Steps Back

So all preemie moms know the saying, "Two steps forward, one step back." But goodness, this week it seems Maggie has taken four steps back, maybe more. I know that sounds so 'Negative Nancy' because she is crawling a few feet (yeah!), but with the two major health issues in her life she has definitely had some tough days recently.

You see, ten days ago things were going great. Maggie was on bolus feelings during the day (3-4 separate "meals" through the tube instead of a continuous feed).  And she actually opened her mouth for a bite of baby food, which she hasn't done since last summer cause she hasn't been interested or hungry, or both!  But during the past week it has become obvious that the Botox in her stomach has worn off completely. She is vomiting seven to eight times a day (projectile, mind you), which has made it impossible to get in her goal of 945 ml of Pediasure a day. We maybe can get 800 in, but subtract about 400 for all that vomitting. Translation: if the vomitting doesn't get better, she will start losing weight. Furthermore, she is not interested in food anymore so all that progress we made in the past month has been erased.

To top it off, we visited the "Botox" doctor last week for a follow up and she was just stumped that Maggie's neck doesn't look any better. I was so looking forward to our visit, hoping that she had another trick up her sleeve that I hadn't thought of. With her finger on her chin, she just stared at Maggie like a specimen. (I am so used to this look; I hate this look!) And she had nothing really new to offer except another round of Botox. That's fine, we'll try it again. But the problem is not the tight side now, but the opposite side that refuses to hold her head up. Cue the deep discouragement.

To top it all off, we went to the GI doctor (sorry for all the boring doctor reports) to finally put the new button in and he looked at her and said, "Her neck looks worse!" Are you serious? It's not that I thought it was getting better, but worse?! Seriously, it took everything in me not to burst out crying. And I told him that, too!

Her occupational therapist thinks that Maggie's left neck muscle is completely paralyzed due to nerve damage or just from not being used at all. We watch her and she never uses that left SCM muscle to try and lift her head now - it's like her brain is doesn't even know it's there.

So...we are going to try the last few things we know to do and all the things we didn't want to do because it's painful. First, we are going electronic stimulation to zap the weak muscle to see if we can "jump start" it. No one thinks this treatment really works, but her therapist and I are desperate and we are going to start tomorrow. Later the neurologist can try more painful nerve tests. Even though her opthamologist ruled out eye problems as a cause, I getting a second opinion on that this week.

After that, I just don't know what we are going to do.  I am scared, discouraged, angry, frustrated, and just plain exhausted from dealing with it. Combined with the return of the vomiting, I think Justin is starting to worry about my sanity!

How hard it is for me as a perfectionist to look at Maggie's pictures from Easter one year ago and compare them with this year and realize that her neck is in the exact same angle. What was all this torture for? I wonder. This is so awful, but honestly it is so hard for me to look at pictures of Maggie because it reminds me that I have failed in this regard. "What could I have done differently?" I keep asking myself.. Those questions are never really useful, but they still taunt me at four in the morning after I get up to clean up her vomit, wipe her face, and adjust her brace. 

"Her neck won't be like that forever," people say. "It will get better one day." I believe that, and I appreciate that positive outlook, I really do. But how is it going to get better? While I am praying fervently that she will just start holding her head up one day, most likely it is going to be a lot of hard work to get there. It is going to be me trekking Maggie to dozens of doctors and therapists, spending hours researching treatments, and countless phone calls fighting insurance claims. It is going to be me torturing her with stretching five times a day and forcing her into an uncomfortable brace 16 hours a day. It is a daunting task before me, and that's why I am praying for just a small sign that her muscles are working properly or will work properly. If I could  just see her start trying to use that muscle I would be re-energized and full of hope again.

I know it seems so silly to pray for someone's neck; it does seem a little shallow or cosmetic especially when I consider how much worse it could have been with Maggie. But I truly believe that Maggie is in pain from her neck like that all of the time. I don't buy the theory that she's used to it. Try holding your neck like that for five minutes and you will have a new appreciation for my baby's endurance! Furthermore, I truly believe we are stressing her out and hurting her with all the stretching and strengthening. I feel I just can't torture her anymore (especially after holding her down while they changed out her button today and she started bleeding everywhere!).  It's just not natural as a mother to constantly be doing things that makes your baby scream, writhe, and gag.

