Beach Trip 2011

We were able to get away to Florida a few weeks ago and what a blessing that was! Our family had lots of togetherness with nothing much to do - what a welcome change! We were able to see dear friends, too,  - the Lipseys from Jackson, the Yates from Memphis, the Williams from Dallas, and the Arnolds from Memphis, and on the last day, our sweet nephews - Noah, Pierce, and Emerson Phelan. So of course I had to do my now annual (and cheesy!) beach video!

(Click on the box below)

41 Words

Maggie may be struggling with a lot right now, but one thing we are not worried about is her speech. In our three hour appointment at Scottish Rite today I thought it would be fun to write down all the words Maggie is saying. 41 words! Pretty good for a 17 month old(that's technically what she is), especially considering that Mary Lawrence wasn't even saying "mama" at this point in her life. What a blessing!

Airplane
Bye bye
Hi
Mama
Dad
Cow
Moo
Bubble
Pop
Eye
Uh oh
Ball
Balloon
No no
Up
Light
Down
Open
Hold me
Hi baby
Water
Tv
Blue
Bow
I'm cute
Phone
Wee
Jessica "caca"
Blanca
Baby
Help me
Night night
Lolly
Necklace
glasses
Row row row (your boat)
Nemo
What's that?
Mine
Mermaid




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Procedure

Maggie was able to have her Botox in her neck and stomach yesterday. We are so thankful to have that done!. Thank you for praying.

Maggie has not gained weight in three months so if this doesn't help her gain we will have to try other things and try them soon. We had a long talk with the GI doctor expressing how frustrated we are with the constant vomiting and how even more frustrated we are that it's the g-button that is causing the vomiting.  We reminded him that we "gave in" the g-button to make our lives easier, and instead it's made our lives a living nightmare. Our child gags and vomits everything we put in her; her eyes water and her face turns red and she can't breathe well. These episodes go on for 5-6 minutes and it ends with everything within two feet of her covered in vomit. Her mouth must taste horrible, but she refuses to drink anything because she is so scared. (I try to brush her teeth but it's hard to jam a toothbrush in the mouth of a baby who has an oral aversion and gags whenever anything enters her mouth!)

Anyway, the doctor said that even if we took the button out and surgically placed another one somewhere else in her stomach, the vomiting would probably not get better. The reason is because the anatomy of her stomach was forever changed by the initital surgery. The only thing that may help, he said, is a permanent surgical procedure called a Nissen that we have avoided all along because it can cause even more gagging and wretching. But as he said, if she's not gaining weight we have to do something.

This was very discouraging to hear. Basically one surgeon and one surgery has forever changed my daughter and we don't know what her future will look like as far as vomiting and eating. She could vomit and gag for many more years - or the rest of her life - and never be able to eat. We just don't know. I told one friend I am angry and sad at the same time. Maybe if I had spoken up for my daughter in the beginning when I felt like something wasn't right with the button, maybe, just maybe, we'd be in a different situation.

I am not giving up hope just yet. We'd like to get another opinion on the matter. And I am still praying for dramatic change in her vomiting (and neck!). We got our e-stim machine so we will be working on that, too.

Botox tomorrow - hopefully!

Well, both girls have been sick with fevers and colds. So we've had good reasons not to get out in this dreadful Dallas heat!

Maggie is holding up pretty well, but I am not sure they will let her go under anethesia tomorrow unless she gets a lot better. I'm praying for quick healing so she can have this done and we can move forward on our path of getting her neck and reflux better! Praying also for the doctors and nurses to take good care of Maggie tomorrow if she does have the procedure.

Thank you for praying.

Updates/Prayers

I've been wanting to update on Maggie's health issues, but have been hesitant because I'm sure people tire reading of our struggles and needs. But I cling to the hope that God hears and answers our prayers, as He already has showed us so many times, so I pose these updates as prayer requests for our sweet baby:

1. Her neck: We stopped the e-stim two weeks ago after our therapist left. We are waiting to get a prescription for a machine for home use and to see if insurance will provide one. I know we will get one somehow, but the discouraging news is that ever since we stopped the e-stim Maggie has ceased holding her head up on her own. I'm not sure what this means long term, but I have been deeply discouraged. I just never thought she would backtrack so fast. Please pray that she would start holding her head up again and permanently. Every baby/toddler I see I can't help but look with fascination at how they hold their heads up and then be so discouraged that mine can't do the same.

