Well… where to even begin. We are currently home bound with all of this COVID-19/Corona virus spread in our home state of Florida. Jesse and I are both lucky enough to be able to work from home, so we are juggling working our normal schedules, taking care of our baby, and doing home projects and cleaning while we are here in the space anyway. I am fortunate we are continuing to get paid, I am fortunate we still have benefits, and our baby is safe at home, away from strangers and possible infection. Having a medically complex child in these times of crisis is very anxiety inducing. I have lost sleep, I have gotten stressed enough to take rescue medication. I stocked up on my child’s medications from the pharmacy in case they close in the near future. I am constantly weighing the pros and cons between staying home, and going to his appointments and therapy appointments, stuck between knowing that he needs them, and not wanting to risk infection.
In the last several weeks since Clinic, Corbin has made a lot of strides in physical milestones including rolling from back to belly for the first time! He got his physical therapy evaluation and pending insurance approval he will be going to PT at All Children’s twice a week. I was so excited for this to happen, and for him to get proactive help with his gross motor skills, only to be sad and paranoid, knowing that he would be in a facility with lots of strangers, children and adult alike, and whether I would want to risk him being exposed to the virus. I so badly want him to have his sessions, and we are all waiting for guidance, not knowing what the timeline for these CDC recommendations will be. We are limiting contact with the outside, only going to pharmacies and grocers when its not avoidable, going first thing in the morning and promptly leaving. Lots of hand washing, lots of hand sanitizer.
In a way I am very prepared for the social isolation, as less than a year ago I was on strict bed-rest after my fetal surgery. Jesse and I were stuck in our small room at the Ronald McDonald House for almost 18 weeks just the two of us, so we are very used to staying at home together and not going completely stir crazy. We get along, and have a large enough living space that if we need alone time, there are rooms we can go. I have the physical and emotional space to scream and cry, and get frustrated, but also to meditate and pray, and take the space to feel grateful. There are so many people out of work, and struggling, and full of fear, and there are so many medical professionals putting their own health at risk, and doing the best they can to help people through this dark time.
The most frustrating thing I have seen lately is the callous attitude of others who say “It is ONLY the elderly and immunocompromized at risk,” As if.. those people don’t matter? Those fringe groups matter. The elderly matter. Cancer patients matter. Disabled adults and children matter. It is a completely privileged and cruel viewpoint, and completely ableist. YES if I were to contract the virus tomorrow I would be fine, I would recover. But my elderly grandmother would not, my parents may not, my special needs son may not. I am willing to be bored for the next several weeks or MONTHS if it means those people, and others like them get a better shot at not getting infected. People need to look at the bigger picture.
So in the meantime, to try and flatten the curve, I am staying home. My family is staying home. We have been cuddling on the sofa, and cooking together, taking in a lot of family time. Mommy has watched Frozen II about three times already. Disney plus is constantly on in the background.
Some days being a special needs parent is really difficult. Today is one of those days. A lot of my friends have had babies within the same six months to a year of us having Corbin and while I know that his milestones would be different than his peers, not only due to his SB but also because of his pre-maturity. at times it can make my mom heart confused and upset when I see his peers surpassing him, or younger babies hitting milestones much more quickly and easily than he can. All of his doctors consistently say how well he is doing, and how they believe he is on track, but to see kiddos much younger rolling and crawling all over the place is challenging. I feel selfish even expressing these thoughts. Mobility is not a pre-requisite for happiness, and he will achieve what he can, and I am so proud of him always. It almost is just a stark reminder of the part of me that still blames myself for his condition.
Every doctor has told me that is not the case. But when we go several weeks with no changes, and seem to stagnate, I cant help but battle the little voice in my head that reminds me that if only I had grown him better, he would not have to deal with all of this. The logical part of my brain knows this was not my fault, but some days I backslide pretty hard. I just so badly want him to know how much I love him, and how he fills me with awe with every milestone.
I will never forget the first time I saw him non-nonchalantly roll over, and then give me a face like, “Oh this is no big deal mommy!” It IS a big deal little guy! and YOU are a big deal.
You are the BIGGEST deal.
We have a clinical/traditional PT evaluation in a few weeks through the Children’s Hospital. I have heard nothing but great things about their therapists, and I cannot wait to get him in weekly therapy. I am hoping this proactive approach helps him reach some milestones that he is SO CLOSE to. I feel like he is really close to rolling over in the other direction, and to crawling, and would love some strategies to help him as much as I can.
This week has had some ups and downs… then more ups, …. and then more downs. A roller coaster of emotions for this mama.
