Ng tube

Went to the doctor and therapist yesterday. It was really my idea to try another ng tube. I told them both that I feel like Maggie is getting more stressed out when we feed her. And maybe if we tried a ng tube for a solid three weeks it might relieve some of her stress. We are still going to feed her as often. But instead of pushing her to eat when she doesn't want to, we are going to offer it a few times and let her take as much as she will. And then when she starts to protest we are going to put the rest though the tube.

My biggest reason for doing this is that I am so scared that if we push her anymore she is going to develop a major oral aversion and not want anything in her mouth - bottle, solid foods, anything. So this will give her a break for a few weeks and then we will start solid foods when she hits six months adjusted. My prayer is that she will love solid foods and the textures won't even be an issue for her. If we can get her to eat solid foods and manage the bottle feeding as we have been, I think we can avoid the G-tube. Or at least that's my hope.

Yesterday I learned how to place the ng tube down her nose and into her stomach and, I have to say, it's pretty awful to do it while she gags and cries. I feel I am now playing nurse like I did when I was a child, with all the syringes and tubes and stethoscope (to check to make sure the tube didn't get into her lungs). I am doing all this serious stuff but I really have no idea what I'm doing. This morning I pushed two ounces of milk into the tube in the dark and didn't realize until daylight that I didn't push it down correctly and it went all over her bed and her legs. Poor thing! Sometimes I can't believe they let parents do all of this...

PS I'm still collecting "like new" stuffed animals and any DVDs for Our Children's House at Baylor. Drop them off at my house anytime!

Update

Funny that something so simple like the sound of a Maggie sucking on an empty bottle is the best possible thing I could hear right now. I don't get to hear it often, but when I do it just makes my day because it means she finished her whole bottle. Earlier in the week I was hearing it quite often. And was so elated to hear at her Tuesday weight check that she had gained 3 ounces in 5 days! Woo hoo!

Then, funny thing, she stopped eating again. And the next two days were horrendous. I know it sounds like I'm always Debbie Downer but it was just so discouraging because I just had it as a goal in my head that we could make it a whole week of meeting her daily requirement. But it just didn't happen. Thursday's weight check showed she lost two ounces of those three ounces. Dum, dum, dum.

"It's okay," I told myself. "We can get back on track. We have before." Well guess who woke up with thick, green mucus running down her nose on Friday. Unbelievable. Mary Lawrence started summer camp this week and so she must have brought something home (why did I think summer meant Maggie couldn't get sick?). So now eating is even harder. And all I can think about is our checkup on Tuesday and if she lost weight the doctor is definitely going to push the G-tube. Again, it's so frustrating, because I know she can eat. If we lived in a perfect "Maggie World" of no distraction, no germs, no injured husband, no extracurricular activities, no reflux, I swear she would eat...

Oh and as far as the "injured husband" thing, poor Justin threw out his back again and Saturday morning he couldn't even move off the hardwood floor he was attempting to sleep on. After a trip to the ER and a desperate call to his mom to ask her to come help (because I can't seem to be able to take care of my two children, yet alone a husband that can't move) we are at the tail end of another fun weeekend at the Cordon household.

Anyways, sorry to be so depressing. It's generally not my personality, I promise. I really want to do everything with joy and love and good cheer. And I want to praise God for all circumstances. But today I'm kind of down about it all. It's not like I really wish we were on some fabulous summer vacation or at the pool most of the day like other families. I really don't care about those things. All I want is my baby to eat and for my family to be healthy and happy.

How to help!!

Okay, all Dallas-area friends I have a need and I am asking for your help. So many people have asked us how they can help and although there is not a ton you can do for us, there is something small, but wonderful you can do for the hospital that we have come to love so much....

At Baylor there is a little treasure of a hospital named Our Children's House. If you have been to Baylor hospital downtown you have probably never even noticed the large Victorian-style house on the corner of Hall and Swiss. It goes quietly unnoticed, but so many wonderful things do go on inside. It was started in 1993 to be a "technologically-advanced hospital in a home-like environment that provides coordinated, comprehensive services to children with special health care needs." They have babies and children on vents, severely injured children trying to rehabilitate with intensive therapy, babies and toddlers with major feeding issues, and many spinal cord and brain injury patients. They also have an awesome outpatient therapy program where we do all of our occupational, physical and speech therapy.

