My Thoughts on Motherhood & The Journey

I have been thinking off and on about motherhood for the past while, and I thought I'd share some of my thoughts.  When I found out I was expecting Carter I was so excited, even though it was a surprise.  I spent the next 8 months reading books, talking to people and getting all excited.  Near the end of my pregnancy I had several things that got in the way of really enjoying my baby showers, which should be the funnest part of the pregnancy.  As the end approached, I remember getting nervous and finally a little scared.  I wasn't sure what to expect as he was my 1st, but I knew I was still excited.  I looked forward to cuddling my little boy all day long, and just knew for sure he would fill my heart to brimming with love and fulfillment.  My husband Chris was also excited, but I think he knew a little more than me what to expect the first while as he had 2 little sisters.  He knew about the crying, the lack of sleep, the diapers, etc.  I was just all goggle eyed thinking of this tiny warm person that would be all ours, and was sure I would just love it.

I was induced at exactly 40 weeks on my due date, December 8th 2009, because I had high blood pressure.  I checked in that Monday at 4 pm and my Mom took me in because Chris was at work still.  He came about an hour or so later when I was already hooked up to my IV and getting ready for labor.  I won't go into too many details about the birth, but it went smoothly for me and I felt pretty much nothing.  I had Carter at 4:12 a.m. and he looked a little bluish gray to me, but I guess that was normal.  While they were checking him out, I was trying to see what was going on but the doctor was still working on me.  I heard him cry a little as they tried to get him to pink up, then they said they would need to check him out further in the NICU and would call me later to tell me what was going on.  I remember I wasn't too concerned yet, and I asked if I could hold him quickly for a picture.

After the nurse took the picture, they whisked Carter away and Chris followed after.  The nurse cleaned me up and transported me with all our stuff (we had too much) to my room in the post delivery department.  I got a call that they would still need him for a bit, and Chris came to where I was and showed me some pictures he had taken of Carter.  He looked really skinny and had kind of reddish hair; he was 6 lbs 10 oz at birth and 20.5 inches long.  As we settled in, still not worrying, I talked to a few people including my mom on the phone and was still okay.  One of the main doctors up in the NICU came down and asked our permission to run an IV through his belly button to run some tests I think.  She said they had concerns and needed to keep him for awhile.  I went to see him in the NICU a few hours later, and he was all hooked up and so tiny.

As we talked to the doctor and nurses there, we realized that something was definitely wrong.  That sounds stupid now, but I didn't really get it for awhile.  He had an oxygen helmet on, as well as an IV through his little hand and belly button.  The doctor we had spoken with originally told us to plan on being here for 2 weeks, and that he had pneumonia and some fluid in his lungs.  My memories are still a little hazy of that time, probably from exhaustion and emotions, but it was quite a rollarcoaster.  He was indeed there for 15 days, we went home the day before Christmas Eve.  He came home on oxygen and we had to adjust to having a 2 week old that we still felt like we didn't know, as well as his oxygen needs.  I didn't get to hold him for a few days at the beginning, and even then it was only a few hours a day.  They needed to keep him as still as possible and not agitate him.  When we took our new little baby home, I was filled with dread not excitement.  What I had thought would be a normal and healthy experience, had already been so exhausting and draining in every way.  Carter was a good baby, and slept most the time except to eat.  I didn't hold him much at home because it seemed easier to keep him in his bassinet hooked up with his oxygen and such.

Christmas was kind of somber because we were home for awhile, and the postpartum started to settle in.  I struggled with depression for a few months, and it only got better with talking to people including my husband and by taking anti-depressants.  I found that I was resentful of Carter, because of what we had gone through with him.  I had a hard time bonding with him and holding him, and feeling love towards him.  I knew these feelings weren't quite normal and so it was good I sought help.  I won't go into too many details, but it was the hardest time I have ever gone through.  I can completely empathize with those that have had postpartum, the baby blues or whatever they call it now.  It can be very debilitating and scary.  With motherhood already off to a rocky start, I felt like I was behind in getting to know my baby.  As time went on I held him more and felt more connected.  But then we started noticing things along the way that weren't quite right.  Carter hated tummy time and never rolled over, and we noticed his head started getting flat.  I took him into a craniofacial doctor, but he thought it would round out as he rolled and sat up.  Well, months went on and Carter never rolled.

