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 :)

Throwing Out the Calendar

Some people were born unorganized; I, however, was not! It continues to amaze me how people can be spontanous or live without a planner or calendar - I'd be lost without my color-coded planner and daily to-do-lists. Needless to say it sends me in another world when people mess with my "plan". If this baby teaches me at least one thing it will simply be that I am no longer in charge of or should plan on anything.

Today's dr. appt. went well (hidden meaning for yup you gained some more weight), and the baby's heartbeat was around 150. So when I asked if we were all set with the C-Section date I was a bit surprised to hear that our nuerosurgeon was going to be gone on vacation during that time. With red flags going off in my head, they quickly told me that another surgeon would be doing the back procedure and possible shunt surgery if needed. My second surprise was to find out the back closure will not be done until the day after the surgery (still have to find out why - new consult already scheduled). 3rd surprise - no operation rooms are available on the day that they want to do the delivery - they called us later to tell us they bumped someone else out & made a spot. At this point I just gave up! So as of now, (no longer in ink - maybe penciled in) the baby is scheduled to be delivered on Aug. 17th, and the back surgery is scheduled for the 18th - unless something (more than likely) comes up.

On to better news! Robby FINALLY received a consult appointment with the sleep clinic. It still takes him about 2 hours to go to sleep & he wakes up at least 3-4 times a night. While his talking in his sleep can be funny at times, his sleep terrors aren't. We've been praying for an appointment since April, and we finally have one scheduled for late July. A sleep study won't be scheduled until Nov. (first available at the earliest), but I'm positive that at least we are moving in the right direction.

Other good news - our baby has been entered into a pilot program with Mary Free Bed where they meet the parents of kids w/ SB before the child is born. Hopefully this will get us off to a good start & we can begin scheduling therapy quickly after the baby is born.

Today I went to visit another baby w/ SB in NICU! Lewis is so cute, and we send our thoughts and prayers for him & his family for a speedy recovery. It's wierd to think that we will be there in about 2 months or less. The other families we have meet w/ children w/ SB have been really helpful - thanks so much!

So for now I better hang onto the planner & just get used to the changes and cancelations that are headed our way. If I truly did throw it out, I would forget everything!

A Bang-up Day

Friday was off to a great start when some idiot hit me by Target on Center Dr. off of Alpine, and then he actually took off (not like Alpine wasn't busy and a ton of other people saw it happen)! To make matters worse I was supposed to be at MFM in twenty minutes. Clearly I have no control over anything anymore!

The baby decided to once again show us who was in charge as it sat breech AGAIN! So, no clear pictures of the baby's opening which I was hoping for. The baby is gaining weight (3 lbs. & 8 oz) and is at the 57%. Right now it is right on schedule with the due date of Aug. 27. The doctor said the baby's hydrocephalus looks good. A sac has also developed on the baby's back which is normal for babies with SB.

We sat through our first non-stress test - good thing it only monitors the baby's stress not mom's, and he/she passed with flying colors. It was moving all over the place.

On to MMPC - here the doctor said the baby's heartbeat was good (about 140). I also received no sympathy as the doctor and Tom hit it off by making fun of me :) Got to love it - that's okay I got my jabs in as well. They are trying to schedule our C-section for 39 weeks, but we have to wait and see if the neurosurgeon & plastic surgeon are available on that date.

Later I ended up at the police department to file an accident report from earlier in the day. I was pleased to find out that the guy actually called in to report the accident. Now we just have to wait for the insurance company to go after him for the deductible.

All in all, not a lot of new news, but that's okay. Baby's doing well and we are off for some much needed vacation.

A Whirlwind of News

April was a whirlwind of dates and news for us. In between Tom's frequent trips to MN for work and my track meets and practices, we took Robby with us to see the ultrasound of the new baby! It was one week later that we received news that the baby's pictures showed some areas of concern.

The second ultrasound and amnio test proved positive that the baby indeed had spina bifida - an opening in the baby's back which did not form over the spine. The opening is created within the first month of the baby developing. An average person's body is formed similarly to a zipper over the spine. For some reason, our baby's back did not close entirely. We left Maternal Fetal Medicine with heavy hearts but reassurance that everything would be okay.

May brought us more appointments with MFM, a nuerologist, and neo-natal doctors along with my monthly checks on the baby at MMPC. Once again our baby proved to be a true combination of Mathews and McWilliams as he/she stubbornly refused to let us see its back - it was sitting breech with its back against the wall. An hour and a half later (I refused to leave until they would tell us where the opening was) and two doctors later, they think the opening is at L3. L stands for lumbar (the lower poriton of the back) and 3 is the third vertebra down. Typically this area has nerves that connect to the baby's lower legs, knees, ankles, feet, bladdar, and bowel. Dr. Foody, the nuerologist, explained that we truly will not know the capabilities or limitations the baby will have until after it is delivered. He has seen cases of total limitation to using a wheelchair to some children running and playing soccer; we are hoping for the 2nd.

As of now, we do know that the baby will be delivered by C-section (as was Robby). Shortly after arriving it will be taken to NICU for stabiliation and prepped for surgery. The closure of the back is supposed to be done w/in 24 hours. One side affect that is very common is for the baby's head to swell with fluid "water" on the brain. If this occurs, the baby will need to have a shunt surgery. While we hope this isn't the case, only time will tell.

June brought on a mixture of events as well. I was introduced to several other parents of children with spina bifida (which have been wonderful in helping to answer questions about everyday life w/ kids w/ SB), exams, leaving school knowing that everything will be different from now on, etc.

Yes, life has been a whirlwind of events during the last several months. Having always been known for being prepared and organized, God has reassured us that maybe it's time for us to slow down a bit and enjoy each day as it happens. Please keep our family in your prayers.