Tuesday, January 27, 2009

So am I just a paranoid Mommy or is my Mommy-Radar working?

I can't shake the feeling that something is wrong with Matthew. I don't know if its just that I feel it is to be expected, or if I'm super-paranoid, or if I just know what others don't. Matthew and I have a strong connection. The two of us have been through so much since before he was even born. I always get those feelings that something's not right, and unfortunately, I've been right so many times when it comes to him.

For those who don't know much about Matthew, we started off having problems with his pregnancy right at about 9 or 10 weeks along. I had placental abruptions straight through until delivery. I went into preterm labor at around 29 weeks with him. Was put on hospital bedrest from 30 weeks until delivery at 36 weeks (with a week of bedrest at home). After Matthew's birth, he had jaundice, then lost a pound and a half of weight during the first 5 days of life. He had severe reflux almost from day one.

At 6 weeks, I took him to the ER because I knew in my heart something wasn't right. He screamed a scream I had never heard before, was ashy, and unconsolable. At the ER it was determined that he had two incarcerated inguinal hernias that needed to be repaired immediately. That next day, before being prepped for surgery, he had an apnic episode in my arms. I thought he was going to die right then and there. It was one of the scariest moments I had ever experienced.

During the next few months, he was slow to gain weight, was refluxing everything he took in, and just wasn't thriving the way he should. By the grace of God, and the fact that his pediatrician actually listened to me and my concerns, she ordered an upper GI test for Matthew the week before Christmas 2007. The UGI found something that they weren't looking for. It showed us that Matthew had a birth defect called Malrotation of the Intestines. Its a life-threatening birth defect that usually is only found out after the child becomes very sick or dies (the intestines wrap themselves around the mesenteric artery, stopping blood flow to the intestines, causing them to become necrotic and die). We were so fortunate that Matthew's defect was found before there was any damage. Matthew had his surgery last January to repair his intestines.

A few months later, we were concerned that Matthew had food allergies because he wasn't eating well and was reacting to almost every food he ate. He was tested and at the time all things came back negative. His medication was upped for his reflux, and it was like a switch with him. All of a sudden, he was eating everything in sight. He was thriving and gaining weight. It's been amazing to see. And yet, in the back of my mind, and in the deepest parts of my heart, I have these bad feelings when it comes to him. Like I just expect that there's going to be something else. Like the shoe is going to fall off the other foot. And I can't shake it.

So my latest concerns? There's a couple. The good thing is that Matthew goes in for his 18 month well child checkup on Friday. I'll be voicing all of my concerns with his doctor (who I love love love and would follow her literally to the ends of the earth - or at least within a 45 minute drive from here!) but I thought I'd write them down here too.

Concern number one is the amount of sleep Matthew gets, or I should say requires and demands. He goes to bed every night between 6:30 and 7 pm. He sleeps straight through the night until anywhere between 7 and 8 in the morning. So about 12-13+ hours each night. Okay pretty normal. But within an hour of waking, he's ready for nap number one. He tells me he's ready each time. He'll be sitting there playing or whatever and then BAM, he fusses. If I ask him if he's ready for night-nights he grabs his cup or blankie or paci (whichever is in the room with him) and runs to his bedroom door. He stops at the door and just waits. As soon as I open the door, he runs to his crib and waits to be picked up and put in. He starts singing as soon as he's in his bed and is asleep within 10 minutes. He's an angel that way!! Love it. However, he'll nap for anywhere between 3-5 hours!!!! If I wake him before he's ready, he's miserable and will scream the rest of the afternoon until he's put back to bed. So after his nap he'll get lunch (which lately has been around 2pm because he's been sleeping so long). He eats lunch, plays for an hour or so and the cycle repeats itself. Fussing, running to his bed, singing and sleeping for another 2 to 3 hours. Count them all up and he's sleeping anywhere between 17-21 hours a DAY!! That's not right. It's not normal and its scaring me. His crazy sleeping schedule is also making me feel trapped in this house. We can't go anywhere because he's always sleeping. And I can't wake him before he's ready or I'm dealing with a Grizzley Bear. But this isn't about me. It's about him and like I said, I'm nervous and think something is wrong.

