Mommy's Little Mummy

Robby and I had a sleep over at Spectrum on Wednesday night, and what a night it was! In order to fully appreciate this story you have to remember that Robby doesn't sit still for more than 2 minutes at a time (including in his sleep). Also remember that he rarely falls asleep until about 10:30 - 11:00pm and thrashes around all night, waking several times.

After arriving at the hospital, the nurse (bless her heart) hooked Robby up to at least 25 different monitor cables, and then wrapped his head w/ bandages to prevent him from taking them out. Seriously, he looked awful & words won't do the image justice. He became my little mummy. I took a couple pictures of him on my phone, but I can't figure out how to load them onto the computer yet. Finishing around 8:00, she says, "Okay now it's time to go to sleep." Sleep??? At 8, are you serious? To make the situation better, he was tied down to cables w/ about a foot of "leash" room, or so I called it - meaning he couldn't get up and play or run around. Hmm? Needless to say I had to get creative in entertaining him for the next 2 & 1/2 hours until he finally gave in and fell asleep. The hardest part for him was the nose tubes; it made it difficult for him to have his passy.

The rest of the night went TERRIBLE - which was a good thing. At least the doctors can now see that he doesn't sleep, trashes around all night (he literally pulled off the cables at least 4 times in his sleep - making the nurse come back in to reconnect them), woke up screaming, and made mom sleep at the foot of the twin size bed once again. I'd say it was a successful sleep study that I really don't want to do again for a long time. Real results won't be done for 5-6 weeks.

The doctors did call later in the day to say that he has an iron deficiency that they think might be adding to his restless leg symptoms. I'm hoping for a quick fix here w/ a supplement - keep your fingers crossed.

Onto the other child: Friday's visits both went well. The NST came back great - super active child that isn't under any stress - got to be like his father. The MMPC appointment was routine as well.

Tonight we hope to make it to the Berlin Fair (Robby's sweet reward for the sleep clinic). It ought to be a pretty picture - me wobbling along in hot, humid, 90 degree weather, but I know both him and his dad will love it! John Deere tractors and stinky animals here we come!

Pokes and Monitors

Robby's sleep appointment led to new discoveries. First, the doctor found a mild heart murmur. Apparently there are two types of murmurs: innocent & non-innocent. Innocent murmurs are caused by blood pumping through the heart at a quick rate of speed causing something in the chamber to rattle. These murmurs usually appear when the child has a fever or is sick. The non-innocent murmurs can be caused by numerous things including a hole in the heart, weak valve, etc. Obviously these are worse. Robby's is a mild murmur meaning in the middle. It is in the location of an innocent murmur, but it is louder than normal. Apparently he has had it all his life (makes me wonder why the pediatrician hasn't located yet when it took this doctor less than a minute). At this point he is not worried about it & we just have to be aware of it. Most kids outgrow murmurs by the time they are 6 or 7.

The doctor is also checking on his larger tonsils (sp?) as a possible side effect for allergies. This could be one reason for him having trouble sleeping. We also had a blood work up done (poor kid has veins like me and his grandpa - they don't exist - they had to check both arms & try a couple of times before they could get a good poke). The best line for the day, "I'm crying mama. I'm crying. It's pokey!" He did walk away w/ a Bob the Builder Sticker and camo bandaid though. The doctor is checking for restless leg syndrome due to his thrashing around at night.

Now to my proud moment - sometimes it pays off to manipulate a situation. I totally played the highrisk pregnancy card to get him into a sleep study, but I don't care. The earliest appointment they had was for January! Can you believe that!!! I almost hit the floor when they told me, so I played the sympathy card and took a cancelation spot for tonight! Yup, Robby and I will be hooked up to multiple cords and monitors tonight - while this will be tricky to not have him pull them off at least we will get results (apparently in 5-6 weeks).

My Mary Free Bed appointment went well. I met w/ Dr. Rush who seems straight forward but nice. He went through what we can expect from the clinic and average case senerios for babies w/ L-3 openings. While statistics are not promising for walking (in an efficient pace / mode of transportation) or for bladder/bowel control, we remain optimistic and will do whatever is necessary for the fullest potential of our child. Dr. Rush said to expect many doctor appointments in the upcoming year; thank God for an understanding work place that is going to let me take days off (unpaid, but won't hold it against me) to be there. He also said that the long wait to get into Mary Free Bed is due to the lack of pediatrician specialists that they have. This was a bit surprising when you think of our Michigan Street Medical Mile, but apparently they are overbooked to an insane number (one doctor doing the work of 4). The best part of the meeting was scheduling the baby's evaluation appointments for the clinic which are hard to get into to, so as long as we don't have to stay too long at NICU, the baby will be seen in September by a team of specialists. Now I just have weekly NST & MMPC appointments until the baby comes.

On to construction news! Robby's room had to take a back seat while Tom demolished the downstairs bathroom shower (imagine porclein tile shattering everywhere). We also had new doors put in (I made sure dead-bolts were on all of them in hopes of keeping Robby in since he knows how to open all doors even w/ safety locks/handles), and the painter is working on the staining/painting now. My house feels like a disaster zone, but I guess I have to let that go. Robby can't wait to see the tractors & animals at the Berlin fair, so that should be our high point of the week and his reward for the sleep study!

4 Weeks & 3 Days to Go

4 weeks & 3 days to go... unless the baby decides to come early! I've had contractions for the last 2 weeks, but none of the doctors seem to think this is that big of a deal. So, for now we just keep plugging away at projects. Robby's room is making progress; all we need is primer, paint, carpet, & assembly and we'll be all set. Meanwhile, the baby's room is packed full of everything else while we work on the spare bedroom. I wish I could do more; I'm not used to sitting back and getting winded by simply vacumming - I'll just blame it on the heat for now. Nothing like waiting to the last minute to do jobs you don't like huh?

This week I had 3 different doctors appointments. I wish I felt reassured or uplifted by them, but they basically made me depressed. I can't wait until the baby is actually here.

We met the other nuerosurgeron who is supposed to close the baby's back (first one is supposed to be on vacation when the baby is born). While he has a bit more persoanality than the first, he is that much more cocky (and we all know how well that goes over w/ me). Great - at least they are good at what they do though, and that is all that matters.

The other 2 checkups were routine, and so was our baby. Yup, it was still sitting BREECH - AGAIN! Ugh, talk about stubborn child (wouldn't know where it gets that from). While the postion of the child is fine, it simply means the doctors can't get good pictures of the baby's opening. They did confirm that our baby is in the 50 percentile of weight at 5 lbs. & 5 oz, and the ventricles in the baby's head have not increased (measuring about 10 - at the high side of normal). They were happy with the cerebellum (sp?) as well especially since the size of the opening is so large. The NST (non-stress test) came back great indicating that we indeed have a very active child - which could explain why I don't sleep much at night when combined w/ Robby's lack of sleep as well.

So while the results were consistent with the last ones, I guess the reality of having a child w/ SB is finally sitting in. Next week I have Robby's sleep consult, and I am so excited!! Maybe they will be able to find a magical cure that will help him sleep through the night. I will also be meeting w/ Mary Free Bed in hopes of speeding up the baby's wait time to get into the clinic for therapy once it is born.

Robby - My Outdoor Boy!

He's a boy with simple pleasures: tools & tractors! Give this boy a pile of sand and he will be content for ages - until you try and take him inside that is. Thank goodness the weather has been cooperative! It definitely has been a great year for enjoying the outside. Can't wait to see him at harvest time :)