Reality Sinking In

I am starting to come down from my high on the fact that Maelyn is going to come home. Since meeting with the fetal cardiologist I've just been in this happy cloud of the "good news". I went to my MOPS group and was so happy to tell people she is now expected to live. It felt like her heart issues are nothing. And yesterday I went to women's bible study and got to happily tell the women at my table that I'm having a baby girl in June. I left everything else out. 

I started researching the surgeries she is going to need and the life expectancy. They really don't have enough data about long term outcomes, but I think I saw somewhere it's about 80% survival rate for the first 10 years. After that no one can say. Now the reality of, she is going to need open heart surgery, is starting to sink in. Watching Micah go through the liver biopsy was so hard. I never wanted to see one of my babies go through surgery again. Now picturing sending my miracle girl into the OR for them to spread open her chest is going to call for so much more. More of God's strength and grace and love and healing. I don't know how I'm going to do it. Maelyn's whole life, day to day, she will live with the risk of sudden heart failure. How am I going to let her go to school, go to sleepovers, let her out of my sight? I know everyday of her life will be special and meaningful, but they will also be stressful and cautious. I'm trying not to worry about it, there is nothing I can do about it but take it one day at a time and continue to trust God. But I do need to come to terms with what life is going to be like. 

I still believe she has 4 months left to grow and for her heart to heal. I am excited to go back for more ultrasounds in a few weeks and see how much she has changed. I know God can heal her. But I also know that if He doesn't it's because He has other plans to use her life with a broken heart. I just need to prepare myself for that life too. 

Pray for Ben and Micah. They are such amazing boys. I am already worrying about having to be away from them so much for her surgeries. Pray for Tim and I, that we would be able to make time for us in all of this chaos. Pray that God would heal Maelyn's broken heart. 

It' a girl!

We've be feeling your prayers and sensing a huge peace from the Lord. I spent Monday feeling a peace that no matter the outcome, my God is the same before during and after. He will never change and He will always be good. It wasn't until I started to pack up and take the kids to my friends house to head to my appointment at the Children's Hospital that I started to get nervous. Wednesday we got the worst news possible and felt we had zero hope of bringing our daughter home. Since then, each day seemed to hold slightly better news, so by Monday I was at an impasse. We had been in a place where things could really only get better, now things could totally get better or they could go back to being worse again. But we showed up to our appointment optimistic and full of faith. 

The sonographer was amazing. She spent an hour just thoroughly checking Maelyn's heart. She had an OB observing, so they were chatting about what they were seeing, and when that would make most parents nervous, we found it reassuring hearing her talking about what she was seeing. The other sonographers we'd seen didn't know what they were looking at and couldn't seem to find all the parts, but this one, she knew exactly what she was looking at. She was sure of herself, she double checked things, she had seen this before, she had seen that before, and the biggest kicker was, she found the missing right ventricle!!! I knew God could make four out of three! That doesn't mean that the missing fourth chamber works, but it changes the diagnosis. And to me it means that my God can continue to grow that right ventricle. 

So they left and gave the findings to the doctor. Then the doctor and the observing OB came in and did their own quick check on her heart. One thing that made this appointment even better was the way they talked about Maelyn. She wasn't just a fetus. The doctors knew she was a baby girl with life and personality. Once the doctor felt that she had seen enough and was confident in her diagnosis we moved to a small conference room to meet with the doctor, OB and nurse. We started out our meeting with Tim and I briefly explaining our journey over the last week and how we started out with the worst news possible and have slowly been finding more hope. So my first question was, what chance are you giving her to make it. The doctor looked at me right in the eyes and said that she has no reason to believe that Maelyn will not be able to survive the whole pregnancy and birth. I was so relieved I almost didn't believe it. It was like a weight was lifted and I could finally grasp the idea of having my baby girl again. I don't have to worry every second about her being alive. Her heart is strong enough to survive pregnancy and a normal labor and delivery. In fact her heart is strong enough that we will even be able to hold her and nurse her after birth. I had not thought that was going to be possible, if we even got that far. In fact, the doctor said that there is a chance that we might be able to take our baby girl home just a couple days after birth, like a normal baby. 

So the bad news. Maelyn's heart defect is call Double Inlet Left Ventricle with Dextrocardia. The dexrtocardia part means that her heart is twisted of to the right side of her chest. The doctor said that this does not matter to them. She can live with her heart out of place and the surgeons should not have a problem with it either.  Tim and I were talking and thought that on this ultrasound her heart looked more centered in her chest than it had previously. Even though we are not Doctors and not sure what we saw, I believe God is slowly moving it back over to her left side. You should probably just look up what double inlet left ventricle is and looks like but I will do my brief, non scientific explanation of her heart. With her double inlet left ventricle (DILV), she has a very very small non functioning right ventricle that is just open to the left and the large left ventricle is doing all the work, circulating all of the blood out of her heart. We were told that it is very good that she has a functioning left ventricle. Left ventricles are stronger and meant to pump more blood than the right anyway. All of her valves and arteries look good and strong. This is why she is okay right now and will make it through birth and at least a few days with out any intervention. Her pulmonary artery may have some blockage, they are not 100% sure yet, but that is a good thing. The first surgery would be to block some of that arteries blood flow, so if she already has that blockage, she would not need to first surgery. 

Once she comes home, the hospital has a program and clinic already set up for patients with DILV! We will be set up with a doctor and a nurse for weekly follow ups. We will be given a scale to check her growth and an oxygen monitor to check her levels twice a day. This way we will stay ahead of any problems and have a plan set up if a problem arises. She will need two more surgeries which will redirect her blood flow to the lungs. They will be around 3 months and 2 years of age.  The surgeries are going to be hard and there will be a big risks involved, but honestly, this is all way better news than we were expecting to hear. I can do this. As she grows and gets bigger and her lung pressure changes there will be more risk but she will be closely monitored her whole life by a cardiac team. There will be a risk that the surgeries fix will stop working and she will need a heart transplant, which comes with its own risks. But we will cross that bridge when we get there. Her every moment, every day is going to be a blessing. We are going to bring our baby girl home. 

This is all assuming her heart is the only problem. So far it sounds like it is. We have follow up appointments with all of these doctors in a few weeks to check her growth and her heart and my pregnancy to make sure everything is going well. We will have a lot more ultrasounds in the next 18-19 weeks and she will be closely monitored, well forever. I will be switching my OB to the University Hospital and then I will deliver her right at the Children's Hospital with their OB's and cardiac team. I am pretty sure we are going to opt for a scheduled induction. As much as we know there is a long road a head and it is going to be tough, we are so relieved and so happy that we are going to get to hold our little girl. 

