Happy Mother's Day!

I am so blessed with my beautiful girls and particularly thankful for our sweet little baby this year. God is so good to give us another healthy and JOYFUL little baby. I truly treasure every laugh, smile, late night feeding, and, yes, even every diaper change. I don't know if I have more perspective because of what I went through with Maggie or I'm not as stressed the third time around, but I am enjoying every single minute with my baby.

Neely turned 5 months yesterday. How I wish time would just stop so I can treasure these moments even more!

Good day

Maggie was an absolute angel yesterday. We were at the hospital most of the day and she never complained. Not once.

We met with her neurosurgeon after the MRI and the good news is that her lower spinal cord (where she had surgery several years ago) looks fine. No more surgery needed!

One of the reasons she had the MRI is because lately we have noticed Maggie falling more and her right leg has gotten super tight. Her gait is not like other three year olds and, most concerning, she is still not potty trained. All these things are controlled by the lower part of the spinal cord- where she had surgery a few years ago.

I've been bribing her and guilting her over the last year to use the potty and, in the back of my mind, I had the fear knowing there was a real possibility she couldn't control herself and, therefore, couldn't be potty trained. Thankfully, the MRI cleared those fears. So we'll keep trying...

As for her gait and leg stiffness, he thinks she will always have that. He says the reason she is falling a lot is because she is trying more things, getting more confident, and the probability of her falling increases with that.

Frankly, it's hard to hear that your daughter will always struggle with walking and running and movement in general, but I kind of figured that was going to be the case. Her leg brace and shoes and, of course, therapy will help her compensate as she gets older. But as grateful as I am for everything else we've been blessed with, it does hurt my heart to hear that. Whenever I see her around her peers it pains me even worse, because the older they get, the more that physical gap widens. I see it at playdates and at the park all the time- Maggie will often sit on the outskirts and watch because she can't keep up with other rambunctious three year olds. I'm sure she also fears being knocked over (which happens often). No parent ever wants their child to struggle or be left out because of physical issues, even the ones who know they should just be thankful their child is walking at all. It still hurts.

In other news, he told us he thinks she needs to wear her halo brace more than we are doing now. So now we have four different doctor's opinions on how much she should be wearing it and they are all different! Very frustrating, but like so many things I will just have to go with my gut because, as this renowned neurosurgeon said today, Maggie is a mystery and has never fit into a box when it comes to diagnosing her. He said he can't give us any more direction on her neck because he just doesn't know....

But to end on a positive note, he said he was blown away by how well she was doing overall. He laughed as Maggie talked and played with the huge stuffed dinosaur he keeps in his office. He said he never expected Maggie to do so well...not in a million years. Thank you, Lord.

MRI tomorrow

Maggie has an MRI tomorrow. It is to check for any changes in her spinal cord since she had her surgery when she was 13 months old. Please pray that we would get good results back that show no changes and that everything is fine her. We have seen some signs lately that there may be some issues so I am trying to be hopeful...


Tomorrow will be an all day affair, with her MRI under anesthesia in the morning and then waiting to meet with the neurosurgeon in the afternoon for results. I am dreading it all. Waiting in pre-op forever, doing all the paperwork for the gazillionth time, forcing Maggie to let the nurses take her vitals, repeating her medical history to at least four different people, and then explaining to my sweet little girl, over and over again, why she has to roll into a strange and scary room without me...it is all too familiar. Now that she knows what to expect, it makes it even harder....

On another note though..

Maggie got her first official haircut today. I've never taken her anywhere because her tilted head makes it hard for someone to cut, so I always just trimmed it myself. But I don't cut it often enough and, as a result, it got so long that whenever it got wet it stretched all the way to her rear end! So we finally went today to Cool Cuts and got the "first hair cut" picture frame and bow at three and a half years old!

 Jessica held her head straight ...

She was very serious about the whole process...

But looks so beautiful now..those curls don't quit!

Coach versus Cheerleader

I feel like I am Maggie's coach and it's Spring training everyday of the year for her. With the amount of therapy "exercises" she requires on a daily basis to progress it's hard not get into the mode of constantly pushing and challenging her to do more and to do better.

I realize, however, that some days I just need to be the mother in the stands cheering her on. On rare days like this past Saturday at Maggie's dance recital I was able to put my coaching duties aside and be that kind of mom. I have never seen Maggie so happy and so proud- she had so much fun!

