Poor babies!

Before I had children I could not function unless I had a good 9-10 hours of sleep. No joke. I couldn't hold my eyes open past 10 o'clock and would easily sleep until 7 the next morning. I remember thinking, "how in the world am I going to survive those first few months of motherhood when my baby wakes up all through the night to eat?" Ha! How naive I was to think that the sleep deprivation only lasted a few months! I haven't slept through the night in over a year. But you know what? I am just fine. Tired, yes, but I'm still able to do my job as a mother. Pretty cool how God really does give women the strength we need to take of our children despite our fatigue. Lord knows most men couldn't do what we do for more than a few days! (just kidding, hub).

Speaking of fatigue, right now it's 5 am and I'm laying in Mary lawrence's trundle bed. She's thrown up about 12 times throughout the night so I figured it'd be easier if I just stayed in here with a bowl at my side so maybe, just maybe I won't have to keep changing her sheets. I am so tired but my mind cannot clear enough so I can sleep in between these 25 minute throw-up intervals. Probably because I am making myself sick thinking about what will happen if Maggie gets this stomach virus. It would be really bad and I'm so mad at myself for not washing Maggie's hands yesterday after ML got home from Little Rock and touched her. I'm usually so good about that. Now all I can think about is how I'm going to keep this three year old quarantined in her room tomorrow. And what I am going to do if our poor baby starts vomiting when her little stomach is already hurting so much.

Praying for a quick recovery for my little angel....and for strength to make it through what's looking to be like a long day.


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Going Home

Maggie had a really good night and is now taking full feeds through her tube. Her stomach looks really good and she hasn't had any vomiting (something that happens often with g-tube placement). So we are going home this afternoon! I am so thankful for that everything has gone fairly smoothly and now we just have to  watch to make sure the area around her button heals properly and does not get infected.

Thank you to everyone who prayed us through this hospital stay. We are so blessed to have such committed friends and family.

More Drugs, Less Clowns Please

Maggie is doing much better today. Thank you for praying. Yesterday she was in rough shape. I told my mom that it's different when you are watching your baby in the NICU because they are so small they don't really cry or show much pain. Yesterday was much harder. Maggie looked at me in tears as if to say, Help me!" It just broke our hearts to see her hurting.

The only hiccups we've had is that yesterday the NP was really hesitant to give her morphine because of her lung issues, but I kept insisting that she was in pain and needed more than Tylenol and ibuprofen. (They gave her codeine in the recovery room but the rest of the afternoon was just the Tylenol and ibuprofen.) I'm sorry, I know I am not a doctor, but if I had stomach surgery I think I would need more than over-the-counter meds. The child was screaming all day and the NP kept insisting it was just her waking up from anesthesia. Maybe so, but I know my own child and I have learned to trust my instincts and they were right on this one (with a little encouragement from my doc sis-in-law). By four pm I guess I had harassed them enough that they started giving her morphine every two hours and when the surgeon came in this morning he couldn't believe they didn't give her any all day yesterday. So that was upsetting to say the least. But she's happy now and I'm glad that all our hospital experiences have taught us to really stick up for your child, even if you get push back from the staff. Because in the end we were right - she needed more meds. And she was much happier for it!

Second, and this is kind of funny and tragic at the same time, after we met with the surgeon post operation, we were sent back in to the waiting room until we would be called back to Maggie's room. They said it might take 30 minutes or so. But an hour passed and I got nervous and Justin went and asked the person at the desk what was going on. They called up to recovery who told them Maggie had been awake for 20 minutes screaming. They said they sent someone down but since there wasn't any staff at the desk, they didn't call for us. So we rush up to the recovery room and find Maggie writhing in pain. And to make matters worse, standing over this poor baby was none other than the resident hospital clown , who was making silly faces and singing loudly in an attempt to calm her down. I mean, seriously? You can go find the clown but you can't find her parents who are sitting in the waiting room with baited breath? Oh well. If in a few years Maggie screams horrifically at the sight of a clown, we will all know why...