Even though we got good news, please keep praying. Maelyn still needs a lot of healing. Ben told me last night that God is going to fix her broken heart, not the doctors. I believe that can happen too! I believe God can twist her heart back into place in her chest, I believe God can grow that right ventricle, I believe God can make her a miracle baby that will blow her doctors minds! Keep praying with us for all of these things. 

Our Colorado Baby

The support and encouragement we have gotten this last week, and even before, has been incredible. Thank you all for your prayer and your encouragement. 

I was blessed to be able to meet with a facebook friend who has gone through her own loss. She shared her story with me and how she walked through the grief and how she walks with it everyday. I am grateful beyond words for her openness and her support. We talked for over 2 hours, about everything. She gave me a book to read called I Will Carry You by Angie Smith. I have only read the first few chapters, but it has already been great. My friend also encouraged me to try to experience Colorado and wants me to fall in love with it here. I am not sure that is going to happen but I told her I would try, for Maelyn's sake, since she is my Colorado baby. 

So we did the Colorado thing and drove up into the mountains. The boys took an early nap and then we loaded them, and the dog, into the car, thinking it was a really nice day, we would drive the loveland pass and then go for a walk at Dillon Lake. Well a nice day in Denver looks much different at the top of the mountains. And I guess we thought that our family would be better at road trips since the kids are a little older. Ben was excited at first to see the mountains and the lake, but half way there it was, "moooommy, I wanna go home. I wanna go home. Can we go home." Luckily Micah didn't start to whine until we were about 10 minutes away from the lake. So I'm watching for the lake, I see it on the map right next to us, but I don't see it! And then I realized, duh, it's January, the "lake" (aka reservoir), is totally frozen over and covered in snow. I guess the only lake I've seen in the dead of winter is Lake Ontario and it doesn't freeze over so I wasn't expecting it. But we all needed to get out of the car because we've been sitting for so long, BUT it was freezing and windy. We walked about 50 feet took 2 pictures and headed back to the car. 

Tim and Ben looking at the eagle
with the lake and mountain in the background

Micah and Maelyn at Dillon Lake

Micah does not like the cold but was really mad about getting back into his seat so we started trying to think of somewhere we could go that he could crawl around. So we went to the Carters outlet which said that it had a play area. The play area was just a small lego table, but it was something and it worked. I walked around and shopped while Tim and Micah played legos and Ben basically just roamed. I wanted to get Ben and Micah matching Big Brother shirts, but Micah's size only had little brother shirts. I also browsed the girl things and thought about what it would be like to be able to get Maelyn cute girl clothes. But we have a long way to go before we can think about clothes. Once the kids were about to destroy the store we went to dinner. They were happy to have crayons and straws and french fries. We never take them to restaurants, they did really well. Then we headed home in the Sunday mountain traffic. Micah was exhausted and fell asleep but would wake up and cry for a few minutes, then fall asleep, then repeat. Eventually he stayed asleep. Ben was bored and whiny. We try to never give him our phones to play with but it became the only option for a peaceful drive. So he was content playing for a while. Then he started to whine and gave me my phone back and I didn't understand why he was whining and then it happened. He threw up. He threw up the last time we attempted a car trip into the mountains, so we were more prepared but we thought we were going to make it home this time! After he threw up and we pulled over and cleaned him up and got back on the road, he fell fast asleep. It was a long day. It took us almost 3 hours just to get home.

I am just not a mountain person, I am not a car trip person (unless I'm going somewhere really worth it, like the beach). I told Tim, I'm sorry, but it wasn't worth it. I think I am going to need another year before we try to attempt the mountains again.

I've been trying to have worship music playing a lot lately. It has been really helpful. God speaks to us through song and it has been keeping me grounded and not letting my mind wander too far. Love and the Outcome has been my go to artist these last 4 months. All of their lyrics just hit me and seem to speak into my life. Specifically, He is With Us, Heart Like You, and The Story You're Building in Me have been my go to songs. Go listen to them! Whenever I am pregnant the song From the Inside Out also holds special meaning to me. For me, pregnancy is an act of worship. I will worship Him from the inside out, including this little life.  I've also been reading the psalms, which has been really helpful.

With the high risk of this pregnancy I've been very in tune with Maelyn's movements. And I told Tim, I feel like I need to tell you every time I feel her, just to let him know she's alive and to help him feel connected. Like last night I felt I needed to tell him that she really liked my burger. Each morning I've been waking up and waiting for her. It usually takes me eating breakfast for her to give me a good kick. And each morning I rejoice, she's still alive! I'm trying to think of more ways to make her more a part of our family and for Tim to feel connected. We try to pray for her at night with the boys. The book I started reading has given me some ideas. The main thing is going to be talking about her and being ok with talking about what is wrong with her and figuring out how to do that. Right now it is hard for me to say her name out loud. I know it will get easier, and as we have more answers and a plan for her it will be easier to talk about. We should have a lot more information tonight. 

Continue to pray for her heart and her body. Continue to pray for God's will and peace. Pray for the doctors at the children's hospital to have wisdom and hope and that they would see something special in Maelyn. 

Hope for life

Praise you Jesus that you give us life and only life to the fullest. 

These last 4 days have been such an emotional roller coaster. I think we started out with the worst case scenario and so every day has only gotten better. While Maelyn still has a long way to go and is still at a super high risk of being still born, I feel like I finally have hope that I might get to hold my daughter.

We got the call today that the initial results from the amniocentesis came back NORMAL! She does not have any of the trisomy disorders, she does not have any sex chromosome defects, and she does not have Digeorge syndrome, which is associated with heart defects. This is amazing news, this gives us hope that she can attempt surgery, and maybe even survive surgery. We will get more results in a couple weeks with a full chromosomal break down which will tell us if there is anything else wrong. Pray that the rest of the results come back normal too!

We meet with the cardiologist at Colorado Children's Hospital Monday. I am anxious to see what they find out about her heart and what they think about her ability to make it through surgery. But after this good news I am confident that God has bigger plans for her. I am anxious to see Him heal her heart. I am ready for the cardiologists to be in awe of the miracles they are going to see happen in her heart. 

Pray that God would keep her heart pumping! Pray that God will fix her heart in utero! Pray that she would be a miracle! Pray that she would be a witness to Gods goodness! 

Psalms 6:9 The Lord has heard my plea, the Lord will answer my prayer.

Psalms 9:1 I will praise you Lord with all of my heart, I will tell of all of the marvelous things you have done for me. 

John 10:10 The thief comes only to steal and kill and destroy; I came that they may have life and have it abundantly. 

Maelyn Aletta: Behind the name

So, some have asked (and some I have just told) where Maelyn's name came from, and I love it so I wanted to share. We've had lots of time to think about girls names since she is our third pregnancy. Lyn has always been the middle name I wanted to use. Lyn is a family name for me since my mom is Lynda, I'm Katelyn, and my sisters middle name is Lynn. But I also love Aletta which is a family name on Tim's side. It is his grandmother's name and mom's middle name. I really liked Mae. I think it is really cute and pretty. So as I'm thinking about it, I'm like why can't I just combine them and get to use both names for one kid? Hence, I came up with Maelyn Aletta and somehow convinced Tim.

