Tuesday, April 10, 2012

Constant changes

Our life has become so exhausting and emotionally draining. Today was hard. We were told Landon would have his breathing tube removed this morning, but during rounds this morning they decided to do the shunt tomorrow or soon this week. So we started preparing ourselves for another surgery. We talked with doctors off and on and asked them questions, but nobody can really give us for sure answers about what is going to happen because they make all decisions as a team and each person in the team kind of has their own idea of what they think will be done or what they think should be done. As the day went on the plan changed and it no longer looked like there would be another surgery for at least a week. So the question became to take take out the tube now or to keep it in?

Ryan and I ran to Target to get some things and when we got back there was a circle of 11 doctors outside of Landon's room. We were glad we made it back in time for evening rounds. As we were listening I just became more and more disturbed. There are so many different strong opinions about what should be done to Landon. One of the main doctors feels very strongly that his breathing tube should be taken out and he will do just fine. Dr. Bryant, our surgeon does not want the tube taken out because he will have to have it put back in for surgery next week. It is very concerning for a parent to know that there is disagreement amongst the team that is making the decisions that are so important to the life of your child. Talking to the nurse afterwards about what was said during rounds, she told us that it is dangerous to keep a breathing tube in for so long, if they decide to keep it in until after surgery they would be risking him getting pneumonia or other infections.

Ryan and I know that we are Landon's advocates, but right now we just feel so helpless. We do not know what is the best route for him. We obviously do not want him to get really sick from having the tube in and it is so painful to watch your baby be so uncomfortable and pull at the tape on his mouth. It's heartbreaking to watch him wrinkle his face in pain, but not be able to cry out. I hate standing by him when I know that he's hurting because I feel like he's just begging me to fix it, but I can't. Yesterday I stood by him and let him squeeze my finger with his tiny hand while they pulled a chest tube out of him and stitched him back up. You cannot tell me he doesn't feel pain. His face was grimacing and even though he was silent my heart could hear him screaming in agony. I just kept whispering to him that it's ok and it won't be forever. I told him that I hear him and I love him so much. He is so strong. I stayed strong for him yesterday, but when we got back to Ronald McDonald and I was laying in bed I just broke. People tell me he won't remember any of this, but I will never forget. I can still see his face. I understand now why God had to look away when Jesus was hanging on the cross. I don't think there is anything more painful for a parent then having to watch your child suffer and not being able to do anything about it. I just sobbed last night. I hate that he knew I was there and I didn't stop them from hurting him, but I would of never let go of his hand. As painful as it was to be there, I couldn't leave him.

He hates his tubes, but I hate that if they take them out they will have to put them back in again and that means even more pain and trauma for him to go through. I wonder what he thinks of this world. I think if he had the choice he would go back to being in my womb. He could move around inside of me, he could breath and no one was constantly poking and probing him. I look at him and I'm so sad that this is his experience. I tell him all the time that it won't always be this way. It's just not fair. It's not fair that my perfect baby boy has to face so much and he's only a week old. He didn't do anything to deserve the pain he endures. I know God has a plan. We are still praying and trusting him everyday and we have seen so many blessings and miracles in our child's life. It's so hard to remember the blessings when you look into your babies eyes and see pain though. It's starting to become overwhelming for us. I see the sadness building in both me and Ryan. Ryan is starting to think about leaving this weekend and thats breaking his heart and I'm starting to think about being alone. I don't know how I'm going to handle these daily trials and decisions by myself. I won't have Ryan to look to for wisdom and strength each day :( It is so hard for Ryan to feel helpless here I can't imagine how hard it's going to be for him to be away from Landon. Please pray that we continue to lean on God for strength and wisdom. This is way too much for us. We just want to be done. We want to take our baby and go home, but that is not an option :(

It is nine o clock and as of now we have been told that they are going to take out the tube tonight. We aren't getting our hopes up that this will actually happen, but we told the nurse to call us tonight at any time if they do decide to take it out tonight. We want to be here even though they've told us it will not be pleasant. It will be very painful to take out the tube and once it's out his throat is going to be extremely sore. We are going to go back to the house as soon as I'm done writing this. We'll try to eat something and maybe get some sleep while we wait for the phone to ring.

I hope this post hasn't sounded too depressing. All of the doctors tell us that he is doing very well, but this isn't being written by a doctor it's being written from a parents heavy heart. We do have good days, but today just happened to be a really hard, exhausting day. Thank you so much for your prayers. Your prayers, love, and support carry us through these days. Hopefully the sun will shine brighter tomorrow.


strength on eagles wings said...

I have been checking in every day on Landon....and I just want you to know I am praying....and although our journey with our daughter Kenley was different....there is SO much of what you are feeling and dealing with that I totally understand. Been there. And God is carrying you through this and it still hurts..I know. Hang on. I don't know if you remember meeting me at the MOMs group at Constance but I would love to help in any way...a visit...a meal....from a former NICU mama...please let me know if I can be there with you in some way...especially once you are alone. In the meantime I'll be praying....

Landon is blessed to call you mama!

In Him.....
Shelly Carlson

Our Home to Yours said...

You are in my thoughts and prayers almost daily. Your post comes from a place of total honesty, and a place all of us moms of preemies or special-case babies understand. My heart goes out to you! Some days are hard and heavy, but some days are joy-filled and exciting.. hold on to hope! Will be praying for you and little Landon!

Bruce and Linda Mitton said...

Hi Natalie, this is Bruce and Linda Mitton here. We happen to be at Gillete in St Paul right now. Was wondering if there was any way we could stop in sometime to see you. We will be here all weekend as Victoria is having trouble with her shunt. Praying for you guys for grace and mercy today. Blessings , Bruce. Maybe you could respond on here..but if you don't will completely understand...sometimes you don't want to see any one but hubby or son or family.