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

My week

Since coming home from the hospital with Maelyn my stress level has actually been pretty low, compared to before she was born. But this week it caught up to me! I hate feeling so stressed but Tim was away for three days at a solar show in San Francisco, and he tends to be my source of positivism, optimism and he keeps me calm. So not only was I home alone with three little ones, doing night duty by myself, with a broken car, but when I started to worry, he didn't know and wasn't here to reel me back in. By Wednesday, his last day away, I was already exhausted and overwhelmed, and then Maelyn's oxygen dropped. I spent all morning watching her oxygen and preparing for the chance that she would need to go in for an appointment or even surgery. I had a friend on call ready to watch the boys if I needed, but I would have need to drive them there in my van with no AC in 90 degree weather. Her oxygen seemed to come back up a little bit to where I didn't think I would need to take her in, but I kept checking. Her nurse ended up giving me a call to check in because she was about to go on vacation. I told her what I had noticed, that Maelyn dropped from low 80's to mid-high 70's. Her nurse said as long as she is in the high 70's, I don't have to bring her in, but if she is in the low 70's we will need to do something. It most likely dropped because she is getting bigger. She has been at about 77% this week, once she gets below 75% we will need to schedule surgery. Those numbers being so close makes me nervous. For several important reasons, we need her to stay above 75% until August 24th, about 5 more weeks. If she can make it that long we will be able to skip the shunt surgery and go right to the Glen surgery. Other than her oxygen level being lower, she still seemed fine and is doing great.

I just checked her oxygen a couple hours ago and it was back up into the low 80's! Praise God! Please pray it stays!

Look at this girl! Getting so big!

So, my van... When I decided to stop working, we needed to get rid of my CX-9 car payment so we traded it in and paid cash for my '04 Freestar. When we bought it we didn't know that the AC was not working properly. I really like having a minivan, it is so much easier with kids, but this van was a head ache! So much that I named it P.O.C, or, piece of crap. The only thing I liked about it was that it is a van, and it was blue. I felt like there was always something wrong with it. Tim was constantly working on it and it usually came back to the AC not working. I was kind of surprised that it made the drive from PA to NY to CO without issues. Shortly after we moved here, while it was in a parking lot, it got seriously rear ended. Since it was already a crappy van and the repairs were going to be a decent amount, we decided to keep the money and leave the vans rear end smashed. Then it got side swiped in our drive way one night, I wont tell that story, but we didn't totally fix it. Then the dog hopped in after walking through mud, and we never cleaned it. At some point the lock system started going haywire, so sometimes it wouldn't lock or unlock. Once I had to leave it unlocked in the parking lot of the Denver zoo. I figured if someone stole it, they might be doing us a favor. The AC never ended up working in the rear of the car. It was in the shop for several weeks this winter and we probably put more money into it than we should have, but we were not in a place to buy a new one. Tim just spent about three days replacing the brakes and doing other various things. And then, the AC totally stopped working. It was already broken, but at least we could get cold air out of the front console. Now that Ben has moved to the very back seat, and we have a new born, AC is a must. When I tried taking Ben out one night he almost got sick because he was so hot in the back, he looked like he was about to pass out, so I basically stopped driving. We discussed getting a new van (again) but decided to take it back to the shop (again). I was getting really fed up with the amount of time we were spending fixing it and money we were putting into it trying to keep it going, so I was for buying a new one, but we were hoping it would last a couple more years so we could save up first. Anyway, we couldn't get it into the shop for over a week, and when we got it there yesterday, they said it would cost between $800-$3,000 to fix, and it probably would not even fix the problem in the long run. Needless to say, I was not sad to say goodbye to P.O.C. but I did snap a few goodbye pictures...

Smashed bumper and lift gate.

Hard to see but, side swiped with a brand new mirror.

Paw Printed driver seat (since January...).

Tim conceded and said, it was time, we need a new van and ASAP. Since I hated my van, I had spent years (not joking) researching and knew exactly the van I wanted, so really we just needed to have a discussion about financing and then I needed to show it to Tim. After talking about logistics, we realized that the only way we could physically go look at vans is to not have the boys with us, and that the only time we would be able to do that was right then. So Tim came home, we dropped the boys off, picked up my van and drove to the dealership. We looked at 2 models, one base and one with all the accessories. Then we had them look at trading in my van. They offered us $500 and I couldn't stop laughing. For all that we had just done to it and what the AC was going to cost us and just for the size of it, it was only worth $500. I still think it is funny. But Tim was able to talk them up to $1,000. It was late and we needed to pick up the boys and eat dinner and get the kids to bed so we were trying to leave, but they would not give us the key to my van! It was kind of ridiculous. We told them we were planning on buying one of the vans but needed to get our kids. Eventually we got the key from them. Tim agreed to come back an hour later to buy a van and get the $1,000 for mine, but he was mad at the way they handled it. We discussed the options while we ate and dealt with the kids. I ended up telling Tim to just leave and surprise me. Of course he brought me home my dream car! He spoils me. It was a stressful day and a stressful decision, but finally having a car that is not broken/about to break down, is such a relief and blessing. Worth it. 

