Just a quick few photos of little Corbins first Halloween! We went as the family from Bobs Burgers. He was a tiny little Gene/Cheeseburger. Mommy went as the fun loving Linda.
We visited our Grandparents and the adults had lots of Candy. It’s precious moments like these where you forget all the scary parts, and just enjoy being a normal family and the innocence of childhood. 🎃❤️🎃
Today, we went back to Lake Park with little Corbin.
Its a large park in Hillsborough County, FL, that I frequented as a child. A few miles from my childhood home, it has lots of trails, and there are many places that one can spend time alone in nature to reflect, think, or cry. The day after we learned of his diagnosis we went here in order to be somewhere quiet and remote. We walked the nature trails so we could be alone, and cry, and grieve. We were so afraid. Scared for our little baby, and his future. I stood by the lake and wept, feeling so very lost.
This was also where on that very same day I got a phone call from the coordinator at CHOP, and scheduled for my fetal surgery diagnostics to see if we would qualify for his procedure. I was hoping with all my heart we would qualify, and give my angel baby his best shot.
Today returning to this same place I am full of joy. I cried lifting him into his stroller. So grateful he is here with us, and so proud of all he had already accomplished. The amazing odds he has already overcome, his beautiful smile, and sweet nature.
I love my little family. And we will love and support him throughout anything that comes his way.
Today instead of sad tears, we wandered the nature trails with daddy, listened to birds, were on watch for alligators, avoided puddles, and sang silly songs.
I’d like to be the ideal mother, but I am too busy raising my kids
Oh, hi everyone! It is now October 2019. Baby Corbin is now 13 pounds, and 3 months old. I cannot even believe that we have come this far, and that we are in our own home and thriving as a family. Baby has finally figured out toys, loves books, still hates baths, and has moved on from leg casts to his boot and bar for his Ponseti corrections. We are about two weeks away from being off of apnea monitoring which is going to change mommy’s LIFE. He is gaining weight, and growing big and strong. Baby is.. ALMOST sleeping through the entire night, we are so close, and mom and dad are SO EXCITED. Big hurdles are being overcome all over the place.
Overall we are doing great. I have received so many nice messages from people reaching out about how I am doing. I am.. okay. Not amazing, but I am doing okay. I have been juggling so many of Corbin’s appointments that I think I neglected my own mental health for slightly too long. For the record, I do have a therapist, she is amazing, we work on talk therapy and CBT, and she really helps me keep a level head. My schedule was crazy and we just kept missing each other. I spoke to her FINALLY last week, and what a difference in my mood after even just one catch up session. I really need to make sure to keep that standing appointment, the difference in my mood and functionality is huge. We discussed my anxiety, my body image, and my imposter syndrome related to motherhood.
That is my biggest hurdle currently. I don’t feel like a good mom. I walk the walk, I do everything I need to do and I still have this nagging feeling like I am failing my child. (Which is.. just… inaccurate, Why do I feel this way?) I am not sure if its lingering guilt over feeling like the baby’s condition is my fault, or just the huge load I feel related to staying on top of all medical schedules, but most of the time I feel like I am drowning. Over the last several weeks we have had a pediatrician visit, specialist appointment, or imaging appointment every single day. I can still not drive on my own, and am reliant on my family for rides. It is tiring, and I feel like a burden. I am frustrated, I am fighting with insurance companies, all the while trying to exercise, eat at least a few vegetables, and escape my constant post partum body image woes. Overall my little one is doing great, but whenever I get less than stellar test results, or medical opinions, I get very upset and take it very personally. To a level that is really unreasonable. I think the over reaction stems from the fact that this is my entire life right now. For example, after over a month wearing the Pavlik harness to try and correct the baby’s bilateral hip dysplasia, only one side was corrected, the right hip had made absolutely no progress at all. I sobbed. Why did I sob? It isnt my fault. The baby was born breach, this treatment isnt always effective. It wasn’t like I was sitting their pulling the kids joints out of socket. This was completely out of my control. However, when your entire schedule is based on treatments, and you put in the work, you so desperately want results. The results don’t always come. You get sad. You get mad. You grieve. You move on. We are trying a different type of brace, we will try again.
The next big “test” we have coming up for the baby is his uro-dynamics testing. They will see how his bladder is functioning and test for any kidney reflux or complications. If he is not fully emptying we will discuss the possibilities of medicine or catheterization. I am so upset over this. I am almost PRE upset, which both myself and my therapist agree is a waste of my time and energy. Why am I letting my anxiety live through things twice? I am working myself up over something that has not yet happened, and assuming the worst. In reality I will do whatever medical intervention is needed to keep his kidneys as healthy as possible. Over 2/3 of Spina Bifida children require some sort of bladder intervention, I am prepared to do what I have to do to keep him healthy and safe. I just am enjoying my time with him as a relatively normal baby, our time together is perfect, and I think facing another medical diagnosis is not something I am quite emotionally prepared for JUST yet. I dealt with clinics and meds for month and months, and I finally feel normal. I don’t want to deal with it. I have to, so I will…. but I don’t WANT to.
