Just an update

I'm always writing about the kids, so here is an update about a little more than just the kids... 

Tim just accepted a new position at his job and he is very excited about it. Starting in a couple weeks he will be the Product Manager for Energy Storage in North America for SMA. This new position will have him in a brand new role at SMA and will keep him busy! I am hoping that he does not have to do much traveling, but he will have to do some. However, he will have more flexibility to work from home (or the hospital if needed). He is very lucky that his boss is, and has been, very understanding of our situation with Maelyn and is willing to be flexible with Tim's schedule. He knows that Maelyn has lots of doctors appointments and surgeries coming. 

Tim has also been keeping busy around the house with projects and upkeep. We have done a lot of little things around the house since we moved in just 2 months ago. Our parents definitely helped while they were here. We've; unpacked everything, hung all of our pictures and decorations, touched up paint, moved the washer and drier, ran new cable to get the antenna working on the TVs, installed new locks on every door, replaced a door, installed an outdoor light and switch, repaired the shed roof, added gravel outside, power washed and stained the deck, installed attic stairs in the garage, cut down a huge lilac tree, trimmed bushes, planted fruit bushes, replaced every light bulb in the house, Tim ripped out the old work bench in the garage and made a new one, he replaced his cars break rotors, he built a roof on the kids sandbox, relocated a bunny family out of our back yard (AKA chased them out and blocked the hole under then fence) and we got 4 free Adirondack chairs from our neighbor and we fixed them up and painted them. I'm sure I forgot some, and there are a lot more things Tim wants to do. 

Sanded and painted free chairs on our newly stained deck.

I've been home alone with the kids for a little more than a week. It's been going pretty well. On Monday I took the boys with me to the Children's Hospital for Maelyn's appointment. I was a little worried about getting everyone up and out the door in time and then getting them all out of the car and into the building, but I did it! I was able to drop the boys off at a child care center there and took Mae to her appointment. Yesterday was the first time I had a moment of all three crying at the same time. Let's hope that is a rare occurrence. On Thursdays I've had some friends come over here to have the kids play. I love having play dates, probably because I love my friends. (Side note, four of us just had baby girls in the last 6 months.) Ben and Micah sharing a room has been hard this week. Ben is in the "terrible 3s" and is not following his bedtime rules (be quiet, stay in bed and keep the lights off), which are waking Micah up. 

Ben, during nap, got out of bed and took his underwear off the floor and put it on his head...

Over all, things are going really well. We are just so happy that Maelyn is doing so well. You wouldn't know anything is wrong with her and she is a very good baby. At her last appointment they said she is doing so well they changed her from weekly appointments to every other week! Our nurse even said that if she keeps doing this well we could talk about traveling if we wanted to, which I had not even thought of. We are still praying for her oxygen levels to stay where they are and for her to not need surgery until October. We are going to try and just enjoy our summer! 

One month photo shoot her brothers jumped in on!

I sought the Lord and He answered me

We are still in the first surgery waiting game. We will be in this 'wait and see' period until her Glenn procedure is scheduled, which we are hoping she can wait until October for. Her appointment on Monday went much better. Her echo showed a slight increase in blockage, but her oxygen levels are back in the mid to low 80's which is great! Your prayers are working! I don't know what would cause her oxygen levels to stay up when the blockage is increased. So continue to pray for no changes! And oxygen levels to stay up! She is still nursing great and gaining weight. Her doctors, nurses and dietitian say she is the perfect patient! 

Growing so fast!

I can't believe she is almost 4 weeks old! She is starting to be a little more awake and alert. I'm trying to get her to smile or coo! Since she is more alert she is also a little fussier, but I really can't complain, she is so much easier than the boys were! Her fussy time of day is usually from 8-9, right before bed. She is up about every 3 hours at night, nurses for 10 minutes and lays right back down. She is such a great nurser, almost too good. she would just nurse constantly if I let her. And the only reason I don't let her is, Micah nursed every hour and it was horrible, so I don't want to get into that again! If you didn't know anything was wrong with her, you would never guess. But knowing, I can feel her heart beat on the wrong side of her chest and I notice that her color changes faster than most babies when she is cold or upset. The pediatrician also let me listen to her heart at her last appointment and it does not sound like a normal heartbeat. 

