Bilateral Strabismus Repair Surgery

All people with Albinism have some degree of vision problems. Scotlyn is very near sighted, she has nystagmus, photophobia, and strabismus. We noticed her nystagmus, the involuntary eye movement, when she very young which led to her diagnosis of Albinism. As she got a bit older we noticed the eyes were also turning inward at times and were told by her Pediatric Ophthalmologist, who is also her surgeon and who we see almost every three months, that she would eventually need Strabismus surgery. We were put on a waiting list and then got a call with a date and waited anxiously for it to approach.

Our little Scottie had Bilateral Strabismus Repair Surgery on both eyes on August 15th when she was almost 16 months old. Strabismus is common for people with Albinism and for Scotlyn it causes the opposite eye that is focusing to turn inward. The surgery that she had loosened the inner eye muscles to help the eyes align properly. We were told that this is the easiest way to try and correct the inward turn and that the next step would be to tighten the muscles on the outer eye if needed. We were also told that this surgery would only correct about 70% of the inward turn and that because of her Albinism there is a greater chance of needing a second surgery at some point.

Surgery times are based on age and pre existing conditions, which allowed Scotlyn to be the first surgery of the day. This was terrific news because Scottie wakes up every morning around 6am and wants her cup of milk pronto. We are about an hour from where the surgery was, so we carried our sleepy baby straight from her crib to the car seat just before 5am and thankfully she slept until we got there. Once we were there it was enough of a distraction she didn't seemed as bothered by thirst or hunger, as I had dreaded. They called us in with the nurses right away where she was weighed, had her blood pressure taken, put numbing cream and bandages on her hands to help with IV pain, and a ID bracelet around her ankle. This would all be fine and dandy, but Scottie is preconditioned to be terrified of all these things after some bad blood work experiences when she was being tested for HPS (a type of Albinism with more serious health consequences).

The surgeon and the anesthesiologist came to talk to us and answer any questions and then she was called in for surgery at 7:20am. One parent was allowed to take her into the OR, so I suited up and brought her in. They decided to use a mask to put her to sleep before starting the IV, so I held her while they put a small mask over her mouth and nose and eventually she was asleep, so I laid her on the table and was shown out. She was really scared and it was so hard to see my sweet baby in an operating room like that, but they assured me she was in good hands.
They gave us a pager, so we could go have breakfast and wait. It wasn't long before my husband Kyle, who had gone to the vending machine, came running to our breakfast table pager in hand saying they were ready for us.

We waited in a little room for her for about 20 minutes when I heard her cry and a man came carrying our sweet baby with an IV plug in one hand and blood pressure cuff on the other. Her tears were quite bloody and her nose was really itchy from the morphine. She went through a few phases of crying and being agitated to cuddling and sleeping on my chest while we waited for her to be allowed to go home. She had to have a little bit of water before we were allowed to go, so eventually she woke up enough to take a drink and started chugging back from her sippy cup.

She slept the whole drive home and then when we were two minutes from home she got a little bit sick in her car seat. After being home, Scottie slept on my chest for a while and then she woke up and got really sick power puking up any bit of apple juice and water she had managed to drink and then she crashed. When she woke up around two she was pretty much back to her wild ways running around being a monkey. Her eyes are quite red in the inner corners and they have a raised bubble which happens in 75% of cases. She has prescription eye drops we need to give her four times a day which she fights and hates and other than that just Tylenol.

It will be 12 weeks before we know the full extent of how successful the surgery was, but we go back in two weeks for a check up with the pediatric ophthalmologist. It was a tough day, but she never ceases to amazes us how resilient she is and so full of joy.

Reflection

I think it's true when they say when you love someone you only remember the good times. Looking back on the past year, as a new mom, with all the normal day to day struggles (plus the added stresses of a genetic condition diagnosis, pediatric hospital trips, vision tests, and worries) a lot of the past year has blended together memories of pure happiness. It is only when I think of specific points in time I start to recall the difficulties and struggles of a newborn on my body, my marriage, and my sanity. As I delve ahead into the future of wanting more children, I think it's important to look back and reflect on how far we've come.