Besides that, this is a wonderful hospital, I promise. Our hospital expereinces have also taught us that there are incompetent people at every hospital and that they shouldn't take away from the really wonderful and talented people that do work there. We have had great nurses and the NP (nurse practitioner) is much better today. Everything is so extremely organized and coordinated which of course I like. They have these wound ostomy nurses that come teach us how to care for her button and how to feed her. And we are very blessed that God led us to such a respected pediatric surgeon. If anyone ever needs a general surgeon for their child, Dr. Murphy is incredible. I can't tell you how many people have told us how great it is that he was our surgeon.

We are near the Troy Aikman wing where there is a huge playroom with video games and Foosball, and a whole hallway of all this Dallas Cowboy memorabilia. Mary Lawrence would love it all but she's in Little Rock all week with her grandparents. And there are these volunteers (mostly endearing old ladies) who come ask you what your needs are and push around a toy cart and hand out toys and activities to the older children. It's really neat to see what all they have going on here and how they serve the families who are going through difficult times. As much as I have an aversion to hospitals, I am so thankful that they are so wonderful to my child.

I took this video a few hours ago - you can see she is feeling much better. She learned how to wave "Bye Bye" last week so she likes to do it all time. I don't want to be an obnoxious mother who thinks every little thing her child does makes him or her a genius, but I can't help being so proud of her. A milestone so insignificant to most is so huge to us:

Surgery Over!

Maggie's surgery went well- so thank you so much for praying. The only complication was that it took them a long time to get her sedated because they couldn't get the IV in so she has little prick marks all over her hands and arms. (Reminds me of when I was in the hospital and four different nurses and NPs tried to stick me until finally the anesthesiologist had to be paged to do it). Other than that, the button was placed and her lungs did great so that's an answered prayer.

However, she has been in more post-op pain than I thought she would be. I thouggt they would give her a lot of pain meds to keep her comfortable but she's definitely not comfortable and they don't want to give her any more morphine cause of her CLD, I think because it can cause respiratory distress. But it's been really hard to watch her suffer and I haven't been able to comfort her very well.

We will probably be here 2-3 days depending on how well she heals. We also will have some education on how to care for her button and wound; it takes about 8 weeks to heal completely.

Poor little baby is so sweet just laying here in her hospital bed, waking herself up every few minutes to cry or moan. I just can't wait to take her home....


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Waiting ...

Maggie and her daddy waiting





Right before she went back...







We just saw her into the OR, and now are in the waiting room - it should take an hour or so.

Thanks for praying for a complication- free surgery.

"That feeling"

I've had "that feeling" in my stomach all day. That nervous, butterfly-ridden feeling I got when I was younger when something big was about to occur - like starting a new school or waking up at four am to get on a bus for my first overnight class trip. Or the night before I had to leave my grandparents after two weeks with them at Christmas Break, knowing I wouldn't see them for several months. When my sister and I were anxious about something as children - and it often happened when it got dark outside - we would tell my mom we had "that feeling" and she knew exactly what that meant. And she knew exactly how to make us feel better.

I tried to hide the fact that I still got "that feeling" as I got older, but it still came with the big things in life. I definitely felt like throwing up the morning my parents drove away from the Vandy parking lot, leaving me at college for the first time. I had it laying in the hospital bed in the hours leading up to our first daughter's birth. And I had it just yesterday as I stared for hours at the huge pile of beautiful clothes on my bed. They were not my clothes but my friend Anne's whose mother sweetly gave them to me because we are the same size. But I couldn't help feeling like I just wanted to throw up as I carefully put them away in my closet. This is just not right, is what I kept thinking. Pit in my stomach - check....