As for the parents who were told that their little baby may not ever walk or live a normal life, well, Justin and I had to hold it together through her routine and not let our tears get the best of us. We were so proud of the hardest-working three year old we know...and knowing that she can keep up with her peers (for the most part) is such a sweet gift.

Video from her rehearsal...Jumping up and down for most three year olds is easy, but this is quite hard for Maggie with her weakness and balance issues. She and her therapist have been working hard and you can tell.

Neely

So I've had a lot of questions about Neely's "helmet." It is actually called a cranial band and is purely cosmetic. Here's the story:

Within hours of her birth I noticed that she only wanted to look to her right. Because of everything I've been through with Maggie I picked up on this and her rather angular (nice way to put it!) head immediately. Justin made fun of me (thinking I was insanely paranoid) for asking him to reposition Neely's plastic hospital bassinet so she was forced to turn her head to the other side.

For the first few months of her life I was diligent about repositioning her and making her do tummy time CONSTANTLY in the hopes she would grow out of her preference to look to the right and that her head would "round out." But at three months of age I had a Physical Therapist examine her and she said that Neely did, in fact, have a mild case of torticollis.

ARE YOU KIDDING ME?!??!

After sobbing on the floor for a few days- mad at myself for not stretching her from the get go- I finally pulled myself up off the floor, convincing myself that I was not part of some cruel, cruel joke (those who have followed this blog from the beginning know what I'm talking about).

We started physical therapy a month ago and I opted to go ahead and get the cranial band to help round out her head because the earlier babies get it the less time hopefully they will have to wear it.

The first day she had the band I really worried that people who knew me would think I was starting to invent problems with my children. Because who else has all three children in some kind of therapy and have a doctor in just about every specialty? I promise, though, I'm not that crazy mom! And I had to let that nonsensical thinking go because, honestly, I don't have time to worry about stuff like that. Which I guess is a tiny blessing amidst chaos: you don't have time to worry about what people think!

* * * *

Still cute!

I promise I'm not one of those mothers who invent medical problems for their children in order to get attention! But boy it seems like we have our fair share of children's issues! #she'sstilladorable.

You know you're crazy when...

I know all of us moms have done crazy things in our sleep deprived, stressed out states. I can't tell you how many times over the years I've lifted up Mary Lawrence's shirt and tried to attach Maggie's feeding extension tube to her to stomach.

With Neely I am super careful when changing her diaper because I have this ingrained fear of doing so after accidentally yanking Maggie's g-button so many times. (Justin says he catches himself doing the same thing.)

This morning after feeding her I carried Neely into the living room and promptly started trying to put Maggie's halo brace on her. I kept moving her up and down in the brace, not understanding why she didn't just fit right in it as usual. It was about 30 seconds before I realized I had the wrong child! Maggie and I burst out laughing. "Silly mommy!" she said.

I just had to take a picture because I know one day life won't be so crazy and I will look back on the laugh and hug I had with Maggie today with great joy.

This is why I am a germaphobe

I've gotten a lot of grief over the past three and a half years for being a germaphobe. I have Purel on my key chain, in my cup holder, next to my kitchen sink, and Justin does the same. It borderlines on neurotic, I know, but I just can't shake the habit. I wish I could be of the "germs are good because they build up a child's immune system" crowd. But I just can't. In all our hospital stays and therapy visits, I have come across too many stories of otherwise healthy children who suffered severe health consequences from getting sick from seemingly "common" viruses. And since Maggie is not "healthy" to begin with, I always felt like she was so much more at risk.

I realized early on in our preemie journey that germs were not good for Maggie. The nurses told me when we left the NICU that it wasn't a matter of if Maggie would be hospitalized for pneumonia but when. I knew that if Maggie got pneumonia before the age of two there was a very good chance of lifelong problems, or possibly even death. That's why I didn't take her to school or Sunday school or any large crowds until she was almost 2 1/2 years old. And even then it was extremely difficult to do.

For most moms, if their child got a cold it would be over in a few days. If Maggie caught a cold, though, she could be hospitalized for weeks, even ventilated. I remember someone asking us over for a play date when Maggie was eight or nine months old and when we arrived the mom promptly told me one of children was running a 102 fever so just "don't let Maggie go near her." I couldn't decide if I was more mad at the mother for inviting us over when she had a sick child and I had a preemie that was extremely high-risk, or mad at myself for not speaking up and leaving immediately. Instead for weeks I suffered immense internal anguish that my innocent play date could have seriously harmed Maggie, and that I was stupid enough to allow it to happen!  This is how I have lived my life since Maggie was born- being as cautious as possible about preventing sickness, but also trying to trust the Lord with her health at the same time and let her live a somewhat normal life. It's a tough thing to balance, if that's even the right word.