I WANT to take my kiddo to the zoo, and the library, and Disney. I want to spend time together in the pool, and the park, taking walks and looking at animals. I am still at the mercy of others for transportation, and with only about three weeks left of maternity leave, I am mourning the fact that my time off was exceptionally clinical, and I am sad that most of our time together has been spent in hospitals. This is selfish, I am aware. It is valid. I am aware of that as well. I am consistently burdened with self awareness. It is both comforting and infuriating.
My baby is happy. He is relatively healthy given the incredible odds against him. He has a good mom. He doesn’t have a FUN mom right now. He has a mom who makes him take vitamins, and get a lot of sleep, and wear his orthotics even though they bother him. He has a mom who makes sure he has enough antibiotics AND probiotics. He has a mom who obsesses over his gut health, and annoys insurance companies, and tries to advocate and educate the world about the strong and beautiful children in this country who have disabilities.
One day we will get to the point where I can be a “fun” mom. We will get there eventually. I know we will. I cannot wait. But for now, I will have to settle for effective, and hard working, and scared. But also loving. So incredibly full of love.
Hello there everyone! Long time no see… er.. read I guess. Quick update, and a readers digest version of our discharge story! Per my last blog post I went home to FL for a few days to get my head together. Of course on my way TO Tampa, my husband was informed by the NICU team that we were being discharged in two days. This was amazing news, but now I was in Florida. GREAT. So I had a SUPER quick trip home, and then booked it back to Philly, left the airport bright and early on that Wednesday morning, went STRAIGHT to CHOP, and met my husband. We signed a lot of paperwork, did some aftercare discussions with the nurses and nurse practioners and then we GOT TO LEAVE. It was SO SURREAL. We were taking OUR baby home! I didn’t quite believe it. I was sure that even as we were standing on the train platform readying ourselves to board the long Amtrak back to Florida, I was sure that someone in scrubs was going to pop out from behind the train car and say, “JUST KIDDING, Takes backsies!”
There were no take backsies, but that did not mean that our initial journey home was any easier. The baby had been sent home with an apnea monitor, he was still suffering from occasional apnea due to his prematurity, and while they had all been pretty mild events, the NICU team sent us home with a monitor, until further notice, we are still currently being monitored and working with the apnea team closely to this day. (Over a month later! Hello as this is an update from the future!) We are still in serial casting for Corbin’s clubbed feet, but overall his treatment is going well.
The transition home was happy but difficult. Lack of sleep, lots of bills, and the reality of coming home was both very welcome but also somewhat foreign. My parents and both of my sisters picked us up at the train station in Tampa after a 5 hour delay in the Carolinas. At this point we were dirty, hadn’t gotten any sleep, barely anything to eat, and I was out of both breast milk and formula for the baby, so was scrambling to get home. My sister Katie was bawling as we got off the platform and loaded the car, everyone was very emotional after the last six months finally seemed to be coming to an end. Or at the very least a beginning of the NEXT chapter of our lives.
The train was exhausting. It was loud, and there was no way effective way for us to set up the apnea monitor, so we took turns napping at night, while the other parent stayed awake to watch the baby breathe. It was not very fun, as my anxiety taking the baby home was already sky high. 0/5 stars, I do not recommend. It was rough, I cannot express how terrible I looked at the end of this journey. In days (at that point) old clothes, dirty hair, smeared makeup. My parents drove us back to our house. MY HOUSE, I GOT TO BE IN AND SEE MY HOUSE. It was so magical. Grandparents and siblings watched the kiddo while we were able to take very well deserved showers.
Since then we have spent the last month at many many doctor appointments. We have had a transitionary visit at our new Spina Bifida Clinic’s neurosurgeon, who I REALLY like. He said Corbin’s scans looks amazing, and we are doing a follow up in December just to make sure nothing major has changed. He is eating like a champ, (and pooping too!) Out next big hurdle will be getting his urodynamics done at a local urologist to make sure things are ship shape. His pediatrician has been very kind, we are getting our shots, and doing normal baby things. So far he is reaching milestones. He is head lifting, and tracking, and cooing. We still need to work on sleeping through the night but we are getting there!
Mommy is happy to be home. Its hard, but its… ours ❤