Anyways, while we Maggie was a patient I asked the Child Life specialists what their needs were because I know my resourceful and willing friends would want to help.  I was told of three needs they have:

1. Stuffed Animals - The Child Life staff gives each child that comes in a stuffed animal and currently they are really running low. For example, many children come in for dental surgery (at like two years old!) because their parents didn't care for their teeth or what they ate. These children, many of whom have may never been to a doctor or dentist, are terrified of course, they are given a stuffed animal to comfort them while they are patients. Furthermore, there are many children who do not have families that visit for various reasons - perhaps they are full-time working single parents or maybe they were taken away from their families by Child Protective Services because of dangerous circumstances and so it is nice if they get a toy or something of comfort to take with them wherever they may go after their hospital stay (many will go to foster care). Anyway, I know that I have a ton of stuffed animals never used by Mary Lawrence up in my attic so I know other moms must, too. And I thought this would be a fun way to clean out your toys and know that they are going to a good cause!

2. DVD players, Game systems - While we were at the hospital, the staff offered to bring in a DVD player to hook up to the DVD so Mary Lawrence could watch some movies. They tried two different DVD players and two different Playstations and all four were broken! So if you have a DVD player with a remote or an old game system your husband doesn't want anymore with games, they'll love those, too! Many of these children don't get out of the bed so this is a great way for them to have some entertainment. They only have a few for the whole floor so they definitely could use some more.

3. DVDs - If you have any extra DVDs you don't want for children or adults (parents need distractions, too!) or want to pick one up out of the $5 bin at Target this week that would also be much appreciated.

If you have any of these things and want to drop them off at my house, please do anytime this week or next. Someone will be here all day and, if not, leave on the front porch, and someone will be home shortly. If you don't know my address send me an email or facebook message and I will let you know. And if you can't stop by my house, I will come to your house and pick up anything - just let me know!  And if you are out of town and want to send some stuffed animals or DVDs in the mail I'd love that, too!

Thanks so much for helping us give back to a place that has helped us so much!

Some photos of our summer so far...

No major update here. Some days are good and some days are frustrating. Well actually all days are frustrating, but at least some of those hard days yield good results! But here are some pictures from the past month or so -

At the hospital - happiest baby ever

Hanging out with Daddy in the hospital room

Our little bumble bee had her first ballet recital while Maggie was in the hospital

Although we were convinced she wouldn't even walk out on the stage, she did and loved dancing in front of all those people... 

Our first big outing this summer - to the Farmer's Market!

We've also made it to the pool once or twice...

and Maggie rests under the tree with me while Daddy swims with ML.

A better weekend

After a rough week last week and feeling hopeless again, Maggie turned a corner on Friday and started eating nearly all of her feedings so we didn't have to do the nose (ng) tube. We took her to see her pediatrician (the first time since we left the hospital) and he was not as focused on Maggie's weight - unlike the dietitians and therapists - but more focused on her brain development and that seems to be fine right now.

He also sat me down and said he was much more concerned about me right now than he was with Maggie and that's why he wants to put in a g-tube if her feeding doesn't get more consistent soon. I told him I don't want my stress level to be the reason she gets a g-tube. That just doesn't seem right. But he is genuinely worried about our family, how this stress affects Mary Lawrence, and, most of all, my mental health. I guess it's a good thing that we have such a wonderful doctor that cares about what's best for our family, but I am not going to let my stress level be the determining factor in whether or not she gets a g-tube. At least not right now.

Thank you for your continued prayers for Maggie and our family right now. I am so thankful for a better few days. It really helps to keep me going!

For Sanity's Sake

We don't take Maggie out much because inevitably some stranger comes and peeks their head into her carrier and we start panicking about germs. But since it's summer and we desperately need some normalcy, we have ventured out a little more often with her. Tonight at dinner someone asked me how old Maggie was. "Let me guess," she said,"about six weeks old?"

