The birth of a “special” child

To begin with I want to say I don’t like to consider Avery “special”. I don’t like the term “special needs child”. I totally understand where the phrase comes from and why. I am not judging those that use the term or have chosen to associate themselves or their children with having “special needs”. I just choose to take Avery the way he is and we don’t catagorize him as a “special needs child”. He has a rare genetic disorder that causes him to be delayed. He goes to therapy and needs some additional help to build muscle tone and learn to speak. He is exactly the little boy he’s supposed to be. I deal with every day as it comes and try not to worry about the rest.

Everyone writes about their birth story. I’m not sure if the reason for telling that tale is to relate to others or not forget the details. When you have a child that is diagnosed with something right after they are born I’m here to tell you that the details of the actual birth sometimes get overshadowed by the diagnosis. I still remember all of my labor and delivery details (he’s only two folks) but the happenings after stick out more in my mind. I imagine that having a child with an unknown birth defect, or chromosomal difference or something far more tragic is harder than what we went through, but if my story helps anyone then it’s worth telling.

For the first 4 days after my son was born anything was possible. I had the new mom glow, the baby’s head had rounded out, we were doing fine with breastfeeding….and then the train derailed. We got a call on a Saturday of all days that something had come back on our son’s newborn pre-screens. My first thought was “he looks and acts great! They must be wrong.” The doctor that had been assigned to us at the hospital (more on this later) wanted us to come in. My husband and I were bewildered. I packed up the diaper bag and my new bundle of joy and we headed in. The next few hours after that my memory has thankfully tried to dull and blur around the edges for me. The doctor explained the tests, and the unusual results and sent us back to the hospital that Avery was born at. I remember thinking “what did he say about a genetic disorder?”. When we arrived at the hospital the nurses and doctor’s all circled around my now awake and upset newborn and tried any possible way to draw his blood. At this point he needed to eat so was upset anyway that mom appeared to be missing (I was sitting on a chair in the farthest corner away trying to find a happy place in my mind while my sweet baby wailed) and people who smelled strange were poking at him. I was beside myself.
*side note-my poor wee one had his vitamin K shot after birth like most newborns, and his blood kept clotting, preventing the much needed useful sample. They wouldn’t let me nurse him due to the protein processing didorder he was suspected of having, and the baby was dehydrated, further complicating the blood draw.

Eventually when nothing was working and the baby was beside himself upset they let me nurse him and they ushered the three of us upstairs. They were admitting us. I was dazed and couldn’t process what was happening. The room we were placed in, unbeknownst to me at the time, would be our home for the next three days. We ended up in a room at the far end of the pediatrics oncology floor. There was an outbreak of whooping cough on the regular pediatrics floor so we were with all the poor babes dealing with cancer and getting chemo or radiation treatments.
*another side note-the cleanliness standards are higher around children who’s immune systems are supressed due to their treatments. We were still at danger of infection of whooping cough but not as much.

After we were we were admitted I was told I couldn’t breastfeed the baby until they got the test results back. I was offered a hospital grade pump for my comfort and we were left to our thoughts. My parents brought us clothes and stood by while we fought about staying in the hospital (my husband lacks some faith in the medical community and was convinced that there had been a mistake). This part of the story still tears at me because when we were facing our toughest challenge we were not a team. He left me and the baby at the hospital and went to go get some food. It took him 2 hours. I later found out he’d gone to his car and called 3 of his closest friends about our situation. We had only been married a few months and hadn’t had anything come close to this type of situation. It was tough. I as usual….called my one best friend to cry about it all with and then focused on the baby. He was to be put on pedialite for at least 24 hours until the specialist who was examining our test results got in touch with us. My milk had come in right after we were admitted. I disvovered that in the best way possible…a large downpour soaking all of my clothing. I requested the pump.