He is getting there, in his own way, and on his own time. I need to remind myself of this from time to time.
As of tomorrow my little baby Angel will be FIVE MONTHS OLD. I cannot believe it! If you had asked me even three months ago, still in NICU how I would be feeling at this moment, I would not even know what to say. It all felt so un-ending, and while I have anxiety over some upcoming neurosurgery appointments, overall I am going into the winter holiday season in a great mood. It is hard some days, to not dwell on how hard things were at the beginning, I almost feel like I am waiting for the other foot to drop. I think that is a voice that all special needs parents hear in the back of their head from time to time.
“Oh he is doing so great!” …….For NOW
“He is making so much progress” …….Just you wait
I think I am so pleased with how great he has been doing, and how amazing his care has been, but am realistic enough to know that we will not be without struggle and complications. Do I delude myself into thinking everything is perfect, knowing that the rug will eventually come out from under me? Or do I be more realistic and attempt to not let that snowball into pessimism.
I think that I just need to take everything one day at a time. With each appointment, and physical therapy session, and bill, and phone call, I need to just take a deep breath and live in the moment. I need to enjoy my baby while he is a baby. I need to get those late night, and early morning cuddles, and play peek a boo.
Baby seems to recognize faces a lot better now. Which has been so nice, as I was worried about going back to work, and losing our connection. When his Daddy or I pick him up from the grandparents in the afternoon he greets us with smiles and squeals! He is getting along better with his puppy brothers, and the cat is starting to explore his room, and decide that they are at least neutral. He is such a happy and joyful little boy, and so full of life.
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.
Sometimes it’s okay if all you did today was breath.
Tomorrow baby Corbin will be 3 weeks old. Three entire weeks! I cant believe it! Time is basically meaningless to me as I have been in a perpetual cycle of pump/nap/pump/visit baby/pump-repeat over the past twenty days. The longest stretch of sleep I get is between three to four hours, as I am trying to keep my milk supply up so that the nurses constantly have enough for him to feed on, since I cant nurse at this time until he is off of breathing support. This little guy is a fighter, we are still working on breathing consistently on our own, as well as gaining some weight, and feeding by mouth. The last few days he has made TREMENDOUS progress, but last week was ROUGH.
When the baby has a bad day…. MOMMY has a bad day. I spent most of last week sobbing, especially at night. It is so hard to not have my baby with me at night. I know he is in the best care possible, and even though we are only a mile away at the Ronald Mcdonald house, it feels like a continent away to this new mom. I cannot wait until I can bring him home to his little room, and to his house, and introduce him to his loving family and pets. The days when he struggles to breathe and I watch his monitors fluctuate, cause me a lot of anxiety, and I have spent many a day crying in the lobby of the CHOP NICU. Luckily our care team is completely amazing and I am constantly checked on by our social workers, nurses and coordinators. These feelings are valid, these feelings are normal, what I am feeling is alright, and taking care of myself is okay. As much as I want to constantly be by the baby, many people have encouraged me to rest while I can. These are the BEST babysitters in the world, right? But my pumping schedule keeps me from resting TOO much, although I try. The time has made it possible for Jesse and I to make lots of phone calls, and work on transition of care when we go home to FL, and try and get our many ducks in a row while the baby is still in the hospital. Lots and lots of appointments in our future!
A lot of people have asked me how I feel, and I don’t know how to answer them. My primary feeling right now is … exhaustion. I am tired. I am weary, and am running out of steam. I feel as though I have been strong, and holding everything together for months now, and without my baby able to be with me I feel like I am getting closer and closer to falling apart. Its like I had a stored amount of energy and strength and its slowly dwindling. I feel like a daisy at the end of a long summer, as it succumbs to the heat and moisture and begins to wilt and rot. I am consistently reminded that I am SO CLOSE to the finish line. I am a super mom. I can do this.
Well Everyone…What a crazy few weeks we have had! The baby came! Surprise! Our C section was scheduled for the 30th, but our little guy came early, on his own schedule on July 4th, 2019. The picture featured above is the first one taken by my husband after his grand debut! My water broke unexpectedly in the very early morning of the 4th, and by 11am EST we had decided to go ahead and get him out! Little Corbin Angel was born midday around 1:47 pm EST, and we instantly fell in love.