The other day I asked Justin if he got that feeling growing up. "Nope," he said. I wonder if it's a girl thing, or just a me thing. I don't know, but I definitely feel it right now as I think about them wheeling my little baby into the operating room tomorrow morning. Although I keep telling everyone that this is routine and everything should go fine, who am I kidding? This is my child, and no matter how routine or uncomplicated the surgery is, it is still surgery and they are still cutting my daughter's perfectly formed stomach and sticking a plastic button in there. I am so thankful they can do this, but it still is hard to give them permission to proceed...

I have been praying over Maggie all day, asking God to protect her and keep her strong and healthy through the surgery. As it gets dark tonight and "that feeling" starts to take hold, I will remember this verse:

"Arise, cry out in the night, as the watches of the night begin; pour out your heart like water in the presence of the Lord. Lift up your hands to him for the lives of your children..." Lamentations 2:19



Here are our specific prayer requests if you think about her at 8:15 in the morning:

-Because she has Chronic Lung Disease she is at increased risk for asthma attacks or breathing complications while she is under anesthesia. Pray that she has neither, and that her body will remain healthy and strong through the surgery
-For the surgeon, Dr. Murphy, to do a perfect job
-for a quick healing around the "button" and a quick overall recovery.

Thank you to all for keeping up with us - it means so much!

VACATION!!

We feel so blessed to have spent two weeks at the beach for some much needed family time before Maggie's surgery this coming Wednesday. It was so much fun for us all to be together without any of our normal stress. Maggie's former NICU nurse came to help us out for part of the trip and the girls just adore her (and so do we!). Oil-free beaches, crystal clear water, and 85 degrees - it couldn't have been more perfect!

Helmet time!

It took a few days for Maggie to get used to the helmut (or "band" as they call it). Besides smelling horrendous (poor thing sweats profusely in the thing) it's really not that bad. She has to wear it 23 hours a day, the 24th hour we can give her a bath and wash the inside of the helmut out.

I've had a few curious people brave enough to ask me what's up with the helmut - so I guess I'll explain it here, too. Some parts of her head are flat from a combination of not having fluid and being pressed up against me, and also being positioned the same way in the NICU everyday. The reason it is open on the right side of her head is to let that "flat" part fill in while keeping the left side put, since that part bulges a little. It's the same thing in the back of her head. We will go in every week or two and they'll shave out the inside of the helmut to keep up with her growth. Hopefully she'll only have to wear it 10-12 weeks, maybe more, depending on how diligent we are at keeping it on.

I bought some stickers to decorate it but I'm not as creative as some other moms who paint, decoupage, or stencil stuff onto it. We'll see...she already looks so cute in it - but I definitely need to jazz it up a bit!

The only thing difficult is getting her clothes on and off over her head. Last night was not my best mothering moment (you could say it was downright cruel) because it was late- I was exhausted and she was fussy - and I was trying to change her out of a onesie she had spit up on. It was dark in the room and I tried to do it too quickly. I thought the onesie was stuck on her helmut or something because I couldn't slip it off very easily. I kept tugging, harder and harder, thinking it just had a small neck opening. Finally it pulled off with such a force that it slapped me in the face as I heard a terrible ripping sound followed by uncontrollable shrieking. Um, yes, the reason she doesn't have a ng tube in this picture is because her mother ripped it out of her while impatiently removing her onesie. (I guess I didnt't consider the tube could be what was caught- duh.)

I stood still in shock as the tube dangled from my hand last night, too afraid to turn the light on to see what damage I had caused. When I did, I realized the tearing sound was the tape I ripped off her cheek along with the tube, which is completely raw right now. I felt so bad and was so worried all night long that I had hurt her or her stomach. But she is fine ( thank you God for protecting her from her incompetent mother). But I just thought we'd leave the tube out for today just to give the poor baby a break...


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Torture all around...

In addition to our usual six therapy appointments and one weight check this week, we also have an appointment tomorrow to get her helmet fitted, a doctor's appointment for ML on Friday, and two pre-op surgery appointments for Maggie, whose surgery is thankfully now scheduled for September 1st.