Concern number two: Matthew's cough. He's had a cough since before Christmas. Our pediatrician doesn't recommend cough medicine for toddlers his age. She's recommended Benadryl in the past. For the first week of his cough I used that on him, but it didn't make much of a difference so I stopped. We made it through the holidays. He still had the cough though it was mainly just at night. On January 8th I brought him in to see her, told her about my concerns with the cough (as well as his sleeping patterns). She listened to him. Lungs sound clear, no signs of sinus or ear infections, throat looked good. Sent us for a Chest X-Ray just to be sure and recommended we give him Claritin to clear up the cough. Chest xrays came back normal. We used the Claritin and the cough cleared up within a few days. Stopped the Claritin. Well guess what's back? Cough, mostly at night and when he's napping (which is all.day.long). I started him back on the Claritin today.

Concern number three: Matthew's speech, or lack-thereof. He doesn't talk. He used to talk. From 12-14 months he was talking, not much but some. He'd say Mama, Daddy, uh-oh, hi, hello, Sunny (the dog), Riley, Austin. At 15 months he started walking (yeah, a bit late). Once he started walking, he stopped talking altogether. I expected that, ya know the whole learn a new motor-skill, forget about focusing on others thing. But he's now a running, climbing fool. But he's not saying anything. He doesn't say any of the words that he used to except he'll occasionally call out Austin and Riley (comes out souding more like "Autty" and "I-yee"). We don't talk for him. I don't baby talk to him either. I'm constantly saying "Matthew, tell Mommy what you want" or "Say more please" "thank you mama for the cup", etc etc. I point to things and tell him what they are. He doesn't respond, doesn't try to repeat the sounds. He understands me and can follow simple directions - go get your kitty cat and bring her to me, show me your belly, can you find your sock. He babbles and has a full conversation with me but none of his words even sound recognizable. Its just a bunch of nonsense, with the same sounds repeated over and over.

I dunno. I don't think these things are all related. They're just three separate observations about him that make me think, "Hey things aren't right". The sleeping thing has me worried about anemia or horrible things like cancer. The cough? Probably allergies. The talking? I don't know. I get scared with all the talk about the number of cases of autism being reported in kids.

But the truth of the matter is, I'm deathly afraid that he's not going to be with us for very long. I've had that fear ever since he was a few weeks old. I've had dreams about him dying. I just have this deep feeling that we'll lose him before we should. Like he's not going to make it to adulthood. I hate this feeling. It scares the crap out of me and makes me even more paranoid. Its horrible but I just can't shake it. I don't know if its just because of all the things we've been through with him. I don't know if its just me going crazy. I don't know if it's because I KNOW. I dont' know what it is but I hate feeling like this. The only good thing about it all is that it makes me very proactive when it comes to his health. At the slightest sign that something isn't right I take him to see his doctor. And for the most part, I've been right about things. Mommy radar works here. Which, unfortunately, just scares me even more. Because if I was right about things not being normal which lead me to take him to the ER and find out that he needed surgery, then maybe I'm right about things now.

I can't lose another baby. I just can't do it. I'm not that strong.


Beth said...

Hey Meg!

The sleeping thing could be diabetes. Does he drink an abnormal amount? Lots of wet diapers? Just a thought.

Have your tried sign language? That might help his speech progress. Again, just a thought.

Hang in there. Matthew is a walking, babbling miracle!

Kim said...

I'll be praying for you! I'm glad you have a dr appt this Friday so that you can share your concerns. You are blessed to have a pediatrician that takes your concerns seriously. Hopefully she can put your mind at ease or get the wheels in motion to get to the bottom of the issues. Hang in there and remember God will be with you and Matthew through it all.

McKay Family said...

Oh Meg! I know it can be terrible to have these feelings. Hopefully you can get your concerns eased or get some answers. Just remember, that Matthew has defied the odds since the start...he's strong...he'll continue to be strong! Prayers for your peace and health!

Jackietex said...

I'll be praying! Please update after the doctor's appointment.