The journey of a thousand miles begins with one step
Today was quite a day! Jesse, Corbin and I drove to the local office for Early Intervention and met with his team, and did his full evaluation. The program is designed for ages infant through 3 years of age who are developmentally delayed or at risk of the same. Corbin qualifies automatically due to his pre-existing condition and we were referred to the program by his initial hospital in Philadelphia.
As a parent, I was feeling anxious and hoping more than anything they would tell me that the baby was developing right on track, the past few weeks have been so difficult with constant visits, I just wanted some good news, especially with all of his urological testing coming up, I have been bracing myself and waiting for the other foot to drop.
We went into the office, answered a series of questions, did some exercises on the floor, looked at some flashlights, they rang a series of bells to see if the baby reacted, it was all very exciting. As a person with a background in speech pathology, that was the only category where I knew what they were looking for. I was quite confident that he was on track for language, but had no idea the type of benchmarks and standards they were expecting physically and cognitively from a baby who is barely three months of age, and in his adjusted age only a month and a half. Well…. GOOD NEWS!
According to the interventionists he is doing great! Mommy was so happy to hear! He met all his milestones minus one, and that was because baby decided to fall asleep so they couldn’t perform the test. We will try that one again next time. The head coordinator even mentioned that if he didn’t automatically qualify for the program, if he was a typical mobile child that is, he would not have qualified because his test scores were too high, and he would have not been considered “At risk.”
We will have a physical and occupational therapist coming to the house once a week, and then will look into private clinics to assist with mobility, strength and walking. I am OVER the moon that cognitively, and behaviorally they think he is doing so well. It was a bright spot in my week, and even if Monday’s testing goes terribly I have something to cling to with optimism.
Below is a lovely picture of my Aunt MaryEllen and baby Corbin. MaryEllen was truly one of my absolutely favorite people on the entire planet. She was my eldest uncle’s wife, and I had known her my entire life. She was an amazing chef, an exceptional mother, wife, grandmother and friend. As a child my siblings and I would very often vacation with her and my Uncle Al. I was fortunate to have her, and my cousin Christina visit with my family in Philadelphia when we were still located up there with the baby in the hospital. We laughed, and cried, and had an amazing lunch at a cute french restaurant. She made my husband and I cookies, and brought them all the way from North Carolina. They were delicious. I smiled every time I ate one for the next week.
She loved me, and she loved my baby. I love her, and her children, and her spirit. She unexpectedly passed away last week, and my entire family has been thrown for a loop. It was sudden, and shocking, and I still forget it happened, because it just seemed and SEEMS so surreal. I brought the baby to the service. I had to. He loved her too. They met only once, but she was so vehemently supportive of him and his spirit and life. I cannot express how much I will miss her, and what a huge loss this has been. The world is missing an amazing soul. She had taught me so many lessons over the years.
During our visit I cried and vented to her about our familial situation and my fears for my son. I told her how scared and confused I was. She took me by the hand and she calmly said, “Laura, this kid is incredible. We are a family, and we will figure it out.”
That stuck in my mind, because she said it with complete faith, in a tone that was factual in nature, with one hundred percent certainty
So now I will say it, to myself when I get sad. and to my cousins, and aunts and uncles as well, whenever we panic and miss her.
“We are a family, and we will figure it out.”
I miss you so much ME. You were one of my heroes, if I become half the mother you were, I know I will have done a bang up job. ❤
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 ❤
Last week. I did the seemingly impossible and took a break from the NICU. We were going on week six, and I had completely reached my limits as not only a mom but as a human being. Every night I was spending hours sobbing, crying every time my mom called me from Florida as well. My husband (who seriously is the best thing to ever happen to me) had been consistently urging me for weeks to take a few days off and go back to Tampa to see my house and my family. I of course was extremely against the idea. The baby wasn’t consistently stable, my anxiety over leaving him would seemingly be even worse than the feelings I was having spending every single day in intensive care. I could also just foresee all the mother shaming I would experience leaving my newborn a thousand miles away, and going off to see the sunshine state and visit my dogs.
But then I did something wild. I actually left. I didn’t think I would. The baby was more stable, we were seemingly in the home stretch of waiting. He had his dad, and in order for me to heal and succeed as a person and as a new mom, I had to go. I had to leave. I had to take five minutes to get my mental health in order, and have some semblance of normalcy. On day 122 of being away from home I turned to Jesse before bed and I said, “I have to go home.” My mother had said the exact same thing to me, and between the two of them I was convinced.
