Friday, April 26, 2013


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.


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!

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Thursday, April 25, 2013

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.

Wednesday, April 17, 2013

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.

Sunday, April 14, 2013

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.

Sunday, April 7, 2013

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.