I wish I could say that my ten months of exclusively breastfeeding and the next few months trying to wean went complaint free, but it was not without it's mental struggles. I am lucky that breastfeeding went very naturally and easily for us and it is, without question, the most selfless thing I have ever done, but that didn't make it easy. I missed late nights drinking wine with friends, nights away with my husband, a few hours to go to the gym, shower, or do anything without having to be a small person's food source. Will I do it again? Yes, probably because despite all those things this year went by incredibly fast and I'm fairly confident that I also would have found reasons to complain if breastfeeding didn't work out and I had to wash bottles and pay for formula. I can honestly say now that looking back over the past year there isn't one night I would have wanted to give up with my newborn for a night out because the memories I have are the ones I will cherish forever (even if at the time I might have felt differently).

When I think of my husband and how much my life changed at first while to me, his seemed to stay the same, I marvel at the balance we're managed to create and I have no idea when that happened. I will always remember being home alone with a newborn while he was out golfing and hadn't been home since leaving for work at 7:30 that morning, sitting in my new grey rocking chair Googling "How to not resent your husband with a new baby" searching for someone to tell me it would get better and I wouldn't always resent his ability to go go go while my soul ached for even an hour to myself. The great thing about my husband is that he is committed to our family and he adapts easily, so although it took a while before he understood why I needed time away from the baby every now and then,  it doesn't take too many meltdowns or discussions before he hears me when I say "I need help" and "I can't do this alone". There, somewhere, between diaper changes, compromises, laundry, and letting go we managed to find what works seemingly at the same time we decided we are ready to do it again. I often wonder if adding a second baby will create an earthquake of disruption to the life we worked to create the last year, or will it simply be an aftershock tremble. Will the plates fly off the shelves, or will we wobble around for just a little bit before finding our grounding again.

It could be easy to list all of the things we gave up the past year, but it is far easier to list what we've gained. Before having a baby, getting up at 6am was a chore. Now, I ache to hear those morning rumblings and witness her first smiles of the day. The love we have now more than ever as a couple, as parents, and for our growing family runs deeper than anything I have ever known and if I think about it too long it scares the crap out of me.

So, was it worth sore nipples, sleepless nights, colic, loneliness, worry, more worry, headaches, and hassles? Hell ya. For every tear there has been a smile, baby giggles that will melt your heart, and when Scottie wraps her little arms around my neck and hugs me tight I know I wouldn't change one thing about the past year that got us where we are today. The first year is hard, but trust me when I say it just gets better and better.

The Right Fit: Finding a Dayhome

I had so many mixed emotions when my year at home with Scottie was coming to an end. I looked forward to clothes not covered in yogurt and a steady paycheck again, but I knew I would struggle to adapt to a full day without my baby. In her first year of life, I had not only never left her overnight, but I had never not been there to put her to bed. At most, I snuck away for a couple of hours on Saturday morning for yoga and a tea with a girl friend feeling guilty and rushing back to relieve my husband. I felt that because I nursed she couldn't survive without me even though she was well into eating solids and taking a sippy cup. It was a co-dependence we created together with a cockily newborn who would only stop crying when she was nursed, my imagination that this had never evolved, and the guilt I felt at the thought of leaving her.

When it came time to find a Dayhome I thought one in our area would be best and when I read an ad online I cried and felt it was going to be the perfect fit. Four days in, Scottie wouldn't eat, she refused to even sit in the high chair there, she wouldn't allow the sitter to put her down, and when I picked her up afterwards she clung to me for an hour looking like all life had been sucked from her. The sitter spoke of her frustrations and the other children's frustrations. I felt sorry for her and dreaded dropping Scottie off every morning for fear she would ruin someones day when she brought so much joy to ours. Then she came home with bruises behind each knee and we were told it was from kicking wanting out of  the high chair. It finally hit me. The ad I cried over wasn't a sign it was meant to be. Scottie was overwhelmed with two many children and not enough hands. Whether it's her low vision, her year at home most days with just me, or something else entirely, she needed less overt stimulation and more structured play.