Micah's cast came off this week! He is walking, but he is walking funny and is not very confident. The doctor said it could take a few weeks for him to be back to normal. I am so glad it is off! And he is walking! He loves his baby sister so much too. He loves watching her, showing her toys and occasionally holding her. He also loves to "boop" her nose (which in our house means "I love you"). He mostly calls her 'baby'. We are working on teaching him to call her Mae, but it sounds like 'mine' so I'm not sure if he uses it or not. We are still working on his speech. He has more words, but they don't sound like ours. For example, "Ben" is "Beng" and "more" is "muy".  

Micah and Mae doing tummy time / Micah and Ben doing tummy time

Ben loves his little sister too, but is a little less interested. He will want to hold her and hug her but then he is done and goes to play. He is more interested in his BFF Micah. He loves playing with Micah and trying to teach Micah things. Sometimes I wonder if Micah doesn't have much speech because Ben talks sooo much. 

This week, family is gone, Tim is working, and I am home by myself with all three kids. I am so blessed. They are all so good. We have not had any major melt downs yet. I'll admit the TV has been on more than I like, but oh well! I just feel so grateful to have all three home and for them all to be doing so well. Micah's GSD is under control, his cast is off, Mae's oxygen is good right now and she hasn't had surgery yet. Praise God for these victories! While I was pregnant I was so consumed with the unknown and the worry and stress of everything, that I never felt 'normal'. Having her home feels like a dream come true and I finally feel normal. I know that she will be having surgery and we have a lot a head of us, but I am praising God for each day that we are home. And thank you God that we have a home! After we moved in, I dreamed of sitting in our backyard on my swing, nursing my baby girl while my boys played in the sand box, and I thought it was a far off dream. She was not supposed to come home so soon, she was not supposed to be such a good nurser, but here we are! 

The Lord heard my cries, and he delivered me from my fears (psalm 34:4, psalm 18:6). 
Please continue to pray with us for oxygen levels, upcoming surgeries, and peace, joy, and life to the full! Thank you!

The first surgery waiting game

Every time we have met with both our fetal cardiologist and now Mae's new pediatric cardiologist, they have talked about the "first surgery" (as we have been calling it), but they have always been very optimistic that she will not need it. Once she was home and her oxygen levels seemed steady and she was doing so well, we had assumed that she would not need the first surgery. In my mind I was planning to getting back into a routine quickly, planning play dates, preparing for a normal summer and mentally not preparing for surgery until fall. Until then I was planning on having my normal, "healthy", baby girl.  

On Monday we went for her weekly follow up. Mealyn's weight gain has been great! More than an ounce a day, she was up to 7 pounds 5 ounces. However, her nurse felt that her oxygen levels were lower for her and decided to get another echo and EKG. The echo confirmed the nurse's suspicions, her pulmonary blockage had gotten worse. Maelyn's doctor was out and so we saw the doctor on call, who I had never met before. This doctor came in and just said, "she is going to need the surgery". No time frame, just it is coming. I shouldn't have been, but I was taken back and confused and a little shocked. I was informed that she will need a shunt placed between her pulmonary artery and aorta, plan on a two week hospital stay, and we will need to take her in for surgery when ever her oxygen levels are consistently 75%. Needless to say I was upset when I left. Not that this was new information, but I was not planning on ever hearing it. My mom had already cancelled her flight back out here because we did not think the surgery was going to happen. But even now, we don't know when the surgery will be. It is all a waiting game. Wait and see what happens to her oxygen levels. Wait and see when the doctors decide it is time. I don't know how much notice we will be given before it happens. It might get scheduled or they might just decide to take her in immediately, it all depends on what happens in her little heart. 

All week we have been praying for no more changes. If there are no more changes she could still get away without the first surgery. However last night and this morning her oxygen levels have been slightly lower yet. I'm afraid she is getting closer to that 75%, and quickly. I am praying that she isn't and especially that we can get through the weekend without her dropping that low. She has an appointment on Monday that Tim is going to come to with us. She will have another echo to check her blockage. Mealyn's doctor will be out again this week, so again, we don't know what doctor we will be seeing. Depending on the echo and what they get for her oxygen level, they might schedule the surgery. For those who are interested, the "first surgery" as we call it, is actually called the Blalock-Taussig Shunt. Regardless of if/when she has this surgery, she will still be having the Glenn surgery this fall. 

Enjoying bath time.
That chest, pre-scars, perfectly holding her special little heart.