The funny thing is. We were pretty set on a different name (I actually had told some people she was going to have a different name, sorry people) but the week or two before the ultrasound I was having second thoughts. So I re-presented both names to Tim and let him pick between the one we previously agreed on, which we have agreed on since we were first married, or Maelyn.

I love Maelyn. 

Our hearts

Yesterday we went for another ultrasound at the Platte River Perinatal Center. I am so thankful that my friend was able to watch the boys for us. She is a saint, with her own 1 year old, 2 year old and being about-ready-to-pop pregnant, she joyfully took our two and made us all an amazing dinner. 

While we sat in the waiting room, Tim and I were actually able to have a good and calm conversation about what what we would do if/when Maelyn passes. God has definitely been with us through this. When we started talking about it, we both had a peace and we had both been thinking the same things. We easily agreed on everything we talked about because we had both already had the same thoughts. I am glad that we were able to have that conversation that way. It felt like a pleasant conversation, not a morbid one. And this way we've already discussed it so if or when it happens we wont have to have a discussion. 

We met with a group of two doctors, a nurse and a sonographer who all specialize in high risk pregnancy and fetal diagnostics. This is what they do! They started a whole full anatomy scan. Maelyn was sitting upright and cross legged right on top of my bladder, with her hands all over her face, which is probably the worst position for the ultrasound. Watching this ultrasound was much different than the first. We asked a lot of questions and we knew what we were looking for. It was a really long and thorough ultrasound. Instead of watching her move and be cute, we were focused on what was actually there. We counted fingers and toes and I had them check four times for a cleft palate. They checked for several other things that would be an indication of her having a chromosomal defect and did not find anything new. She seems to look like a normal little girl. When they checked her bowels, they saw what the OB pointed out but they did not seem concerned as it looked minor. Her stomach and heart are still not inline with each other as they should be. We were told this isn't a big deal, it usually just indicates a heart problem, which we already can see. 

Then we got to her heart. Her little heart is a mess. There are definitely only three chambers. I kept staring and counting, hoping we would find a little fourth chamber hiding in there, but every time, only three. Apparently this is a rare but not super uncommon condition, I think it's called hypoplasic left ventrical (or right, they are not totally sure yet). The scary part for me was at the end when the sonographer sat there staring at her heart for a long time. I eventually asked what we were looking at and she started with, "well, I don't know." She could not figure out what was what, where both arteries were and where the arteries were going in and out. The doctor described her heart as twisted at one point. He also was not sure if it was the stomach out of place or if the heart is on the wrong side. I am not sure but it just sounds really bad. I wonder if this is worse that the typical hypoplastic heart. I asked a few questions about this heart condition but was told I would have to wait and ask the cardiac specialist. 

This doctor finally gave his findings. Obviously, the heart is an issue and they don't even know what they are looking at so they are referring us to a cardiac specialist at Colorado Children's Hospital. There they will do a full heart work up and they will figure out what is going on. Then with them we can formulate a plan for her heart. This doctor does not think that Maelyn has one of the most severe chromosomal defects and said there is a chance she doesn't have any chromosomal defects. But there is a chance that she may. We need to know if she does have any type of chromosomal defect because that will greatly affect her odds of surviving the many heart surgeries she is going to need. If she is totally fine, other than her heart, she has an 80% chance of surviving her first surgery. If she has a defect she has a 20% chance of surviving surgery. If she survives the first heart surgery she would still need 2-3 more. Other than that the doctor could not give a lot of information because he is not the heart specialist and we do not have a chromosomal analysis yet.

We decided to go ahead and do an amniocentesis in order to thoroughly check for any type of chromosomal defect. The amniocentesis was a very weird experience. The discomfort only lasted the night and I feel fine today. We should have preliminary results tomorrow, and more results in a week or two. We are going to meet with the cardiac specialists on Monday. Once we have all of the information we can start formulation a plan for her. I will most likely change my OB care to the Children's Hospital and deliver there so that she can go straight to surgery. However, we are living with the fact that her heart may stop working at any moment. With this heart there is also a very high risk for a still birth. While we left our appointment with some hope, Maelyn's chances of surviving are not great. 

I do have more hope. I do believe that God still has 4 months to straighten her heart out and heal her body. But I also still trust that she is His and if He needs to take her to be with Him, it's ok. We love our daughter so much, and we want what is best for her. I am wrestling with the idea of her struggling outside of the womb, when she is so cute and happy in there. 

On our drive home last night I checked my phone and listened to my several voice mails from parents and doctors. I was expecting a call from Micah's metabolic doctor with lab results and told him to leave the message. He said that Micah's labs were way down, from mid 600's to mid 200's (they are supposed to be under 150, but for Micah that change is amazing). I started crying, I needed that. They are not going to change anything about his treatment plan until we get genetic results back and they can tailor it to his type. They want to see him back in their office in a month to check his liver. This was all good news I needed. It is funny how when I had a bad day finding out Micah needed the biopsy, Maelyn made my day with that 8 week ultrasound. Then when I am having bad days because Maelyn is sick, Micah's test results come back better. The two of them already playing off each other, I'll tell you, they are already siblings. 

I decided to tell Ben about her this morning. I told him that he has a sister and her name is Maelyn but she is sick. He pointed out that she is the baby in my belly, and I agreed. Other than that he didn't want to talk about it. Then at breakfast he looked up from his bowl and just said, "I have brother and a sister and they are both sick". I just about fell over, luckily I was standing next to the wall. It broke my heart. He pointed out one thing I've be wrestling with and hoping he wouldn't notice. We aren't supposed to have 2 medically needy kids, that's not how it's supposed to work. And Ben, as the healthy one, shouldn't have to deal with that. Who knows what his idea of sick is right now. Micah has a cold, so he could just think of that, but he is a smart kid. In my heart, I think he knows. He is such a great big brother. He has been going out of his way all week to share and be nice to Micah. He went with us to Micah's blood draw yesterday and he did really well. He is always concerned for Micah and wants to be by his side when he comes to the appointments. 

I realized last night that it is now really ironic that the blog is called the heart of the Stockers. Also because Micah has a slight chance of developing heart problems due to his glycogen storage disease. So the blog is about our hearts for God, but also, literally, God healing our kids hearts. So pray with us that Micah's treatment keeps going well and he only keeps getting better. Pray that God heals Maelyn and fixes her heart. Pray that God protects Tim and I's hearts as we continue to grieve for our little girl. Pray for God to continue to strengthen and prepare big brother Ben. In general pray for finances, that insurance is forgiving and we can handle all the payments. Pray for scheduling. We have so many different doctors, it's hard to keep everyone's straight, and so many appointments I need to find child care for, I am getting overwhelmed just with that and Tim is taking a lot of time off work. Continue to pray for our sleep and the 2 am feedings. Pray for God's peace and presence in our home. Pray for God's will to be done and not our own. I pray that others would come to know Christ better through Maelyn's little life. 