2. Vomiting - it's unbelievably bad and has been for a while. I just have gotten used to it, but a few weeks ago I realized (once again) that it's not normal for a 23 pound baby to not be able to hold down 4 ounces of milk. It's like a geyser of vomit is always waiting inside Maggie and anything will set it off: crawling, laughing, crying. The sad thing is she actually is showing interest in big people food (she's done with purees). But if we try to give her a saltine or watermelon or anything solid, as soon as she swallows it she gags and throws up all her milk. Thus we are faced with a conundrum: We want to encourage her to eat but if we do, she will vomit all the time and lose weight. Bottom line: the child will never be able to eat unless we get the vomiting figured out, and her GI can't seem to. I still think it's the placement of the button and keep asking if we need to
"start over" with a new incision for the button, but still have been given the "let's wait and see" answer.

3. Botox- Part of the "wait and see" answer involves another Botox round in her stomach and neck on June 20th. Please pray for her not get sick this week so she can go under anesthesia for the Botox. It has been a complete nightmare getting this thing scheduled with the two doctors so I just want to get it over with already. Please pray for no complications and for it to help her neck and vomiting and not hurt her.

4. Doctors- I am questioning again if we need to seek out other opinions. Frankly, I'm so exhausted and burned out. I don't want to drag her to another doctor or worse, another city, to be told the same things we've already been told. I'm praying for wisdom on this decision.

5. Protection- Last night about 10 pm I heard Maggie moaning in her bed. It's not abnormal for her to moan until she can soothe herself back to sleep. But something moved me to glance at the video monitor. There she was sitting up, eyes closed, with the tubing from her feeding pump wrapped around her throat twice. I ran in there and, thankfully, she was fine. It wasn't tightly wrapped around her throat to the point where she couldn't breathe. But if she had laid back down, she wouldn't have had enough slack and wold have suffocated. Praise to God that she didn't..

Yes, last night one of my biggest fears came true. This is why I haven't slept well in over a year- there is nothing safe about having a cord in your baby's bed. But she has to have it in order to live. She gets most of her calories during her continuous nighttime feed. And taping it down against the bed doesn't solve the problem because she moves around and could yank out her button, or worse, get caught on the even shorter tubing. Please pray for her safety and again for this vomiting issue to be resolved so we don't have to do the continuous feed at night. (I sure hope my mom doesn't read this post... she'll never sleep again either!)

Thank you for keeping us in your prayers as always. I know God will lead us to do the best thing for our daughter- I just need patience in getting there...




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Pride, Denial, and Some Help from Above

"...your Father knows what you need before you ask him." Matthew 6:8

Having a child with medical problems or developmental delays forces one to open up so much of their otherwise private life and depend on nearly complete strangers for the well-being of their child (doctors, nurses, and therapists, etc). This was extremely hard for me in the beginning. When we brought Maggie home from the hospital, several of my friends asked me if I was going to have someone helping me with Maggie. I pondered the idea of a baby nurse, but besides being so expensive I honestly did not want another person intruding into our lives. I was so tired of doctors and nurses hounding us with instructions on how to care for our baby. I was so tired of people just around all of the time. I just wanted privacy and I wanted to do it myself.

So for those first cold months of 2010 after Maggie came home from the NICU, our family hardly left the house. And I so enjoyed it! We got in a routine and life seemed pretty good. But then Maggie stopped eating, and her torticollis became more pronounced as she grew. When the threat of RSV passed in April, the doctor ordered us to start the full range of therapies - speech, occupation, and physical therapy.

Soon I was racing back and forth to doctor appointments and therapy appointments and trying to do all the therapy "homework" at home. It was quite normal for us to have 2-3 appointments a day. Soon our quiet life holed up in our tiny house was turned upside down. I became a slave to helping my baby overcome her problems. And it consumed the entire family.

I just never in a million years imagined that she would have this hard of a time. (Can you say denial?) No question I have a skewed perspective. I remember when Maggie was about six months old we were discussing her issues with her pediatrician and he said, "I don't know why, but Maggie is just having a harder time than most 29 weekers." I couldn't believe my ears. Here I was thinking she was doing great for what she had been through. I mean, she was alive, wasn't she? And for someone who was not supposed to have any lungs, she only stayed on the ventilator for 10 days and was no longer on oxygen at six months of age. I thought that meant she was doing pretty darn well.