Luckily, we quickly found somewhere new and putting all our eggs in a new basket I brought Scottie on a Monday morning feeling so anxious that someone else wouldn't be able to handle my baby who was so full of life and happiness at home. My heart raced and I felt on edge for two days waiting to go pick her up and hear the words that she wasn't eating, wouldn't be put down, and more frustration. It didn't happen. Scottie began to thrive. When I picked her up she smiled, blew kisses bye, and sang ba-ba-ba the whole way home. She was sitting in her high chair AND eating, she wanted to be held the first day and with each day it got better and better. She was being her silly old self and most importantly she was being loved by the new Dayhome provider and by the kids.

I feel guilty for not seeing the signs of her unhappiness sooner, but I figured all babies first weeks in someone else's care might cause the same outcomes. Sometimes you need to trust your instincts, but even more often you need to listen to your baby, do your homework, interview at least a few people, and find the right fit. I'm so happy that we have.

Expectations

I try to not have too many expectations. With no expectations my mind and heart can't fail me, or let me down.

When Scottie's long awaited ophthalmologist appointment was approaching, the one we waited six months for, I let my guard down. I made a mental list of my hopes and hopes-nots. I told myself she could see well, she probably didn't need glasses yet, and maybe we would have to patch her eyes to help the alignment, but not surgery. I said it to my husband, to my friends, to myself. I didn't want her to have surgery so young. I set myself up.

It's a good thing we trust her Doctor because he said everything my heart feared. Scotlyn, at nine months old, is very, very near sighted. "Very bad, for a baby one even one", the doctor said. She got a prescription for glasses that very day, about -6 in each eye one a little different than the other, but almost the same and surgery "right away, in the next six months" for alignment. The good thing is that her eyes are almost the same strength, so when one focuses the other turns in, but they both do it, which I guess is good.

Glasses. "Finding frames would be the hard part", the doctor said and they were. We wanted Miraflex frames because they bend and are lightweight with no screws, or anything to minimize breakage. I called around until I found a place that carried them and went in very prepared knowing the exact which two frames were for her age group for her to try on and simply put, it was a nightmare.

The first person we dealt with was a ding bat, not listening to our needs, and trying to get my screaming terrified baby to try on every  damn frame they had. Eventually another woman took over who ended up being amazing and brought in two frames in the color we picked and it was very obvious which frame suited Scottie the best. Then, they tried to take measurements and couldn't because she would not stay still and because of her nystagmus.

The glasses took about two weeks to come in and we got the videotape ready only to have Scotlyn pull them off and cry. Then after her nap we tried again and it has been really quite amazing ever since. She will pull them off when she gets tired, but most of the time she leaves them on and she even tries to put them on herself. I think that the glasses do help slow her nystagmus and we have noticed small changes in her vision like not bending down as close to her tray to find her food. We also got grey transition lenses put in and that by far is the best feature. My little moon baby who used to bury her face in me every time we went outside now laughs outdoors and loves walks and playing in the yard. It. is. AMAZING.

We go back in three weeks to report on the glasses and schedule the surgery. I am sure it will be harder on us than her and I sure hope so.

It happened to me.

There have been a few times in life when I heard a sad story and in the back of my mind a voice that I almost didn’t know belonged to me would say, “that won’t ever happen to me”.

 Maybe you’ve even heard that voice too.

The first time was when my sister died in a car accident at 23. I knew other families that lost their daughters and siblings in car accidents and it was sad and unimaginable, but it wouldn’t ever happen in my family. And then it did.

It happened again during my first pregnancy. I skipped over the part about Caesareans in “What to Expect” telling my family I knew I wouldn’t ever need to have a C-Section, and then I did.

Then my daughter was born with a rare genetic condition and that really threw me for a loop. We get over these hurdles, we talk about them, we grieve them, and then we get on with our lives.