Praise you God for all of my children. 

But you, O Lord, are a shield around me; you are my glory, the one who holds my head high. 
Psalms 3:3

Meeting Maelyn

The 20 week ultrasound is the highlight of pregnancy for me. I love seeing the baby move and all their little hands and feet. But most of all I need to find out gender and that is the most exciting part. With this pregnancy I was pretty sure the whole time that this was my baby girl. She had me so sick, the whole time, and more emotional. I knew she wasn't a boy. But I was still so looking forward to the ultrasound to confirm that she was a girl and we could finally name her! We were excited to tell Ben if he was going to have a brother or sister and tell him her name. I was thinking that if she was a girl I was going to get a pink tut and take a picture of the boys with it! 

On the way to the ultrasound I reminded Tim that as excited as we were, we have to remember that "technically" the ultra sound is meant to look for problems, but that had never been an issue with our boys and we are young, healthy and don't have any reason to be worried. Once we got in the room we were telling the friendly sonographer about Ben and Micah as fetus's and talking about this baby. We told her we wanted to know gender as soon as she saw it so that's where she started. We all saw it at once, she was definitely a girl! The rest of the ultrasound I was just processing having a GIRL and watching that little baby squirm and suck on her hands and toes. I loved watching her move and she looked so cute and perfect. The sonographer was very chatty and bubbly the whole time, talking about little girl. Looking back, I saw the problem but I was so distracted by her being a girl and the bubbly sonographer that I didn't think to ask. So once she was done we were told to wait in the waiting room for our appointment with the midwife and she would bring us out some pictures. Tim and I sat in the waiting room talking about having a girl, and what that would look like and we talked about names. We had one picked out but I had been having second thoughts. I told Tim I was leaving it up to him between the two names. We texted our siblings to let them know she is a girl. After about 40 minutes we went back for our appointment but then sat in the room for almost a half hour, still talking about baby girl. 

My favorite picture because that is a hand and a foot above her face!

Mouth open, sucking on hand

When the doctor came in I was confused because I was supposed to see a midwife. She told us that there was a scheduling confusion and the midwife wasn't in. I had seen this doctor the last time I was in when I was sick so she asked me how I was feeling. We talked about me for a few minutes and then she picked up her stack of paper and pictures. She casually and slowly told us that there were several concerns with the ultrasound and listed them off, one after another. Our baby only has three chambers in her heart. the heart and stomach are supposed to be inline on the left side of the body but our babies stomach is on the right and the intestines should look gray but showed up bright white which is an indicator of something in them. With all three of these things showing up she was pretty sure that it meant that our baby has a chromosomal defect, so she is going to draw blood from me so that they can extract the babies DNA and check for the defect. 

We kind of sat there in shock. I was trying to fight the tears because the way she told us I wasn't sure if it was crying material, but it sounded really scary. She asked if we had any questions. Tim double checked that they were sure and didn't need someone else to check. The doctor was sure that ultrasound was right. I was very concerned about the heart and asked if she could live with only three chambers. The doctor said, no, but if that were the only problem, she would need a series of 3-4 surgeries to fix her heart. But she said that a baby with a chromosomal defect would not survive the surgeries, and we could discus termination if we wanted. I finally really lost it and started to cry. The doctor then left us to process and said she would be back in a few minutes to get me for the blood draw. 

When she left we just held each other and sobbed. We had about 2 hours of happily envisioning our life with a healthy baby girl (not to mention the whole pregnancy) and then suddenly her whole world came crashing down around us. Her little life flashed before my eyes. Through the tears Tim said, "her name is Maelyn Aletta, she needs a name." We talked a little about outcomes, knowing it wasn't good and we swore that God could heal her, knowing that is the only option. The doctor came back and asked how we were doing..... and told us she was sending us to a perinatal specialist. 

We cried some more on the way home. We (sort of) held it together getting the boys, feeding them and putting them down for naps. We let our family know what we had learned, the best we could. And I stared researching online feeling like I had no idea what this all meant. My findings basically just confirmed my suspicions. It does sound like a chromosomal defect which will take her life. If it were just one of the three things, we might have a chance. But even if it is just one of those things it will mean a lot of surgery and intensive medical care.

I laid awake most of the night praying. Praying that God would give us a huge miracle. That we would go back for an ultrasound today and she would be better. But I am praying that if He isn't going to make her better that he would please take her home. Because in heaven she doesn't need her three chamber heart or her stomach and intestines. In heaven she is His perfect angel and she will not suffer through life without a functioning body.

A quick Micah update

Honestly, Micah is the least of my concerns right now. But I'll write about all of that tomorrow. I haven't really let anyone know how the 2 am feedings have been going because I don't really know. We started them about a week or so ago. I have been struggling with insomnia. Tim has been great about getting up to feed Micah. I did it one night because I had already been awake for 2 hours, so I told Tim I would just do it and then I laid awake for another 2 hours. Then Tim was on a 2 night business trip so I had to be on night duty. I did not get much sleep. Micah ended up getting sick with a bad cough so we were both up a lot the first night, but really I just couldn't sleep. When Tim got home I used my ear plugs and got one great nights sleep, before last night, but I'll write about that later.  Micah does ok with waking up. Most nights he drinks it all and goes right back to sleep. When he was sick he struggled to drink it all, threw it all up one night, and one night he laid awake for a while after. His ketone levels were not improving like they were hoping so we increased the 2 am dose of corn starch. I'm really hoping we don't increase again because its starting to get thick. But his ketones are still just not looking right. So this morning I am taking him to have blood drawn to check and see of the corn starch has been helping all of his other levels, because even if his ketones look off, we need to make sure his triglycerides and lactades are going down and his liver is getting smaller. That is the goal. We want his body to not show signs of distress, we want his liver smaller and we want his energy levels up. However this is a fasting blood draw so I have to take him (and Ben) there with out breakfast (which for GSD is a big no no, but doctors orders). So I have lots of snacks shoved in my purse for as soon as its over. Then this afternoon Tim and I have another appointment for baby, so I will share about what is going on with baby tonight or tomorrow. But if you are reading this right now, please please pray for our family. Pray for healing for baby. Pray for me. Pray for my insomnia. Pray for the boys. Pray for Tim. Pray for miracles and strength and comfort and peace and love and all of God's goodness.

Such Blessings

I am so blessed.

