Tuesday, August 31, 2010

"That feeling"

I've had "that feeling" in my stomach all day. That nervous, butterfly-ridden feeling I got when I was younger when something big was about to occur - like starting a new school or waking up at four am to get on a bus for my first overnight class trip. Or the night before I had to leave my grandparents after two weeks with them at Christmas Break, knowing I wouldn't see them for several months. When my sister and I were anxious about something as children - and it often happened when it got dark outside - we would tell my mom we had "that feeling" and she knew exactly what that meant. And she knew exactly how to make us feel better.

I tried to hide the fact that I still got "that feeling" as I got older, but it still came with the big things in life. I definitely felt like throwing up the morning my parents drove away from the Vandy parking lot, leaving me at college for the first time. I had it laying in the hospital bed in the hours leading up to our first daughter's birth. And I had it just yesterday as I stared for hours at the huge pile of beautiful clothes on my bed. They were not my clothes but my friend Anne's whose mother sweetly gave them to me because we are the same size. But I couldn't help feeling like I just wanted to throw up as I carefully put them away in my closet. This is just not right, is what I kept thinking. Pit in my stomach - check....

The other day I asked Justin if he got that feeling growing up. "Nope," he said. I wonder if it's a girl thing, or just a me thing. I don't know, but I definitely feel it right now as I think about them wheeling my little baby into the operating room tomorrow morning. Although I keep telling everyone that this is routine and everything should go fine, who am I kidding? This is my child, and no matter how routine or uncomplicated the surgery is, it is still surgery and they are still cutting my daughter's perfectly formed stomach and sticking a plastic button in there. I am so thankful they can do this, but it still is hard to give them permission to proceed...

I have been praying over Maggie all day, asking God to protect her and keep her strong and healthy through the surgery. As it gets dark tonight and "that feeling" starts to take hold, I will remember this verse:

"Arise, cry out in the night, as the watches of the night begin; pour out your heart like water in the presence of the Lord. Lift up your hands to him for the lives of your children..." Lamentations 2:19

Here are our specific prayer requests if you think about her at 8:15 in the morning:

-Because she has Chronic Lung Disease she is at increased risk for asthma attacks or breathing complications while she is under anesthesia. Pray that she has neither, and that her body will remain healthy and strong through the surgery
-For the surgeon, Dr. Murphy, to do a perfect job
-for a quick healing around the "button" and a quick overall recovery.

Thank you to all for keeping up with us - it means so much!

Sunday, August 29, 2010


We feel so blessed to have spent two weeks at the beach for some much needed family time before Maggie's surgery this coming Wednesday. It was so much fun for us all to be together without any of our normal stress. Maggie's former NICU nurse came to help us out for part of the trip and the girls just adore her (and so do we!). Oil-free beaches, crystal clear water, and 85 degrees - it couldn't have been more perfect!

Wednesday, August 18, 2010

Helmet time!

It took a few days for Maggie to get used to the helmut (or "band" as they call it). Besides smelling horrendous (poor thing sweats profusely in the thing) it's really not that bad. She has to wear it 23 hours a day, the 24th hour we can give her a bath and wash the inside of the helmut out.

I've had a few curious people brave enough to ask me what's up with the helmut - so I guess I'll explain it here, too. Some parts of her head are flat from a combination of not having fluid and being pressed up against me, and also being positioned the same way in the NICU everyday. The reason it is open on the right side of her head is to let that "flat" part fill in while keeping the left side put, since that part bulges a little. It's the same thing in the back of her head. We will go in every week or two and they'll shave out the inside of the helmut to keep up with her growth. Hopefully she'll only have to wear it 10-12 weeks, maybe more, depending on how diligent we are at keeping it on.

I bought some stickers to decorate it but I'm not as creative as some other moms who paint, decoupage, or stencil stuff onto it. We'll see...she already looks so cute in it - but I definitely need to jazz it up a bit!

The only thing difficult is getting her clothes on and off over her head. Last night was not my best mothering moment (you could say it was downright cruel) because it was late- I was exhausted and she was fussy - and I was trying to change her out of a onesie she had spit up on. It was dark in the room and I tried to do it too quickly. I thought the onesie was stuck on her helmut or something because I couldn't slip it off very easily. I kept tugging, harder and harder, thinking it just had a small neck opening. Finally it pulled off with such a force that it slapped me in the face as I heard a terrible ripping sound followed by uncontrollable shrieking. Um, yes, the reason she doesn't have a ng tube in this picture is because her mother ripped it out of her while impatiently removing her onesie. (I guess I didnt't consider the tube could be what was caught- duh.)