These days I am still very conscious when it comes to germs. She's still at risk for chronic lung problems if she gets sick, but more than that it's the eating that I am concerned about. I knew if she got really really sick, it would mean major setbacks for her eating progress.

Just two weeks ago I was so pumped up because Maggie was eating so well. I was in the process of writing a blog post chronicling our eating journey. We had finally trained her to eat more independently and she was probably eating 80 percent of her daily caloric intake. The only time I would bolus feed her (through the tube) was at night after she went to sleep.

I was thinking maybe we were two months away from getting her button out- that's how well it was going! And then sickness hit. Anytime these tube-fed babies get sick, it's a given they will stop eating or at least back track. It happens every time she gets a cold. But last week was the sickest I've ever seen Maggie. She was not only refusing food and drink, but she could not keep anything down. In just a week, she lost three pounds. That might not sound like a lot to some, but for Maggie that's pretty much what she gained in 2012. It took that long for her to gain three pounds on her already skinny frame.

Devastation doesn't even begin to describe it. I may sound melodramatic, but I have sobbed numerous times this week thinking about it. I told Justin it's like when you spend hours and hours on a work project and then your computer crashes and you lose everything. I feel like I lost everything I had been working for this past year. Maggie is my full time job. Her eating issues alone are another part time job on top of that. Most of what we have accomplished with her weight gain and eating over the past year was erased with her getting pneumonia last week.

All the times I have sat with her to get her to eat, pushed her, manipulated her, punished her - all to get her to eat...down the drain. All the times I woke up at midnight to feed her through the tube to give her extra calories...down the drain. All the times I've cleaned up vomit and changed her sheets in the middle of the night because her stomach couldn't handle that much pediasure...down the drain. As I sat in the ER last weekend (with a 101 fever myself) holding my limp child whose lips are peeling from dehydration, I told myself over and over, this is why I am a germaphobe; whatever I can do to reduce the possibility of this happening to my child  again, I will do.

Maggie is very weak now. She looks sickly to be honest. Emaciated. We had to cancel her Botox injection this past week because of it and that's another setback. Her leg has gotten really tight lately and because of it she is falling down more. The Botox helps her leg not be so tight. Now we have to wait another month for that. We are back to doing breathing treatments several times a day and are pretty much feeding her as much as we can through the tube (without making her vomit -it's a tricky line) to get her to gain weight.

Stroking her hair tonight while I was pushing formula through her tube, I pulled up her nightgown and looked in horror at her tiny little ribs protruding through her skin. It's scary to be quite honest. It makes me so thankful and in awe of God's protection that she did not get this sick as an infant.  But now we face the fact that not only has she lost all the weight we worked so hard to gain, she has also stopped eating completely. She won't eat anything. I know she will eventually, but we are pretty much starting back at the beginning, or close to it. It will not be a few months now, but possibly another year, before we can think about getting her button out - not only to be certain she can eat enough, but we have to get her to gain a lot of weight and that takes time. (Please don't tell me that she'll gain the three pounds back quickly - Maggie is not like other healthy children and does not rebound like them either).

Anyways, I know I can't protect her from all germs, and now that she is older I have to let her be as normal as possible by going to school and group activities. But I wonder if all those things are worth the price we are paying now. I wonder. Because right now it sure doesn't seem like it.

Brings back memories

It's been awhile since we've had an ER visit. I guess Maggie was due for one. Poor little baby is sick and having trouble breathing. I made a quick jaunt to Little Rock this weekend. WhenJustin picked me up from the airport this morning I took one look at Maggie and knew something was not right with her breathing. It scared me so much we went straight to the ER.

We've been here for hours and she finally just curled up and went to sleep. It's moments like these I'll never forget about my tough little girl, who sticks out her finger for the pulseox and her arm for the blood pressure cuff like its second nature. Despite the trauma she's endured at the ER, she still complies.

I'm so proud of her.

Read my blog post at Dallas Moms Blog!

I was recently asked to be a guest writer for the wonderful website, Dallas Moms Blog. I enjoyed writing the post (link below) so much because it goes along with how I've tried to be more intentional with the the daily decisions I make as a mother.