I have two amazing little boys who give me so much love and joy. And I have another little baby who it starting to give me little pokes from the inside. There are moments, ok hours, ok sometimes days, when the boys drive me absolutely nuts and I just want to walk out of the house screaming. But mostly, they are sweet, giggly, cuddly, hilarious, precious, loving, adorable little boys. Through all of this stuff with Micah's diagnosis, I am becoming more and more aware of how blessed we are that we are all actually so healthy. He is healthy, he just has to manage some stuff. We are so blessed that we are not living in a hospital and that we don't have to worry about tomorrow.

And there are times when I swear, if I knew this pregnancy was going to be this hard and sickening, I would not have gotten pregnant! But that's not true. I know this baby is going to be perfect and worth all the pain. As I start to feel little kicks and jabs from the inside I can't help but think about what she/he is going to be like. Perfect of course because God created him/her. I need to try harder to enjoy this pregnancy because pregnancy is a gift, a miracle, a blessing. There will be a day that I will forgot how incredible it feels to be growing a tiny human in me, and I don't want to take it for granted.

Tim is super daddy and super husband. I may be the stay at home mom, but when he can, Tim helps with cooking and laundry and cleaning and he bathes the boys and he gets up in the middle of the night and he loves his boys so much. I am so blessed to have such an amazing husband. We have a little saying to each other that we've said since we were dating. We just say, "you are perfect, for me." And I love it because it reminds us how much we appreciate each other and love one another, and that we are meant to be together, not with anyone else. It also reminds us that we are human. We are not perfect, but together, we can try our best. Tim truly is my other half, I don't know how I would function without him. He is always there for me and holds me up when I fall. He brings me back to reality and to God when I loose sight. He is so level headed when I am not. He models faith for me and he is the one who has helped me grow in my trust of God's plan and teaches me not to worry. It was God that put us together almost 12 years ago. We trusted God with our relationship and we are so blessed.

I thank God every day for my husband and my kids. My life is a blessing.

1 in (over) 100,000

I always knew God created Micah and made him unique and blessed but listen to this! Glycogen Storage Disease is said to be found in 1 of 100,000 newborns, and of those there are over 10 different types of the disease one could have. The majority of people diagnosed have either type 1a or type 1b. We know Micah is not a type 1. That kind of blows my mind how rare this whole thing is. He really is one in a million! I've been getting anxious to know what type of glycogen storage disease Micah has. Once we know what type we will know more about what is going on in that little body of his. Part of me is worried that he wont even fall into any of the known types because the disease has so many variations and his symptoms are so different than most. But that would just make him even more unique than he already is. When I talk to the doctors this week I will ask if they have heard anything yet. 

We've done two nights of 2 am wake ups. Tim, AKA super daddy, has been getting up for it. I am usually awake in bed during it anyway but I fall back to sleep right away if I don't get out of bed. (If I get out of bed I'm usually awake for at least an hour). I know eventually it will become a routine and we will take turns and hopefully I will learn to sleep through Tim's turn and fall asleep faster on my turn. 

I am not a doctor. I need to remember that because these ketone level numbers just do not seem to make sense to me. I'm hoping the doctors feel differently. I have been wondering if somethings is wrong with our monitor and we finally decided to test it tonight. It tested fine, but I think there is just a larger margin of error for every read than I would like. The reason we have not wanted to test it is, the ketone strips are $2 each, so I didn't want to waste one on a test. The reading is to the nearest 0.1 and the test said that the monitor is functioning properly if the test result was between 0.5-1.1. So does that mean that there is a 0.6 margin of error every time? I guess if there is then maybe his levels do make sense? Again, I am not a doctor. 

So I had heard about this program and Doctor Weinstein, and when I was looking at the site I thought to myself, wow that is a much better explanation that I could ever give. So here is a website that gives a lot of great, easy to understand, information on Glycogen Storage Disease in case my attempt was not quite enough. UFHealth Glycogen Storage Disease Program

Thoughts on 2 am feedings

Having your baby out grow 2 am feedings is usually a mile stone that parents thoroughly rejoice over. And let me tell you, it took us a long time to get Micah sleeping through the night, so we were beyond thrilled when we stopped feeding him at night. You never think that you will have to wake yourself up at a horrible hour ever again to feed that baby who is growing into a child. So when that became an option, Tim and I were both totally against it. It was mentioned when Micah was discharged from his hospital stay for the biopsy and we basically ignored it. Then when his morning glucose levels seemed fine we put it out of our minds. We had worked so hard to get Micah sleeping well and he's only been doing a great nights sleep for a couple months. The thought of changing that back is just a huge bummer. But now, knowing why it was so hard to get him to sleep all night, makes me feel horrible. His little body was in distress and his blood sugar was dropping, possibly dangerously, low. We were asked several times if he ever had seizures or periods of unconsciousness. We always said no, because, that we know of he didn't, but I wonder sometimes what happened to him at night when we had to just let him scream. I try not to think about it. God was protecting him, and every morning he woke up fine.

Micah at 1 week and Ben at 18 months.

Now he is a great sleeper and will even hang out in his crib after he wakes up in the morning. But now when he wakes up, I feel a panic to get in there and get him fed. And some mornings he is a little bit more groggy and doesn't seem to feel well when I get him up. On the worst days he will throw up. It wasn't until about two weeks ago that I made the connection to his weird mornings and his disease. With kids, you generally know you will never sleep in again, but with Micah, I can't ever sleep in again, because he needs to eat something ASAP in the mornings. And now, there is a chance we will not even get an uninterrupted nights sleep for the next 5 or so years. Knowing we will have a new a newborn to feed all night long in 5 months is enough of a sleep stresser. I can't imagine having an alarm set for 2 am with a newborn sleeping next to me. As I have been trying to prepare myself for this, all I can say is pray for us! Lord prepare me! Pray that I handle all of the new sleep schedules well and that God gives me extra strength! Pray that when baby comes he/she is a good sleeper from the start and that babies schedule quickly lines up with Micah's.

Ben and Micah, just over a year later.

After a huge hassle and headache, it took us over 2 weeks to get a hold of the ketone blood strips. So we start the 2 am feedings tonight and talk to the doctors on Monday to see what they think of the ketone levels. 

Psalm 29:11 The Lord gives his people strength and blesses his people with peace. 

I also wanted to share a song that has been on my heart. I've been thinking about the whole "Word of the Year" devotional thing, and even though my one word is still working itself out, this is definitely my 'song of the year'. 

Love & The Outcome - Heart Like You

Christmas/New Years

The ketone monitor and strips ended up being difficult to find. Once we got it, we started Micah on the one teaspoon, then had to up it to two teaspoons because Micah's ketone levels in the mornings were not improving and were not good. Even on the two teaspoons, his ketones didn't change and didn't seem to show any trend. We were told we needed to check his ketone and glucose levels at 2 am as well as in the morning. So my amazing husband got up at 2 am and checked Micah's ketone and glucose levels. Micah did great, he didn't mind being woken up and he has never seemed to care about the finger pricks.