Mommy spent three days inpatient in that SDU and then was released back to the Ronald Mcdonald House. I am feeling pretty good all things considered. Between pumping milk every two hours, and shuttling back and forth to the NICU, I am remiss that it has taken this long to give you all an update! But despite his early arrival, baby is doing very well. He was born at a good weight, Five Pounds and six ounces, his heart and brain are looking great, and we are working on breathing and eating on our own, which is common with premature babies of this gestational age. So far we are emptying both bowels and bladder very well, and our labs have all looked really good! He came out crying, and moving BOTH LEGS! This is especially amazing, as pre birth we were really not sure what his functional mobility would be at in one of his legs. Little one is already crushing expectations and making his parents very proud. We are waiting to be released from the NICU pending certain milestones, and working on transferring his care and making phone calls down in Florida to make sure everything is ready Doctor wise for when we get to go home.
HOME… H-O-M-E… I am SO EXCITED. I cannot WAIT TO GO HOME. I want more than anything to be home with my baby, it makes my heart ache. Our NICU stay, while mild in comparison to many other families, has been so hard on me emotionally. Probably a mix between situational stress, postpartum hormones, and general feelings of displacement and home sickness, I have been quite a mess. I was so used to having my little one… literally inside me and with me at all times, that the transition to having him sleep not only away from me, but in the hospital and hooked up with tubes and monitors was very jarring. Some days are better than others. Some days I am fine, and continue to keep it all together and be a strong mama. Other days I am embarrassed to say that I cry for hours, and get emotional over the distance between me and my baby, and my home. I want so much to be able to nurse him, and take him back to see his family, and puppy brothers and to be back in our family home and town. We are probably in for several more weeks of waiting and NICU time before that is possible, and I am hanging on by a thread. I know I need to suck it up and remember that in the grand scheme of things a few weeks is the blink of an eye, but I just so badly want this chapter to be over. I feel like my entire pregnancy has led to this moment, and I want to be able to move on with our lives (Well at least until we come back for his yearly check up) Everything feels so.. clinical currently, and I am so emotional and in mommy mode and the two just are not meshing.
This kiddo is… CUTE. I know I am biased, but I am TELLING YOU he is the cutest little thing. (Pic below) I never knew I could instantly love another person as much as I love this little guy. I hope he always knows how much I love and would do anything for him. I would go to the ends of the earth for this tiny and perfect human. His smile melts my heart, and sometimes when I look at him I burst into tears. Not out of sadness but out of pure aw and appreciation. I just cant believe he is real, and here, and in my life. Welcome to the world my little Corbin! You are in for a wild ride my love!
Once my husband Jesse and I received the official diagnosis of the baby, we were put in contact with the coordination team at The Children’s Hospital of Philadelphia. (CHOP) We returned home from our appointment on March 27th, and I spent the next 20 hours or so sobbing off and on, and forcing myself to eat. Something I would probably not have bothered doing except I knew that my little guy needed the nutrients, and that was more important than me being sad.
I just had so many questions. “Why us?” “How did this happen?” “How does this make any sense?” I was wracked with guilt, thinking that my son’s condition was my fault. At our past appointment I had to answer a very detailed questionnaire and it just didn’t add up. This condition did not run in my family, I had excellent pre-natal care, I had been taking FDA approved vitamins for many months before we conceived, I had no history of drugs, I was under 35, my hyper logical brain could not make any sense of this diagnosis. A plus B could not equal C, and I couldn’t process what they had told me. Our doctor could sense my guilt when I sobbed out questions about how I could have done better, what I could have done differently to stop this from happening? He explained to me that… well? They didn’t know as much about Spina Bifida as one would assume. The most common thing that correlates to the condition is a lack of folic acid in the mother, but it is not a causation. Other common theories are, exposure to common viruses, over heating, environmental exposure to certain chemicals, the list goes on and on. There have not been enough studies to pin point what actually causes it. The ambiguity of this reality keeps me up at night. Its hard to live with a reality that I did nothing wrong, did all the things I was supposed to do, and am still dealing with the fallout. It seemed so unfair. It seemed so random. I don’t handle random very well. I am not an impulsive person. I very anally and meticulously plan when to relax. Some would call me… “high strung.”
The following day I took off work. Luckily due to being a pretty type A nerd, who doesn’t like to take off work. I had banked a lot of personal days and was able to spend the next few days at home with Jesse, kind of processing what was going on and figuring out what we were going to do. We got a call from the coordination team at CHOP. Deanna (last name withheld for privacy) was a true angel, and probably spoke to me for a minimum of 70 minutes, meticulously going through our baby’s diagnosis with me, all the best and worst case scenario symptoms he may encounter given the lesion he had. (All SB cases are different and depend on how high/low on the spine it occurs. So the severity can range quite a bit) She went through what my diagnostics would look like if we decided to go to Philly, and we worked out a timeline. We were set to go up and meet with the Fetal Diagnostic team on April 15th, 2019. This was not an oversight on anyone’s part, in reality I needed to be at a certain gestation before the diagnostics and the potential surgery could happen, and we found out about Baby H, about a week and a few days earlier than most families, so we would need to wait just a little bit longer.
