The power of your prayer

The rest of our hospital stay was very uneventful. We were moved to the regular cardiac unit where we felt more like she was a regular baby. Her vitals were checked every 4 hours, but really the nurses would just wait until she was awake or feeding. We felt like we were much more in charge of her care. We would change and weigh her diapers and just leave notes on the white board for the nurse. The nurses were trying to help us be discharged sooner because they knew she was doing so well and she didn't need to be there. We met with the doctors Wednesday morning and they even agreed that she was doing so great with feeding and weight gain and her oxygen levels had been consistent. The only reason we had to wait one more night was because we were waiting for a pulse-oximeter to take home. 

Moved to a crib in the Cardiac Progressive Care Unit and only 2 wires!

Staying at the hospital was quite uncomfortable. The beds were not mommy friendly and there was no bathroom in the room. But over all, we tried to make the best of it and relax. We just held her and watched Scrubs on the laptop. We didn't even have cell service in our second room, so we couldn't make phone calls. We kept up with friends and family through texts. I did much better being away from the boys than I thought I would. They came on Monday to visit but then got sick and were not able to come back to visit. They were very happy to be hanging out with their Nana. Even once we got home it was like, they were happy to see us but really just wanted to keep playing with Nana and G-pa. It wasn't until today that I feel like Micah is starting to get more clingy to me. 

Just in the car, ready to go home!

I can not even express my feelings about coming home. I over prepared for being in the hospital for a long time, I did not prepare at all for coming home in 4 days. I was not prepared, but so ready. I could not wait to get out of that hospital, into my bed, take a shower!, have some privacy, and see my boys. I can not imagine having to stay longer than we did. I had dreamed about bringing my baby girl home, nursing her at home, sitting out in the backyard watching the boys with her, sleeping with her by my bed, and doing all of the normal newborn stuff with her, but did not think I was actually going to be able to do those things. I am not taking any of it for granted. I am over joyed to be home with her. The nights with her have not been so hard and part of that is that she is a great baby and part of that is that I am just so grateful to have her here. It would be harder if she wasn't here. 

Mommy and daddy snuggles! All dressed up for pictures. 

When my water broke, I was scared, I was mad, I was panicked. But since we arrived at the hospital Sunday morning (and by morning, I mean 12:30), I have had so much peace and strength that only the Lord can give, and joy. I thought that I was going to be a mess during labor and delivery, and I wasn't, I felt His peace and joy. And when she was taken away from my chest after birth, I thought that I would break apart, but I didn't. I felt confident and secure in His plans. And during all of the needles and wires and tests that she endured, I felt the Lords peace that it was all for a purpose and that he was holding her in His palm. And as everything was coming back with good news, and she was doing so well, and she was surpassing all of the nurses and doctors expectations, my faith was renewed and I felt the Lords love and power was shining down on us. I give Him the glory for giving my miracle girl life, and life to the full. And I thank YOU for praying. Prayer is so powerful. I struggled with how to pray during my long and trying pregnancy with her, but YOU held me up. Each prayer you said for us was heard and was used by the Lord, and I will be forever grateful. 

Actually awake! And dressed up to go meet our favorite pediatrician. 

As well as she is doing right now, her whole life is going to be an uphill battle and will need continued prayer. The long long term outlook is still unknown, I'm taking it a day at a time. For right now she will have weekly cardiology appointments as well as regular well checks with her pediatrician (who we saw today and I just love). Continue to pray for her heart and for strength and growth. She will be needing at least two open heart surgeries, lets start to pray for those now. Pray for all of the normal baby stuff, sleeping and eating. Pray for her loving brothers. Right now Micah has a cold and a fractured leg in a full cast and Ben has a cold and an ear infection. Pray for our parents who are here helping with the boys, for travel and energy.  Pray for our family of 5 and any and all that the future holds. Praise God for what He has done and what He is to do. 

I will try to post more pictures on here but mostly I use Instagram. So if you want to be overloaded with pictures of my kids, find me on there!

Maelyn's birthday

On Saturday we were still trying to finish projects around the house. We were glad that we were having a 3 day weekend to get a lot done. It was hard though with Micah in his new cast, not walking. I took the boys to Costco and stocked up on snacks and food while Tim got a big project underway. By the boys bed time I was exhausted and not feeling well (per usual) so I went to bed a little early and Tim stayed up trying to finish his project. I was woken up by my water breaking at 11 pm. I grabbed my phone and called Tim to come up stairs. We were both in a little shock. I felt more mad than scared, this was not the plan!!! We had to quickly figure out what to do. I called a friend to come over and stay with the boys. We called our parents and my mom started looking for an early AM flight to Denver. We left the house around midnight to go to children's hospital for delivery. Tim gave Micah his corn starch early so that my friend didn't have to go in later.

