It has been a roller coaster week for me. As many of you know, my infant daughter, Matilda "Tilly", was born with health issues. She spent a month in Children's Hospital and has already had surgery - a fundoplication - and was fitted for a g-tube. It seems that with "special needs" children (and it has taken a while for me to truly embrace that label), it is always one step forward, two steps back.
Tilly is doing very well with her feedings. We have discontinued any tube feeding, including her overnight feed. She is taking all her bottles and has even been introduced to rice cereal with the aim of starting purees soon. GREAT!
However, we are still addressing a few areas of major concern:
* her vision/eyes
* her "developmental delays"
* her dexterity
* her strength
Last week we went to the pediatric opthamologist. I have been concerned with Tilly's eyes every since birth. For the first month, she didn't open her eyes hardly at all. Now she has 'droopy eyelids' which we now know is a condition called ptosis, her pupils are fixed (don't dilate) and a lazy eye which all effect her vision. Most likely this is caused by nerve paralysis possibly brought on by birth trauma. The pediatric opthamologist told us that her eye anatomy is good. We have to patch her eyes alternatively 2 hours each day. She hates being a pirate! He wanted to see her back to see if the nerves recover or if it is a permanent condition.
This week we went for our neurologist check up. The doctor immediately said her eyes concerned him (duh!). He is unsure how much she can see and or how clearly the images are for her. So he ordered a MRI and a VER - visual evoke response test and an ERG - electroretinography test to see how much stimulus is reaching her brain and if the information is being passed along. The MRI is to get to the bottom of her condition. We originally were told she had Dandy Walker Syndrome - however, now he does not think this may be the case. She definitely has a congenital brain condition but he is unsure of a diagnosis.
I am delighted that we will finally get some answers and to know what we are dealing with but at the same time, I am terrified. I have researched these tests and have found references to Muscular Dystrophy and Multiple Sclerosis. Again, I am conflicted because while those conditions have a lot of research and information that has been conducted, they can also lead to a shortened life span for those afflicted with the condition.
The other bit of news came on Thursday when I took Tilly to have her physical therapy evaluation. We have been receiving home health therapy sessions and are now moving to the rehab center on an outpatient basis. After our evaluation using the Peabody Development Motor Scales, I learned that my 5 1/2 month old is developmentally at 2 months.
I knew in my heart that she wasn't where she needed to be. She still doesn't "push up" on her arms when placed on her tummy, she doesn't roll over, and can't sit up. She doesn't grasp toys or play with her toes. She is still working just to hold her head up consistently. But actually hearing it said out loud - that she is developmentally delayed - hit me like a ton of bricks.
It sounds silly but all those "normal things" you do to celebrate your baby's life are odd for me. I can't keep a baby book because she isn't hitting those milestones. What do you put in the first month pages? Ummm, didn't open her eyes, had 4 seizures, could only visit her in a sterile hospital environment... ??? You can't talk about her "coming home" outfit after her birth because she didn't get to "come home". How do I fill out that she is going to roll over probably at 8 months not as 3?
The other odd thing is trying to explain it to strangers. People see Tilly in her car seat asleep when we are out and she doesn't appear to have anything "wrong" with her. Even when she is awake we constantly hear "Oh, bless her heart, she is trying to wake up" or "she is about half asleep". "Every time I see that baby, she is asleep? Is that all she ever does?" No, it's her eye condition - she is fully awake but just can't open her eyes all the way. Rather than making them feel bad, I just don't say anything.
If I am holding her and her head is floppy, I know people are thinking "she should be doing this or that"... I wonder if people think I am a neglectful parent because my child is not where she is supposed to be. How do you explain? Do you explain? I don't want to make people uncomfortable...most of the time, I just smile and then cry silently to myself because I am reminded again that she is not "normal".
One of my other frustrations is not knowing exactly what the future holds or having realistic expectations for Tilly. There are so many unknowns that I can't prepare myself mentally for what lays ahead. With children, we are always looking to the future - planning for their college fund, imagining their first day of kindergarten, etc. I don't know what exactly Tilly will be able to do in her future.
So many of our friends and friends of our extended family have been supportive. They have cut all of us slack as we struggle through this. Fiona has acted out recently because Tilly is getting so much attention. You know how kids are - any attention is better than no attention! It is hard to make Fiona understand that she is loved as much as Tilly but that her sister just needs some extra help now. There are so many people that are kind and compassionate having empathy for our plight and understanding that we, as a family, have good days and bad days because of this situation. Friends of my parents have sent cards, put on us on their prayer lists at church, and called to check on us. It means a lot. I guess I, too, am more empathetic because of our situation. I tend now to overlook things and "not sweat the small stuff" because I know there are bigger things to worry about. I tried to be more compassionate even with those I don't know because I never know what is going on in that stranger's life. S/He, too, may be silently struggling.
While it sounds like I am in a funk about all this, I do truly know how blessed we are. Matilda is so much better off than we imagined. She smiles, coos, and "talks" constantly. She even laughs out loud. She will get better - she is progressing. I believe she will be able to enjoy a quality life. She is fortunate to be receiving such good medical care and is getting all of her needs addressed so early on. I only need to look around one of the waiting rooms at her many doctor's office appointments to see how lucky we are to have a baby who is 'well off'. She isn't dependent on breathing tubes. She is alert and conscious of her surroundings. She has a family that adores her and can't imagine life without her.
The physical therapy evaluator told me the other day (after I broke down in sobs in front of her), "Honey, God gives children with special needs to Mommies and Daddies that can handle it and take good care of them". She was very kind. So now I am re-focusing and looking upon this situation as a gift. God trusted us enough, thought of us as "good enough" to handle all of Tilly's challenges. I guess you can say, we have won the baby lottery.
