Wednesday, January 26, 2011

Our little case study

Maggie's 3D scan went well yesterday - she didn't give us any major scares this time. Although ever since we have been home from the hospital she has been vomiting more than usual. It's just the strangest thing that every time she is under anesthetic she does this. Oh well.

Anyway, back to the scan...thankfully, it was normal. Structurally (or skeletally) Maggie is fine. But this just boggles the doctors' minds. Because when looking at her, it just seems like there has got to be something going on either structurally or neurologically. But we have ruled both of those things out. So here we are back to square one , or so it seems.

What I have realized , after speaking with 3 to 4 different surgeons, is that Maggie's torticollis perhaps should  not even be called "torticollis." It took me a while to get this. And why I got so frustrated that these surgeons wouldn't just cut the SLD muscle (that holds her neck up) and be done with it. But the reason they aren't sure about doing this surgery that is often done on children with severe torticollis is that Maggie's "torticollis" doesn't present itself as normal infant torticollis. A baby with real torticollis is tilted in a similar position, but they cannot move out of that position. They are almost stuck there. Maggie is not stuck. She can move left and up and down. Furthermore, on a child with real torticollis the SLD muscle is so tight it's like a guy wire. Maggie's is tight, but not that tight. I can make her head go straight like it should, but she just screams and puts it back in the tilted position.

So that's why the doctors are perplexed. It's why her neurosurgeon brought down several of his colleagues in other fields yesterday and they five minutes just staring at Maggie as she bounced up and down and clapped with the nurses who were sweetly entertaining her. It's why Scottish Rite has decided to present her as a "case" on Monday night at the hospital. All of the doctors there will gather in a conference room, look at all her scans and hear her history. Then I will bring Maggie in and her doctor will manipulate her neck in all different ways. Then they will all talk and see if anyone else has any earth-shattering ideas.

You see, the neurosurgeon and several other surgeons are all leaning toward Botox, which scares me because a friend's child almost died after having it done. And I kind of feel like they don't know what else to do, and Botox isn't permanent so we might as well try it. But the Scottish Rite doctor today is not so sure about Botox (rather he's not sure it will make a difference) and that's why he wants to present her as a case. I almost jumped up and down when he told me we could come on Monday. Who would have thought one could be so excited about their child being poked and prodded and analyzed like a specimen? Let me tell you, this  mother is desperate for the right diagnosis and, more importantly, the right treatment. I am confident that God is getting us's just taking a litlte longer than I would like:)

Saturday, January 22, 2011

New Trick

Well at least we made it 23 days into the new year before our first ER visit. Yes, our Saturday was spent at Childrens Hospital of Dallas.

You see Maggie has not been napping very well in the morning. So she often just rolls around in her crib and plays, and sometimes if I'm lucky she'll fall asleep for 45 minutes or so. I watched her on the monitor off and on and finally she did just that. But when I went to get her up at 10 am, I quickly realized Maggie learned a new trick: She learned how to unsnap her footed pajamas, get both legs out, remove the three pieces of tape holding her tubing down, then to top it all off, managed to pop her button out. I found her asleep in a puddle of formula that was still pumping steadily out of the feeding machine. Lovely.

Of course, I panicked. Justin was hunting an hour and a half away with no cell phone service, and a quick look out the window revealed my neighbors were gone. Judging from the amount of milk in her crib, I knew that the button had probably been out since before she fell asleep. And I knew that the hole in her stomach can close up pretty fast. So I quickly laid her on the floor and had sweet ML hold her sister's hands while I tried unsuccessfully to push the button back in her stomach, all the while Maggie is kicking and screaming and I'm trying my hardest not to pass out in front of my two helpless girls.

But after several forceful pushes (I really didn't want to go to the ER), I realized the hole had already started closing and I was not going to get it in by myself. So after a few choice words (which ML then repeated to my horror- oh I will be so embarrassed if she says something awful at school!!) I packed the girls up and headed to the ER.