Contractions had started but were irregular. When I was up moving they were 2-4 minutes apart and when I was sitting or laying down they were more like 10 minutes apart. So we went to the triage room where they confirmed my water broke and said I was 3.5 cm dilated. I was glad and surprised I was even that dilated. They moved me to a delivery room and monitored contractions and her heart rate for a while. They also put the IV in which went pretty horribly. After a while of not much happening I asked to get up and out of bed. So I walked around the room and contractions started coming every 2-4 minutes. After they started to get pretty painful I decided to get back in bed for a rest and they went back to 10 minutes or so apart but were still getting increasingly painful. I couldn't decide what to do. I wanted labor to progress, but I knew I wanted an epidural and some rest before she came. I had the nurse check and I was closer to 6 cm, so even with these random contractions I was making progress. Shortly after she checked, the contractions, though very far apart, got very painful, so I asked for the epidural around 4 or 5 am. With the epidural contraction continued to be infrequent. We tried to sleep for a couple hours. I was texting and making phone calls a lot trying to figure out what was going on with the boys and getting my mom to the house. Thankfully my friends are awesome and took care of my kids and my mom for me. The nurse came in and I asked how contractions had been. She said they were still very far apart and I was still not considered in active labor so they were going to start pitocin. I was glad, I was ready to get things going. But the IV pump wasn't working so the pitocin didn't actually start until maybe 9 am. By 9:15 the nurse was still trying to get contractions going so she had me sit up right. After a couple minutes she had me lay back down. I don't remember why, if it was because I was leaking more fluid or if Maelyn's heart rate dropped, but when I laid down she checked me and was surprised that I was ready to push! So, literally, in a couple seconds it went from, you're still not in active labor, to ok push!!

The nurse paged all of the teams of people that were supposed to be in the room but then quickly just started looking for the doctor. Maelyn's heart rate had dropped super low. I asked if that was really her heart rate, and she calmly said, yes, it's ok, just push. The doctor was suddenly there telling me to push and not to wait for all of the people that were missing. So I pushed, and there was her head. They said to stop, the cord was wrapped around her neck, which is why her heart rate had basically stopped. They were so calm about it and told me not to worry as they slipped it over her head and then told me to push again. I pushed again and she was born at 9:25 am. I think that since all of the medical teams weren't there yet the doctor was basically like, sure here's your baby, and she went right from birth to my chest as Tim cut the cord. I was a little surprised but so happy! She didn't cry much because she came right to me but I could hear her breathing perfectly, and she got her color really quickly. They said most Colorado babies are bluer when born so she looked absolutely normal and perfect! I eventually turned her and tried to let her nurse and she did! I guess most DILV babies have a hard time with sucking but she has a strong enough suck to nurse and takes a pacifier. While I was totally distracted with my baby girl, the doctor was having a hard time getting the placenta out. Thank goodness for epidural's because I have no idea what they were doing down there. At some point she had me push a few more times to get the placenta out. Thankfully it came, they were getting a little concerned. After 30 minutes with me, the NICU team and Tim took her to check vitals, measure, hook up to wires and place her IV. It was strange to suddenly be all alone right after child birth. But I tried not to think about it and rest.

Just born, still a little blue.

They had a lot of trouble placing the IV on her. It took 5 or 6 tries. So while I thought that she was down in the CICU, she was still on the floor getting poked. Tim came back to visit me while they placed an umbilical IV in her and then they brought her in to see me quickly before they took her to the CICU. I was kept in my room for two hours before they wheeled me down to her room. Everyone was impressed with how quickly I got down there. I would have been down there at the same time as her if they had let me! Recovering in her room, in a wheel chair, was a bit uncomfortable to say the least. My nurse came down after a couple hours and took me to a family restroom to help me clean up a bit. I just want to say, I love nurses. All nurses, but especially postpartum nurses.  They see you at your worst and are always so sweet. I was able to spend the whole day in Maelyn's room due to the flexibility of my nurses. I did ask to go up to my room once to shower and change out of my gown. I was able to nurse her really well a couple of times. Maelyn did so well with all of her tests, different levels and nursing that they said she looks great and to treat her like a totally normal baby. Tim and I discussed with Maelyn's night nurse and decided to spend the night in my room to get some sleep. I am glad that she is my third baby, so I know that the first night they really don't do or need a lot, and the nurse sits right outside her door, watching her, and goes in every 2 hours to physically check her. She took down our phone numbers and said she would call us if anything happened or if she thought Maelyn wanted to nurse.  I looked at it as the same thing as sending your baby to the nursery at a normal hospital stay, but even closer monitoring. Tim slept like a log. I was up every couple hours and had a hard time sleeping, but I did get sleep. I ended up getting up at 4 and getting myself ready and going down to see Maelyn. I knew I wouldn't be able to fall back asleep and I wanted to be with her. So I came down and nursed her and snuggled her all morning. Tim came down a while later. 