This was both good and bad news. Good news because I was happy we would have the chance to go and meet with… arguably the most talented and advanced pediatric surgical team in North America, if not the entire world. Bad news because it meant over two more weeks of waiting. Waiting is something we had already gone through so much of. We waited two weeks to see the specialist. and now would wait two and a half more weeks to see if the team at CHOP would even be able to help our baby. All the while knowing that the tiny life inside me was also waiting, and potentially losing more and more function day by day. I would rub my tummy every morning and cry hoping that he was okay, knowing that potentially he was getting worse with every passing day. Each day meant more and more of his spine was exposed while we waited for answers.
After taking the latter half of a week off from work, I finally went back. It was nice to see my friends and co-workers, and the normalcy was comforting. I kept telling myself that things couldn’t be SO bad, if I was at work. If I was working how bad could it really be? So I did my normal hours, I talked to my bosses about what was going on, talked to HR, kept them in the loop about the possibility of me taking medical related leave etc. I took a lot of walks around the office nature walk, and took lots of pictures of baby ducks.
I talked to my therapist. We had been seeing each other via Skype for about six months and she has been (and continues to be) a complete god-send. It was nice to have a neutral party to cry to, as I felt that doing that constantly around the house at my husband was detrimental. She helped me through a lot of my misplaced guilt and anxiety. She helped me realize where that anxiety was really stemming from. Fear. I was scared. I was scared and sad that my angel baby would have a harder life than others, I was scared that somehow his hardships were my fault, I was scared that people would treat him differently and not see his potential, I was scared that the longer I had to wait for this treatment his health may suffer more, I was worried about all those things mom’s worry about, bullying/happiness/the future etc. The things that keep all mothers up at night, let alone moms of kids that have some special needs.
It’s hard to describe how you can love a person so much. A person that you haven’t even met yet. But I loved this little soul so much, and all I wanted was to make sure he was okay, and he would be loved and happy. I wanted him to grow and thrive and live a fulfilling and independent life.
” ‘Sometimes,’ said Pooh, ‘the smallest things take up the most room in your heart.’ “
The big featured photo on the initial WELCOME blog post is the earliest picture I have of my baby. My very loved and VERY wanted baby. One day he may read this, so I will try not to be TOO embarrassing.
In June 2018 I began taking pre-natal vitamins. I was trying to get as healthy as possible because Jesse and I had been seriously talking about actively trying for children, and I wanted to make sure everything would go according to plan. I was working out 4-5 days a week, had lost about two dress sizes and about 20 pounds, and was feeling the healthiest I had in quite some time. I had weaned off my anxiety medication, and was using a Cognitive Behavioral Therapy to help alleviate some symptoms of the same, as I had dealt with Generalized Anxiety Disorder since my teenage years. I was eating cleaner, taking lots of vitamins, and eventually went off my birth control pills.
We began actively trying for a baby around September of 2018, which meant I had been on my vitamin regimen for about 4 months. The first few months brought negative results, but we hadn’t been too strict as far as marking ovulation days until a little later in, so I wasn’t concerned. The first week of December 2018 I got a positive pregnancy test, it was not one of those big romantic reveals like you see on TV. I had a late period, and just had a feeling, but my first few over the counter tests had come back negative. On a whim I decided to shell out the extra $2.50 and bought one of the fancy digital tests to see if that could give me an earlier or different result.
It was positive. I ran into my master bedroom with my jeans at my ankles waving a pee stick at my husband while exclaiming ” I NEED you to look at this, I think I am hallucinating!”
Then because I am a generally neurotic person, I took a few more. I couldn’t believe it. We wanted this baby so much, and I just had to keep convincing myself that they were real and really happening. I found out a little earlier than most people would, so I had to wait about three more weeks before I was far enough along that an OB would see me to do the initial scans and confirmation appointment. I took a test a week after that just to keep convincing myself it was happening. The first week of January I was able to go to my first OB appointment, my mother, younger sister, and husband all accompanied me
They did our initial sonogram, he was the size of a grain of rice, the ultrasound tech confirmed the pregnancy was real, and we all cried. My sister Katie affectionately called him “Rice Baby.” Rice Baby was the first grandchild on BOTH sides of our family, and the first baby to be born in our friend circle in quite some time. Everyone was thrilled! Other early nicknames included “McNugget” and “Earth Pig” which was an allusion to the Chinese new year. We were so happy, I spent most of the day crying, and looking at baby clothes on the internet. We knew we needed to wait to tell employers and the general public until closer to the end of my first tri-mester until we were out of the danger zone of miscarriages.