The good thing about having a baby with a g-button is that they take you back quickly when you tell them your baby is on 24 feed and she pulled her button out two hours prior. (I didn't mention that she's come a lot closer to starvation than today but anything to get past all the vomiting children in the waiting room, right?). The bad thing about having a child with a g-button is that it is absolutely horrible when no one can get it back in. First, the overly confident ER resident failed. She then got the attending and the head of the ER department and all three took turns jabbing the button back into my child's stomach while she's writhing in pain with no luck. "Mom does she take a pacifier," one of them asked while Maggie is pitching a fit, "maybe it will help calm her." My response, "remember when you all asked about her medical history and I said she has an ORAL AVERSION - so no, she doesn't take a pacifier." (I swear if one more person asks me if my child takes a pacifier while they are in the process of torturing her, I think I might lose it- besides, it's totally insulting; don't you think I would have thought of that myself if she did take one?).

So because the hole had unfortunately closed up a lot, their strategy was to place a tiny urinary catheter through the now tiny opening to prevent it from
closing completely. Then every 30-45 minutes they came and changed the catheter out a slightly larger one. This "stretching of the hole" went on for about 3 hours until they finally got to a catheter that was as wide as her button was. They then held her down and, after pushing for another few minutes on my now hysterical baby, decided that maybe they should give her a sedative to calm her down first because our little Maggie was still putting up such a fight and her screaming contracted her stomach muscles which prevented the button from going all the way in.

So sedative is what they gave her and, five hours after we were admitted, they got the button back in. And after the sedation wore off, they let us go. Whew.

We got her home, bathed her and put her in some zip up (not snap) pajamas. We never thought we could use the zip up kind because there was no place for the tube to come out. But clever Justin cut a tiny hole in the bottom of the pj's and fed the tube right through it. So no more stripping down naked and taking your button out, little baby.

So glad today is over. I'm now
Praying that Maggie did not pick up any viruses today because we have her 3D CT scan Tuesday and I can't stand it if we have to postpone another month. I seriously went through a whole package of baby surface wipes today because Maggie kept throwing her toys off the bed. And I also went through a whole package of hand sanitizing wipes because ML kept touching everything I didn't want her to- the trash can, the toilet seat, the floor, and all the elevator buttons. We are all going to have chapped hands from the gallons of sanitizing gel used in room 6 today...

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Wednesday, January 19, 2011

Happy First (Sort of) Birthday

(taken at Childrens hospital this morning while waiting for yet another surgeon who referred us to yet another doctor...)

Today was Maggie's due date - and what the doctors go by for development. I remember writing nearly a year ago how we would know more about Maggie's future at age 1. What she does in the first year of life is a good indicator of how she will do the rest of her childhood.

So here we are at one (technically). Compared to her older sister, who was running up
stairs at this age, she seems to be way behind. She's just now sitting up and hasn't even started to crawl. So that's a little discouraging but we're pretty confident she'll get there eventually.

In other ways, she is doing great. She's saying 4-5 words and pointing and clapping. The doctors always comment how alert she is and aware of her surroundings. She weighs 18 pounds, 1 ounce- I think that means she's actually on the charts now, albeit at the very bottom. (But we'll take that!) She's getting good at standing and is trying to pull up. She's super sweet and interested in what's going on around her. We are so proud of her.

Now we are praying that we can get her torticollis figured out soon, so she stop being frustrated all of the time and progress even more.

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Wednesday, January 12, 2011

Goals 1 &2

Our fabulous OT, who has made enormous progress with Maggie over the past two months, said in December that her goal with Maggie was to get her to sit up on her own by mid- January. Well, congrats, Mags, you did it!

It's akward-looking, yes. But I tell you, she's a much happier baby when she's sitting up (after all she's one year old and should not be laying around all the time). I still put pillows around her bc she eventually gets tired and her head pulls her over, but I still count it as meeting her goal!

Goal 2? Learning how to roll over and push herself back up. Yes, that's what a 6-7 month old is learning but I'm far over that. For so long I didn't try to encourage these things bc so many people told me she would not/could not sit up until her torticollis was fixed. But I got tired of waiting for that, and also realized that statement wasn't true- in fact, waiting around to work on these things was actualy impairing her overall development. So although she doesn't like to work on tummy time and crawling (pretty much screams the whole time) we make her due her "workouts" throughout the day. I am hoping she will learn to crawl in the coming months, which will hopefully cure these boredom whines we are hearing all day long.