With all of her wires, we can only hold her within about a foot of her bed. 

My mom brought the boys by this morning to meet her. They were very excited to see her and hold her and kiss her. Of course the novelty wore off quickly and they became very interested in snack foods and the TV we turned on for them. I love that Ben thinks that the hospital is so fun. I thought they would be more interested to see me. They were happy to see me, but they were not clingy or anything, which was good. Micah seems to have grown a foot and gained 10 pounds over night (of course I should account for the cast). My baby is now a boy. It's crazy how that happens when you have a newborn. 

Two big, loving brothers!

This afternoon we got some great updates on how Maelyn is doing. She is ready to be discharged from the CICU to the regular Cardiac Unit, however they are full so we will be staying on the CICU for the night, with her at regular status. Her oxygen levels have been right in the range they want them to be, which if they continue to stay there she would not need the first surgery. Oxygen levels are the main thing they are monitoring. They need to keep her here for at least 2 more days, watching her oxygen, before they will send her home. With her doing so well, I am almost forgetting that she is sick. Once it becomes time for surgery it is going to feel so strange. But she is so strong! And she is so content and good through all of the pokes and tests. I think she will be able to handle all that is going to happen to her these next 3 years. We might get lucky and avoid the first surgery, but there are definitely (at least) two open heart surgeries in her future.  We want to hold off on them as long as possible. Holding off will mean good oxygen levels, and good feeding and growth. 

She sleeps so great! Trying out her headband!

Tonight we are planning on sleeping in her room. Tomorrow I will be discharged from my room and we will be move to a regular cardiac room. And assuming all continues to go well, we will go home in a few days. Thank you so much for all of the prayer support! I have totally been feeling it. I did not expect to be handling all of this so well, but everything has been going smoothly and she is doing so good! Please keep praying! Lord continue to bring me your peace and joy and strength! Continue to carry my little angel and keep her safe! Bless my mom and friends as they take such great care of my boys! Bless all of you as you pray continually for us!

Micah's broken leg

Yesterday evening, after dinner, Tim took the boys out back, since it finally stopped raining for 10 minutes. Micah walks pretty well in the grass but he is still learning to handle the hill and the bumps and he is just clumsy to begin with. So tripping and falling down in the grass is a normal occurrence. Sometimes he cries, sometimes he doesn't but he is always fine. Well last night he tripped and fell in the grass and started crying, but this time he didn't stop and he would not walk at all. It took a long time to calm him down and he still refused to walk. We gave him tylenol and put him to bed. I was hoping it was nothing and he would wake up fine. But there was no swelling or bruising so I knew if he wasn't fine in the morning it was probably broken. He was up crying every three hours over night and when I got him up in the morning he still wouldn't put pressure on his foot. I tried calling the pediatricians office to check and see if I should bring him there or just go to the hospital. They took my message and an hour later I still hadn't heard back so I called again. They agreed that it was more likely broken and would need an x-ray so I should go to the Children's Hospital. As I'm heading out of the neighborhood with both of the boys, I realized that I don't think I can do this by myself. So we stopped and picked up Tim on our way to the hospital and had a family trip to the hospital. 

Of course the Children's Hospital is our second home so we knew right where we were going and check in was a breeze because they have all of Micah's information in the system. The boys did really well. They loved watching the disney channel on the tv in the room. The doctor suspected that there was a fracture in his leg from her exam. Tim took Micah to get the x-rays done on his foot, ankle and leg. The x-rays confirmed what is actually called a "toddler fracture" in his tibia. They suspect that when he fell in the grass he had turned and twisted his leg causing the fracture. I guess protocol for this is to put on a splint, which he would not be able to walk or even stand in, and then have us follow up with the orthopedic doctor a week later to get a cast. First, how do you stop a toddler from standing and walking? Second exactly one week later I will be delivering a baby, so that wont work for us. Luckily the doctor called the orthopedic doctor and explained our situation. The orthopedic doctor was great! And said to send us right up to him and he would put a cast right on for us so that we wouldn't need a one week follow up and Micah can put pressure on the cast. We were quickly discharged, which was nice too! and sent up to the orthopedic clinic. 