The first night was the worst. No one slept except the baby. I pumped and stored the milk, and walked the halls in between giving the baby pedialite and fitfully trying to sleep. The lab techs came in the next morning to draw his blood again and were able to get a small sample that they were going to have the results rushed on. We saw the admitting doctor, and spoke on the phone with the specialist in Seattle about the necessity of staying in the hospital. My husband was insistent that they had admitted us for no reason,  the baby seemed fine. I was in a daze and had little to contribute. I’m sure that frustrated him but I didnt agree that the doctor’s didn’t know what they were doing. Everyone has their own experience with the medical profession and after three years of marriage I now understand where his lack of faith comes from. I digress…

The second day was a struggle. The previous blood sample clotted (big surprise there) before they could test it.  They had to do two more to get the final results. I became aware of all of the crying sick children on our floor that day as well. All of the bald heads and sounds of pain coming from other rooms was too much. I cried a lot while pacing the halls. There was the nicest nurse who checked on me a lot and the mother of a little girl with leukemia that let me cry on her shoulder. I’ll never forget that. Here her daughter was stuck in the hospital for an undetermined amount of time fighting a life threatening illness, and she was comforting me. I was a wreck and could only imagine what on earth we were up against for the rest of Avery’s life. I imagined the worst.

By the third day I was a complete zombie. No shower,  minimal food, very little sleep, and I was convinced by now that the doctors were crazy. My baby seemed heathy and looked perfect. My best friend stopped by to check on me and my family checked in every day. My husband was ready to pack up and discharge ourselves. I just kept thinking they’d take my baby away because it looked like child endangerment to not wait to see what the doctors found out. Our chosen pediatrician contacted us,  and we scheduled a follow up with him as well as an appointment with an ear nose and throat specialist to snip my son’s tongue tie. This poor baby had a lot he went through in the first few weeks of his life.

It turned out to be a blessing that we saved my breastmilk. The biochemical geneticist from Seattle Children’s Hospital gave our nurses a low protein
formula for Avery and a specific recipe that involved a gram scale and breastmilk. Of course the formula was very expensive and the recipe hard to master but I didn’t care if meant we could go home. Thankfully we were able to be discharged from the hospital after being given our new feeding instructions and formula. I didn’t know at the time that this would only be the beginning of our medical journey.

The three doctors that got us through those early days were the Dr. assigned to us after Avery’s birth (because our chosen ped didn’t have hospital rights) our pediatrician that I chose before the baby was born, and the specialist that treats children with Avery’s same disorder in the hospital across the state from where we live. None of the doctors we talked to, except the specialist of course, had ever heard of Av’s disorder. All I knew about it to begin with I learned from Google. To this day Avery has yet to display a symptom of it unless we count his developmental delay. The specialist is unsure if his delay is related to his Methylmalonic Acidemia. In the first 3 months of his life we had 7 doctor’s appointments, numerous blood draws, and I learned how to give him shots of B12 in his tiny baby legs. I went back to work and started the shots all while my husband was gone to Colorado for a 6 week academy.

I love my baby. I wouldn’t trade him for anything. In amongst all of the unknown and hard things my baby did everything a normal baby would. He smiled at me for the first time. He learned to crawl, broke his first teeth,  played, ate solids…he was still a normal child.

No amount of classes or books could have ever prepared me for Avery’s birth or the events after. When I started therapy and began to cope with my feelings about my new reality, as a mom of a child with a rare unheard of disorder, the one emotion I remember that helped me through it all was hope. There are no definites on this path we’re on. I just pray really hard and collect all of the great moments we have while we have them. I make a gratitude list almost daily of all of the blessings in my life. I kiss his little face every day and whisper in his ear a thousand times how much I love him.

My memories of having my first child will always include the beginning of his “treatment” if that’s what you could call it. It will always include memories of tears over the unknown and the loss of the sheer bliss that comes with being a first time mom. I will forever remember the gut wrenching fear that comes with a “sick” baby and a rare diagnosis.

When I hear stories of other children born with rare diseases or unusual disorders I just want to hug the parents. Being a parent is hard no matter the circumstances. I want to tell them it takes special parents to parent “special  children”. I want to tell them to just do what they can to enjoy every moment of watching their sweet babe grow. Isn’t that what every parent does?


Bottle or Breast: why the criticism?!

The big topic right now is breastfeeding. There’s all kinds of blogs, articles, and posts on social media about how breastfeeding is best for your child,  and shaming moms for everything from public breastfeeding to not breastfeeding at all. As a mother who knows how hard in some cases to breastfeed I’m more than mad, I’m outraged, and I couldn’t let it go.

There are so many reasons why mom’s can’t or don’t breastfeed. We all know how great breastmilk is. No one questions the health benefits for both mother and child. No one doubts the amount of bonding that happens with feeding your child (whether at the breast or the bottle). We all are aware of the options and reasons for both, and the mother’s that choose not to feed from the breast need to be cut a break. Why are we shaming each other?!?!