Now I am surprised at myself that I didn't burst into tears, because, honestly, it's personal. But I didn't. I guess I am kind of over the whole idea in my head that Maggie needs to be a chubby, healthy baby in the long line of Wooten babies that came before her. She's just not going to be that baby. And that's okay, although it is slightly deperessing that she is barely into 0-3 months clothing. I keep telling myself that one day when she's 5'9 and healthy and athletic we will be amazed that once she was this tiny little baby struggling to thrive, right?!

Anyways, last week we were so encouraged because for several days in a row she took every single bottle - and while she was awake! But then the weekend came and something threw her off her routine and she just never got back on. She gained a litlte weight last week but didn't gain any this week so we'll probably try another ng tube again tomorrow. First time to have one at home...which makes me nervous but I know it needs to be done.

The thing that is so maddening with Maggie is that I have seen her do so well and so when she doesn't do well, I just rack my brain to try and figure out why. What did I do differently this time? Did I have her tilted too upright? Should I have not pushed her too much? Maybe last time I faced her toward the wall instead of toward the bed- maybe that was why she didn't eat?  When I go in to feed her, Justin never knows what to expect when I come out. Will I be in tears? Will I throw the full bottle in the sink with an angry force? Will I be jumping for joy and squeezing Maggie tightly? You just never know.

I keep praying that Maggie will dramatically improve. I keep telling God, "it's for my own sanity, Lord!" But He knows where I am and what I need. I just cannot cease to keep asking him for His strength, His self-control, His patience. Because I surely cannot do this on my own.

Sensory Processing Disorder

Maggie kind of reminds me of Dori in Finding Nemo. She doesn't suffer from short-term memory loss, but she is always wide-eyed and entranced by the world around her. She is jolly and easy-going like Dori, but can't focus on one thing for very long, especially if it is something that requires a lot of focus like eating. She might do it for a little while - but then something else catches her attention and it's like she's thinking: ooh there's a big light in the corner of the room I want to stare at or wow, who is that other small person making all that noise across the room?

You might compare it to ADHD or something similar but it's not. Maggie's issues are sensory in nature and, although it's hard to diagnose in babies, most likely she has sensory processing disorder. Also know as sensory integration, SPD is when a child cannot process their senses properly. Here is how the SPD Foundation describes it as:

"Sensory Processing Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. It's like a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. Other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed - and inappropriately medicated - for ADHD."

Maggie finds it difficult to eat like a normal baby because she is constantly in alert mode - looking at every light, turning her head toward every noise. Most likely she has these issues because her sensory nervous system was not developed fully when she was born three months early. After all, her eyes were exposed to bright hospital lights when they were still supposed to be seeing only dark, her ears heard loud buzzing and beeping alarms  before they were supposed to hear, and her skin was poked by needles and squeezed by blood pressure cuffs before it was supposed to be touched. So it makes sense that she her sensory system would be a little out of whack. Not all preemies have major sensory issues like Maggie does, but most of them do show some signs of them.

When this all started a few months ago I was feeding Maggie in the den with Mary Lawrence often right there beside me, frolicking around or making normal child noises playing with her toys. Pretty normal for most newborns who have older siblings. Well in Maggie's case I might as well have been feeding her smack in the middle of a SEC football game. Every noise, every movement, every light around her is amplified in her little mind. So of course she cannot sit still and eat; she's too overwhelmed by the world around her. It takes a lot of focus and organization to still sit and suck, swallow, and breathe all at the same time, but it is especially difficult when how you process the senses all around you is different from other babies.

As time went on we eventually learned that it helped sometimes if we fed her while he was tightly swaddled in a dark room with little distraction. Those techniques we learned help her feel "organized."  That term "organized" is used a lot by the occupational therapists who deal with sensory issues. Maggie has to feel "together" and "organized" to be able to perform a task like eating. You know how you feel when you step on something gross or slimy like a worm? You maybe scream or jump up and down or wiggle your shoulders trying to shake off that yucky feeling. It takes you a while to kind of get yourself together and be able to go on with whatever task you were doing. It is sort of similar with Maggie. She needs to get her body feeling together and organized so she can eat.

