How many miracles can I ask for?

Right now we are in desperate need for God to provide us a house. I have been doing nothing but looking for a house for the last 7 days and have gotten no where. The rental market here has just exploded. The cost of rent has gone up exponentially and there are more people looking than there are houses. We can not even get into look at a house because they are going so fast. I'll find a house posted online and email them within a few hours and either all of the showings are already booked, or the house is already rented. We talked about increasing our budget but with the medical bills we know will be coming this year, we don't think it would be smart. I am getting scared. I've looked into complexes, but they are almost more expensive than a house and I can't imagine how we are going to fit our family of five, the dog and my parents all into something closer to 1,000 square feet. After talking to some real estate people, they all said renting right now is a pit and you need to buy. So we even looked into getting financing to buy but, as we already knew, because we still own our house in PA we can not buy. We can't afford to (or have time to) sell that house and we are not making any money on it either, we are barely breaking even. Each day that we don't find any new housing options I feel like we are one day closer to having a baby and no where to bring her home to. We really have no other option than God providing for us. I do not feel at peace about any of this. I feel like I had just gotten to a place where I accepted that we were stuck in CO for a few more years and Maelyn is going to go through surgery but it was ok, because we have this house that can accommodate us and we have started putting roots here. But then with this stress of finding a new place to live, and packing a moving, I do not feel ok with anything any more.It is not ok for her to be born with a broken heart. It is not ok for us to be across the country from everyone.  How can we go through her surgeries when we don't know where we will be, and how can my parents stay with us to watch the boys when we might be in a little apartment?  And we can't wait, we can't just put our stuff in storage and wait for something. She is coming! The surgeries are coming. The stress has been overwhelming. I've been having braxton hicks contractions, which I did not have this early with the boys. I'm afraid they are going to put me on bed rest, which is physically impossible for a mommy of 2 toddlers. But Maelyn cannot be born before 39 weeks, or she probably wont be able to make it through surgery. I've quit MOPS and Bible Study and Community Group because I just emotionally can't handle talking to people and I need the time and money for appointments and house hunting. It's all too much. Plus it is just getting hard to pack up the boys and take them places, and I don't want to keep having contractions. If I am having a hard time taking the kids out, how am I going to move?

Lord we need you! We need a miracle! We need several miracles because we just don't know what to do. We are out of control, out of strength, and out of ideas. I feel like we are in an impossible place, but Lord nothing is impossible for you. Please God show us your plan, open doors, be our strength and provider. Heal my children.  Lord hear my cries.

When it rains, it pours.

When we got the news about Maelyn, it felt like it was piling on top of Micah's medical issues. And then you count your blessings, and thank God for a stable job, insurance and a comfortable home. You praise God for those things and then beg that nothing else happens. 

Well a couple weeks ago we got word that the company Tim works for is about to have massive world wide lay offs. We were trying not to worry about it and Tim is feeling confident that he will not be one of the ones laid off, but every day brings new and different rumors, so we just don't know. We are trying not to stress about it, but at the same time, we cannot have a laps in medical insurance. We have very expensive doctors appointments every week. So Tim has been casually looking for options around Denver in the case that he does end up getting laid off. As much as we want to get back east, I feel like we need another year here to get Maelyn through her first round of surgeries. So we had been thinking, Tim should make it through the lay offs with his job, we will sign another year on our lease and then next spring we will plan on trying to move. 

Today we got an email from our landlord telling us that he and his wife are moving back to Denver, so when our lease ends in April we need to move out. First off, that just wasn't our plan, and second, I love our house. To be honest, this house is the only thing that I like about Colorado. So the thought of moving is sad and just so overwhelming. I hate moving, I just want a forever home. I don't want to be packing, I don't want to be unpacking a new temporary home in the weeks before Maelyn is to be born, go into surgery, recovery, ect. We thought that the next time we moved it would be somewhere back east (even though we now know that where ever we move it needs to be near a city that has a great pediatric cardiac surgical program for us). Now that Tim's job is semi-up-in-the-air, and we need to move, we just want to move back east somewhere. Ideally we would like to be near Philly, Baltimore/DC, or Durham/Raleigh (or Boston but we don't really want to be in Boston), because of their pediatric cardiology programs. However now we have 8 weeks to figure out where we are going to live. So we are in a pickle. And as much as an 8 week time frame is so short, something has to happen then, before Maelyn is born. Most likely we will just need to find somewhere, fast and cheap, to live here. 

We had an appointment for Maelyn today. Another set of chromosomal tests came back, all normal. Physically, she looks good on the ultrasound, other than her heart. The doctor is concerned that she has not grown enough. She dropped in percentile a bit. Hopefully she just hasn't gone through her next growth spurt yet and when they check her again in three weeks she will have grown a lot. 

I also talked to Micah's doctor today. They are increasing his 2 am dose again but this should be it. We are meeting with his doctors in a couple weeks to check his lab work again and discuss his doses of corn starch. His doctor did say that the plan is to eventually get him off the 2 am dose and only need to give him a bed time dose, but that could take anywhere from one to three years. 