I stood still in shock as the tube dangled from my hand last night, too afraid to turn the light on to see what damage I had caused. When I did, I realized the tearing sound was the tape I ripped off her cheek along with the tube, which is completely raw right now. I felt so bad and was so worried all night long that I had hurt her or her stomach. But she is fine ( thank you God for protecting her from her incompetent mother). But I just thought we'd leave the tube out for today just to give the poor baby a break...

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Wednesday, August 11, 2010

Torture all around...

In addition to our usual six therapy appointments and one weight check this week, we also have an appointment tomorrow to get her helmet fitted, a doctor's appointment for ML on Friday, and two pre-op surgery appointments for Maggie, whose surgery is thankfully now scheduled for September 1st.

Yesterday was her appointment with the radiologist to do an upper GI study to make sure as the surgeon said, "her stomach is in the correct place when I cut her open". When I made the appointment the scheduler told me not to feed her after 5 am the day of the procedure. Note to self: make a note to self to remind self of this important matter,otherwise you will be stuck watching back-to-back episodes of Hannah Montana in the radiology waiting room surrounded by screaming children (including your own)for two hours until enough time has passed to do the procedure.

Also, why didn't anyone tell me that an "Upper GI Study" is so awful that it would be an effective torture device against our terrorist enemies? At first I thought it was so cute when they straightened her legs and strapped them down on the gurney. She was cooing and smiling  - she looked so sweet and little that I took a picture of her:

But then the stretched her arms above her head, strapped them down and levitated her up in the air and started jamming a tube down her nose and into her esophagus and stomach. I could see on the screen the tube moving all around her upper gi organs - the whole time Maggie was gagging and screaming. But it gets worse - the table she was on rotates (see that blue circle) so the whole time the radiologist is flipping her all around trying to get different angles. I told Justin she reminded me of a rotisserie chicken on one of those rotating ovens you see at Costco. And it didn't last a few minutes. The  horrific screaming lasted over 30 minutes as I stood watching helplessly in the corner.

And today we were back at Children's Hospital for another pre-op appointment. The anesthesiologists have to do a physical on her to make sure she is okay for surgery.  You would think the child has had more than enough tests to give them complete medical information, but no, I had to sit there for 30 minutes and go through her medical history from bed rest on (which I have already told to about 40 people at the hospital but oh well).

So I have no idea what a physical on a nine month old entails (they didn't, as Justin suggested, strap a sweatband on her and make her run on a treadmill) because they took her temperature and I found out it was 101.3.  I had no idea! Of course the guilt kicked in, and I started babbling about how she didn't have any other symptoms and maybe it was the car seat making her hot. After all, it is 103 degrees in Dallas today and I am dragging this poor baby all over the place. I asked them to try another thermometer beause those temporal scanners are so inaccurate. But the hospital office didn't even have an old-fashioned thermometer so we tried three different temporal scanners. Two said 99.9 and one said 101.3. The nurses and NP debated for 30 minutes whether or not they should do the physical or reschedule.(If it turns out she has an infection the physical is rendered obsolete and we'd have to do it again anyway). Finally they said they would just go ahead and do the physical - but at that point I only had 15 minutes before I had to leave to pick ML up at camp, so we had to reschedule anyway. Bummer. But I did ask the Nurse Practitioner to at least check her ears to make sure she doesn't have an ear infection (which she didn't).

I also asked her to look at this red spot that has appeared between her eyes on the bridge of her nose last week. At first I thought she scratched herself or maybe the tape from the ng tube irritated her nose. But it hasn't gone away. So I started getting paranoid it was another hemangioma. She has one on her right cheek that appeared a few weeks after birth. You've probably seen a baby with one and wondered what it was and were scared to keep looking at the large growth on the child's skin because you were worried you would offend the mother (trust me, they are used to it, you are not going to offend them and you don't have to pretend it's not there either). Anyway, let me educate on what a hemangioma is because I had never heard of them before Maggie: it is not a birthmark, but a vascular thing, sort of like a blood vessel on the outside of the skin. Girls, preemies, children on oxygen, are all at higher risk for them. Someone told me that trauma at birth can also cause them. Check, check, and more checks for us then!

