Day 20

Today was a pretty uneventful day. Levi is about the same as he has been. We got to change his diaper today several times and it is good that he is having wet diapers (we need to get rid of the excess fluid). Levi was over 8 pounds today and so we have a good bit of fluid to lose. After we lose some of the fluid they plan to start him on steroids to try and help his lungs develop and start working. Dr. Anderson doesn't seem very hopeful, but it is worth a shot. I am believing that in a few days it is all going to turn around and his lungs will just start opening and filling with air and he will make lots of progress quickly and be able to make the switch from ECMO to the ventilator and then he can prepare for surgery. I was trying to just keep talking to Levi today and encourage him to open his lungs. I told him that we were not giving up on him and he couldn't either. I told him that we will be there beside him as he fights and that even though there are more challenges ahead, we would be there to love on him and help him pull through.

We also had a prayer vigil tonight in the chapel at the hospital. We are so so thankful for all of the people who showed up to support us and pray with us. We are so so thankful for all of the people who couldn't make it but prayed where they were and of course so so thankful for all of the people in our prayer group who continue to check on us and pray for us. Our sweet boy has so many people praying for him! I can't wait for the day that I can tell him just how special and loved he is; what a miracle he is and how important he is. I love that boy so very much! My heart is so full of love for him and Caleb, I feel like it could just explode. That is strange, but I guess a mother just can't describe her love for her babies!

We will continue to pray for Levi's lungs to do what they need to do and that is what we ask you all to pray for as well. Those lungs opening up and starting to work is the first step. After that we need him to tolerate us weaning him from the ECMO but we will focus on one thing at a time. We are praying life for Levi in faith and believing that God will heal our sweet boy.

6 Days Old

What a crazy six days it has been! I am so exhausted, we all are. This is all so hard. It is so hard to not be able to rest after you have a baby. It is so hard to have to walk from one hospital to another to visit your baby who should be in the room with you. Every day gets harder and harder. Today I really feel so beat. I entered the NICU this morning with hope. It was a new day and I felt 100% that Levi was going to do better and his numbers were going to go up. I told myself that over and over so that I would really believe it and I prayed and prayed and prayed. Shortly after we got there his numbers steadily went up and up to closer to where they needed to be and were staying pretty good for awhile. I just sat there thanking God over and over for bringing it up and blessing us. After awhile, his numbers just went back down; then right before we were leaving for the night, another number started going down. He was bringing it back up but it was going up and down. That number has been good the whole time he has been there, I don't know why these things are happening. I feel so beat. It is physically exhausting trying to keep my hope and trying to keep my faith that he will pull through. I know he will get through this, I know God is working on a miracle and molding our family, but it is so hard. I don't feel strong enough to get through this, I just want something positive to happen. It is so painful to sit and listen to the surgeon talk about how small and immature his lungs are. His left lung is so tiny and has so far to go. I just want him to get better. I just want to bring him home and show him his room. I just want our family to be together at home. I am trying to hard to be strong. I can't do this without God and I pray that He will give me the strength I need and help me to stay hopeful.

41 Weeks and 5 days!

Wow! I really didn't expect to still be pregnant right now! I really didn't think I would go longer than I did with Caleb. Many people (ok, many is an understatement) have asked me when I am going to induce/why I haven't induced, etc. Many people have also asked things like "Aren't you afraid of this or that going wrong/happening?" Well, the only answer I have is that I have done my research and talked to my doctor and most importantly prayed, prayed, prayed. I feel confident that we are making the best choices for *our* baby. We have prayed for God's guidance in decision making through this entire process and Michael and I feel confident that God is on our side and He is helping us get through this one day at a time. I also don't enjoy people asking if I am afraid of x, y, or z...I am a worrier anyway so please if you see me just keep those comments to yourself. I just don't want/need anything to worry about. I have gotten to this place where I am not worrying about everything anymore. We have tons of people praying and I know that God has a plan for us and for Levi. I truly believe that He is going to heal him. I do not know if that will be before he is born, or if that will be through the doctors, but God is going to get all of the glory in this! He will guide the doctors through this process and He will use them as instruments to heal Levi!

Just a little rambling and random thoughts, but I haven't been blogging much lately and I wanted to share. Thanks for all of your support and prayers, as always! We are so close to meeting Levi and I can't wait to share with everyone that he is here and doing great!

My "Push Present"

Since there has been no news the last two Tuesdays to report after our appointments, I was trying to think of something to blog about. Well, I came up with nothing so I wanted to post a picture. Michael got me a "push present" and although I technically haven't pushed yet, he gave it to me on my due date so I think thats ok! :)

Isn't is super cute and sweet? I love it!

The Nursery!

We have spent a lot of time the last week or two trying to pull the nursery together so I wanted to upload a few pictures to show where we are. It is (almost) finished!

Sorry about the bad pictures!

Close up of above the bed

We are putting a canvas on the shelf beside his name as soon as it is finished. (A sweet friend is making it for us)

Blessing ring that I made...It holds all of the cards and things like that we have gotten for Levi

Close up

Clipboard wall! We are going to add some pictures to the empty ones later :)  And that chair will not be in the nursery, we are putting a glider in as soon as we get it

Well, thats it. Can't wait to get the last few things in, but I feel better now that is is mostly finished!

Happy Due Date!

Well, today is my due date. I remember how I felt on this day when I was pregnant with Caleb. I was in shock that I was still pregnant! Two of my sisters had already had babies and both had their babies early and I just knew I would be like them. Little did I know, he would wait another ten days to decide he was ready to enter the world. Every day I was thinking "maybe today will be the day!"