We feel like God has to have something massive planned for us because he is just stripping everything down. Pray that God would reveal his plan, because we are just blinded. Pray that doors would open for job's and houses, quickly. Pray that nothing else would go wrong in our lives. Pray that Maelyn will grow and heal. Pray that Micah's corn starch doses are set, and work, and that we can get him off the 2 am dose sooner than the doctors think. Pray for Ben, who gets very attached to things and will probably have a hard time packing and moving. Continue to pray for scheduling and help watching the boys as appointments are getting more frequent. Pray for finances, now on top of medical bills we need money to move. Pray for our stress level, for His wisdom, guidance, peace, trust and comfort. 

 

Phosphorylase Kinase Dificiency

I talked to Micah's metabolic doctor a couple days ago. The genetic testing results came back. There is a mutation in a gene called PHKA2. This means Micah has Glycogen Storage Disease Type 9a, also known as phosphorylase kinase deficiency. The prognosis for this type is probably the best we could have hoped for. Some GSD types affect muscle tissue and cause heart issues, however this gene mutation does not typically affect the muscle, only the liver. The other really good thing about this type is that symptoms tend to go away in adulthood. As long as we manage it well throughout his childhood, he should not have any issues or symptoms when he is an adult. 

So for now, through his childhood, he will need corn starch at night to keep his body out of metabolic distress and he will need a low sugar and high protein diet to minimize liver damage and increase energy levels. The ultimate goal is to normalize his blood levels and liver as much as possible. He may still have a hard time with vigorous exercise and energy levels. His growth will probably be stunted through childhood and puberty may be delayed, but after puberty his growth should catch up to normal and his symptoms should dissipate. If we were not to manage it now he would have a lot of liver damage and feel sick and tired all the time. We are still working on figuring out the correct dosage of corn starch for him, and will continue to feed it to him at 2 am. We will also have, at least, yearly follow ups with the metabolic clinic at the Children's Hospital, including blood work and liver exams. We are also still figuring out the best foods for him to eat. 

The other thing about type 9a is that it is almost always an X linked genetic trait that has been passed on by the mother. So the doctors really want me to get tested to see if I am a carrier. If I am they want my sister to get tested and if she is, her daughter will want to get tested eventually. There is a very small chance that this is a genetic mutation and Micah is the first in the family to have it. Being X linked, females are only carriers and males are the ones that actually show symptoms. So Maelyn could be a carrier, if I am, but will most likely not show any symptoms. However at this point, if she makes it into adulthood, her ability to carry biological children will be questionable, so it might not matter if she is a carrier. 

Here is a link to a really thorough explanation of GSD Type 9. 

Overall, this is good news and a relief. It is still hard for me to swallow that we have two medically needy kids, even though Micah is generally fine. I'm dealing with mommy guilt and the grief of my kids not having the life I always pictured. Each day I process more and am coming to terms with the different plan God is laying out for us. (A year later I am still trying to come to terms with being in CO.) We still have time to prepare ourselves and the boys for what will lay ahead for Maelyn's life if she is born with the heart we saw a couple weeks ago. I am still praying for a miracle, that God would ultimately be her only surgeon. But we don't know His will. Please continue to pray with us. For healing, for peace and comfort, and for God to be glorified. Pray for finances, Tim's job, scheduling and support with child care. Pray for our teams of doctors and nurses, that they would have the wisdom and knowledge and that they would ultimately see Christ in us. Praise you God for the work you are doing that we can not even see or fathom. 

Valentines Day

We are not huge valentines day people. Tim and I's tradition is homemade cards. I don't remember the last time either of us did a valentines gift or went out on a valentines date. But every year, I swear Tim's cards get better and better, and I am pretty sure mine don't... The last few years mine are more from the kids and Tim's are even more heart felt. I'm ok with admitting my card this year was pretty lame. I let Micah color on a piece of paper and then Ben put hand prints on it and I wrote, "We love you daddy!, Love, Ben, Micah, Maelyn and Katelyn". Not going to lie, it was last minute. But I made pancakes for breakfast! Does that make up for it? This year, however, is the winner from Tim. He made me a card and got me a box of chocolates. And he made Maelyn a super sweet card and got her a box of chocolates, to be enjoyed via mommy. After I read the cards he walked up to me and I was hugging him and he was like, "you're not crying, are you". Choking back tears, I was like, "no... sort of". He also sent me off to enjoy a morning alone browsing a consignment sale. I rarely ever leave the house without the boys, so it was a real treat. I spent most of the time looking at all the little girl clothes! And I got myself some maternity clothes, since I left all of mine in PA when we moved. I also stopped for a free iced coffee from Chick Fil-A on my way home! The weather today is amazing, so after nap we are planning on taking a walk to the park as a family. It's turning out to be a great valentines day!

Regardless of how you are feeling this valentines day, or what you are doing, I pray that you remember this. Valentines day is not just about having that "someone special", it is about remembering to love intentionally. Remember where our source of love comes from and share it with everyone! Let the love of Christ radiate from you!

