Wednesday, March 14, 2012

PPROMiversary

One year ago I learned the meaning of the first of a long list of acronyms I didn't know existed (and probably wouldn't mind forgetting). PPROM or preterm premature rupture of membranes is the medical term for when your water breaks in pregnancy too soon for the baby to be considered 'viable.' A search on Google doesn't give a lot of information about PPROM and the information that is there is all pretty depressing. Last year at this time I was lying in a hospital bed desperately trying to find hope out of those 5 letters. It wasn't the medical websites or my doctors who provided it, it was other mothers. Mothers who were on bed rest, trying to keep their babies 'baking' like me. Mothers who choose to keep fighting even when given the grim news I was given. Mothers from all over the world who I never met, who gave me the hope to keep going. We cheered each other on as each delivered our babies, mourned with those whose babies lost their fight, and celebrated with those whose babies continued their journey. Those women kept me going each day and I say a prayer each day for them and those that are in the position I was 1 year ago to keep their faith.

Sitting in his easy chair
Little Lion Landon
Landon exactly 1 year from the day my water broke


Good Morning Mama




Practicing crawling


Loves his bucket

Hi Mama I rolled over

Trying on his birthday/Easter hat
I remember praying to God to allow me to see into the future and know what was going to happen, to know that everything I was going through would be worth it. Sometimes I think the not knowing of bed rest was worse than all of the obstacles we faced in the NICU. What would I have told myself a year ago if God let future me say what right now holds for our family? I would say don't get caught up in the acronyms. After PPROM there was RDS, NEC, ROP, and BPD...among others. Each came with a plethora of Google searches with information on the incredible and terrible things Landon would have to face. The funny thing is although I lived and breathed it and probably read the same research that Landon's doctors were basing their decisions for him on, it seems like a distant fog to me now. I would tell the last year me that this will be the longest and fastest year of your life, but you will look at your 11 month old baby and forget about the needles and tubes and shots and doctors and fear because he will just be your little boy.

The weather has been getting nicer and we have had more opportunities to take Landon outside and finally get to see the world. It is sometimes hard when you have to withstand all of the people staring at him wondering what happened to him. Sometimes I feel as if they wonder why we weren't better parents to keep him safe from prematurity. Of course I understand this is mostly in my head. Really the best part is when you see a person stare at him and something changes in their face and they smile. In that moment I know they are seeing the little boy I see. No tubes or scars but a beautiful boy with eyes that twinkle and a smile that can light up a room. In that moment you can forget I have a preemie baby with a long list of issues and just bask in the glow of being the mom of a cute baby.

Beyond getting cuter every day, Landon has been progressing really well developmentally. He can sit up pin straight (better than either of his parents). In fact, he prefers to sit up and if I try to allow him to lean against me or the couch he will use his core muscles to pull himself up to sitting by himself. It was crazy when he started doing it this week. That baby amazes me every day. He can even stand for short periods of time while holding onto his toy tables!

He got his first two teeth actually on the night we call my PPROMiversary. What I wouldn't give to go back a year ago that day and tell the doctor that because I choose not to terminate my little boy as she recommended, I had the pleasure of spending a night one year later up with him as my perfect baby cut his first teeth. Of course he did two at once, that Landon never does anything the easy way! His baby teeth will have some issues with the enamel because of the antibiotics and the liquid nutrition Landon received in the hospital. Thankfully, this just affects his baby teeth, but still frustrates me as one more thing he will have to deal with.

He also had his vision checked and the doctors could not believe how good his sight was given everything he went through! He has better vision than either of his parents! He also has better hearing as I found out when I was sitting with him in his hearing test and realized he could hear things I couldn't :). We even tried to go two weeks without his feeding tube. He did great eating all of his bottles, but unfortunately didn't gain any weight. We are going to keep the tube for a bit longer because he is so active, we think he is just burning more calories than he can consume himself.

We have a big week this week with an appointment with both his cardiologist and his lung doctor. He had a test to see if his pulmonary hypertension is under control. We got great news that his heart looked a lot better than the last time they tested it. All of the doctors and nurses were so impressed by how well he looked! They crowded around him and he was like a prince on his throne laughing and 'talking' to his court. It was a wonderful feeling. Most importantly, the cardiologist gave us the all clear to start weening his oxygen if his lung doctor agrees. We have that appointment on Friday and are hoping to be able to start the process. It can take 6 months or more to fully get off of oxygen, but I would love to get him off before he is more mobile!

One more important update. In celebration for the beautiful baby we were given as a miracle, we have recently decided to participate in the March of Dimes March for babies next month. I have mentioned this organization before and can't say enough positive things about them. They are the reason our little man survived in the critical first hours of his life. The research the March of Dimes does for prematurity babies lead to the medicine they gave Landon's lungs that allowed him to breathe. Other research has lead to medicine that will allow Ryan and I to have a better chance at a full term baby if we ever decide to try this crazy ride again.

We would love your support for us on this walk. You can find our family team's page here: http://marchforbabies.org/team/lionlandon. We would love anyone to join us who would like to for the walk and would definitely appreciate any donations you are willing to give. Our goal is to help one less family and one less baby have to go through what we did! Thank you!