My new car, Tulla, a blue 2015 Toyota Sienna

Here is our new house.

A good week and a fun fourth

Maelyn is still doing really well. Her Oxygen has been in the low 80's all week. The other week when her oxygen dropped, she had a runny nose and tested positive for rhinovirus. Which, makes me nervous for her getting any type of cold or illness. If a runny nose dropped her oxygen, I don't want to see what anything else does to her. Her appointment on Monday went really well and they scheduled her next appointment 2 weeks out. I hope we make it through this week without calling or going to the heart clinic. 

The boys are doing well. We moved Micah's crib in to the nursery/guest room and set up a twin bed in it's place. The first time he slept in it was a nap time. As soon as the door shut he ran over to Ben's bed and started bugging him, which I think Ben loved. After a couple days I slid his rail down so that the opening is too small for him to climb through. For now he stays in bed because he can't get out, but one day he will learn to climb over the rail...

For the 4th we went to some friends from churchs' party. We hadn't planned anything because I didn't know if we would be free, playing it day by day. We were so blessed to be invited. It was fun to spend time with friends, meet some new families from our church and watch the kids all play together. 

For now, we are all healthy, with no broken bones. Pray for continued health for everyone, especially Maelyn. Pray for a great and easy week for this upcoming week. Pray for my van, it has been needing  some work again and we want it to keep going for a while longer. Continue to pray for Maelyn's oxygen levels and to hold off on surgery until the fall. 

Happy 4th!

Taking it day by day

Maelyn has been doing so well. You wouldn't know she is sick and most of the time, I really don't even think about it. But three times a day we stop and sit on the couch and check her oxygen. Her oxygen level is the one indicator we have as to how her heart is doing and if/when she would need surgery. Once her oxygen saturation is 75% or lower she will need surgery. She has been consistently in the mid to low 80's. Over the couple days she had been in the 70's. We kept blaming it on the monitor sensors or that it was because she had been fussing, but yesterday morning when it was still in the 70's, I really started to worry that her oxygen was really dropping. I was contemplating calling her nurse, it wasn't quite 75, but it was not in the low 80's like usual. Her nurse ended up calling me to check in since we didn't have an appointment this week. I explained what I had been seeing and that other than the numbers, she seems the same. She has had a runny nose, but is breathing and eating fine. Her nurse decided that she should still come in for an echo and to get checked out. So a couple of hours later, Tim came home and Maelyn and I went in. The echo didn't show much change at all, which is good. Their pulse-oximeter showed the same numbers I had been seeing at home. They took a boogy sample to test for a virus, because that could be one reason or a drop in her oxygen. When they weighed her and told me her weight I was shocked! In 10 days she had gained 17 ounces! I knew she had probably had a growth spurt because we had one day that she was nursing about every hour and then the next two days she just slept, but that just seems like some crazy weigh gain! Her nurse was pretty impressed too and double checked that she was only getting breast milk, no calorie supplements. They were going to try putting her on some oxygen to see if it helped her but ended up not trying it. I had been told before that giving her oxygen probably would not have any affect on her due to her specific situation, but they were going to give it a shot. It is good to know that if her oxygen does drop lower they would be willing to try it. Since she is gaining weight, eating well, doesn't have problems breathing or anything, the echo was fine and her oxygen is still above 75, they decided not to do anything yet. The doctor we saw this time also said that when she gets a catheter surgery they could attempt a balloon to open her blockage, but again with her specific situation he doesn't think it would work either. It was just good to hear that there are things that they could try before the shunt surgery, even if her chances of them working are poor. This doctor (who we had seen in the hospital) was very optimistic and positive. We have an appointment to go back again on Monday. 

When I realized her oxygen really had dropped, first I just started to pray. I prayed that God would increase her oxygen and prayed against her needing surgery, but at the same time just prayed that God would prepare and protect both of us. I have been try to mentally prepare myself for surgery, because I know it is coming at some point. When the time comes, I wont be able to nurse, I'll have to switch to just pumping, which I think it going to be hard to let go of, and just not having her in her bassinet next to my bed at night and in my arms all day. Also the thought of being being back in the hospital is not great. So I have been praying that God would prepare me for these changes. 

Then I started cleaning and organizing, not knowing if we would be needing surgery soon, I want the house to be ready. I know I need to be ready to take things day by day, but it is hard! Even having a spur of the moment appointment was hard. I had planned on having a relaxing day at home, doing nothing and then I had to quick get ready and packed, find someone to stay with the boys and get Maelyn fed on time and in the car. I have been trying not to plan out anything more than one week, but I realize now that I could wake up in the morning and have to take her in any day. Hopefully we will have some notice before she will need surgery, we should be able to schedule it, but there is no guarantee. 

The good news is this morning her oxygen was back in the low 80's! There was hope at the appointment that the drop was a fluke due to weight gain or the runny nose, and we prayed all day that her oxygen would increase. Praise God that it did! She needs to get to 3 months old before we can say for sure that she will not get the shunt, and that is my prayer. Keep praying that it stays above 75%.