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Thursday, January 6, 2011

Doctor updates

Well, we've had five appointments in three days, a total of 12 hours in waiting rooms, two sitters who canceled last minute, and lots and lots of screaming. I mean, what do these doctors expect making you wait an hour or two in the waiting room before you even get taken back to begin the "so what's Maggie's medical history" routine with the nurse? At every single appointment, by the time we actually saw the physician, I had been through every toy, every blanket, pointed out everything half-way exciting, and she was just done with it all. How in the world a doctor can give us his full attention with a one year screaming and bucking I don't know. I surely couldn't concentrate. I seriously thought about handing her to a receptionist so I could hear the doctor give us his opinions, but thought that might be inappropriate. If someone had come offered to take her off my hands for a few minutes, I gladly would have handed her over though!

Anyways, to cut to the chase - I am very overwhelmed. Pretty much every doctor had a different opinion about her torticollis. It seems that for every two doctors we go to, we get referred to one more. We have an appointmetn with a third surgeon in two weeks to see if he would recommend surgery.

By far, the neurosurgeon was the most helpful one of them all. However, before he would recommend any surgery to cut or stretch her neck muscle, he wants to do a 3D CT scan. They will use the CT scan to make a plastic mold of her spinal cord and skeleton. That way he can look at every bone perfectly, just to be sure that there is not even the slightest problem with her skeletal makeup or spinal cord. I so am glad he wants to be thorough.

She will have to go under anesthesia for the CT scan (which is scheduled for Jan. 25th) and while she is asleep he is going to stretch her neck all different ways to really determine what her range of motion is (it's hard to determine when she's awake because she is now so resistant to people touching her). He's also going to consult with a few other surgeons about Maggie's case before he decides any plan of treatment. He did say that we cannot let her continue on like this forever because it will eventually affect her spinal cord due to the imbalanced pressure on it. He seemed to really want to help her and so I hope that he means it!

Furthermore, he said that the fluid they found around the base of her spine is an indication of a congenital problem unrelated to her neck.  Maggie was screaming uncontrollably the whole time so I didn't really get the whole gist of the problem (thank goodness Justin was able to come), but if it not fixed she will have lifelong issues with her lower extremities. So he wants to do surgery in the next three months on that. He said if she has the surgery she most likely will be fine in the long run. Needless to say, despite his assurance that the surgery is minor compared to some other things he does, I still am very worried about it.

Once again, I am overwhelmed. Praying for guidance and wisdom as we move forward so that we can determine the best path for Maggie. I am feeling so sad, too. Sad at having to drag my child to all of these appointments and no one really can tell us what her future will be like.  Sad because as I am waiting in the neurosurgery waiting room yesterday, my neighbor comes down from the 6th floor and we both cry because her daughter (3 1/2 years old like ML) was diagnosed with leukemia that day. Her daughter's name is Margaret, too, and she is just the sweetest little girl if you can remember her in your prayers tonight. What a reminder of how grateful we need to be for all our children and their health. How life can change so fast.

Tuesday, January 4, 2011

Happy 8th Anniversary to us!

I'm so glad I didn't listen to the numerous people who warmed me against getting married so young. "Wait until your thirties to settle down," they said, "People don't really know what they want out of life when they're so young." Or "Go live somewhere fun for a few years, then come back and settle down." Or my favorite, "Most people who get married young end up divorced." Personally, I kind of thought it was sad that so many people had such a poor view of marriage, or they thought that just because someone is young means they don't really know what they want out of life. 

Being from Arkansas, it's really no big deal to get married at 21 like I did. But when you move to more "sophisticated" places like San Francisco or NYC, where people often wait until their mid to late thirties to settle down, and you tell people that tiny little fact about yourself, they will no doubt look at you like you just stepped off a Martian spaceship and have four googly eyes. They immediately assume that either you are (a) completely uneducated or (b) from the boonies (or both!).