I just pray for some encouragement or just tiny bit of improvement in Maggie soon. I just need something to keep going...

Look Who's Crawling...

I have to admit, there were times last year when I really couldn't imagine Maggie crawling or walking. But alas, here she is starting to crawl...praise God for what He is doing in her development!

Hope for Today

Sorry for the bad attitude yesterday! I'm over it now. I think it just discouraging to work so hard to help my child's issue and it still looks so bad that people keep pointing it out to me. It's as if everything we have done over the past year has been a useless, waste of time.

And it's just a reminder that Maggie looks different than other children. Through my eyes she's completely normal and beautiful, but a stranger off the street sees her differently. I'm not going to lie, that's hard for a mother.

I will say that God has brought some words of encouragement from several people this week and that has really uplifted me. One person was from England! She found my blog through the PPROM list serve that I'm on and told me that her three year old son had a very similar situation as Maggie. And I've never met anyone with a very similar situation as Maggie! She prom'd early too and her son miraculously lived, but suffered severe torticollis from being in the womb with no fluid. She said her son's head is just now getting straight at 3 years old after several Botox injections and lots of therapy. Really her email was such a God-sent thing! There is hope that Mags can get better!



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Vent

If one more person stops me in public and "helpfully" informs me that my baby's neck looks uncomfortable in the stroller and I should fix it, I literally am going to lose it....seriously. Maggie was screaming hysterically as we stroll into this medical complex and this lady hails me over to tell me this. Like I didn't realize Maggie's ear is firmly resting on her shoulder....Lord, please give me patience.



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Vintage Carnival Birthday Party

We had a good, old-fashioned backyard party for Mary Lawrence on Saturday- sweet friends helped Mary Lawrence celebrate on the most beautiful Spring day. I was a little scared when Mary Lawrence announced a few weeks before that she wanted a "red" birthday party (whatever that means?!) but I think she absolutely loved everything about it....

Mary Lawrence's 4th Birthday

(Click on picture if you want to see slideshow)

ML's 4th birthday

Yesterday was Mary Lawrence's 4th birthday and I think her best present was this (besides Polly Pocket's pool, of course):

Now she doesn't chew or swallow but she is interested and that is a HUGE step. A speech therapist told me children with feeding issues usually start out eating Cheetos or Doritos due their strong taste. I don't care if all she eats is processed junk food the rest of her life - as long as she eats someday!!

And of course we all know where the girls get their love of cheese from...

We took ML to Mi Cocina for her birthday and then off to the movies...

It was a great day for a special girl!

Peek a Boo

Well we've had a nice, low key weekend. We took Maggie to her very first 'friend' birthday party on Saturday - a neighbor's child down the street turned one and Maggie had so much fun watching all the children play. We tried to give her birthday cake and ice cream, but she refused and spit it from her lips. (Seriously, what child does not like ice cream?!)

Anyways, I had to post this video - peek a boo is Maggie's favorite thing to do:

Oops...

Five Days After Botox....

I guess I should start with the positive : Maggie's vomiting has gotten dramatically better since the Botox! It is really quite amazing - she has not vomited at all the past few nights whereas she usually is soaking wet in the morning. We even felt so confident as to switch her from baby formula to pediasure (which is what tube fed babies consume). And still no vomiting- which means she must have outgrown her milk protein allergy.
She's still on a continuous feed so our next step is to slowly wean her off of that. We are still going to switch her button for a new brand. But the GI doctor says it will be really uncomfortable for her if he changes it while she is awake, so we have the option of waiting until her next Botox injection in June when she will be under anesthesia. I don't want to be cruel, but I really don't want to wait three months for that....

Anyway, despite all of this good news, I was very discouraged over the weekend because her neck did not respond like I had hoped. I just cried much of the evening on Friday I guess because I had so much hope that this would be an instant fix and make her neck pop back into place. But it wasn't. The Botox did it's job in loosening up the tight muscles on her right side, but the muscles on her left side are not strong enough to hold her head up. We are doing intensive physical and occupational therapy in addition to craniosacral therapy (which is an alternative therapy that's really cool and probably sounds cooky to most but we are desperate!). We usually do OT and PT each twice a week but we have hired an additional person to come in between so we can maximize these first few weeks when the Botox is most effective. We are doing stretching and straightening exercises five times a day in addition to the therapy visits. She is taped up on her weak side with hot pink therapy tape (supposed to stimulate weak muscles) and her new neurologist prescribed a medicine used on Parkinson's patients to help with muscle rigidity. In short, we are doing everything possible to know for sure if this is or isn't a muscle issue.