Now there are people out there who are skeptical of this whole disorder. They say it is all behavioral and you can't prove that someones nervous system is developed properly or not. Well, I might think that, too, if I didn't have my experience with Mary Lawrence. Yes, Mary Lawrence has was diagnosed with SPD about a year and a half ago. (I know you must be thinking what is wrong with her children?)

Children with sensory issues are either sensory-seeking or sensory-avoiding. Mary Lawrence was definitely sensory avoiding. In my "A Crying Wish" blog from October I talked about how Mary Lawrence cried all of the time as an infant. Every time I changed her diaper or put her in the bathtub or snapped her in the car seat, it was like I was torturing her. As she got into her toddler years, I noticed that textures were a big issue for her. She wouldn't touch finger paints or if her hands got sticky from eating syrup on her pancakes she would have a crying meltdown. Bath time every single night for nearly three years was a nightmare because transitions were so hard for. Going from being warmly clothed to being bare-skinned and exposed to colder air was sometimes unbearable for her. I was never been able to put lotion on her and only used diaper cream if absolutely necessary because she screamed so hard you might as well think I was rubbing hot coals on her.  Social situations were also tense.  Mary Lawrence would just cling to me and cry or want to stand a comfortable distance away from the party goers. It's not that she was shy, but sometimes the noise and the action was just too overwhelming for her. For a year and a half I was so disturbed and kept asking my doctor about it, but he just said it was because she was stubborn. But I knew in my heart that something else was going on.

When I finally learned about SPD, it all clicked. All of these sensations were too much for her. Someone likened it to how normal people hate the sound of fingernails going down a chalkboard. For Mary Lawrence, every day sensations were like that for her. On top of that, she was a delayed talker and wasn't able to communicate with me how she was feeling. So she was feeling totally out of control and completely frustrated for not being able to tell me about it on top of that.

At first I didn't want to tell anyone that Mary Lawrence had it because I didn't know what it meant. I thought it meant she might have a learning disorder or may not be like other children. But the more I learned about it, and the more I saw children at therapy who also had this, I realized it is better to talk about than not. Who knows -  maybe help another mother out there is going through something similar. You see the first two years of Mary Lawrence's life were much more difficult for me mentally that right now, because I felt I was doing something wrong as a mother to have a child acted so differently and cried all of the time. Moreover, I didn't know what I was dealing with like I do now. Doctors told me it was a discipline issue. Others told me it was "just a phase." Justin would often come home from work to see me in tears because Mary Lawrence cried most of the day and I had no idea why. It was a really hard time to say the least!


Thankfully Mary Lawrence had great therapists to help her learn how to manage her sensory issues and today she is almost like a different child. Two years ago I thought she was a difficult child that was rarely happy. Now I realize that her personality is actually very sweet and happy, but it was her sensory issues were preventing her from being the child she really was. I am so glad that we realized what it is was at a young age because unfortunately most people don't realize that their children have sensory issues until they are much older. And once children are in their school years it becomes harder to manage and can sometimes affect a child's learning potential.

As for Maggie, we are doing lots of exercises, infant massage, and joint compressions that make her feel more together and "organized." I asked when she will grow out of these issues and when we can begin to feed her as we watch t.v. or take her to a restaurant, but they don't know. It could be an issue that lasts throughout childhood or she may overcome her issues early on. But for now the most important thing is that she eats, and if low stimulation and complete darkness sometimes allow for her to have successful eating, then we will do it as long as we need to.

You can read more about sensory disorders at the link on my homepage. I definitely am not an expert; I just wanted to share our experience.

New Strategy

New Strategy : Keep Maggie awake until she is really tired and then put her to sleep, only to wake her up 10 minutes later to feed her.

We know this is not realistic long term, but we are desperate. And since her most successful feeding is while she is asleep, this is what we have been doing the past few days. It's just a short-term solution while we work in outpatient therapy to get her to eat like a normal baby.

We went today to her first appointment and - no surprise but still a big disappointment - she did not gain weight. Mr. Half-Full (that's Justin) would say "at least she didn't lose weight." Which is true, but I still  long for the  numbers on that scale to keep creeping up.

Still praying for something to click in Maggie so she will eat like a normal baby, or for Justin and I to learn how to get her to eat successfully despite her issues.