Yesterday was her appointment with the radiologist to do an upper GI study to make sure as the surgeon said, "her stomach is in the correct place when I cut her open". When I made the appointment the scheduler told me not to feed her after 5 am the day of the procedure. Note to self: make a note to self to remind self of this important matter,otherwise you will be stuck watching back-to-back episodes of Hannah Montana in the radiology waiting room surrounded by screaming children (including your own)for two hours until enough time has passed to do the procedure.

Also, why didn't anyone tell me that an "Upper GI Study" is so awful that it would be an effective torture device against our terrorist enemies? At first I thought it was so cute when they straightened her legs and strapped them down on the gurney. She was cooing and smiling  - she looked so sweet and little that I took a picture of her:

But then the stretched her arms above her head, strapped them down and levitated her up in the air and started jamming a tube down her nose and into her esophagus and stomach. I could see on the screen the tube moving all around her upper gi organs - the whole time Maggie was gagging and screaming. But it gets worse - the table she was on rotates (see that blue circle) so the whole time the radiologist is flipping her all around trying to get different angles. I told Justin she reminded me of a rotisserie chicken on one of those rotating ovens you see at Costco. And it didn't last a few minutes. The  horrific screaming lasted over 30 minutes as I stood watching helplessly in the corner.

And today we were back at Children's Hospital for another pre-op appointment. The anesthesiologists have to do a physical on her to make sure she is okay for surgery.  You would think the child has had more than enough tests to give them complete medical information, but no, I had to sit there for 30 minutes and go through her medical history from bed rest on (which I have already told to about 40 people at the hospital but oh well).

So I have no idea what a physical on a nine month old entails (they didn't, as Justin suggested, strap a sweatband on her and make her run on a treadmill) because they took her temperature and I found out it was 101.3.  I had no idea! Of course the guilt kicked in, and I started babbling about how she didn't have any other symptoms and maybe it was the car seat making her hot. After all, it is 103 degrees in Dallas today and I am dragging this poor baby all over the place. I asked them to try another thermometer beause those temporal scanners are so inaccurate. But the hospital office didn't even have an old-fashioned thermometer so we tried three different temporal scanners. Two said 99.9 and one said 101.3. The nurses and NP debated for 30 minutes whether or not they should do the physical or reschedule.(If it turns out she has an infection the physical is rendered obsolete and we'd have to do it again anyway). Finally they said they would just go ahead and do the physical - but at that point I only had 15 minutes before I had to leave to pick ML up at camp, so we had to reschedule anyway. Bummer. But I did ask the Nurse Practitioner to at least check her ears to make sure she doesn't have an ear infection (which she didn't).

I also asked her to look at this red spot that has appeared between her eyes on the bridge of her nose last week. At first I thought she scratched herself or maybe the tape from the ng tube irritated her nose. But it hasn't gone away. So I started getting paranoid it was another hemangioma. She has one on her right cheek that appeared a few weeks after birth. You've probably seen a baby with one and wondered what it was and were scared to keep looking at the large growth on the child's skin because you were worried you would offend the mother (trust me, they are used to it, you are not going to offend them and you don't have to pretend it's not there either). Anyway, let me educate on what a hemangioma is because I had never heard of them before Maggie: it is not a birthmark, but a vascular thing, sort of like a blood vessel on the outside of the skin. Girls, preemies, children on oxygen, are all at higher risk for them. Someone told me that trauma at birth can also cause them. Check, check, and more checks for us then!

Thankfully Maggie's on her cheek is just a "strawberry hemangioma," meaning it will stay small for a year or two and then disappear completely. Other kinds, however, can continue to grow and can be as large as a baseball or can grow all over a child's skin. We went to a pediatric dermatologist several times to make sure it was the smaller kind and she watched and measured it and determined that it's not going to get any bigger. So when I saw this new thing on her nose, I started freaking out that it's another one (I mean this week has been tough enough - I don't have the energy to focus on one more thing). And no matter how superficial it is, I just don't want her to have this huge growth on her face. I can deal with a little thing that will go away eventually, but I just can't deal with a huge growth that covers her face. (I know, I know, I am overreacting but it's just the state I am in right now!) Anyways, the NP told us to go back to the pediatric dermatologist again because if it is something other than the strawberry hemangioma, they may have to give her something to treat it - which basically means add multiple more appointments to our crazy schedule. Ugh!