Here are some pictures of what the last week has looked like for Maggie:

(at the hospital)

We're even positioning her at night with the boppy (at least until we go to sleep because I worry about her suffocating):

she's on the verge of crawling...

we've had some fun times, too:

There is so much riding on these next few weeks and months. Will she or won't she have to have a permanent halo drilled into her head if this therapy doesn't work to teach her hold to hold her neck straight? Or if it is not a muscle issue related to not having any fluid, then it's got to be something else much worse. This new neurologist agrees that the lack of amniotic fluid is a compelling reason for her neck issue. But he said if the Botox doesn't work we can do some more (painful) nerve and muscle tests to see if she has a neuromuscular disorder. He said, "I mean, if she gets RSV, and is on a ventilator and we have to put a trach in, it'd be nice to know if the trach would just be temporary or if she had some neuromuscular thing that would keep her on in the rest of her life." WHAT!!!!???? Seriously? I just can't handle that kind of talk right now. I thought we were past all this talk?

Anyways, I am sure that visit contributed to my feelings of discouragement and defeat over the weekend about it. Justin can't figure out why this issue is so hard for me. And I don't know the answer. Is it that it's almost been two years since I got pregnant and this all began and I am just tired? Am I being selfish in wanting a normal life back? Is it a superficial thing where I just want her to look normal? Is it my type-A personality where I just want one of her issues to be checked off my list (thinking about the feeding issues we have to tackle next)? Or is it just plain unbelief?

I feel like I was able to trust the Lord with Maggie's life as I walked through the shadows of her imminent and probable death, but I can't seem to trust turn this one medical issue over to Him?  If the Lord can spare Maggie's life, can he not also heal one body part? If he can give us the strength to endure four months of agony on bed rest, can he not give me the strength to endure this seemingly minor trial in comparison? How quickly we forget as humans what God has done for us. If God adorns the lilies to be more glorious than Solomon's temple, how much more will he provide for His beloved children.

So after a thoughtful weekend, I am feeling encouraged once again and motivated to move forward. Thank you to all, as always, for continuing to pray for Maggie.

Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith?  Matthew 6:28-30

We're home!

Everything went great this morning. Maggie is home and in her brace. We won't know if the Botox is working for a few days...but thankfully she did fine under anesthesia.

But there was a development on the vomiting front. While doing the endoscopy her GI doctor discovered that her g-button balloon(the inside part) looks to be blocking the exit of her stomach into the small intestine. Its almost like you put a baseball in the bottom of your sink. Water would take a lot longer to drain out. Same thing with Maggie- the milk can't get drain fast enough into small intestine so it just comes back up!

So if the Botox does not help the vomiting over the next week we will try to switch brands of g-buttons or may have to start all over and have a new hole put in. This is potentially a huge breakthrough and confirms my instinct all along that something was not right with the button because her vomiting got so much worse after it was placed in September. So we are thankful to at least be getting somewhere with that.

Thank you all for praying. Will keep you posted on her progress!


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Botox tomorrow

Our hospital bags are packed, Maggie has had her pre-op breathing treatments, and my alarm is set for five am tomorrow morning.  After all the doctors we've seen over the past year, I am so glad that we are finally taking some serious action about her neck and her GERD (gastroesophageal reflux disease). Of course, I would be lying if I said I wasn't a a little nervous (I pulled weeds and planted flowers like a maniac today!), but I truly believe that this is the best option for Maggie right now and trust that God hears our prayers for protection, prescision, and healing.

Oh I hope that this fixes her neck and allows her to sit up straight! I am so excited for the progress we are hopefully going to see in the coming days and weeks. Actually tonight Maggie gave us a sneak peek and pushed herself into a sitting position while playing on the bed. This is no big deal for most babies, but for Maggie is it huge! We have been working on this for months - I've endured torturous screams from my poor baby as we stretched her severely tight legs and forced her to strengthen her extremely weak core day after day with no apparent results. But then, tonight, she does it like it is second nature. (I guess that it was second nature to her but she just didn't have the physical capactiy to do it until now!).