 I talked to the doctor a couple days before Christmas and he said that we needed more 2 am blood checks to try and see what his nights look like. The doctor mentioned that we might need to do a planned inpatient at the hospital so that they can do regular blood draws through out the night for a couple nights. This terrified me, I do not want to do this. So, he asked us to do three nights however we only had four test strips left and since they are had to get a hold of we could only do two nights. Tim had come down with the flu, so it was mommy's turn to do the 2 am thing. I decided to skip Christmas with the 2 am wake up, so check it the morning before Christmas and the morning after Christmas. 

Unfortunately, I got sick the day before Christmas. So Christmas day Tim and I were super sick, but the boys were feeling fine and Tim's parents came to visit. We still had a lazy fun Christmas with plenty of gifts and Christmas movies. We delayed Christmas dinner until the next day. But as soon as we sat down for our big Christmas dinner, Ben got sick. So we ate in shifts and it was a little less appetizing. Ben recovered quickly, luckily Micah never got sick. Tim's parents stayed for a week, through new years. We did nothing all week. By New Years eve we were feeling better and managed an awesome crab dinner (my absolute favorite)! We were able to facetime with Tim's siblings. We stayed up until 10 and watched the ball drop with the east coast, it was perfect.  

Christmas morning, opening stockings.

After Christmas the doctor called me to talk about how the 2 am levels were. I told him we did two nights and ran out of strips and couldn't get any more. The doctor explained that the corn starch at 2 teaspoons is working but only for 6 hours. Apparently corn starch has a 6 hour digestive life span. So we need to give him 2 more teaspoons at 2 am. I really pushed to see if a higher dose would work because getting up every night at 2 am is the last thing I want. But the doctor said that probably will not work so it is best medicine for him to tell me to do the 2 am feeding. 

Since we were out of test strips he said we can wait to try the 2 am feedings until we have them, otherwise we wont know if it is working. Once we get the strips (which should be today) we will start waking Micah up at 2 am and giving him corn starch and checking his blood levels. After three nights I am to call the dietician who will talk to the doctors and they will get back to me with a new game plan. There is a chance they will try going back to corn starch just before bed but based on what I've seen and heard about corn starch/ketone levels, it sounds like the most likely outcome is that we will be getting up at 2 am every night for the foreseeable future. 

Glycogen Storage Disease

When we got home from our long trip we had a super busy week of Christmas festivities. I think I had 5 Christmas parties in that one week. But it was just what I needed to get me grounded and in the Christmas spirit. I made cookies, wrapped presents and we got a tree and decorated the house. It was glorious! I love Christmas.

Tim, Micah and I met with the new doctors that week. We now have a metabolic attending, fellow and dietitian. They thoroughly reviewed Tim and I's whole family history and Micah's medical history. They explained Glycogen Storage Disease as best as they could to us. Here is my non scientific explanation. Most peoples bodies take sugars that are ingested and turn them into glycogen which is stored and slowly released over time to give us energy and maintain our bodies during periods of fasting. Micah's body doesn't know how to use that glycogen so he is not using it for energy and the glycogen molecule is getting stuck in his liver. So when he goes a few hours with out eating, his body doesn't have the glycogen and is using other forms of energy and after a while it puts his body in a lot of distress. There are 10 different types if the disease, some with sub types. We do not know which type Micah has. The best way to figure that out is genetic testing. So we are waiting to hear results. We were told it could take months. The doctors have ruled out several of the types due to Micah's lack of symptoms. It is obvious he has a mild type because his only real symptoms are an enlarged liver and consistently elevated blood levels. However, they assured us that regardless of type, they would begin treatment the same. Knowing the type will help us figure out what to expect for the future and it will help us figure out baby #3's chances of having it, since Glycogen Storage Disease is a genetic mutation. 

We met with the dietitian after the doctors. I was expecting a more extreme change in diet but I had already been doing what she said. Since he is only one year old, I already limit refined sugars. I was expecting to have to attempt to cut them out completely but she said he is still allowed a treat every now and then, which made me feel better. I was imagining he was going to be that kid at the birthday party who couldn't eat the cake or wasn't allowed to eat any halloween candy. So he can still have those things, just in moderation, which now I have an excuse to be that mom. Fruit is fine but he shouldn't really have juice. We need to try and limit carbs to complex ones, which we generally already try to do. And he needs a lot of protein in his diet. He already drinks half of his protein intake in milk, so we just do a lot of yogurt, cheese and peanut butter, since he is not a fan of meat yet. The big thing for people with GSD is the over night fast. So to help his body get through that we have to give him uncooked corn starch before bed mixed with milk. Uncooked corn starch is difficult for the body to process and therefore takes a long time so it helps his body have some sort of energy source while he is sleeping. It is generally not good to eat uncooked corn starch because it is hard on the body and high in calories, but for people with GSD it is the only type of medication to help. So we were to start him on one teaspoon of corn starch before bed and then in the mornings check his blood sugar and ketone level (which is checked just like blood sugar). It was a pretty long a appointment and Micah was tired and irritable by the end but he made it through one more blood draw. 

I was feeling pretty good when we left the appointment. It all sounded really manageable and much easier than I expected it to be. I was really thinking that we would give him the corn starch and it would work and all would be great! But is life ever that easy? 

Just for fun picture,
I let Micah start riding in the car with Ben at the grocery store.

Our trip to NY

When we moved, Tim and I had talked about going to NY for Thanksgiving and staying home for Christmas, but after we took a long and expensive trip to NY in July we had been thinking we were not going to make the trip again. However, by the fall I was getting pretty home sick for the east coast and being pregnant and we are not sure what our summer will bring. So we figured out how to use Tim's airline miles and were able to make the trip work. The catch to using the miles was that we needed to be in NY for something like 16 days. Tim was able to work remotely for most of it, since he doesn't have unlimited vacation time, shucks. One thing I knew I needed was a road trip to PA if we were going to make it to NY. So we planned our big trip!

We stayed at my parents B&B for the 2+ weeks and were able to fit our two car seats in their Prius. (Thanks mom and dad!) Tim and I took a road trip to PA and left the boys with my parents for a night. Again, huge thanks mom and dad!! We got to catch up with lots of friends we hadn't seen in a year and we went to Christmas Candy Lane at Hershey Park! We spent the night at the Messiah College Alumni house, which was actually really nice! We went to McBic in the morning and got to see more friends and hear from pastor Layne and worship with Lindsey! I was hoping we would get to PA and I would feel like I was visiting, but as soon as we drove up to Mechanicsburg, I felt like I was home. I was so glad we were able to make it back, even for a short visit. 