At around 8 months of age, we took Carter back in and insisted he get a helmet.  He had it for almost 3 months I believe, through the holidays and almost his 1st birthday.  We were consistent and kept it on him 23 hours a day, but it only grew out just a little.  At his 9 month pediatrician check up, the doctor was concerned he was quite behind and suggested we start early intervention.  Carter had started sitting up pretty good at about 8 1/2 months but was still very wobbly.  DDI came out and did an assessment on him and determined he qualified for services, because he was at about a 3 month old level.  I was kind of devastated at the news, thinking I had done something wrong.  It is real easy as a mother to feel guilty and blame yourself.  As we started therapy, I kept going back to the early days blaming myself thinking he needed therapy and his helmet because of me.  Maybe I didn't do enough tummy time, didn't hold him enough, I put him in his bouncer too much, etc etc.  At 10 1/2 months Carter suddenly had a seizure, and we met with Neurology and had an EEG done.  They diagnosed him with epilepsy and started him on Keppra.  Less than a week later, I had just come out of the shower to find Carter seizing horribly.  He was getting all stiff and had turned blue; I rushed him to the living room to lay him down and called 911.  He threw up during this time and I rolled him to his side.  The next 5 minutes or so were the worst of my life.  I was alone with him, screaming and sobbing on the phone to 911 as I tried to perform CPR on Carter, not really knowing what I was doing.

The EMT's rushed into the apartment and started working on him, as I rushed to get dressed as I had just showered before this happened.  They said it took them about 30 seconds to get him breathing again, and he was rushed in the ambulance with me to Primary Children's.  Chris rushed behind us from school, panicking I'm sure as I was.  Carter ended up being in the hospital for 3 nights (over Halloween), as we monitored his breathing, seizure activity and revved up his Keppra.  He slept most that first day, but seemed back to normal after that.  I was nervous bringing him back home, but thankfully he seemed seizure free for some time.  As time went on, we added another seizure medication, took him off the Keppra, and added another.  His seizures have been called generalized by the neurologist, and they suggested we meet with Genetics to find out what he had.  He had seizures almost daily, some times not, but never as bad as that one he had had.  Through several doctors and nurses, we were able to get rushed into Genetic Metabolic with Dr. Warnock.  After considering Mitochondrial disorder, we discovered end of April 2011 that he had 1p36 deletion syndrome. 

His life has been a bit of a rollarcoaster, full of doctors, medicines, appointments and therapy.  I have gotten very involved in his care as I am home with him all the time.  His seizures are still not controlled, and we will probably be doing the Ketogenic diet here in a few months time.  Through his therapy, he has made some small gains such as rolling both sides and playing with more toys and looking around more.  He has come a long way, but still has a ways to go.  It took a lot of time and work to find out what Carter had, but the diagnosis doesn't really change who he is.  He is still my adorable little boy who loved to spin toys, and now loves a lot of different toys.  Sometimes the seizures seem to take away his awareness and energy, but then he comes back and smiles at me in his sweet way.  I know I have told some of this story before in earlier posts, but I've been thinking alot about his journey and where he is today.  His G Tube was obviously a great decision, because he now weighs over 26 pounds when he was 23.  He is looking around more, grabbing more and seems more engaged in life.  Motherhood has been a struggle for me as I have not had a "normal" experience.  Sometimes I get mad at why it happened to me and Carter and Chris, and I get down on myself thinking I'm not doing enough to help him progress.

I know a lot of women enjoy motherhood, but for me I still really have to work at it.  Carter is a lot of work in the sense he is like 26 pounds of dead weight and I have to carry him around everywhere because he can't crawl or walk.  His feedings are now easier, but the equipment is cumbersome sometimes.  I have gotten more comfortable going out and about, but it isn't easy with having to carry him.  It is also hard with kids like him that are disabled, because a lot of days you don't get much back in the way of feedback.  I can read him books, play music, play with him and take him on walks and not get much of a response back.  It can be very frustrating and some days depressing; it makes it hard to keep him entertained.  Some days he does great and looks at me a lot and seems happy, but then he retreats back again into his shell.  I know it takes a lot of work for him to do anything, so I'm glad for the times he smiles and looks at me.  I have grown to love Carter so so much, but most days are still really hard.  I just want the best for him, to be seizure free and able to walk and run around and play.  I want him to be able to enjoy life and feel comfortable in his body.  Motherhood to me has been such a learning process, certainly not an easy or always enjoyable one.  A lot of days I find myself very bored, because Carter is quiet and can't talk or babble and is content to just sit and play with toys.  I've had many people say how jealous they are and that they'd trade kids with me for a day.  That can be hurtful, because I would give anything to have a kid that can run around and go crazy and have fun.  It's funny how when you don't know how it is, you always wish for the other side.  I wouldn't trade Carter for anything, but I can always hope for more for him.