Next Wednesday

Maggie is having her Botox on Wednesday. Thankfully the two doctors managed to coordinate the procedures so she will be having an endoscopy, Botox in her stomach, and Botox in her neck. I am praying for no complications, for the Botox not to travel to other parts of her body, and for it to work. How wonderful would that be!

The Daffodil Dance

How magnificent it is to see green shoots coming out of the ground amidst a still cold winter. And then a few weeks later - POP!- the daffodils burst open bright as the sun, as if to say, "Spring is Coming, I promise, the cold, hard times of winter are nearly over."

My friend Megan loved daffodils. That is why after she died her parents started The Daffodil Dance in Atlanta, to honor her life and raise support for Creutzfeldt-Jacob disease research, which is the disease that took her life at age 27.

That first Spring after her death Megan's parents' street was lined with hundreds of yellow daffodils - their sweet neighbors started a tradition the Fall before and planted the bulbs in her memory. How touching it must have been for her grieving parents- after that first sad winter without her - to drive home surrounded by blooming yellow daffodils on every side.

Today the daffodil dance continues in Dallas in a small way. How I love that I I think of Megan every time I pull into my driveway. And how I love the story of hope that God gives us daily with His beautiful creation, if we only take the time to look.

-------------------

Megan's mom penned a beautiful book about her journey of suffering and hope with Megan and I highly recommend it to anyone suffering from a loss or illness of a loved one. Or anyone who wants to read an amazing story of the love and faith of two godly women and their precious mother-daughter relationship. What Marcia Gaddis did for her daughter is a moving testament for all of us mothers out there.

                     "When God Comes Near," by Marcia Gaddis (available on Amazon)

Megan's parents came to meet Maggie, who they so diligently pray for, a few months ago. How precious a visit it was....

"Daffodils" (1804)

by William Wordsworth

I WANDER'D lonely as a cloud

That floats on high o'er vales and hills,

When all at once I saw a crowd,

A host, of golden daffodils;

Beside the lake, beneath the trees,

Fluttering and dancing in the breeze.

Continuous as the stars that shine

And twinkle on the Milky Way,

They stretch'd in never-ending line

Along the margin of a bay:

Ten thousand saw I at a glance,

Tossing their heads in sprightly dance.

The waves beside them danced; but they

Out-did the sparkling waves in glee:

A poet could not but be gay,

In such a jocund company:

I gazed -- and gazed -- but little thought

What wealth the show to me had brought:

For oft, when on my couch I lie

In vacant or in pensive mood,

They flash upon that inward eye

Which is the bliss of solitude;

And then my heart with pleasure fills,

And dances with the daffodils.

New brace

It's going to take some getting used to...






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Vintage Movie Night

So even though I didn't really feel up to having a party for my 30th birthday, Justin insisted that I have one. So he hosted a party for some of my friends at a local movie theater. We watched my favorite old film, "Bringing up Baby," with Katharine Hepburn and Carey Grant.  It was a great night and I am so thankful to my sweet husband and friends for making my day so special - and for making me have fun!!

Movie Fare!

Popcorn!

Red Velvet Cupcakes - my favorite!

The Favors

Memories of me as a "Baby"

Orignial Movie Poster of the Film

My sister came in town - so fun!

 Sweet friends...

What a great host!

 Yeah for 30!
(Thank you Whitney!)

Movie Poster Invitation

Botox, Botox, and more Botox

Needless to say, it's been a hard week. Three hours at Children's Hospital on Monday doing an upper GI study and discussing treatment plans for the once again confirmed horrible reflux. Three horrible hours at Scottish Rite yesterday making her brace, which really does look like a torture device. An hour at the neurosurgeon checking stitches that were looking infected. And two hours at the Physical Medicine Doctor consulting about her neck.

The good news is that she thinks the Botox will help Maggie's neck. Maggie will go under anethesia for the procedure (it has to be so precise and she can't have any moving). The bad news is that the doctor only does these type of procedures in the O.R.once a month, and next week is all full, which means we have to wait five more weeks until her next appointment - which is April 13th, which is Mary Lawrence's 4th birthday.

