Good Intentions

As any parent will tell you the minute you have that "gut feeling" friends and family with good intentions come out of nowhere. They offer you advice, support, theories, best guesses, sympathy, and hopefully appropriate humor to help lighten your worries. Every once in awhile those good intentions are totally wrong. After my husband and I decided to postpone the MRI and give Rae a chance to "catch up," I was met with some harsh criticism from a friend with good (as they viewed it) intentions.

My friend is a member of the medical community, in the land of therapy, and naturally I turned to my friend for some support and maybe a little instruction on what we could be doing, therapy wise, to assist in Rae's gross motor skill development. While sitting at their home I shed tears of frustration over how the simplest task will be more difficult for our daughter. My friend showed me a few exercises we could do that would help strengthen her core and get her "rolling" in the right direction. Unfortunately, by going to there for assistance I was eventually offered some strong, abrasive, and hurtful opinions.

After Rae's initial visit with Dr. H. I updated my friend on our decision to hold off on the MRI and the doctors diagnosis of Hypotonia. My friend was appalled and couldn't understand why we would postpone the MRI which could help us learn, "what was wrong with Rae!" My friend railed against our decision for well over five minutes throwing out statements like, "maybe she could be given steroids;" "putting her under isn't a big deal they (the hospital) do it everyday;" and implying we weren't making good parenting decisions because it wasn't what they would do. The tone of voice was accusatory, abrasive, and critical of our decision as Rae's parents.

So, now let's discuss the "good intentions" and how they quickly took a turn for the worst kind of intentions.

First, no parent likes to hear the phrase, "What's wrong with him/her?" I hear this and have to stomp down the urge to bare my teeth and attack. Yes, I am new to motherhood. Yes, I am also new to the emotional roller coaster created by having to adjust my definition of what "normal" development means for Rae. Yes, this giant ocean of special needs is intimidating in comparison to my previous life in a tiny "normal" pond. Yes, this makes me more apt to be defensive quicker than some. But ask yourself, if it was you, how would the implication that something is "wrong" with your child make you feel?

Instead of asking a parent "what's wrong," maybe ask them how their child is doing. This offers them the choice of sharing or not sharing something that they may be struggling to come to terms with themselves. Keep in mind that every child develops at different rates. Yes, there are guidelines, but the span of time for a particular skill can be very broad i.e. rolling over should happen between 4 months and the end of 7 months (according to the American Academy of Pediatrics). Since Rae was only five months at the time of her initial visit with the Neurologist we were still within the acceptable/average range of development. Give it time, we don't regret offering her that opportunity.

Second, any time anyone undergoes anesthesia there are risks and side effects. Yes, some of them are  rare, but they still warrant consideration. Since Rae is an infant and unable to lay still for long periods of time she would have to be under anesthesia at a minimum of 45 minutes, depending on the MRI orders. Given the nature of her diagnosis (Hypotonia) the muscles that help control/regulate her breathing may become too relaxed. This creates a new complication and may result in the use of a breathing tube being inserted to regulate her breathing. As her parents, we had to take all of this in consideration and decided to give her a chance to reach her milestones without putting her through what we hoped would be an unnecessary procedures. A quick word of advice, try not to belittle any medical procedure that someone may have to undergo or consider. Any number of things can go wrong and while the benefits may out weigh the associated risks it can still be intimidating to envision your child with tubes and needles attached to their tiny arms or legs.

Thirdly, I have no problem with someone disagreeing with the decisions we make as parents. Everyone parents differently and the choices made by some of my friends/family wouldn't be the ones I would make for my child, but that doesn't, at ANY point, give me the right to bully them. I'm sure there are times some would say I have overstepped my boundaries, it happens, but I try my best to keep some opinions to myself or at least broach the subject in a manner that wouldn't set them immediately on the defensive. Our doctors supported our decision and if they gave us any inkling that the MRI needed be done sooner then we would have followed their professional opinion.

Sometimes it isn't the argument that creates a hostile friendship, it is how the argument is presented. Being bullied over the phone because we made a choice that differed from what my friend believed we should have done has caused irreparable damage to our friendship. I don't feel comfortable sharing intimate details about Rae's condition or our decisions about what course of action is in her best interest. As much as I would like to open up to my friend, especially since Rae has started physical therapy, I just don't trust that another attack won't be launched. I especially don't need to be patted on my head for finally making the "right" decision.

Below are some links about the use of anesthesia for infants undergoing MRI's or surgery:

Live Stong: Side Effects of Anesthesia - More of a layman's approach.
Sedation and Anesthesia Protocol - This one is riddled with medical terminology.
The Society for Pediatric Anesthesia - Q&A - Pretty basic Q&A format.