           

My sister and her family came from NC and stayed for a week with us! We got to see our other siblings and their families a lot too. It is always hard to balance time between everyone (and nap schedules) but we made the most of our time. We were able to celebrate Thanksgiving and Christmas with both sides of the family. We went to Lollypop farm, Rochester Children's Museum, the mall and lots of trip to Grammy and Papa's and Aunt Tara and Uncle Dave's house. We were able to see almost ALL of our extended families too. The only family we missed was one aunt/uncle on each side and a couple cousins. I was lucky to be able to catch a huge family bash for my aunt where I quickly caught up with all of my aunts, uncles, cousins and their kids. It was great to see them all! Some I hadn't seen in so many years! Tim's grandmothers came to visit and his family from PA came up and were able to visit. It was a whirl wind, since everyone was in town over the same weekend but we crammed it all in and then had lots of down time with Nana and G-pa while Tim worked and went on a quick business trip.  We even got to play date with Jen and her son who just moved back to NY from CO! Here are a few random pictures from the trip, I realized when we got home I didn't get very many. 

One flight home I got to sit by myself because of the tiny plane.
He is super dad!

The biopsy

On a cold Tuesday morning I was wrestling the boys into their car seats to try and get myself to bible study on time when I missed the call. So once we were all strapped into the car, with the heat running, I listened to the voice mail from the liver specialist. She was brief but stated that we needed to go ahead with the liver biopsy and she would try to call me back. This was a breaking point for me. I had been praying against this so hard. I did not want to go through with the liver biopsy and I only had this short voice mail and no more information about why we need to go ahead with biopsy. I just started to cry, why God, I do not want this! My little one year old can not have surgery! I tried to call Tim, about 5 times, but he was in a meeting and couldn't talk. Once I got to church I dried myself up, took the kids to childcare, snuck into bible study and squeezed into the table my friends were at. It only took about 2 minutes before they all asked if I was ok. I cried and explain that I just got a short voice mail and was just overwhelmed with the idea of a biopsy. The table of women immediately stopped and prayed for me and my family. It was just what I needed in the moment.

Later in the afternoon I got in touch with the doctor and she explained that the blood work came back and ruled out a couple of disease but she needed to get the biopsy to confirm her hunch. This was the first I had heard Glycogen Storage Disease mentioned. It was a huge relief to actually hear a possible diagnosis. It was a relief to know that they knew what they were looking for and that all the blood draws and tests were not unnecessary. She explained again what the biopsy would entail and said they would call to schedule with me. We were told he would be under anesthesia for 10-15 minutes. It is a minimally invasive procedure, only a needle, but due to the tissue of the liver there is a risk of internal bleeding. He would need to have blood work done several times after the procedure and would be closely monitored. It would most likely be an over night stay at the hospital due to his age. I was feeling much better about everything but was still nervous about the biopsy, but I was able to start mentally preparing myself. 

I had my first ultrasound the afternoon we heard we needed the biopsy.
This is how we announced baby to family.

It took what felt like forever to get the biopsy scheduled. I was waiting for them to call for 2 weeks and they never called. We had our trip to NY planned and I was getting nervous the procedure would interfere with our trip or just be delayed until after which would be close to Christmas. So once I called I found there was a problem in communication or the computer system and the scheduler did not have the order in the system so I called the nurse, the nurse called the scheduler, the scheduler called me back, it was stressful. But it was scheduled for about 2 weeks out, just a few days before we were to fly to NY.

My friend, Jen, was able to come spend the whole day of the biopsy at our house with Ben and her son. She was actually excited for them to be able to spend that time together before they moved. She was a huge blessing because I did not have to worry about Ben at all during everything. The whole day was so overwhelming it is hard to look back and remember everything. I had to wake Micah up early and be out the door, so Tim left after us and met us there. Micah had to fast for the procedure so he had some apple juice when he first woke up and then nothing all day, which was a huge concern for me but he did surprisingly well with it. From here, I'm just going to paste in the email I sent to family the day after the biopsy.

Yesterday went, probably, as smooth as possible. I could tell that God was carrying Micah (and us). There were a few very small things that came up as potential problems but never were. From the moment we stepped into the operating room I have been focusing on these two verses. "I will restore you to health and heal all of your wounds" Jeremiah 30:17 and "The Lord is my strength and shield. I trust in Him with all of my heart." Psalm 28:7

Micah did well all morning up until about an hour before the procedure when we went into the pre-op room. He just kind of lost it, he was hungry and tired and there were people in and out and talking and he was done. They still needed to do a quick ultrasound before the procedure so they did it as fast as possible while he just cried. We were able to walk him back to the operating room and hold his hands while they gave him the mask for anesthesia. Once he was asleep we got to give him a kiss and then we went to the waiting room. The doctor came out about 20 minutes later and told us he did great and was in recovery. We had to wait a little longer before we were taken back to see him. It was pretty sad to see him all groggy and unhappy and with tons of wires coming off of him. But the nurse had me sit in a rocker and hold him. I got him to calm down take a nap before we were moved up to a hospital room. He did have an IV, I was curious how they would pull that off. They took a washcloth, folded it in half, wrapped it around his whole arm and then taped it on tight. It looked like he had a cast on with his little fingers sticking out. Once we got in the room Micah was doing much better. He guzzled a whole cup of juice and wanted more. He was very mellow all day and we just took turns holding him in the recliner. He took a small nap. Once he was allowed to eat, he did great eating and continued to drink a ton. He had his blood checked three times through a finger prick where they collected quite a bit of blood. He also had his blood sugar levels checked a few times. So he had about 5 band aids on his extremities. But he handled the pricks pretty well, probably because he was on pain medication from the procedure. After we got the results from the last blood check I went home to be with Ben and Tim stayed the night with Micah. Micah fell asleep shortly after I left and Tim was able to put him in the crib where he slept all night. Tim said he was able to sleep. By morning Micah seems to be back to normal. He had a good breakfast. I was able to be on speaker phone with the nurse and the doctor this morning to hear discharge instructions. So he is technically discharged but is not home yet because Tim is waiting to get a glucose meter.

Our next step is, for the next few days, we need to check Micah's blood sugar levels before every meal, especially when he first wakes up in the morning. I'm not sure what a normal range is, but if it is ever below 50 I am to call the liver specialist. She will be calling us this week with initial results and to talk about the blood sugar levels. Depending on the results she gets from the biopsy she might need to send some out to another lab for further testing for a diagnosis. As of right now we are not changing anything about his diet but depending on how things go we are looking at changing his feeding schedule and possibly diet. Which all in all is not bad!

  

Leaving Micah at the hospital with Tim was super hard, but being about 11 weeks pregnant, I needed to sleep in my bed and I think Micah slept better with Tim there too. That day after, we got both the boys in bed and sat down on the couch and I just needed to shed a few tears. It was an emotional couple days and I held it together the whole time. I needed to let it out and breath, we had survived the biopsy day. We were blessed that some friends had dropped off dinner for us. I did not realize how draining and tiring it would be and we would probably not have had a good dinner if it weren't for them.