In the grand scheme of things, this is not that big of a deal. But after the week we've had, after the nurse called to tell me this, I got off the phone and just started bawling like a complete idiot. I just want her to have the Botox asap so we know if it works or not. It's been a year getting to the bottom of the issues and now it's dragging out even longer. "Nothing is ever easy; everything takes so long," I sobbed to Justin over the phone as he's on a plane waiting to take off (bad timing on his part to call during my breakdown). "Mary Lawrence always gets pushed aside for Maggie's needs and it's not fair," I boo hooed.

Pitiful, just pitiful I tell you. I just want so badly for this to all be over, for the torture tests to end and for Maggie to get better. On top of that, I am overwhelmed by the constant vomiting and the feeding issues that we'll be battling for years to come.

I told the GI doctor that her PT thinks Maggie will walk in the next 2-4 months (yeah!) so what are we going to do about this continuous feeding thing? I mean I can't follow her around with the IV pole all day long. He told me- with a straight face- that she'll just have to carry around the feeding backpack. The hilarity of this idea pretty much makes up for this week! The feeding backpack weighs about 6 pounds, not including the milk. I'm sorry, but I just don't see how a little baby is going to swing that.

Oh so many issues and never any solid answers.I think we've pretty much decided that he's going to try a new procedure on her (not new to him, just newer as far as treatment options go). Basically he will inject Botox (yes, more Botox) into the opening of the part of the stomach that empties into her intestines. The opening would no longer be able close- the idea being that contents would flow out of the stomach faster, hopefully helping the vomiting. There are other options that would help her reflux but would still keep her on a 24 feed, but I told him I want to be aggressive and try to do something that would get her back to normal feedings.

Anyway, I can't believe tomorrow is my 30th birthday. Is it bad that I feel like I'm turning 40?! Maybe I need to swipe a few syringes of Maggie's Botox..,




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Uh Oh!

This is very embarrassing and I need to issue an apology to some...For a while now I've been thinking it is so strange that no one leaves voice mails on our home line. I kept calling to check and it said "no messages." Not so weird, I told  myself, since everyone calls me on my cell phone.

But a few weeks ago, Maggie's GI doctor told me he tried to leave me a message on our home phone and it said, "voice mailbox full." Hmm, that's strange, I thought, and made a mental note to call AT&T, but just never had time to call. But today, I am awaiting that same doctor to call  me and didn't want him to think I was a complete loser for still not tending to my phone issues. So I called AT&T and was shocked to find out that I have - wait for it - 143 voice mails. And they date back to January 2010.

I am sure there are people out there who most definitely think we are the rudest people for not returning phone calls. To those people, I am so so sorry.

I don't' know how I will  ever have time to listen to that many voicemails so I'm just deleting them without even listening to them. (I'll probably listen to the recent ones to make sure I haven't missed any majorly important calls about Maggie!).

Anyway, just thought this would make other moms out there who feel like they can't ever get on top of things a whole lot better about themselves....surely no one could be as moronic as me for thinking no one has left us a voice mail in over a year.

Medical Recap

Since everything has always been so difficult with Maggie, we were both relieved and almost surprised that her spinal surgery went so well. Her recovery has been so easy compared to everything else she has endured and we are so thankful to God for that. And for all of the prayers lifted up for Maggie. No doubt God provided us with a phenomenal neurosurgeon and we continue to pray that his work will prevent any long-term neurological issues.

So I didn't mention this before, but on the day of Maggie's surgery her orthopedist from Scottish Rite Hospital came over to Children's' Hospital in order to move Maggie's head and neck while she was under anesthesia (yes, the third doctor to want to do this). I thought it was so neat that he made the special trip. Turns out, he and Maggie's neurosurgeon are buddies and had been skiing together the week before so they obviously has been discussing our little Maggie!

Anyway, he came out to the waiting room after he "manipulated" her neck and showed us pictures on his digital camera of Maggie's head in all different positions. Her neck was able to be positioned straight up and down, which we knew. But as I suspected, they could not turn her head all of the way to the right nor could they tilt her head to the left shoulder.  His little exam confirmed what they've already said : her sternocleidomastoid is tight, but it's not so tight to warrant cutting of that muscle.