I had no expectations of going early with this one which is probably part of the reason I wasn't freaking out about the nursery coming together so late in the pregnancy. While I am anxious to meet my sweet little boy, I am ok with him staying in a little longer. I have enjoyed being pregnant so much and I love feeling his kicks and movements (even at this point when they can be quite painful!). I am kind of hoping Levi doesn't wait as long as his big brother to make his appearance, but that will be fine with me if he does. Not too much longer now!

40 Weeks  :)

What's Been Going Through My Head Lately

For the first few days after finding out about everything going on with sweet Levi, I was really upset and couldn't help but replay all the things the doctors kept saying over and over in my head. I guess it takes a little while to sink in, plus going to the doctor one day and then again the next day was just overwhelming.

I started asking everyone I know to pray for us. Michael talked to his friends and some of his coworkers and the support has really helped! So many people want to keep up with Levi and be there for us right now. We are both so appreciative of everyone who is praying and sharing our story. We are so appreciative of the notes people have send us and the messages just to let us know they are praying. It is so amazing how God lines everything up and puts angels in people's lives to help them through hard times.

Now, I do not feel overcome with worry. Michael and I have so much faith. We truly believe that Levi is meant to be here with us in our lives and he has an amazing purpose. We truly believe that God is going to heal him; we may have a long journey ahead of us and our little guy may have a rough start (I say may because I do believe that he could do amazing and be much better off than the doctors think) but we do believe that we will bring him home and his life will bring so much glory to God!

On a side note...we bought letters to spell Levi in the nursery, but we haven't put them up on the wall yet. Caleb was in there playing with the letters trying to spell other words with those four little letters, rearranging them over and over on the floor, and he came up with LIVE. I can't believe I didn't realize that before. I think that is so cool and just amazing!

Unexpected News from Yesterday

We went to the doctor yesterday for what was supposed to be a team meeting. We were going to meet with a doctor from the practice where we have been transferred and a cardiologist from the practice where they have been looking at his heart and they were going to discuss what will happen once Levi is born and talk to us about all of our plans and what to expect. Before we went back to see the doctor the nurse was going to do a "quick ultrasound" to take some measurements but when she finished she said the doctor might want to look also. We went into another room and the doctor did another ultrasound and asked the nurse to pull up the pictures from earlier in the pregnancy. He determined that Levi doesn't have just situs inversus with a heart condition. Now they have discovered that he has a diaphragmatic hernia. He said he may also have some situs inversus with this but we don't know. Basically there is a missing part or hole in the muscle that keeps his organs where they need to be and some of his organs are going up into his chest. They could be pushing his heart to the wrong side and putting pressure on it, we don't know yet if this is why his heart is on the wrong side. The heart condition that they have planned for surgery for after he is born (coarctation of the aorta) could just be pressure on his heart from the organs pushing against it but that's something else we won't know until he is born. This is a very serious condition. The doctor said it is one of the most serious things they can see up there.

 

So now instead of us having a heart surgery when he is about a week old that they expected him to do completely fine with, we will have to have him sent from UAB to Children's within a couple of hours after he is born and hook him up to machines because his lungs will not be developed properly due to the other organs pushing against them as well. They will have to do a surgery on him and possibly multiple surgeries.

 

The doctor said at best he will be in the hospital for 4-6 weeks. At best usually means that the baby has nothing else wrong except the diaphragmatic hernia and our baby may have a heart condition to go with it. He said that 50% of babies at best with this condition survive. He said that we have less that a 50% chance and that our baby has a long road ahead. But I really don't care what they say. I am devastated to hear this news but I am having faith that we can get everyone we know praying for our little guy and God will show them who is boss. We are putting this in His hands and hoping that our little fighter will be a miracle that brings God glory. Please get EVERYONE you know praying for Levi. People we don't know, prayer chains, anything. We have got to cover him in prayer for the next few weeks or even months!

7-7 Appointment

Yesterday we had our third fetal echo with the cardiologist. He was able to see things a good bit better than previously. We still do not have any for sure answers about what is going on but Dr. C feels very confident that it is coarctation of the aorta. We will deliver at UAB and they will do an echo on our baby sometime after he is born(most likely a few hours after birth so that we have our time to bond first, etc.). If the echo shows that what Dr. C thinks is going on is correct then we will most likely have a surgery take place sometime in the first week of life.

Again, this is all what we are thinking as of now, we will not know anything for sure until he is born but this is what we are going with to try and prepare.

Dr. C says that if this is what happens then he expects our baby will do well with the surgery and most babies with this go on to lead a normal life. He will have to see a caridologist periodically for the rest of his life though with this. The surgery will correct the problem, but it could reoccur. It is basically a narrowing in the aortic arch and it could re-narrow over time. This is definately not what we were hoping for but I have mostly been hoping that whatever happens, it will be something we can correct with surgery and I am very pleased that it is not something that the doctors are afraid will threaten his life.

This is not the worst case, it could be much worse, but it is by no means something small. It is just something we have to prepare for and pray and hope for the best. I am having to trust the doctors with our baby's life and trust that they will do what is best.

Please join us in prayer for a smooth delivery. I really want a calm, natural birth. And please pray for the doctors that we will be working with. Pray that they will be open to my wants and that God will give them wisdom while taking care of our baby boy. Thank you all for your prayers so far and for keeping up with us and caring! I have so many emotions going on right now and I can definately tell a difference when people are praying for us.

34 Weeks

Yeah...there it is :)