We forgot how long things generally take in ER's so by the time we were discharged had missed lunch and naps. So we stopped in the cafeteria and ate quickly then went up to orthopedics. It was so nice of them to squeeze us in between other patients and put the cast on. The boys, still, did great and were pretty patient, but I could tell they were exhausted. We picked Micah's favorite color, green, for his cast. The cast goes from his toes, halfway up his thigh, his whole leg. It looks so uncomfortable. After the cast was on we scheduled a 3 week follow up to have the cast removed. We snagged a wagon to get the kids back to the car faster. We dropped Tim off at work and the boys fell right asleep in the car. 

I think Micah's pain is better since the cast but he hates it. He is allowed to walk on it and stand on it but he doesn't. He wants to stay right with one of us and needs to be carried around. Hopefully this will get better and he will figure out how to get around. But we have to keep it dry and clean... that will be interesting. Ben doesn't understand that Micah is not as mobile as he was and he asked me to take the green thing off of Micah's leg. I tried to explain that Micah's leg is hurt and he needs the green thing to make it better. The cast is one more thing to worry about these next few weeks. Our parents will be here taking care of the boys and will have to be the ones to help Micah get around and keep the cast dry and clean and do sponge baths and give tylenol, on top of their normal schedule. We also have no idea where we will be in three weeks to get Micah back to the orthopedic doctor. 

I couldn't get his pants back on over the cast.
So he is officially in the next size up pants.

One Week

I'm feeling physically very ready to give birth. I feel like a waddling ball of indigestion and contractions, though I've been told I look great... I don't actually have any belly pictures this time around (third child problems). I should probably take one this week. Every time she moves now I can tell that both of us are not very comfortable. She has very obviously dropped, also making things uncomfortable. I had one night this week that I suddenly realized that I very well could go into labor before the induction and panicked a little! In the morning I made sure I finished all of the things I would need to do if I had to leave for the hospital!

Please continue to pray. I don't even know how to pray anymore. My prayers become wordless pleas to the Lord. My mommy heart has been feeling pretty broken this week for all of my babies. For Ben, the healthy one, the oldest one, who is still only just 3 and has to share so much of his mommy. For Micah, the "baby", the "difficult one", the GSD kid, the "middle child", who is still just only 20 months old and is so attached to his mommy, yet will loose so much of the time he is used to spending with her. For my poor helpless newborn baby girl who is going to have such a rough time coming into this world, fighting for her life. Some days I hold it together pretty well, other days I just cry. Emotionally, I do not feel ready to give birth to this little one. I'm not ready to let her go. I'm not ready to see what is to come or for some of the unknowns to become known. I'm not ready for our "new normal" to begin. 

Luckily it is a long weekend. More time to get things done around the house. We both sort of forgot that Sunday is our wedding anniversary. We had already mentioned something about having a date night as one last time alone together before Maelyn is born, and then when I remembered that it is our anniversary I got a babysitter and made dinner reservations! This week, I have my last perinatal appointment, last ultrasound, last non-stress test. The nurses and sonographers at the office are sad that I'm going to have her and not becoming in to see them twice a week. My parents will be getting in mid week and we will be getting ready to leave. It is so soon.

Pray for healing. Pray for the boys. Pray for our parents. Pray for the nurses and doctors. Pray for the Children's Hospital. Pray for peace and strength and joy.   

2 weeks

The count down has really begun. In two weeks our baby girl will be here. Hopefully in my arms, but realistically, she will be in the Cardiac Intensive Care Unit strapped to monitors.  I only have three appointments left. We only have two weekends to get stuff done around the house. As much as I have been trying to pump myself up, get myself ready and excited for her to be here, I am beyond terrified. I'm getting ready. I've organized her room, I went to the store and got all of the little things I will need, I've started gathering things to pack and I've typed up a bunch of info to leave for our parents as they stay here with the boys. In 13 days we will be checked into the hospital getting ready for the induction, not knowing when we will be leaving, not knowing what will happen to her. Both the known and unknown seem so overwhelming right now. I'm trying to be strong but the more I try the harder it seems. Lord be my strength.  

Joy

This weekend my very good friends threw me a baby shower to celebrate my baby girl. It was perfect! It was just a handful of my closest friends. There were cute little decorations, made my my friend. We ate delicious food and cake. The cake was amazing, again made by my friend! We all made headbands for Maelyn and they blessed me with gifts. We ended with them each praying for me and my family. The whole thing was a huge blessing. 