You see in a typical baby with severe torticollis, the sternocleidomastoid  muscle is so tight that the baby can't move out of this tilted position:

Maggie looks like this baby (except she tilts to the opposite side) but she can move out of this position and that's why doctors have been thrown off .

(The sternocleidomastoid  muscles)

A few years back it was very common for surgeons just to "cut" the sternocleidomastoid muscle to allow it to stretch, but doctors no longer do this surgery very often because of permanent complications that can occur. And three out of the four surgeons we saw did not want to cut Maggie's because hers is not that tight.

That is why we went through MRIs and CT scans to see if there was something wrong with her skeleton or brain to see what else would be causing this, since it is obviously not the sternocleidomastoid  muscle. The last time we saw the neurosurgeon a month ago after those 3D CT scans, he concluded that perhaps it's not her sternocleidomastoid  muscle but her trapezius muscle and wanted us to talk to a Physical Medicine and Rehabilitation Doctor about doing Botox. At that point, the Scottish Rite group didn't think it was a muscle issue at all; therefore, they didn't think Botox would work. But after her two doctors got together last Friday and moved Maggie's neck, they both agreed that it's her trapezuis muscle that is extremeley tight. It most likely didn't form and stretch out properly because of how she was positioned in the womb without any amniotic fluid.

See the trapezius muscle in the diagram below:

They both agreed that the trapezius and sternocleidomastoid  muscles should be injected with Botox (to paralyze them temporarily) so we can position her correctly in a brace with little discomfort and hopefully get her understanding how to hold her neck up normally. If the brace doesn't work, then we will have to do a halo (which is a permanent metal halo screwed into her skull - so hope it is doesn't come to that).

So the good news is that two doctors finally agree on a potential cause and solution to the problem. It took five months for this to happen, and although it may turn out that none of this is true, at least for now her two main specialists are on the same page - which is huge!

I am sorry for the long medical lesson, but I know there are many people who don't really understand why it's been so hard to figure this out and why the surgeons don't just cut the sternocleidomastoid muscle and be done with it. Although it has been a frustrating jounrey, I am so thankful for that the surgeons we visited did not rush to fix her by cutting the muscle, and instead were cautious about finding the true cause of her torticollis.

So we are meeting with the "Botox" doctor on Wednesday and I'll be interested to see her take on all of this. As I have said before, I am very nervous about using Botox because of what happened to a friend's child after having it done. I really don't like the idea of them shooting poison into her such a sensitive area and am very aware of the potential complications. But at this point there are no other tangible solutions, and we have to do something to try and help her. I am praying for discernment and, as always, that God will continue to lead us on the right path as we try to figure out this medical mystery.

She's home!

We got home this afternoon. I can't believe she's doing so well! Of course she's got her pain medication and has to lay flat, but she's doing a million times better than she was after her last surgery.

We are so grateful for all of these answered prayers and for all of you praying for her.


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Quick Surgery Update

Thanks to all for praying- Maggie did great and the surgery went well with no complications. She is still in recovery and they are monitoring her closely. She has to lie still on her back for 24-48 hours. But she is well medicated and seemingly okay except for the fact that she hates the IV, wristbands, and tape attached all over her





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Her upcoming surgery

Lately I think I have attempted to downplay Maggie's upcoming surgery as a way to dismiss my own fears about it. But the truth is, it's a very serious surgery. And I am nervous. Scared. Anxious. Kind of want to throw up when I think about it.  Not many people understand what it's like to watch your baby being rolled away into an operating room, praying that she will come out better than when she went in.  Let me tell you, it's awful. .

The surgery is scheduled for Friday at 7:30 am and will take at least two hours. We do not know what her recovery will be like. She'll be in the hospital a few days at least. And although it is considered routine as far as neurosurgery goes (but really, is there anything "routine" about neurosurgery?) there are major long-term neurological implications if the surgery is not done right or if she responds poorly.

So I humbly ask you to remember Maggie in your prayers this week:

1. For the surgeon's hands to perform every minute of the surgery perfectly
2. For no short-term or long-term complications
3. For no infections while in the hospital
4. For no complications with anesthesia
5 And for a fast and easy recovery

Thank you, thank you, thank you to all of our sweet family and friends who are praying for us and especially for Maggie.