I would appreciate it so much if you'd comment your thoughts on this topic on the Dallas Moms Website or "like" it on Facebook.

http://www.dallasmomsblog.org/how-i-became-the-editor-in-chief-of-my-home/

- Posted using BlogPress from my iPad

Update and Pictures!

Well it's been a wonderful and stressful three months since Neely arrived. Wonderful because she is the sweetest baby in the world (I've never had a "good" baby before who rarely cries- it's heaven!). And stressful because Maggie is, well, rather stressful.

For the first few months I put myself in a little bubble - trying to shield these precious moments I have with Neely from being robbed by the daily stress of our life. It worked for a while - we put some of Maggie's therapy on hold and gave her a break from her brace for a while and I thoroughly enjoyed the peace in our house.

But now I am back to real life and realizing that I can't escape from Maggie's issues forever. The countless doctors, therapists, orthotists continue- this time with baby in tow.

I'm sure having a new baby doesn't help this, but Maggie is really asserting her strong will. And when I say strong will, I mean STRONG WILL. I think James Dobson wrote his book about the strong-willed child with Maggie in mind! I know, I know - my mom says that Maggie has gotten as far as she has in life partially because of her strong will. I know that and thank God for her strong determination.

But she is really throwing me for a loop lately with her refusal to do what I say! I don't blame her because most of the stuff I'm asking her to do is not pleasurable: feeding therapy, stretching, strengthening exercises, tube feeding, and enduring her awful brace being snapped on. As one doctor put it, Maggie has a full time job being Maggie and three year olds aren't supposed to have full time jobs!

So I get it. I would be frustated and angry, too. But what do I do about it? As a mom of a child with a lot of needs you hear advice ranging from, "Oh just take a hiatus from therapy for a while to give her a break" to "it's the moms who push the hardest who see the biggest results when their kids are older." So where's the middle ground? I'm still in the process of figuring it out.

Anyways, we had our first vacation in years last week. We weren't able to travel during my pregnancy and Justin's been so busy with work, but finally we went to San Antonio with him last week. Maggie loves Free Willy so we knew Sea World would be fantastic for her - she absolutely loved it and so did Mary Lawrence. Neely was just along for the ride and was perfectly well-behaved.

Despite me getting sick, I have to say it was the happiest I've seen any of us in a long time. My girls were satisfied playing in the hotel room - not having any therapists or nurses bothering Maggie was a vacation in itself! But we enjoyed the zoo and other fun parts of the city, too.

(that's a tiger in the background-Maggie's favorite animal)

We also went to Little Rock recently and the girls had a blast with their cousins.

Trooper

Maggie has Botox and ear tubes this morning. I told her we were going to see Dr. Gul this morning and she knew right off what was going to happen. "I don't want to wear that mask." (that puts her to sleep). Predicting we might have the usual difficulty getting her to weigh, put on blood pressure cuff, and wear the absurdly gigantic hospital gown, I stopped by Target on the way here to get her another Toy Story figurine, which she promptly stuffed into her lunchbox with all her other ones.


She is the bravest and sweetest little girls I know...

10 years!

Who knew that the skinny soccer player with the long blond hair in 10th grade would one day be my husband? Never could I imagine the journeys we would get to take together in our 10 short years of marriage.

When we married 10 years ago, I thought things would turn out a lot differently. I
had my plans and Justin had his, but God's plan overruled. We didn't get to celebrate in Paris like we did on our honeymoon 10 years ago, instead we got something much better- a healthy, beautiful baby.

Thanks to my sister and brother- in-law for giving us the best gift of all- agreeing to take Lawrence and Maggie for the weekend. It was the first time I had ever been away from Maggie and, as terrible as it sounds, having a break (even with a newborn at home!) was the best gift anyone could have given me. Maggie did great as well and it was so good for her to have a holiday from me, too.

Welcome Neely Elizabeth!

We are so thankful for a healthy pregnancy, birth, and baby. I knew I would appreciate these first few weeks so much - but I totally underestimated how much! A combination of her being our third baby (we're more laid back!) as well as a healthy baby (not running across the house every time a heart or lung monitor goes off like we did with Maggie!) we are just sooo thankful and almost giddy. I want to soak in every minute and not miss a thing. I'm also fiercely protective ( will have to work on that!).

Neely was named after my sister, and Elizabeth we thought appropriate because it means "God's gift." When I was pregnant with Maggie we were told that if I moved forward with the pregnancy, there was a high chance I'd never be able to be pregnant again. We trusted God and He has blessed us beyond belief. She truly is a gift from Him!

