Prematurity Awareness Month

I have been a bloghog lately! I just have so much to say lately, I guess. November is Prematurity Awareness Month. I could go on and on about Prematurity and how it affects our lives every day....how it affects so many lives every year. 1 in 8 babies in America are born too soon....1 in 8!! That just astounded me when I learned that....when Chris and I talked to the NICU dr who told us our son was going to be born at 27 weeks, I thought "surely no one has babies that early," but we are no where near alone... Tucker's birth and NICU story is long and complicated...and also miraculous and a testament to the doctors and nurses, family members and friends, and our faith in God... but for now I'll just touch on some of the things that Prematurity took from us...things that still haunt me to this day....things that I will never truly "get over" as moms never "get over" the birth of their child, even decades later.... -13 weeks of pregnancy-13 weeks of doctors' appointments, crazy cravings and symptoms, watching my belly grow and knowing that my little one was safe inside...13 weeks of ultrasounds, maternity clothes, baby shopping, and people asking me "when are you due?" For those 13 weeks, no one outside of the NICU could tell I was a new mom. There were no outward signs that I had a new baby. I stayed inpatient for 5 days after Tucker's birth, and I lost the "baby" weight by the time Tucker was one week old. I enjoyed my baby shower, but by then Tucker was 8 weeks old. There was no guessing how much my baby would weigh or measuring my tummy for any games...not that I would have enjoyed that in the first place! Instead of spending a few hours in labor and a few days in the hospital with a newborn, we spent 4 days in Labor & Delivery and 5 days in the postpartum area. For those 4 days, Chris and I heard babies being delivered all around us, loud crying babies...we knew we weren't going to have that kind of delivery....After Tucker was born, they took him away immediately....we spent 5 more days listening to crying babies with their families all around us, while ours fought for his life somewhere else in the hospital. On that 5th day, we left the hospital without our son. I was wheeled out of the place empty-handed...it was like some cruel joke that I didn't get...We were supposed to be thankful that Tucker was at least alive, that he had the chance to make it and one day be okay, but it was just the most unnatural feeling to leave the hospital and go home to an empty nursery. Chris and I made that same trip over and over during the next 246 days...If we knew at the beginning how long it was going to be, I don't think we could have ever started... The doctors explained that we had at least 13 weeks of the NICU ahead of us....and each day in the NICU can feel like an eternity....that kind of information can make you numb, just make you want to crawl into bed and not come out until your old due date...but you are parents now, and that is not an option. So you watch your child fight a fight they were never supposed to...a fight that too many babies lose...and you feel powerless to touch them, talk to them, or sometimes even look at them, since your voice and the lights often are too much for their little bodies to handle. (Chris and I didn't even hold Tucker for 7 weeks, a subject that could fill up many blog posts.) You throw out the "What to Expect When You're Expecting" books and buy new books....learn new terms, like ROP, PDA, BPD, and celebrate every little success. The doctors tell you that many preemies show no signs of their early births by age 2 or 4, but many other preemies are affected for life...you hope and pray that your baby is one of the lucky ones, one of the strong ones whom no one would ever guess started life like this. Honestly, we are still adjusting to life as parents of a preemie. So many dreams and plans that we had are still being changed and moved around to fit our reality. I hope that sharing Tucker's story makes others aware of Prematurity and its affects, and that one day the statistics look much better for all babies.

Trick or Treating Pics

Tucker was Superman for Halloween this year. We tried to take a picture of him with the pumpkins at Brad's parents' house. This is the best pose he made! Notice his slicked back hair, isn't it so cute?? This year Tucker trick or treated with his cousins, Molli and Addi. Molli was a witch and Addi was an LSU fairy. Molli had a small fit, because she wanted to know why she couldn't be Superman or Purple? Haha, it's always funny when someone else's kid has a fit, and not mine! So Susan let Molli have some purple hairspray to be like her sister.

Brad and Chris rode in the Rhino/4 wheeler, and they pulled us in a trailer in the back. Tucker LOVED it!!

Gina and Jenee' were the Trick or Treating Assistants, and Sarah was the photographer. She got some great shots:) Here is one of the Trick or Treaters.

And one of my absolute favorites of Tucker and Gina...

Then one of Tucker and me. At every single house, Tucker would give back the first treat offered, and dig in the candy bucket! He had to make sure there wasn't something "better" that he should get; he's lucky he's so cute, because people tolerated this pretty well! By the time Tucker had chosen his perfect candy, the other kids were back in the trailer waiting to go...Tucker was the slowest Trick or Treater ever!

Here is a pic of Chris, Tucker, and me. Chris and I were NOT ready for pictures of us, we didn't even dress up. But I love this pic because Meagan pointed out to me that Tucker and Chris have the exact same posture in this one. Tucker really is mini-Chris, and you can see it in this picture.