So I left that disaster of an appointment and because I left my stroller in the driveway I had to run with the car seat carrier banging against my already bruised thighs. I raced through the lobby and across the steaming parking lot, sped to school, and found her Mary Lawrence all alone with her teacher waiting for her mommy. No big deal, you say. But it is to me. I am so worried she feels like Maggie is more important than her. Besides, something is definitely going on with Mary Lawrence this week because she has completely reverted back to "holding" you-know-what. (If you don't know what, look back at my older posts!) And that stresses me out beyond belief because I have had to give her extra Miralax so she can't "hold" it, which makes her leak you-know-what, which makes her technically not potty trained, which makes the whole starting preschool thing in a few weeks a little stressful. And she no doubt senses my stress and so, yes, it's a vicious cycle.

Needless to say, it is only Wednesday and I already want to take an emergency chute out of this week! Sometimes I think it'd be so much easier to escape under the covers of a deep depression than to deal head on with what I deal with on a daily basis. But my children's well-being and health are infinitely more important than my own self-pity. Like other moms, I have no choice but to keep marching on...but hopefully it will be with a more joyful heart in the future:)

Update: Maggie does not have a temperature on any of my thermometers Could it be that the combination of extreme heat and the car seat carrier raised her temperature? If so that is really scary...

recent pics

Our little patriot at the 4th of July of parade.

At first, she hated the sleepy wrap (I think cause she was so small) but now she loves it!It is a great replacement if you don't want to use a sling anymore. And can be worn many different snuggly ways,

Is this a problem???

First trip to the movies, Toy Story 2 - and she lasted the whole time. Maggie, on the other hand, last 10 minutes.

The OT made this neck mold that straps on her shoulder and under her arm. It helps her strengthen the left side of her neck and body so she can hold her head up better.She won't be able to sit up by herself until we get this neck thing worked out!

Wearing my dress that I had when I was her age...

Getting fitted for her helmet - pretty neat how they do it with a 360 degree camera instead of a clay mold like they used to!

Our little cap burglar! I swiped one of these caps they used to keep her hair down while they took  the picutre because I just had to show Justin how hilarious she looked. I know, I know, it's cruel of me to do that to her, but I swear she did not even cry when we put it on. She's so used to annoying these poking and prodding her, this is nothing. (By the way, that's Justin's wallet on her lap to give people a sense of how big - or small!- she is.)

ML had "Zoo camp" this week and loved it...

Sweet sisters....

PPROM - one year ago...

A little over a year ago in mid-July life was pretty good. I was 13 weeks pregnant and confident that I wouldn't miscarry again. I was feeling like I could get out be more confident about picking my two year old up and taking walks and other stuff that you only become paranoid about after you experience miscarriage. I had playgroup at my house that Friday before my water "broke" and I remember a friend saying how the risks of anything happening after 13 weeks was so slim. I knew she was right because I, too, had read all those statistics. That weekend we had friends come stay with us and we had a great time - went to the pool, had a cookout, went maternity shopping - I was so happy to even be showing a little bit.

That Sunday I woke up not feeling great. A little off somehow, but I couldn't really put my finger on it. But we went to church anyway and saw many friends who congratulated us on our pregnancy (after all, we had just started telling people). I came home and we crazily contemplated taking Mary Lawrence to "Dora, Live" that night, but I told Justin that I was feeling really tired. So he decided to go to the office for a few hours that afternoon and I slept for several hours while Mary Lawrence napped. I remember feeling so fatigued I could barely hold my eyes open. But I just told myself we had been a little too busy lately and I just needed to rest.