(John 3:16) God so loved the world that he gave his one and only son, so that whoever believes in him will not perish but will have eternal life. (Mark 12:30-31) Love the Lord your God with all of your heart, soul, mind and strength. And love your neighbor as yourself. 

The odds

When you have a baby suddenly you become paranoid. You will do anything you physically can to protect this little life that has been entrusted to you. You stay up a night making sure your newborn is breathing, you feed and bath them before yourself, you check the car seat 5 times to make sure that they are strapped in tight enough, you imagine every worst case scenario so that you are prepared to jump into action to save them in case a car jumps a curb, or your house spontaneously catches on fire. Your one job in life is to keep them alive, right? As if this isn't hard enough and the odds of a normal life aren't bad enough, what if that baby already has more odds against it? How, as a mother, do you live to protect your child with odds against it that you have no control over. How do I protect her knowing that, Mealyn's heart could fail after a week, or 30 years, but it is going to happen. I know, you just do it, because they are your child. I know families struggle with their kids fighting the odds everyday. I know you just rely on God's strength and that His plans are better than ours. It just hurts. It being your kids is just the worst kind of hurt. I've been praying, please God, not my children. I don't want to watch my children suffer, I don't want to bury my daughter, take this cup from me Lord, give me the odds, not my kids. 

Lord, take this cup from us, heal her heart now, change her odds. 

The waiting game

So much happened in that one week, there was so much to process, and now we just have to wait. Weeks until our next appointments, months until baby is born and then a whole new waiting game will begin. Waiting to see how she is, waiting to see when surgery will be, waiting through surgery. With weeks of no appointments, there is nothing I can do about anything. I'm just waiting to make plans, waiting for bills to come, waiting for phone calls, waiting for answers, waiting for jury duty (the icing on the cake, right?). Now that I've been in this kind of 'waiting game lull' for the last week, I've really started to get in my own head. Stress and anxiety are starting to take over and I'm having a hard time staying positive. 

Random updates

I heard back today that all of the results came back from the amniocentesis and she has all normal chromosomes and is definitely a girl! Such good news. 

I got a call from all three of my doctors offices today, just checking in and trying to help me get my general OB care switched to the University Hospital. I need to hear from them and get scheduled and to know if I need to keep all of my other appointments. I am also waiting for the Children's Hospital to call and schedule Micah's follow up appointment. This whole "waiting for people to call me to schedule", is kind of annoying. I want to get things scheduled so that I can find people to watch the boys and Tim can plan on taking off work. I'm also just anxious to get back to the doctors and have them check on Maelyn. At least she is pretty active and now feeling her move is so reassuring. I think I'm starting to be able to feel her move from the outside, which is exciting for Tim. 

The boys have been rotating through various sicknesses over the last several weeks. The latest is some weird stomach bug. They don't seem sick at all until suddenly they throw up all over, and then they seem fine again. Last night we were up three times changing Ben's bedding and PJs. We ended up doing 6 loads of laundry from one bad night. I am terrified of getting it. I don't want to feel any worse than this pregnancy already has me. We just need a break from sickness, and we need to see people again! 

The boys having a teddy bear picnic in the teepee today

Ben has been adorable lately. He has been so caring and loving. He intentionally shares and coaches Micah on how to do things. He asks me at least 5 times a day, "are you happy? are you very very very happy?", and I try to be honest in my response. He is so sweet, he tries to understand what makes me happy and when I am not happy, why not. He also likes to talk about Maelyn now. He asks about her broken heart. Today he was playing and he put a toy on my belly and said that he was fixing her heart. When I told Tim the story later he just said, "but it's not broken anymore, I did fix her heart". Then he kept asking if it was still broken and we just told him that we need to go back to the doctors to check. 

Another funny Ben story; I asked him to pray before bed last night and he says, "Dear God, I love my bed and I love Micah's bed and I love Micah and I love me, I really love me". Then with a little coaching he finished with our more typical prayer and says, "Dear God, Thank you for today,and God bless Ben and Micah and Ben and Maelyn and Ben and mommy and daddy and Bentley and Oscar, amen." (He always prays for Oscar, our cat who has not lived with us in well over a year!)

Ben and Micah got new beds in Ben's room.
Micah will move into it after he starts walking well.

Micah started this stomach bug but has not thrown up in several days. But today he finally decided to attempt to walk on his own! Yay! He hasn't taken more than two steps and half the time he face-plants after his attempt, but he thinks it's hilarious. I am just relieved he is trying. I feel like it is a sign that we are getting his Glycogen Storage under control. I just need him walking before Maelyn comes home.

Thank you so much to everyone who has been praying and sending encouragement. We really appreciate it and have needed it. Thank you for praying for the boys, they have been doing well, but I am still praying that God will prepare them for all that is coming in June. Please keep praying for Maelyn's heart and pray for wisdom for her doctors. Continue to pray for sleep and health. Even though I'm sleeping more, I feel like I am only having dreams about my three kids being in distress. I don't know if it is just the bad night we had last night but I've been feeling more anxious and worrying about all sorts of things. Continue to pray for peace and comfort.