As a mom who had struggles with breastfeeding due to no fault of mine or my child’s I want to slap some people!

From the moment I was told I was pregnant to the moment I took my son home almost every medical professional I came into contact with either asked about breastfeeding or expressed an opinion. It was very pushy and overwhelming for a new mom who had lots of other worries to deal with. I wish I could tell you that it seemed more like encouragement than bullying but sadly that’s not the truth. There’s a reason my BP went up every time I went to see my lactation specislist. I used to call her the breastfeeding drill sergeant. 
(**she really was a lovely woman, just very to the point and direct, and at the time she scared me. I’ve thought of her a lot since and if I could I’d thank her for helping me realize I had postpartum I would. Moving on…)

Here’s the thing- you never know what people are going through!! Being a mom is hard for so many reasons! I watched an interview with a journalist who was shamed on social media for bottle feeding her son. She had breast cancer and a double mastectomy people!!! You can’t use what you no longer have! She shouldn’t have to explain that to strangers. It’s her choice every bit as much as having children in the first place is. Why are we being so mean to each other about it?! Where’s the respect of each other’s choices and decisions? Where’s the acceptance of a fellow member of the “mom’s club”? If you have kids, even if not natural born to you, you know there are lots of things that are so much more important that what your child ate from the ages of 0-24ish months (and of course I’m not judging those moms breastfeeding into their child’s 6th or 7th birthday! It’s a personal choice….). Why can’t we just support each other no matter what through one of the hardest things in life- being a mom?

All the things no one could tell you before you go through it yourself come to mind. No one told me how to “point the pee pee down” till Avery was almost 3 months old and I’d been changing his clothes about 4 times minimum a day since he was born. It’s not in any of the books either folks!! No one tells you that breastfeeding is not just about you, it’s also about how well your child nurses. There are so many things out of your control: lazy nursers, flat nipples, tongue ties, lack of production. We are all “in the trenches” from the moment we become parents. Where’s the hugs and love from fellow mothers?

Personally, I had always planned to breasfeed as long as possible. My breasts started leaking at 19 weeks pregnant, I took the breastfeeding class, I took all of the help offered possible, had all the supplies and the support of family and friends. I was really in a good frame of mind and attitude to be a long term milk factory for my son. Despite my best efforts he only got about 5 months worth of breastmilk and past month 4 he was getting supplemented formula to make sure he was eating enough. Our struggles were:
-he was born with a tongue tie
-I had to use a “shield” because of my flat nipples
-doctor’s made me stop breastfeeding him at 4 days old,  right after my milk came in, and then changed their mind’s after we were discharged from the hospital for the 2nd time
-my son was diagnosed with a protein processing disorder (lots of tests for the whole family and possibly an altered diet for him for life).

I went to a lactation specialist and did everything from fenugreek to almost having Canadian relatives send me otc drugs not approved by our fdc yet. I really tried and cried for a few weeks after I realized I had to give in and switch my son to formula. My stress level and our early struggles meant my supply tappered off drastically and I could no longer produce enough to feed my baby solely from the breast. I was fortunate that not a single person in my small circle of trust told me I had failed my baby because I switched him over to bottle-fed formula. My husband, best friends and baby sitter were all very supportive. Even my mother who is known for harsh criticism and judgement was surprisingly kind to me about the change.

Because of who I am and how closed off I can sometimes be I was fairly shielded from outside criticism, but that doesn’t mean it wouldn’t have happened if I’d told more than those closest to me about our lives and struggles. It’s incomprehensible to me why people are so judgemental of each other, but isn’t now a good time to be more accepting? There are so many things in life that are hard, and so many tough battles we as people face, can’t we find the kindness in ourselves for others? Can’t we just look at that mom in a restaurant or on a bench at the playground bottle feeding instead of breastfeeding and just tell her she’s doing a great job? Can’t we find some compassion and love in our hearts to replace the judgement and criticism?!

My thoughts on “testing”

At this stage in my son’s life we’ve had more medical tests run than most people do before the age of 50. We’ve also done tests that a lot of people will never have run on them. That’s part of what comes with a very rare diagnosis. We are deciding if we want to do further testing for the sake of science and advancing modern medicine. Avery is after all only 2 and a half years old.