But, really, what is one supposed to do when you meet the love of your life so young?  Say to them, "I love you, but not enough to marry you because I've got some better things to do first."  On the contrary! How blessed I feel that I did meet my match early on! Think of all the adventures we've gotten to experience together. Living in exciting places, traveling to even more fun places; sharing the hardships of starting out in the professional world, and relishing the joys of having children at a young age. I look back at photos from our first year of marriage and we really do look like children playing house - we thought we were so mature! What little did we know then, but how much we have learned together since!

Sure, my life probably would have been a little easier if I hadn't married young. I probably would look a little younger and fresher. (I laughed so hard when Maggie's therapist looked at our wedding photo and said "wow- Justin looks just the same!"). But it's true, we've had our fair share of trials, and it undoubtedly shows. But would I give it all back for a few more years of "freedom"? Absolutely not!  
So I guess that's why I kind of roll my eyes when I hear celebrities tell us that they didn't "know" or "find" themselves until they were in their thirties or forties. As if to say, all of you in your twenties don't know squat.  I guess I won't know until I'm actually in my thirties (in two months!). But I kind of feel like I know myself right now: I am a child of God, first and foremost. A wife. A mother. A caretaker. A pseudo -nurse. A pseudo-therapist. A friend. A sister. A daughter. A woman with purpose. With hope. With dignity. With gratitude. 
So eight years after our wedding, I thank my dear husband for marrying me so young, for taking care of me when I didn't know how to take care of myself, for leading our family on many adventures, some expected, but most unexpected - all of which have helped shape the person I am today. My life is certainly not what I thought it would be, but I gladly claim it because I have you to share it all with...

"Don't let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity." 1 Timothy 4:12

Sunday, January 2, 2011

New Year, New Attitude

A year ago Maggie was a few days from coming home from the NICU. She was taking every feed by mouth and doing great. We were so excited that life was going to start getting easier...what the heck happened?!!

One year later, Maggie is not taking anything by mouth. She is fed continuously 24 hours a day by a tube. She vomits half of what she eats and can't gain weight because of it. Everything is so interconnected : she's not ever going to take anything by mouth if she's not hungry; and she's not going to be hungry if she's fed continuously all day long; and she's not going to stop being fed 24 hours/day until her reflux gets under control and starts gaining weight; but she's never going to gain weight until she stops spitting up all of the time, and the only method for helping that is feeding her 24/hours a day. Really it's maddening.

Who would have thought that reflux could be so life-altering? I mean, ML had "reflux," but this is a whole different ballgame. I mean, it is so hard to sleep at night because I either changing her wet clothes and sheets or listening to her cough/throw up on the baby monitoring, wondering if I should go change her or should 'just check to make sure she's not choking to death on her own stomach contents."

It's awful, really. And I have been so focused on the torticollis that I have kind of put the feeding issues on the back burner, which is really bad. I think about how hard I worked to prevent her from being a baby that is dependent on their feeding tube. The hours I spent feeding her and working were for nothing, though. To think that just four months ago she was taking about 60% of her feeds through her bottle and we were just getting the g-tube to "bridge the gap."  And it has been a disaster ever since because she can't keep anything down, and is still struggling to put on an ounce a week. Sometimes I really do just want to bang my head against the wall...

Having said all of that (sorry it feels good to vent), I am praying that my attitude will be a little softer and sweeter this year about all of Maggie's problems. That I can be joyful and thankful in all circumstances, because I know it is Gods will for me. That I can remember how far Maggie has come in a year, instead of the other way around. For example, she is now pointing at everything. and saying things like mama and dada. She can sit and stand with assistance. She is happy, despite her obvious discomfort. And he is breathing and her lungs are healthy. And, most importantly, she is here and alive, praise the Lord.

This week is a huge week for Maggie. We are seeing a neurologist, neurosurgeon, and a second cranial facial plastic surgeon. We are also checking in with the pulmonologist and dietician, too. I am praying that we will get some concrete answers about her torticollis that will help us make the best decision about her treatment plan.