During the prayer time God really pressed on my heart the word JOY. Ever since our 20 week ultrasound I have had a very hard time feeling joy. Joy about anything, but really joy about my baby. Preparing to have a baby should be joyful, and I should be joyfully waiting her arrival. But all I have had is fear, anxiety, and worry. Anytime that I get a sense of joy, I shoot it down with the reality, all of the different realities that we are facing, and the reality that she could die. I haven't wanted to prepare for her to come home, because there is a chance she wont. I really have not let myself prepare for anything beyond her 6 month mark. So when people have handed me 12 month clothes, I just shove it aside, because I can't think that far. So at the shower, celebrating her and opening presents to prepare for her birth and home coming, I was forced to feel joy for her. It was wonderful. Then I got home and started unpacking presents and getting things ready to wash and put away for her, and all I could think is, what if she never gets to use this? What if she never comes home and I have all of this ready for her? But I can't let myself keep thinking that way, I need to let myself rejoice in the fact that I am having a baby girl. God wants me to feel that joy for her, because He created her to be my baby, my joy and pride. So I am going to try and feel joy, and wait excitedly for her arrival, and maybe that will make the fear and anxiety easier. I spent this afternoon getting her room ready, not just as a guest room (which it is) but as Maelyn's room, ready for her to come home one day. 

3 more weeks

We have been in our house for a week, and I am feeling pretty settled. Moving over the course of several days let me get a head start on unpacking and the majority of the house was unpacked by last weekend. All that is left is garage and basement stuff, which let's face it, never truly gets unpacked, but we are going to try and do it before baby comes. We have gotten lots of little projects done, but still have a long list to accomplish this weekend. I am relieved that I was able to settle fast, and this house feels like home already. It took me a long time to feel at home in our last house, because it wasn't ours, so it is really nice to be a home owner again. 

This was a crazy week of doctors appointments. I am so thankful for all of my friends who have been so willing to watch the boys for me. I had a non-stress test Monday, we had her last fetal echo on Wednesday, and Thursday Micah had an appointment with his metabolic doctors and I had another non-stress test, OB appointment and growth ultrasound. Mae always passes the non-stress tests within 5 or 10 minutes, even though they have to monitor for 20. She always kicks the monitors. This week we made a game out of it. The nurse moved the monitor and waited for her to kick it, then moved it to the other side and she moved and kicked it on the other side. She also passed her growth ultrasound. She is still measuring small but she is growing. Pray that she grows a lot in these next 3 weeks so that she is a good size when she is born. Right now she is measuring 5 pounds 4 oz. They say they gain an ounce a day this last month, that would still put her around 6 and a half pounds, which seems so small to me, since the boys we closer to 8. But we will see, I never know how accurate the ultrasound measurements are anyway. We will have one more growth ultrasound 3 days before the induction. Her echo showed nothing new. The doctor describes it as best case scenario for what she has. She is hopeful that she will not need the first surgery, but they will not know until she is a few days old.  Her next echo will be a few hours after birth. 

Micah's appointment went well. It was just a check up to continue to track his growth and discuss his corn starch and diet. His growth is okay. His body seems to be slowly gaining control back and he is slowly evening out. They are not concerned any more, they think the last appointment was a mis-measurement because all of his other appointments have measured him on his same curve. His triglyceride levels are still high but are very slowly going down. So physical progress is slow but there. But his development and hitting milestones has just exploded in the last few months. The doctors agreed that since starting his corn starch he has quickly caught up on his developmental milestones, so the delays he had were a symptom of his Glycogen Storage Disease. Continue to pray for the 2 am feedings. They are getting harder on us. I am to the point that I physically can't do it. It hurts to get out of bed, and I can't lean into the crib with my big belly. Tim is a trooper, but it is really draining to get up at 2 am every night.

I've been asked several times this week, how am I feeling? And I don't really know how to answer that question. Physically, I feel like I'm carrying a huge watermelon around with me. I'm so tired, everything hurts and I'm starting to swell.  She is getting bigger and running out of room so her movements are hurting me more and contractions are getting stronger, reminding me that I will be getting that epidural. So physically, I am ready to be done being pregnant. But I am not ready for her to be born. I am scared. I don't want to let her go, I don't want to hand her over to the doctors, I want to keep her safe inside of me.  Now that I am starting to feel settled, we are moved, mostly unpacked, I feel like I can start to prepare for the hospital and surgeries. It is starting to feel semi-manageable, but still, how do I prepare for this? I've realized that I'll never feel ready to hand my baby over for open heart surgery, or to leave my boys at home. There isn't any way to prepare. Just pray. Give up control and trust God with all of my babies. Because it's all coming for us, in 3 weeks.