We continued to check Micah's blood sugar level in the mornings and left for NY 4 days later. The doctor called while we were in NY and confirmed that Micah does have Glycogen Storage Disease and said that she was now referring us to a metabolic specialist and dietitian. Since we were in NY we had to put off our appointment with them until December.

Picking up where I left off, when it all started.

Micah's first birthday. My parents came to Colorado to visit and celebrate Micah's first birthday. We took the boys to the Colorado Railroad Museum, which is Ben's favorite place, and saw Thomas the train. Ben had a ball, Micah was a little scared of the loud steam engine. Then we had a big birthday party at the house with some of our friends here and their kids. It was lots of fun. Of course Micah was clueless. First birthdays are more for moms, then all birthdays after that are fun for kids. But I was happy to have a fun party for him and it just warmed my heart to see a house full of good friends here in Colorado. Ben had huge first birthdays in PA and NY, so I was glad that Micah was able to get a good one too. 

So Micah's birthday was Sunday, Tim left on Monday for a 10 day trip to Germany, my parents left on Tuesday. On Friday I inevitably found out that I was in fact pregnant. So I did what any good wife would do. I texted my husband to let him know he had another kid on the way. He was in a meeting at the office in Germany when he got the news and texted back that he was very excited and then called as soon as he could. I had the weekend alone with the boys, to dwell by myself in the idea being pregnant. Of course morning sickness started before I even took the test. 

Monday was the big day though. The day everything started with Micah's diagnosis. I took the boys to the pediatrician for Ben's 2.5 year well check and Micah's one year well check. We saw a different doctor than we had seen previously, which, as much as I liked the first doctor we saw, I was fine with seeing someone else. I'm a pretty relaxed mommy and don't tend to worry too easily. But this new doctor, a sweet, sweet, little lady, likes to tell you every little detail that is wrong with your kid! I found out a lot about my (very healthy) kids, and I called Tim immediately after to make sure I didn't forget to tell him anything. Ben, even with a few little details, was, as usual, perfectly healthy and on track. Micah though had several concerns. He had not grown even a millimeter in length since his last visit (which I still think was an error in measuring at the previous visit). I now know that the reason this was such a big deal is that it is a symptom of his disease. He has a big belly and always has. The other pediatricians we had seen never seemed to think it was a big deal but this doctor was putting several pieces together in her head. During her abdominal exam she thought something felt off but did not give me details. She just told me that because he has always had a big belly, reflux, and other little things she wanted me to take him for an abdominal ultrasound. I was not worried. I figured it was a good idea, it couldn't hurt anything, but I did not think anything would come of it. 

Mid week, Tim got home and I took Micah for the ultrasound, and the tech told me his liver did look large. I was taken back because I did not know that was an option. She thought I knew that was what we were sent for and then I think she felt bad for telling me. She had to disclaim that she was not a doctor and the doctor would call me. Sure enough the doctor called and said he needed to get blood work done to figure out why his liver is enlarged. At this point I was still not super worried, it could have been a fluke, he ended up with a cold which could have made it large for the time being. So I was scheduled with a nurse to have blood drawn and was planning on going to go to a MOPS play date after. That first blood draw (attempt) was one of the worst experiences of this whole thing. We (Ben Micah and I) spent an hour at the pediatricians office. First, they didn't know why we were there at first. Then three different nurses tried and couldn't get blood. The doctor came in and talked to me for a minute. She felt around and said it still felt large. Ben was such a great big brother. He was right by Micah's side and trying to make him happy through his screaming. So we eventually left and were sent to the Children's hospital to try again. This was the point where I started worrying, simply out of frustration. It was just a traumatic experience and I knew I had to go do it again. I called Tim and said I didn't know if I could take Micah to get the blood drawn, I didn't want to see him screaming again. However I knew it needed to get done, so we went home and regrouped. They had a good lunch and nap and then I dropped Ben at my neighbors house to play with his friend while I took Micah to the hospital. The Children's hospital here has been great. We didn't wait have to wait and the tech got the blood fast and much easier than at the doctors office. He also explained that the Children's hospital is set up to use less blood for the tests, so he drew half of what the office would have needed. I was told we would have results the next day and to wait to hear back from the doctor.

A couple days later I was packing the kids into the car after a zoo trip and I got the call. It was the doctor, not a nurse, so I knew it wasn't good. She was concerned. Some of the tests she ran were ok and ruled certain things out but there were several abnormalities in his blood work. She was trying not to worry me, telling me it could still be nothing, but She didn't know what it all meant so she was sending us to a pediatric liver specialist. She even warned me not to google anything, haha. So I waited for the call to schedule an appointment with the specialist. 

I think it was sometime around here where I had my one big moment of worry. Like I said, I had not been a big worrier. My worries up until this point had been the hassle, scheduling and just getting through 'unnecessary' testing. But one morning I got up and was drinking my coffee and doing my devotional and I just lost it. I just started sobbing. Feeling sorry for us, asking God why we had to go through all of this, fretting about the future. Worrying that it was something big, worrying Micah was really sick and worst was going to die. What would Ben do without his brother, how would I explain it to him, how would I cope with out my sweetie? And the peace of Jesus washed over me and reminded me that I do not have to worry, these thoughts are pointless and useless and God has us. He reminded me that Micah is HIS, not mine. Micah was a 'surprise' gift from God to us. He was created for a purpose and maybe this has to do with his purpose in life. Even if God were to take him home, it would be ok because he is Gods child. And lastly God reminded me that Micah has no real symptoms, he does not seem sick, he is still a healthy little boy who had just woken up and was babbling in his crib, so instead of wallowing, why don't you get up and go spend time with him?! It was kind of like God kicked me in the butt and was like, stop it stupid and go love on your babies like I have called you to! I still have moments were I start to worry, or feel upset about everything but these are truths. I know God has a plan for us and He is in control. Micah is God's creation and God will use him how he wants and God is good. 

A few weeks later we went to the Children's hospital and met with the liver specialist. Luckily my neighbor was able to watch Ben again and Tim was able to come to the appointment with us. She talked a lot, gathered history from us and examined Micah. I felt a little bit like a deer in headlights, just not knowing what to expect and trying to understand all the medical terms while still not worrying and hoping everything was just a fluke. She agreed Micah's liver was still rather enlarged. I was relieved to hear that she had a few different ideas of what it could be, not that I knew what they were, but she needed more blood work. She warned us that the next likely step would be a liver biopsy, which would mean anesthesia and a night in the hospital. We had the blood drawn at the hospital and it went smoothly. We prayed the blood work would come back fine and we would not need to biopsy. I was worrying about the biopsy, I could not imagine how we would get though it.