Here’s where I put out a disclaimer. I have no judgement about others and the testing they have or haven’t had done, or the medical choices other families have made. I only know what our experience is and the reasons behind our decisions.

We are not having Avery tested for Autism yet. I’m not sceduling an evaluation through a child psychologist….yet. There is a timing to some of this. We don’t want a diagnosis that could be incorrect. His MMA could be causing his delay and could be contributing to a lot of other behavioral issues. He may well still be Autistic, or have a processing disorder, or both. I haven’t burried my head in the sand, or turned my back on my mother’s instinct about these things. I’ve just agreed with his father to see how his therapy goes, get his B 12 loaded and bring his levels down, and to give him time. The reason testing is important is to get him therapy soon enough to help him “catch up”. We’re already in therapy and doing well…I think we all deserve some time to get to the next step.

I was worried about Avery’s development from the beginning. His disorder effects a lot of different systems in the body, and has the potential to stunt him in a lot of ways. I have had to put all of my worried thoughts daily to the side and just focus on what we can do and what we do know. I look at him and the things he can do now and I’m thankful for his progress and his sweet nature. He has been a very determined little man since birth.

I did a questionnaire last week that his occupational therapist recommended to help with his therapy. It told me what in my heart I already knew. Avery likely has a sensory processing disorder. I’m glad we know what his struggles are right now, but regardless of what is “suggested” about the results never changing, I still want to wait it out. I still don’t want to have him labeled with anything until his specialist can regulate out his organic acid levels.

When 9 out of 10 doctor’s you’ve ever explained your son’s medical condition to still have to “Google” it there isn’t a huge level of confidence in treatment that goes with that. I feel like as his parent I’m more of an expert about my son and his health than they are. I know he’s felt crappy for a while and it is most likely effecting a lot more than people know or understand. I’ve been trying to get him back on his supplements for the last year. We’re starting them again now.

I’m not bitter regardless of how it seems. I am grateful for the medical community for finding this disorder in the last 5-6 years and for coming up with the testing to diagnosis it so soon after birth. I’m so beyond thankful that my son didn’t experience major complications or not survive because of something unknown or unheard of before. Prior to the newborn pre-screens for MMA children with severe cases that passed away were considered to have died from SIDS. Doctor’s and medical experts just didn’t know what it was or how to look for it. I thank God every day that we found his metabolic disorder so early.

I know how people look at you when you say your child has something rare. I know what it feels like when the answers you get to all of your important questions is “we just don’t know”. I also know that there’s no way anyone can test my son and know that his delays are autism related and not from his MMA.

I just want him to have a chance to be a little boy. There is time for more diagnoses, and testing. For now….we just need to keep moving forward, enjoy life, and count our blessings.

My muddled mind

I got fired 12 days ago.

I’ll let that settle in for a minute.

Getting fired seems scndalous, and incites sympathy when you tell people. I like to avoid all of the “are you alright?” business by fudging things a little and saying I got “laid off”. It’s a small white one, and my previous employer IS laying people off. I just wasn’t one of those fortunate, severance collecting individuals. Although…rumor is they may not be able to get unemployment.  Anywho…..

Almost two weeks in to being home and….my stress level is down. My son seems happy that momma is home. I am no longer sleep deprived.  Last but not least….I have less worry about my future. A weight has lifted and I feel pretty good. I have periods of brief anxiety over being able to provide for my baby since I’m not sure I’m getting unemployment yet and I worry we won’t have money to EAT let alone keep up with my car payment. Only time will tell (3-5 weeks according to the unemployment office).

So as I sit here watching too much daytime tv, my thoughts bounce all over the place and I try to stave off boredom and not spend any money unnecessarily. *yawn*

Av is down for his nap, I’ve already applied for jobs today and gone over my resume for the 5 millionth time, and my book has become a bore. I have gone to the mailbox 4 times today looking for a check that won’t come this early,  and I’ve even resorted to browsing Twitter which I find boring as well.

I’ve done a couple of loads of laundry fixed two meals for bubba and I and cried to the Today Show stories of breast cancer and childhood cancer.

I had a terribly sad dream two nights ago that I can’t shake and I am a little downtrodden. I’m ok with not having a job right now, but I want a 2nd baby so bad and the timing just isn’t happening. I just keep praying-for a job, for Avery, for Rob, and for another child.

Well, it’s time to go to the mailbox….one more time.

crazy eyes from my old cubicle