Tiny Salutations

Tiny Salutations


Friday, July 4, 2014

My story & The Beginning of my Blog

I have started a blog for family and friends to be able to keep up to date on our family's current struggles and triumphs and also to provide a relatable story to those living with a special needs child.  Our family (our family-minus-dog photo below) is comprised of a mom (me), a dad, a now two year old premature amazing little boy, and a very old 16 years and going strong dog.  I have 4 autoimmune diseases and my son has a whole host of daily battles that we must deal with as a family.  This first post is going to be a long one, so grab a snack.  Also, I am going to tell the story of my son's birth, so please keep in mind this may be hard for some, especially mothers in the NICU.

The day my life changed forever

April 2012, 27 weeks into my first pregnancy, I was cleaning up after a presentation at work (I was this close to finishing my Master's degree in biology).  I went to pick up a table when I got a sudden sharp pain in my head followed by vision loss, which did not resolve immediately.  I thought that I was just maybe doing too much while pregnant and decided to rest for a while and use the time to catch up on emails and paperwork.  When my vision still wasn't normal 2 hours later, I decided to go to the midwife.  Just 3 days earlier, I had been seen due to the fact that I still wasn't feeling him moving other than a couple flutters I had felt previously.  I was kept at the midwife's office all day and then was sent home to rest and return in the morning.  The next morning everything went downhill and fast.  I went back to the midwife in the morning, who sent me to the local hospital, who after stabilizing me sent me to the university hospital.  They tried to get a helicopter, but couldn't get one in time and sent me by ambulance instead.  I got bad news at the local hospital- my baby boy was not doing well and my condition was deteriorating fast.  The vision loss I experienced was suspected to be a stroke, my organs were beginning to fail, and I had preeclampsia and HELLP syndrome.  The ultrasound showed my son had problems with his heart, intestines, legs, and he was much too small for his gestation.  At the university hospital I got a few more ultrasounds.  In addition to these issues, they thought he was missing his right hand and might have dwarfism (neither of which turned out to happen), but the worst news was his size.  His head was 26 week size (this is at 28 weeks gestation), but he got smaller from there.  His chest was only 22 week size and his legs were even smaller. His legs had atrophied (meaning they were getting smaller instead of growing) and his organs would be underdeveloped.  I had an amniocentesis to determine if the problems were on his side, which is very difficult at 28 weeks.  They kept having to start over, because he was moving and taking up much more space than when it is normally done in the first trimester and therefore getting poked.  At 28 weeks and 2 days, we were given a talk by the specialists and were asked to decide what we wanted to do.  If felt like we were being asked to choose how he would die.  They said we need to act fast or I will die, and we were given a much less than 50% chance of his survival and my survival wasn't looking too good either.  They did not think his chest would be big enough to accommodate a respirator. 
On 28 weeks, Good Friday, our son was born!  I woke up at 5 am with contractions.  I'm not sure what contractions are supposed to feel like, but there was no "timing".  It was one long cramp, like I ate something bad, that did not end until delivery.  The doctor came to discuss our decision making process and I said I thought I peed myself.  I had read stories about women who thought their water broke, but had really just peed themselves, so I wanted to save myself the embarrassment of being wrong.  Then it just kept going, so I said my bladder can't hold that much.  She checked and it was blood.  My placenta had come off the wall (which is why I was contracting) and I was dumping huge amounts of blood.  I was rushed to emergency C-section.  The doctor held my hand and kept telling me to stay with her and not die.  I was losing consciousness, not breathing well, and lost a lot of blood.  My son was delivered in minutes, but couldn't cry since his lungs didn't work.  They took him off to save his life while they fixed me up.  My husband watched them as they worked a miracle.  They couldn't get his lungs to work even with the respirator at first, but I had told them to do everything they could and they did.  Finally they got his lungs to inflate!  He was 1 lb 7 oz and 12.7 inches and just beautiful.  I couldn't see his face or touch him for a while, but it was just wonderful that he was here with me.
Mom and Dad just before our son was born

Not the typical birth photos, but just as precious to me

The next 2.5 months I went to the NICU every day.  In the beginning L (our son) was very unstable.  His nutrition was given through an IV instead of drinking milk, had a PDA (a hole in the heart) which caused a murmur, breathed though a respirator, got blood and platelet transfusions, was treated with UV for jaundice, needed insulin and caffeine, and had a PICC line (similar to an IV but goes all the way to his heart).  After about a month, he got to move to a CPAP (a different machine to assist in breathing) and tried milk through an NG tube, and then a few days later I got to hold him for the first time.  I could only hold him for very brief periods of time for a while, but it was amazing. Then, he moved to a high flow nasal cannula to breathe.  At some point, he got NEC (a very serious intestinal infection) and once again I couldn't hold him.  He went through two rounds of antibiotics and escaped surgery.   He had a similar issue with NEC two more times, but it didn't progress.  After a while, he moved to a regular nasal cannula to breathe and got to try on clothes.  He was swimming in the preemie sized clothes!  At 2 months, he could finally see us (his eyes didn't work before that and didn't even open for a while), started physical therapy, and was transferred to a hospital a little closer to home.  The new NICU had individual rooms, which was so nice, although we missed the thorough care of the first NICU.  At the first NICU, he was in a room with several other babies and with all the equipment, my husband and I couldn't even both see him at the same time.  At the new NICU, things moved very quickly, he ditched the incubator and the nasal cannula, tried a bottle, hit 4 lbs, and had a bath for the first time.  He came home about a week later. In fact, at the second NICU, things moved too quickly. Certain issues never resolved.