But now I realize now that most 29 weekers do a lot better than her. I have seen 24 and 25 weekers do better than her in their first year of life, and that is piercing to the heart of a mother who watches her child struggle. But I have to remind myself that those babies had the life-enhancing amniotic fluid throughout their time in the womb, however short that was. Maggie did not. And because of the lack of research, we will never know what kind of impact that had on her start at life.

So it was at our year checkup in November that I officially broke down (not on purpose) in front of our pediatrician about how I just felt so overwhelmed with the constant medical issues. It was then that he suggested we start nursing care for Maggie. Of course, I wouldn't hear of it at first. I didn't want someone in my house. I didn't want people to misjudge Maggie if she had a nurse following her around all of the time. I wanted her to be as normal as possible.

A few months went by though, and life seemed to only be getting harder and not "normal" as I defined it. So we decided to pursue the nursing thing and see if it would help Maggie and me. We went through the tedious process of getting it all approved and finally we started trying different nurses in February. Unfortunately, I kept sending them home because none of them were up to my standards. We would find a an okay nurse and I would spend the first few days teaching her what to do with Maggie (medications, feeding 4-5 times a day through tube, feeding 4 times in high chair, therapy exercises in between). And then she would quit the next day. This happened 5 or 6 times in a row and I started getting offended - I mean our life is not that hard, is it?

Just when I started to write off home health care altogether, a sweet nurse named Jessica showed up. She was young and sweet and instantly loved Maggie. She promised me in the beginning that if she was a good fit that she would not leave us. And she hasn't! Finally after a month of having her come 3 -4 days per week I feel some relief. I feel like I am not suffocating under the pressure of trying to do Maggie's routine all by myself. I am not always at my wit's end and no longer short with my husband (okay, I still am sometimes, but not in every conversation!).

The nice thing about nursing care is that I am still with Maggie all of the time, but my day is not consumed with being, well, a nurse! I can sit down and eat lunch with Mary Lawrence while Jessica feeds Maggie. It's amazing when I realize how much time Jessica spends on Maggie's morning routine of feeding, bath (due to overnight vomit), changing linens, and medications- I wonder: what did Mary Lawrence do for those first two hours of each day when I was doing all of that?

So one more thing I regret about this past year: not putting my pride away sooner so I could get help and give Mary Lawrence the attention she needs. I also can't help thinking that if I had started nursing help sooner maybe Maggie would have been doing better, too. I have realized that nursing care (or any kind of help) does not mean your child will never be independent. It just means they might need a little help getting there sooner.

Which brings me back to my original point about trusting what otherwise would be strangers for the betterment of your child. We have gone through several doctors, nurses and therapists, trying to find the perfect ones for Maggie. Finding the right therapists has been the hardest. We'll find a great and then be saddened when we learn three months later she's leaving (turnover is high in these therapy places). It's hard not to question God on these things. Consistency, please! I want to plead.

But I have learned that this journey of ours is like a relay race. And Maggie is the baton. God has seen to it that she is being passed along to a different health-care provider at just the right time - either when it seems she has hit a wall in her development or the therapist has nothing else to offer. It's hard to move on, but every time it's been for the betterment of Maggie.

Ashley, Maggie's Occupational Therapist, is our latest therapist to move on. We are so sad about it because she has been a godsend in every way. She took over last fall when Maggie's second OT quit, and has pushed Maggie so much. It was her goal to have Maggie sitting up by mid-January (which I couldn't imagine, but Maggie did!). And it was her idea to try the e-stim and even found a doctor to write a prescription for her so we could try it. No one thought it would make a difference, but boy were they wrong! Ashley is moving on to one of the best children's hospitals in the country, but said that Maggie will probably be her biggest accomplishment for the rest of her career. And she's only 25. Is that not incredible?

So of course I sobbed and sobbed as we said good-bye last week. Mary Lawrence cried, too. When you depend so much on someone for your child's well-being and future, you feel like your heart is being ripped in two when they move away.

You see, while this past year has been the hardest of my life I have no doubt seen God's hand in all of it. How perfectly He has selected all of these therapists and doctors and nurses to help Maggie in various ways. How he has taught me to accept help with thanks and grace, and not to be ashamed of it. How he has held our family together in some of the most trying times. How he as humbled me again and again when he has brought complete strangers to my skeptical door, and made them into lifelong friends - who have changed Maggie's life (and mine!) for the better.

(Ashley and Maggie )