After that everything seemed normal for the most part, we discussed names and nursery ideas. my February appointment seemed very good, my blood work had seemed fine, strong heartbeat, I had even lost a little weight towards the beginning due to the morning sickness, but they did not scold me, and I was feeling overall pretty healthy. At 15 weeks we had been too impatient to wait and we went to an independent ultrasound company for a gender reveal appointment, we found out he was a boy. The first week of March I went in for my typical appointment, and they did some blood work, and an early Gestational Diabetes test. I was 16 weeks or so along. I was worried about the GD test, because I had struggled with my weight for a lot of my life, and while I was currently in a good place I was wracked with paranoia. I left to go home that day with my biggest fear being I would get a call the following monday that I had failed my glucose test.
On Monday I did get a call. I sighed when I saw the caller ID. I rolled my eyes and knew it was bad news, because if the results had been negative they would not have bothered to call. Moreso it was odd because the actual doctor was calling me and not the nurse or the front desk. I braced myself.
The doctor kindly informed me that, my blood panel had come back strange, and they wanted to refer me to get a high level ultrasound at a High Risk OB in Temple Terrace. She explained that the blood test was a screening and not a diagnostic, but my levels had indicated a chance for Neural Tube Defects, and I needed to go and do the diagnostic. Unfortunately the earliest appointment wasn’t for another three weeks, and so the earliest time I could see the specialist was March 27th.
March 27th. It’s so strange to type it out, because I can honestly say (so far) was the very worst day of my life. I remember it like a movie, a slow motion play by play of an out of body experience. I entered the specialists office with my husband and my father. My dad is a retired M.D., and so I wanted him there in case the news was bad. He would be able to explain things to me and be a clinical perspective on our side, which I really needed after the last month of me losing sleep, and researching every possible thing that could be the matter with our little one. The ultrasound started, our technician was very nice, and began by asking us innocent questions about the baby and our family, “Was this our first pregnancy?” “Did we know the sex?” etc, making small talk
That quickly stopped. she began to take notes and specialized photos, and I knew something was wrong. Statistics kept swimming in my brain, so many people I knew had done this same screening and things were FINE, the odds of it being something serious were SO low, etc. Trying to comfort myself even though I knew in my gut we were about to hear some bad news. The technician excused herself, which I knew was really the confirmation I needed, if it had been nothing she would have told us on the spot but instead she went to summon the actual doctor. He came into the room
The Doctor came in, and in a very kind but direct way told us that our baby had a form of Spina Bifida called Myelomeningocele. It was a neural tube defect that occurs during the first four weeks of pregnancy. MMC (for short) occurs during the replication of early fetal cells, and the spine does not close correctly. Our son had a lesion on his spine, that looked like a bubble, where his spinal cord and nerves were exposed to his amniotic fluid, which was causing damage to his nerves and would effect his mobility.
Even though my gut had earlier told me that something was wrong, I sat there sobbing. My dad had gone pale, he had been convinced we had dragged him along for nothing. Jesse was stunned, gripping my hand and staring into space. It was not a good day. The Doctor proceeded to perform an amniocentesis on me. For the laymen at home that is when they stick a needle into your pregnant belly and extract a few vials of amniotic fluid to test for chromosomal abnormalities.
We were testing those because we had been given a few options by the doctor to discuss. The first was termination, which legally they are required to tell everyone who comes into the office, but was heartbreaking to hear nonetheless, the second was a surgery that could be done post birth to the baby to close the legion, and the third was a little bit of a long shot, but would include an in utero treatment with a specialist in Philadelphia, that would close the legion while he was still developing, and while it wasnt a CURE, it would ensure no FURTHER damage would be done to the baby. The longer the baby was exposed to the amniotic fluid, and the longer the spine was pulling down on the baby’s cerebellum, the more damage that would be progressively done, with no way of closing the legion until after he made his appearance into the world.
So we took a deep breath, and we made some phone calls. And in a HUGE leap of faith we….. went to Philadelphia. To complete a diagnostic to see if we would be eligible to get our son some preemptive care.
And that is where I am in now. In Philly. But more on that later.