 And I got through this, but it has to be said that this too, threw me for a loop.

I knew my period was approaching, but I took a pregnancy test anyways. Maybe something in me just knew. It said negative though and sure enough later that day I got my period. It lasted only a couple days and thinking back it was lighter than usual. A couple days later I couldn’t imagine my bad luck when I came down with the flu for the second time this winter.  Then there was nothing until the morning I woke up with what I thought was a period again just over a week later. I called the Health Link number I was given when we had our daughter and they said what I had dismissed, maybe I was pregnant. Then they said another word I never thought I would hear, miscarriage.

I took another pregnancy test and it said positive creating an exciting possibility of a baby. But, I kept bleeding. The doctor we saw said it is possible to spot and even lose clots and continue on to have a healthy pregnancy. About half of women do, but something in me knew it didn’t seem right.

I’ve known other women who miscarried and I might have even heard them says this, but for some reason I didn’t know. I didn’t know it was longer than a day long process. I didn’t know that even though we weren’t trying or even really ready I would still need to grieve the loss of baby I didn’t know was growing inside me. I didn’t know it would take a couple trips to the hospital, blood tests, an ultrasound, and how hard the waiting would be. Waiting to know if the pregnancy would progress, if the bleeding would stop, or if it wouldn’t. I didn’t know when they called to say I was an “8” that it meant on a scale of 0-25 that’s how much pregnancy hormone was in my body and what that really meant. I didn’t know that a piece of my heart would race with the possibility of another baby playing over details of what that would mean in our lives.

 I didn’t consider the hormones racing through my body from carrying and then losing a baby and the impact that would play on my emotions, or the impact the cramping and loss of blood would have on my body. I guess what I am getting at is that, I just didn’t know and I never thought it would happen to me, but it did.

This post is for all women who’ve gone through this before me and will go through it after me. For the woman who miscarried at five weeks and at five months. For the ones that tell themselves “it won’t happen to me” and how awful it feels when it actually does.  

We Took Our Albinism Baby to Jamaica

So much has happened since I lasted popped onto my blog. First, we took our Albinism baby to Jamaica. It was for my husbands sisters wedding, so it was a necessity that terrified me, but went surprisingly well. I was worried she would cry in torture from bright sunshine, get a sunburn, hate the heat, the list goes on. Instead, she seemed to not mind the sunlight at all squinting when she needed, seeking refuge under a UV protected floppy hat, had fun in the shade, and swam in the late afternoon protected by clouds, a full body UV spf 50 swimsuit, and several lathers of SPF 100 sunscreen. She ended up with the runs for most of the trip and whether that was from heat, or different foods (or a pina colada or two) coming through in my milk we will never know, but not even that seemed to phase her. She did great on the 7 hour plane rides through terrible turbulence and slept fairly well in the hap hazard playpen the resort supplied with thick piled blankets in place of a mattress. We spent a lot of the days on our balcony, so we were happy to have a corner bottom floor room where we could chat with our passing familiar guests and enjoy some sunshine while Scottie napped in our room, or we all would hang out there protected from the glaring morning sun. We formed a pretty solid routine of waking up, feeding her breast milk/cereal we packed, lathering sunscreen, getting her in UV protected clothes, and going for breakfast where she would play in the little umbrella stroller we brought (which I would not recommend. Next trip, I will be splurging on a better umbrella stroller where the next baby can lay down for naps instead of always having to go back to the room). After breakfast & visiting we would go back to the room for her morning nap, then we would do the same routine for lunch and a second nap, but by 3pm the sun would start to set and we would take her to the pool for  a dip and she loved the water. The time change also helped us out a lot because she could stay up later and come to supper with us which was so nice. All in all I would say the trip was a success even though I am not sure I would take any baby, let alone one with Albinism to an inclusive sunshine destination anytime soon. We kept saying we wish we was old enough to know what presents were because we wanted to spoil her for being so so good the whole time.She was the best little baby ever and the sweetest flower girl there ever was!