Thankfully Maggie's on her cheek is just a "strawberry hemangioma," meaning it will stay small for a year or two and then disappear completely. Other kinds, however, can continue to grow and can be as large as a baseball or can grow all over a child's skin. We went to a pediatric dermatologist several times to make sure it was the smaller kind and she watched and measured it and determined that it's not going to get any bigger. So when I saw this new thing on her nose, I started freaking out that it's another one (I mean this week has been tough enough - I don't have the energy to focus on one more thing). And no matter how superficial it is, I just don't want her to have this huge growth on her face. I can deal with a little thing that will go away eventually, but I just can't deal with a huge growth that covers her face. (I know, I know, I am overreacting but it's just the state I am in right now!) Anyways, the NP told us to go back to the pediatric dermatologist again because if it is something other than the strawberry hemangioma, they may have to give her something to treat it - which basically means add multiple more appointments to our crazy schedule. Ugh!

So I left that disaster of an appointment and because I left my stroller in the driveway I had to run with the car seat carrier banging against my already bruised thighs. I raced through the lobby and across the steaming parking lot, sped to school, and found her Mary Lawrence all alone with her teacher waiting for her mommy. No big deal, you say. But it is to me. I am so worried she feels like Maggie is more important than her. Besides, something is definitely going on with Mary Lawrence this week because she has completely reverted back to "holding" you-know-what. (If you don't know what, look back at my older posts!) And that stresses me out beyond belief because I have had to give her extra Miralax so she can't "hold" it, which makes her leak you-know-what, which makes her technically not potty trained, which makes the whole starting preschool thing in a few weeks a little stressful. And she no doubt senses my stress and so, yes, it's a vicious cycle.

Needless to say, it is only Wednesday and I already want to take an emergency chute out of this week! Sometimes I think it'd be so much easier to escape under the covers of a deep depression than to deal head on with what I deal with on a daily basis. But my children's well-being and health are infinitely more important than my own self-pity. Like other moms, I have no choice but to keep marching on...but hopefully it will be with a more joyful heart in the future:)

Update: Maggie does not have a temperature on any of my thermometers Could it be that the combination of extreme heat and the car seat carrier raised her temperature? If so that is really scary...

Sunday, August 8, 2010

recent pics

Our little patriot at the 4th of July of parade.
At first, she hated the sleepy wrap (I think cause she was so small) but now she loves it!It is a great replacement if you don't want to use a sling anymore. And can be worn many different snuggly ways,
Is this a problem???

First trip to the movies, Toy Story 2 - and she lasted the whole time. Maggie, on the other hand, last 10 minutes.

The OT made this neck mold that straps on her shoulder and under her arm. It helps her strengthen the left side of her neck and body so she can hold her head up better.She won't be able to sit up by herself until we get this neck thing worked out!
Wearing my dress that I had when I was her age...

Getting fitted for her helmet - pretty neat how they do it with a 360 degree camera instead of a clay mold like they used to!

Our little cap burglar! I swiped one of these caps they used to keep her hair down while they took  the picutre because I just had to show Justin how hilarious she looked. I know, I know, it's cruel of me to do that to her, but I swear she did not even cry when we put it on. She's so used to annoying these poking and prodding her, this is nothing. (By the way, that's Justin's wallet on her lap to give people a sense of how big - or small!- she is.)

ML had "Zoo camp" this week and loved it...

Sweet sisters....

Monday, August 2, 2010

PPROM - one year ago...

A little over a year ago in mid-July life was pretty good. I was 13 weeks pregnant and confident that I wouldn't miscarry again. I was feeling like I could get out be more confident about picking my two year old up and taking walks and other stuff that you only become paranoid about after you experience miscarriage. I had playgroup at my house that Friday before my water "broke" and I remember a friend saying how the risks of anything happening after 13 weeks was so slim. I knew she was right because I, too, had read all those statistics. That weekend we had friends come stay with us and we had a great time - went to the pool, had a cookout, went maternity shopping - I was so happy to even be showing a little bit.

That Sunday I woke up not feeling great. A little off somehow, but I couldn't really put my finger on it. But we went to church anyway and saw many friends who congratulated us on our pregnancy (after all, we had just started telling people). I came home and we crazily contemplated taking Mary Lawrence to "Dora, Live" that night, but I told Justin that I was feeling really tired. So he decided to go to the office for a few hours that afternoon and I slept for several hours while Mary Lawrence napped. I remember feeling so fatigued I could barely hold my eyes open. But I just told myself we had been a little too busy lately and I just needed to rest.