First week (under UV lights)

About a month and a half old
About a month and a half old
 About 2 months

Dad holding L just days before leaving the NICU

Living with L and Autoimmune Diseases
So much has happened since L has come home.  He has had episodes where he has struggled/stopped breathing so many times that we are used to it by now, but it is still scary every time.  He had a hernia, which literally resolved the week I called to schedule the surgery.  He has had an eye surgery for a nerve palsy.  Until about 20 months old, he threw up about every 10 minutes or so.  I have no idea how he grew at all!  He has significant delays in language and gross motor skills and has sensory processing disorder.  His providers have tossed around the idea of him having autism and cerebral palsy, but no one seems to agree on anything.  I think the last six months have been the hardest since the NICU.  He has been sick nearly the entire time.  He gets a virus, heals, then a few days later gets another virus and every time he gets sick it is much more serious than kids generally do.  He gets very high and prolonged fevers.  It is not uncommon for him to a fever of over 105F for over a week.  He has also had endless bacterial infections during this time- ear infections, eye infections, and pneumonia.  He had a partially collapsed lung from pneumonia 3 weeks ago and just this week had his first seizure, which was about 10 minutes long (possibly a febrile seizure).  He cannot be exposed to other kids or crowds.  We are trying to limit his exposure to other people at all until we can find out what is wrong with his immune system.  It can be exhausting caring for him when he is sick so often, but it is also so wonderful to be his mother, and I wouldn't change it for anything.  When he gives me a hug and kiss, or tries to communicate, or even just when he smiles, every single thing we have gone through is worth it.  When I grow up, I want to be just like him.
In addition to L's struggles, I have dealt with my own fair share.  The reason my pregnancy went horribly wrong is that I have several autoimmune diseases.  I have lupus, antiphospholipid antibody syndrome, myasthenia gravis, and mixed connective tissue disease.  I have to take a ton of medications, including chemotherapy, to keep things under control, and even so it is still not really under control.  My arthritis from lupus is very bad and at times is so bad I have difficulty even feeding myself or walking.  My organs have taken a very long time to recover from the organ failure, but are getting better.  I had an episode where I struggled to breathe for a few weeks, which was a myasthenic crisis.  I may not live as long as I would have without diseases and without the stress of the pregnancy and the threat of my organs giving out is very real.  My eyes still have problems.  I cannot have more children, as it is too dangerous.  I think L is enough for me anyway, and I don't think it would be fair to have another child right now with how much care he needs (in our particular situation- large families with children with special needs can be very beautiful!).  In case you were wondering, I did finish my Master's degree and defended my thesis the week L came home from the NICU.  My husband also finished school that summer.  I went on to teach cell biology at a community college for nearly 2 years, but had to step down when my health got in the way.
Overall, I am grateful every single day for the beautiful family I have.  It is unique, and we have our struggles, but I don't know if it is possible to have a family more full of love.  We have to plan our lives around our illnesses, but all the hard work is so worth it.  I hope to find out what is wrong with L's immune system and to work on creating the best life we can for him. 

 Two years old
 It took him a long time to be okay with being touched, even a hug from mom, but now he loves it and wants it all the time!
 He is used to being at doctors often and getting treatments.  Here he is role-playing with his medication.  He doesn't know how to actually use it himself, (and is in no danger here and being supervised) but gets the idea since we use it daily and have used some as much as every 2-3 hours when he is really bad.
 Walking the dog on his second birthday. 
Another tulip picture (2 years).  My husband and I were married in this tulip field, and it is very special to get to share it with L every year.

The Tiny House
We are just starting to build a tiny house for our family.  We are living on one income and need to adjust our lives to have a better quality of life and provide everything our son needs.  We are also extremely environmentally conscious and living in a way that minimizes our impact is and has always been my intention. We are in the acquiring materials and planning stage.  Our house will be mobile and approximately 200 sqft.  We will be able to customize it to our family's unique needs.  For example, we plan to include a slide for L to get down the stairs and an additional rock wall entry to his room for physical therapy.  By utilizing space efficiently, our family will be able to live comfortably in this small space.  Right now we live in a rental house that is about 900 sqft.  I consider it a big house, but most consider it small.  I feel there is a lot of wasted space due to design and some places aren't used well.  For example, L's room is much bigger than he needs.  It has only his bed and clothes in it and there is tons of empty space.  Half of our living room is unused, because of a wood stove that takes up tons of space with brick work.  Stay tuned for future posts about our construction project!

I warned you it would be long!  Anyways, that story brings you up to date and I hope to continue to use this as a platform to share ups and downs and keep everyone aware of where we are and give insight into why we do the things we do.