Tickets were bought, and I spent a little over 48 hours back in Florida. I got to see my nursery which had been completely designed and renovated while I was away (it is COMPLETELY stunning, my Mother-in-law and husband did and AMAZING job) I got to see my pets who seemed to have thought I had run away never to return. I got to see my HOUSE, and sleep in my BED, and drive my CAR. So many little things I had taken for granted when in town, and that were so healing and rejuvenating to me. Simple tasks like using my own kitchen and laundry room, sweeping my own floor, and eating food out of my own fridge was completely surreal. I went to Target and it was a completely spiritual experience. The week previous in Philadelphia I was having a hard time pumping milk, and my supply was really starting to dwindle. While in Florida my milk was up by about 2/3, probably just due to me feeling relaxed and in my own environment. I was able to sleep a full eight hours, run some last minute errands I needed for the baby, and pump a few days worth of milk to leave in the home freezer so we would have a slight back supply for our homecoming.
I think the only downside to me coming home briefly and re-charging was I felt embarrassed about it. I didn’t really tell many people it was happening, or see many of my family and friends for the very short time I was back, because not only was I VERY pressed for time, but I was worried what people would think. I was worried how people would feel, and perceive me as a mom. What kind of mother would leave her fresh baby, with all of his medical issues? How could she be so selfish? It hurt my heart to think what people would think about me. Mom shaming is a very real thing, and the standards new moms need to achieve are completely unattainable.
I have already felt the effects of mom shaming and my kid is barely a month old. But what people don’t realize that a big part of new motherhood tends to include losing yourself. Not on purpose, but just in the whirlwind of creating a new life, and one that requires a lot more care, we forget to think about ourselves for the most part, and unfortunately so do most people surrounding the new mom too. I had spent the last 122 days being, a vessel for life, a mother, and a patient, but I hadn’t spent many of those days feeling like an individual, and not very many of them feeling like “Laura.” The entire second half of my pregnancy was a clinical blur. I myself was healing from two abdominal surgeries, and even though I was trying to make my mental and physical health priorities, everyone around me, including myself was focused on the baby. Looking back to how I was feeling last week, and how I must have appeared to my loved ones, it is not shocking that they encouraged me to take a breather. Even just two days later I feel like a completely different person. Friends I talk to everyday have remarked even my written language seems more rested and positive, I seem very much more normal and level headed. Less depressed. A huge turn around.
I am now back with my son, and will be detailing our discharge story soon. I am back with him feeling like myself. I am Laura. I am a mom. I love my baby. However, I am also a person, and a human, with thoughts and feelings, a personality, an attitude, and an independent sense of self. He is my top priority but in order to care for him, I need to also take care of me. ❤
We all have one of those, it usually cycles around between people in any particular circle. Lately, due to just the nature of my life and what has been going on, I am the hard friend. I have been the hard friend for months.
It is hard being the hard friend. For many reasons. First of being, that in order to be the hard friend, you have to be going through something difficult, and second being, people usually don’t know how to handle you. If someone in your life is in the hospital for a few days, its easier. Send them flowers, or a card, call them to check in, usually home within a few days etc. If a friend has a breakup, they usually occupy the hard friend spot for around a month or two, etc. When its months and months, or years and years is when it gets sticky.
People don’t know how to talk to me anymore. Between the baby, and the distance, and the medical and money turmoil. Even just having a baby can be isolating for many people, as their childless friends have different schedules and priorities. Younger friends still prioritize partying, drinking and dating. People tend to drift apart even in the most standard of parenting scenarios. This year has been insane for me, and people don’t know how to react. I get it. I have been on the other side of this coin. I have friends who have gone through problems and scenarios that I do not relate to. I am familiar with the anxiety of asking myself… “What do I say?”..”What can I do?” …. “What if I make it worse?” Unfortunately this anxiety usually lead to silence. People don’t know what to say and so… they just… don’t say anything. There is a certain fatigue in dealing with someone’s ongoing problems, especially when you cannot relate. It sparks an uncertainty in people that usually results in separation.
