping she would do it again but the next night she did not do as well. Even though she went 6 hours, the Micah alarm still went off at 2 and woke me up, so even if she sleeps someone wakes me up. Ben has been waking up crying and then asking to go to the bathroom, even though he has a diaper on and is sometimes already wet. One day, years from now, I will sleep through the night again. Micah has a follow up appointment with is metabolic doctors in a couple weeks. I hope we will discuss the idea of getting rid of the 2 am corn starch, but it will probably be a couple more years. 

Maelyn is still growing and nursing great! At every appointment I am always shocked at how much she weighs. On Friday she was 10.73 lbs. I feel like I am watching her fill her clothes more and more each day, and I know she is going to out grow them in a couple weeks! Her cheeks are so big and cute! She loves to snuggle and sleeps best when laying on mommy or daddy's chest. She still likes to be swaddled and very warm. She is starting to be awake more during the day but she prefers to be held and look around when she is awake. She is not a huge fan of tummy time unless it is on top of me. Her brothers love her very much and have adjusted to her being part of our routine. Ben knows that after breakfast, when I bring Maelyn into the family room to check her oxygen, he gets to watch TV. Micah loves to talk to her and to touch her face, which I am trying to teach him not to do! She still seems like a normal healthy baby. Sometimes she looks a little more purple to me but Tim says he doesn't notice. She's made it to two months without surgery, we just need to make it one more month in order to say she will only need 2 instead of 3. 

2 months old