Quick Medical Update

Tucker is doing well medically lately, but I need to update on a few issues, mainly so I don't forget when they happened. I haven't gotten a chance to talk about this with anyone, so sorry if you are reading this here and it's the first you've heard about it. Dr T (lung doctor) called Friday afternoon, and he said he is faxing over Tucker's sleep study to Dr K. He is not making any changes for now, but he thought Dr K might have some ideas...why this wasn't faxed over 10 weeks ago when we got the results, I'm not sure...I have been calling the office and wondering what the plan is for my kid who barely sleeps (he goes to sleep-he just doesn't get any "real" or restful sleep, basically making it pointless) who has mito and therefore really needs his sleep. So the plan is to refer him to Dr K, which is fine, especially since Dr K already wanted Tucker to see Dr P in Houston, which is the doctor who specializes in lungs, sleep, and immunology in Houston. That was a lot of waiting for no real answers; we do see Dr T in December, maybe by that point Dr K will have looked over the sleep study and told him or us something. I also got a call on Friday from the motility doctor in New Orleans. Dr K recommended that Tucker see a motility specialist; this is someone who not only specializes in the Gastro Intestinal Tract (GI doctor), but someone who specializes in the motion of the digestive track. You chew and swallow your food, and gravity doesn't just take it through your body-there are many movements, in your esophagus, stomach, small intestine, and colon, that help your body to absorb the nutrients you need and then to excrete the waste properly. If something is wrong with this system, then it can affect everything else. Tucker's pedi had to fill out paperwork so the dr in New Orleans would see us, so I thought it would be weeks before we got a phone call. So I was surprised when the nurse called me last Friday and told us to come in Nov 2nd....I asked, "can we wait a little while?" She must have thought I was crazy! Tucker just missed 2 days of school last week, and he has a field trip this week to the Global Wildlife place, so I just want him to have one full week of school before he misses again for appointments. Not to mention that the motility doc will likely order many tests, and give us new very helpful information....but not information that I am really looking forward to getting..... So I am feeling like a pretty bad mom at this point, as now the appointment is 14 days later than it could have been....We have just been having such a good few days, and our last doctor's appointment actually brought good news. So I am not looking forward to starting up again. This week Tucker has regular school, then November 10th we will see the craniofacial team (8 specialists who come in and out and examine Tucker in a matter of hours, then meet afterwards and write a report on his head and facial issues), which is pretty stressful. Then the following week we see the motility specialist, then a trip to the dentist during the Thanksgiving holidays, then two appointments the first week of December-with his other GI (if we even keep her after the new appointment) and one with Dr T. We also have to fit in a follow-up appointment with the ENT in New Orleans to make a plan in case Tucker gets a cold...he still has a thin and floppy trachea, so I need to know at what point I should call her for steroids. We really only average one appointment per week, and we've had much busier times in our lives, but I am not looking forward to the next few weeks:( We have also been confused by Tucker's blood sugar lately. Just when Dr K said it was okay to just monitor him, his blood sugars started getting even higher. I'm not sure if I already put this in a previous post, but there are times when Tucker acts insane...running around, can't seem to stop himself, shrieking...we had attributed to his ADD/autism/just being a kid, but lately we have checked his blood sugar at that time. The other day it was 340 and just now Chris checked it and it was 347. Apparently, Tucker is having literal "sugar highs." Another time, right after he pooped it was over 360...which could be a bad sign for both his endo and GI status. So I am going to call the endocrinologist in BR tomorrow, to see what he thinks...the charts that both he and Dr K have seen don't have any readings above 300, so I want to see what he wants to do with that new information. Tucker has really been hilarious lately; he still talks a lot, and he is very into money right now! He likes to take money out of Chris's pockets and my wallet and put it in his Tiger bank. He even goes for the quarters, even though we try to keep those for ourselves:) Most of the time Chris just empties out Tucker's bank and lets him refill it with the same money, but I think Tucker has caught on to that trick! Tucker really enjoyed Trick or Treating, going get candy with a tube-fed child is quite an experience! He has no intention of eating any of it, but he is very particular about what he puts in his bucket. He tried to put all of his chocolate into Molli's bucket, but Chris and I put a stop to that! I think that starting the Melatonin for Tucker's sleep has really helped him. It is not supposed to make Tucker's sleep more restful, just help his body to relax to fall asleep in the first place. At first we were giving it to him early, so then he'd fall asleep but then wake up full of energy at 3am...not the best idea! So we have been giving it to him later, but he still falls asleep around 830 at night, and gets up around 7am, which is a huge improvement from his old 10pm bedtime. His sleep has made a big difference in his behavior-I'm not sure if it's affected his actual cognitive function, though. He got a "good" behavior last week (the day he got his eggs for a prize!) and then today he got his first "excellent" behavior ever:)