Neely's big sisters are in love as well. Lawrence is so helpful and Maggie loves to hold Neely. We have a few jealousy issues but that's to be expected:)

Neely is eating great and gaining weight. I can't tell you how satisfying that is to me. So far she is so good and easy (could we be so blessed!?).

Christmas this year was extra special with a white Christmas day in Dallas. Girls liked playing in it for about five minutes and then were ready for hot chocolate!

37 weeks!

This is for all the moms who have experienced PPROM- you can go on to have a healthy pregnancy. 37 weeks and counting....

Big few weeks

Moved to the big girl bed- check!

No tears on her first day of preschool - check!

Loved her first ballet class - check!

Potty trained- well, sort of.

So proud of her!

Summer's Over!

Most people don't rejoice when summer comes to an end, but this year I am so glad fall is around the corner. Being pregnant and not allowed to exercise or pick up my children has been tough. Baylor Feeding therapy was hard on the whole family. Add the West Nile scare here in Dallas- whew! it was just too much!

But I rejoice most of all that I made it physically through this summer with little complications. I'm 23 weeks and feeling great (minus the creeping anxiety I'm always trying to bat away!) .

Mary Lawrence starts kindergarten this week- she is thrilled! Maggie is doing awesome with her feeding. The big news out of feeding "camp" was that she can, in fact, eat! Maybe not Bubba's fried chicken, but she can most definitely eat soups, purées, and drink her nutrient-formula. Although we also learned that while she can eat, she doesn't always oblige. So we are dealing with "behavioral" issues, according to the psychologist on staff.

So what's Baylor's magic solution for getting children to eat? Well we put her in the high chair 3-5 times a day and turn the timer on for 30 minutes. She cannot get down until the timer goes off, even if she refuses to eat anything the whole time. We feed her a combination of soups and , all while she plays with toys and watches tv. If she refuses to eat or spits out her food, we turn the tv off and take the toys away until she cooperates.

Yes, it's very manipulative and, yes, we have dealt with a lot of fits and toy throwing and head banging. But we've tried two years of different kinds of feeding therapy and this is the only one that has gotten her to swallow food.

The biggest revelation out of all of this is that this feeding stuff is not for wimps. I can't give in, I can't raise my voice or get frustrated. I have to stay even keeled the entire 30 minutes so she won't get "attention" from her fits. And we have to be diligent about doing it everyday. Frankly, it's much easier to feed her through the tube! It takes a lot of time, a lot of blending and preparation and a lot of cleanup. Plus we have to plan it between all her other therapy sessions and school and activities.

But as much as I vent about how hard it is, it's totally worth it if it means we can get her off tube feedings dependency. I keep thinking how nice it will be when I have a new baby when I can sit both girls at their table and feed them both the same ( and simple) foods for lunch. Sounds so silly, but it will make such a difference in my life:)

"Feeding Camp"

I tried to make her feeding therapy sound fun, like ML's gymnastics and art camps, but Maggie is no fool. She says every morning that she does not want to go to feeding camp. I don't blame her.

Last week all they worked on was putting a dry spoon in her mouth. The first day she refused and screamed and gagged, but by the end of the week she was putting it her in mouth with a dab of chicken noodle soup on it. Baby steps, right?

At her evaluation a month ago Maggie only sipped out of a straw twice, which is normal for her. "Well," the therapist said with total conviction, "she just doesn't have the muscle strength to suck more than two sips." Ok, makes sense.

Well last Wednesday, as she was groggily coming out of her anesthesia for Botox, she slurped down two juice boxes! (She was so thirsty from not eating or drinking for 15 hours). Good to know she has some survival instincts!

When I told the therapist about it she said, "Well, now we know it's not a muscle issue, it's totally behavioral." It just goes to show (once again) that often we get the wrong answer before we get the correct one.

The Botox went well and we are actively stretching and strengthening her neck, shoulders, and leg. She now wears a brace on her right leg all the time- the poor child garners much pity when we are out in public!

Maggie hates the stretching. We have to coax or bribe her to do it. Yesterday my heart broke when she finally crawled into the nurse's lap to stretch, succumbing to the torture, saying to me, "It'll make my neck straight." I started crying immediately. She totally gets it. I sure hope I haven't given this child a terrible complex about all this...

Four more weeks of feeding camp and praying for good results!