Around 5 o'clock I decided to take Mary Lawrence on a walk down the street. It was hot and I don't know why I thought that was a good idea. She pushed her baby stroller and I walked behind her. I has been feeling nauseous all week (good pregnancy sign - check!) and started feeling that way again. The next thing I knew I was bent over, vomiting all over the sidewalk. Not a pretty sight! And even though I thought it was strange that I just now started feeling nauseous at week 13, I reminded myself that nausea was a good sign that everything was "working correctly.' We were about a block from home when  ML decided she didn't want to walk anymore, and started screaming and crying for me to hold her. I didn't want to, but I had no choice as she wouldn't get off the sidewalk she was laying on. So I picked her and the toy stroller up and walked the length of six or seven houses until, thankfully, Justin drove up and we all got in his car.

I went to sleep early that night but woke up about 2 am to go to the bathroom and that's when I saw some watery blood come out. I panicked and called the on-call doctor who said to come in the morning. Justin and I were awake all night, praying and trying not to be scared. We even called around to Walmart and other 24 hour stores seeing if anyone had a heartbeat monitor - anything to give us some comfort. I remember strangely thinking my stomach didn't look as round as the day before, but didn't give it too much thought after that. We had been down this road before and couldn't think of going through it again.

Well, most of you know the story from this point. I went to my OB who told me about the low fluid and advised me to take it easy for a week and come back and see if perhaps that day my fluid was just low, or if, as feared, my sac had ruptured and the baby's days were numbered. I remember driving home from this appointment feeling shocked and confused.  At this point I really didn't understand the severity of the issue. I remember my sister found a website on PROM and I told her I didn't think that's what I had. (Can we say 'denial'?) And I just couldn't imagine anything could be seriously wrong when the sonogram showed a healthy, kicking baby with a strong heartbeat...

There's more to the story that I will continue in another post, but writing all of this reminds me how much I second-guessed myself in the weeks following this appointment. When I started showing strange signs that weekend should I have slowed down? Why did I keep pushing myself? Did I do too much activity? Should I not have picked up ML? Why did y amniotic sac tear in the first place? I was taking all my vitamins and didn't have any preconditions. Why could a perfectly normal healthy pregnancy with my first followed by a miscarriage and then this?

If I had tons of money I no doubt would be donating to research all of these things. I sometimes wonder if our "strong woman" society has replaced the long-held view that pregnant women are "delicate." We read in old novels about how pregnant women literally stayed in bed all of the time and didn't do any heavy lifting. Now I think that's a little drastic. After all God created our bodies strong and able to take care of other children while we're pregnant. But I have asked myself: are as determined young women pushing ourselves too much? I mean, what are we trying to prove to ourselves? I know some women can do STEP class until their 39th week or run ten miles while pregnant with no problems, but I'm obviously not one of them. And I don't think I am alone.

It's funny because we read so much stuff in books and magazines about what no to do when pregnant, yet when something actually bad happens, the doctors response is "it's nothing you did; you couldn't have prevented this from happening." But is that really true? I remember when I asked the specialist what caused a sac to rupture, his response was, "the only thing that could have purposely cause this was if you were a crack addict." Hmm. Obviously that was not the case, and yet it still happened. And still no answers because, as many doctors have told me, no researcher is going to touch a group of pregnant women. It's too risky. Honestly, I have learned more about PPROM from the listserv I am on (made up of women from around the world who have experienced PPROM) than from all the doctors I have been to.

So we are left with a lot of assumptions and theories but no hard facts about what is causing a lot of all these pregnancy complications. My mom and her friends have made several comments about how they don't remember their friends having a lot of pregnancy -related problems like we see today. Perhaps, though, that's because medicine has allowed some pregnancies to continue that 30 years ago would never have lasted. But who really knows.

I just have a lot of questions about it. Personally, I feel like doctors are too casual about what they allow women to do. Maybe I wouldn't feel this way if I hadn't seen what I saw been on the antepartum floor and heard all the complications women experienced. It's funny, the nurses who didn't have any children on that floor were so paranoid about getting pregnant because they saw so many horrors. (I tried to remind my new nurse friends that most pregnancies are perfectly normal with no problems.) Still, there are many questions left unanswered in my mind and I guarantee you that if I ever get pregnant again, I will take it much more seriously, and not as something that will just "happen." And I will surely not try to prove to myself that I am Superwoman. I know I can't be paranoid. But this whole experience has reminded me how precious it is to get pregnant and have a healthy newborn baby in  your arms. Not something to ever take for granted....