I am not writing this from an accusatory standpoint, or a high horse. Just expressing myself. I am not bitter, or angry. Just sad, and very tired. One usually has a circle who you think will be there for you no matter what, and then as you get older, or hit the REALLY big road bumps that circle seems to get smaller and smaller. This usually means that you embrace quality over quantity, however it doesn’t mean that it stings any less. It hurts. The messages spread out, until eventually they mostly disappear, the phone calls lessen.
That being said, Do I blame anyone? Its not like I am the best person to converse with right now. I’m going through a lot. I have mood swings. I have days when I feel really angry. I have days where I feel really depressed. I am not easy to be around right now. I am not the easy friend right now.
Right now I am not a quick beer after work.
I am not a movie date
I am not a jovial phone call
I am not the shoulder to lean on, most of my people have become accustomed to
I am not a lender of money
I am not a mirror selfie or a glam Instagram post from a girls brunch
I am a mess. I am tears at 3am. I am hospital coffee. I am living in the same four outfits. I am dirty hair and no makeup. I am under eye circles. I am gut wrenching sobs in the shower when I hope nobody else is awake.
Unfortunately messes need people the most. They require the most clean up.
Yesterday marked four weeks since Corbin was born. We are now on week five of NICU. It feels never ending. Some days are very good, and some days are very NOT good. When the baby has a good day, I have a good day. I feel like that is a specific aspect of parenting that will never go away. All of the baby’s current issues, the ones keeping us from going home (That we know of) are due to his pre-maturity, and not his Spina Bifida. Everything related to his Spina Bifida currently is going as well as they could for the most part. We had a recent brain and spine MRI, that looked awesome. His Neuro surgeon was very happy with his brain scan, and his healing. He related that he wants to see us in six months, and then again at a year, to make sure kiddo is doing well.
He is getting the hang of oral feedings, but gets tired easily and so the amount isn’t consistent, which is a big thing the Neo-natologist will look for before we can go home. He was taken off all breathing assistance today, but we have made that step before to then be put back on 12 hours later. We had a really low saturation dip earlier this afternoon, and I am anxious about the same. They were unsure if it warranted putting him back on support or not. Tomorrow we are taking a class on how to replace and feed through NG tube, as we may be discharged with him still partly tube feeding, they also are up in the air about an apnea monitor. He is currently being casted for his club feet, and his feet were SO swollen and bruised this morning when they checked on him that they decided to give his little lets and feet a few days off to try and heal. They looked so painful, and while they didn’t look like they were bothering him, it broke this mom’s heart, and I am worried about it leading to skin breakage and or infection. That will push everything back even farther, and I dont want to push any orthopedic timeline back even further for the little guy. Overall today was wrought with a lot of steps both forwards and backwards, and I am feeling extremely frustrated.
Some positives today, the baby is now wearing adorable little outfits. He is allowed to have crib toys like soothers, and mobiles, which he loves! His favorite is a little Baby Einstein Aquarium that lights up, makes water movements, and plays classical music. He is awake more often now, which means we get a lot more eye open time, and can see his little smiling face and touch his chubby little cheeks. We are allowed to do more of his care now that he is hooked up to less equipment. I’ve never been so happy to change poopy diapers! We found a collection of baby books and have been able to read to him while he is awake, I especially love when my husband Jesse reads to him and does all the voices. It makes my heart explode to see them bonding, and the baby smile at the sound of his voice.
So there have been some positives this week! Lots of ups and lots of downs. I feel like a metronome with everything giving me whiplash. Emotional backs and forths, monitors constantly beeping, loud noises, no sleep. Lather, rinse, repeat. I am lucky he is in good hands, I am lucky he is safe, I just so badly want to be done with this chapter of our family experience. I want to flash forward to family dinners, and bedtime stories, and picnics, and swimming lessons, and be away from the constant hum of hospital monitors, and the lingering smell of hand sanitizer.
We have been in discussion with the Nurse practitioners about discharge timeline. We are going to get lessons on the monitors and NG tubes in case we have to go home with them. I would really prefer not to, which could also mean more time in NICU, so its all very overwhelming. Do we go home with monitors, so that we get to go home. Do we stay longer. What do we do.
I feel like I live in limbo. I so badly want to take the next step.
Please be strong baby, I love you! You are doing amazing, mommy just wants to go home and start our life together. You are incredible. ❤