A Gut Feeling

Early Childhood Intervention System

Most of us have heard the phrase, "I have a gut feeling," and usually we follow that feeling or trust that our gut is accurate. I always believed she was developmentally on track and at worst was just a little, teeny, tiny bit slower than other babies her age. Well, my "gut feeling" started kicking in around four months or so, but I thought it was just "New Mommy Neurosis" and I convinced myself that Rae was just growing at her own pace. At her five month check up with Dr. A. he had me look at the developmental wheel (similar to the adjacent image) to help me identify what she was doing. I hated that little wheel! The minute it was in my hand my mind would just blank and I couldn't seem to remember any physical milestones Rae was making. Finally listening to my gut, I told Dr. A. that I had concerns and he said he did too, but not to be alarmed. He referred us to Neurology at Nemours with comforting words about not fretting. I understood that he didn't want me to needlessly worry about the appointment and that he didn't want to say anything about his own suspicions until a specialist had a chance to exam Rae. My logical mind understood and accepted this...my emotional mind had other plans. After our check-up I sat in my car and cried. I raged about how I should have listened to my gut sooner and not dismissed my initial concerns as "New Mommy Neurosis!" I didn't want anything to be wrong with our daughter.

The call from Neurology didn't offer any quick answers for us since we had to wait almost 10 weeks for our initial visit! Well, it was completely out of my control, not that it ever was in my control, and we just had to wait. Due to work constraints my husband wasn't able to make it to her first appointment. So, a dear friend, Jae, went with me to offer support and be a second set of ears. Lord knows I needed them! Personally I feel it is best to have a second set of ears present to hear what your brain attempts to tune out. Jae even took notes! On to the appointment...

The Nurse Practitioner came into the exam room first and ran through the preliminary tests: reflexes, head/neck stability, and the "superman" to see if Rae held out her arms in preparation for a fall (there were more, but I don't recall them all). Once she completed her exam we waited for Dr. H. to come in and offer his assessment after another less extensive exam. He professional opinion...Benign Congenital Hypotonia (layman's terms: Harmless, Present at Birth, Low Muscle Tone).  Which according to Dr. H. and online resources is a diagnosis that is giving when there may not be any real explanation for the cause. Dr. H. also explained that there could be HUNDREDS of causes for Rae's hypotonia and it would require a series of tests (Blood Work, MRI's, CT Scans) to rule OUT the looonnnngggg list of suspects. He also believed it would be something she would outgrow. This information made me hopeful.

Our first step in ruling out possible causes was having blood work done. This was the least invasive in my mind and was the easiest decision. However, it was NOT the easiest to accomplish. I had to hold my helpless daughter in my lap while extended her tiny arm out for a nurse to poke it with a needle. I never heard my baby cry so loudly. It tore at my heart. To make matter worse they had to poke both of her arms! It was such a terrible experience for both of us, but we managed to "stick it" out and after several "I'm sorry's," some tears, and lots of cuddling we were ok again.

The second step, the MRI, was optional at the moment. Since Rae was only 5 and a half months we decided to wait until she was 7 months before making the decision to have an MRI done. We based this decision on what is considered "normal" development and by the END of 7 months Rae should be able to roll over. We really wanted to give her a chance to meet the milestone in her own time and I attempted to help her the best I knew how...by helping her roll over. It wasn't met with much enthusiasm from our little girl. We were also concerned about using anesthesia on her at such a young age...especially if it wasn't necessary. It was the decision my husband and I felt best about at the time and there were some that were very critical of our choice (more on that later).

In the end Rae's blood work came back normal and that offered some additional comfort to us and we continued working with her at home as best as we could. We hoped it would be enough and that by the end of 7 months she would be rolling over with wild & reckless abandon. A Mother can dream right???

The Sun Rises

My husband and I tried for over a year to conceive our daughter. It was one struggle after another and my doctor couldn't offer an explanation for why we weren't getting pregnant. I was about at the end of my ability to handle the stress of "trying" and decided to give it about six more months. After those six months, I was going to give up on my dream of having a child of my own. That decision hit me like a Mac truck and was the hardest decision I have ever had to come to. Fortunately, after the decision was made I found out I was finally pregnant with our daughter, who is now 11 months old and is our own little Rae of Sunshine.

August 29, 2010 - 1 month from official due date.

My pregnancy was a cake walk and as my doctor said, "A boring pregnancy is the best kind." The only concern we really had was her size since my family is known for making BIG babies (I was 11 pounds!). After carrying Rae a week past her due date we decided to schedule a C-section. This decision was not lightly made either, but she never dropped, I never dilated, and then add in the worry that she was well over 9 pounds and you have a few good reasons for opting for a C-section. Everything went wonderfully. She arrived with 10 fingers, 10 toes, a head covered in reddish blonde hair, and GIGANTIC cheeks. To everyone's surprise, she was only 8lbs 4ozs. But our Rae had a small storm cloud following behind that I don't think any parent could prepare for. There were no obvious signs that a problem was looming just over the horizon. No test performed would detect it and it would take months before the physical symptoms would manifest themselves. Our daughter has Hypotonia.

It isn't insurmountable, but everyday things that we often take for granted will be difficult for Rae to master. Her physical milestones will be outside of the range of "normal" and as a result my conceptions of "normal" are being redefined on a daily basis. I intend to share the difficulty we had conceiving, my "boring" pregnancy & long awaited birth of Rae, and our journey into the world of Hypotonia (along with other hurdles thrown in our way). Hopefully, the things I write will be helpful to someone else. As I have been told repeatedly, "You are NOT alone."