Please pray for her pulmonary blockage and her oxygen level. Pray for this upcoming surgery. Pray for peace and preparation. This mommy is not ready to hand her newborn over. Pray for timing. Pray for the boys and my mom who will be coming back to watch them for us. Pray for Tim's job and time off from work. Pray for the nurses and doctors and surgeons. 

Specific prayer requests

Maelyn had her first follow up visit with the Cardiac Clinic at the Children's Hospital where we met her new nurse, doctor and dietitian.  They agreed that she is doing so great! We will have weekly follow ups with them until they decide she can do every other week. 

In my own mind, I guess since she was doing so well and we were discharged so soon, I had taken the need for the first surgery completely off the table. However I was reminded at this appointment that it is always an option if anything changes, specifically if her oxygen levels change. The doctor does not think anything will change, since she has not shown signs of change in her pulmonary stenosis since she was even in utero. However if her blockage changes, her oxygen levels will change and she will need surgery. It is hard to judge her oxygen levels. We have a pulse-oximeter that we use every morning and night to check her oxygen levels. If you have never used one, it is pretty easy to use but hard to read. We put a sensor on her foot that has a red light on it and looks like a bandaid. Then the machine puts out numbers for her oxygen level and her heart beats per minute. The numbers change so we have to sit there and watch it for a good amount of time and then pick an average. She has a set range that she needs to be within or the machine will alarm to tell us she is out of her set range. At home she has been pretty consistently at 85-86%, which I think they want her to be at and stay at. When we have gone to doctors appointments, they come up with different numbers, both lower and higher, which has been concerning the doctors. They trust me when I tell them that she is normally at 85%, so when I don't get 85% at home, I start to get worried, but then I check it again later and it is back to her normal 85-86 (averaged). Please pray that her pulmonary stenosis does not change, at all, and that her oxygen levels remain consistently in the mid 80's. 

She is still nursing well. We are starting to get into some sort of routine. She still sleeps pretty much all the time. I have been impressed with her weight gain and thought she was doing great. She is doing well, however the doctors want to see more weight gain. If she has not gained a certain amount by her next appointment, on Monday, they may want to start her on a calorie supplement. I'm not opposed to the calorie supplement, but obviously I prefer that we not add anything to her diet of breast milk. They asked that we start giving her one bottle a day so that if we need to add to her diet, she will already be used to a bottle and we can add it to a bottle of breast milk. Pray that she naturally gains enough weight to please the doctors. 

I asked the doctor for a more narrow time frame for surgery because I am a planner and I had been hearing any where from 3 months to 6 months and every doctor we talked to it seemed to change. This doctor will be her doctor from here on out so his opinion is the one that matters. He disclaimed that things can change at any time so nothing is for sure, but if it would help settle my mind, we will be shooting for her to have the Glenn procedure in mid October. This would put her at almost 5 months old. It is helpful for me to have a time frame and to know that we should be able to get through the summer and Micah's birthday. He also explained what will happen pre-surgery. A couple days before her surgery, she will have either an MRI or a heart catheter. Both would be under anesthesia and outpatient but the MRI is noninvasive. Pray for timing and preparation for these upcoming surgeries. 

Micah has just started to walk in his cast. He still has another almost 2 weeks in it. I hate this cast. I want it off so bad! He needs a good bath! It really limits what we can do and I feel like he is fussier than normal because he can't do everything he wants to do. I am also afraid that he will start walking with it on and then by the time we get it off he wont be able to walk with it off and it will take another week for him to figure it out again. When he broke his leg he had only been walking for a couple of months, it was still fairly new to him. Pray that he learns to walk again quickly and for no more broken bones! He has also been very cranky lately because he does not have or use enough words, so he gets very frustrated and just cries. Pray that his speech picks up quickly and he is able to communicate his needs and wants with us.  

Ben has had an ear infection since we got home from the hospital but in general is doing fine. He is just the best big brother. He loves Maelyn and enjoys holding her and snuggling her. He is also so patient and loving with Micah. They are best friends. I'm not saying sharing isn't hard and they don't have their moments, but there was a moment today where Micah was just being fussy and crying and all of the adults were about to loose it and Ben climbed up to Micah and just kissed him. Thank you God for my sweet sensitive Benjamin. You made him perfect to be big brother to Micah and Mae.