Around 5 o'clock I decided to take Mary Lawrence on a walk down the street. It was hot and I don't know why I thought that was a good idea. She pushed her baby stroller and I walked behind her. I has been feeling nauseous all week (good pregnancy sign - check!) and started feeling that way again. The next thing I knew I was bent over, vomiting all over the sidewalk. Not a pretty sight! And even though I thought it was strange that I just now started feeling nauseous at week 13, I reminded myself that nausea was a good sign that everything was "working correctly.' We were about a block from home when  ML decided she didn't want to walk anymore, and started screaming and crying for me to hold her. I didn't want to, but I had no choice as she wouldn't get off the sidewalk she was laying on. So I picked her and the toy stroller up and walked the length of six or seven houses until, thankfully, Justin drove up and we all got in his car.

I went to sleep early that night but woke up about 2 am to go to the bathroom and that's when I saw some watery blood come out. I panicked and called the on-call doctor who said to come in the morning. Justin and I were awake all night, praying and trying not to be scared. We even called around to Walmart and other 24 hour stores seeing if anyone had a heartbeat monitor - anything to give us some comfort. I remember strangely thinking my stomach didn't look as round as the day before, but didn't give it too much thought after that. We had been down this road before and couldn't think of going through it again.

Well, most of you know the story from this point. I went to my OB who told me about the low fluid and advised me to take it easy for a week and come back and see if perhaps that day my fluid was just low, or if, as feared, my sac had ruptured and the baby's days were numbered. I remember driving home from this appointment feeling shocked and confused.  At this point I really didn't understand the severity of the issue. I remember my sister found a website on PROM and I told her I didn't think that's what I had. (Can we say 'denial'?) And I just couldn't imagine anything could be seriously wrong when the sonogram showed a healthy, kicking baby with a strong heartbeat...

There's more to the story that I will continue in another post, but writing all of this reminds me how much I second-guessed myself in the weeks following this appointment. When I started showing strange signs that weekend should I have slowed down? Why did I keep pushing myself? Did I do too much activity? Should I not have picked up ML? Why did y amniotic sac tear in the first place? I was taking all my vitamins and didn't have any preconditions. Why could a perfectly normal healthy pregnancy with my first followed by a miscarriage and then this?

If I had tons of money I no doubt would be donating to research all of these things. I sometimes wonder if our "strong woman" society has replaced the long-held view that pregnant women are "delicate." We read in old novels about how pregnant women literally stayed in bed all of the time and didn't do any heavy lifting. Now I think that's a little drastic. After all God created our bodies strong and able to take care of other children while we're pregnant. But I have asked myself: are as determined young women pushing ourselves too much? I mean, what are we trying to prove to ourselves? I know some women can do STEP class until their 39th week or run ten miles while pregnant with no problems, but I'm obviously not one of them. And I don't think I am alone.

It's funny because we read so much stuff in books and magazines about what no to do when pregnant, yet when something actually bad happens, the doctors response is "it's nothing you did; you couldn't have prevented this from happening." But is that really true? I remember when I asked the specialist what caused a sac to rupture, his response was, "the only thing that could have purposely cause this was if you were a crack addict." Hmm. Obviously that was not the case, and yet it still happened. And still no answers because, as many doctors have told me, no researcher is going to touch a group of pregnant women. It's too risky. Honestly, I have learned more about PPROM from the listserv I am on (made up of women from around the world who have experienced PPROM) than from all the doctors I have been to.

So we are left with a lot of assumptions and theories but no hard facts about what is causing a lot of all these pregnancy complications. My mom and her friends have made several comments about how they don't remember their friends having a lot of pregnancy -related problems like we see today. Perhaps, though, that's because medicine has allowed some pregnancies to continue that 30 years ago would never have lasted. But who really knows.

I just have a lot of questions about it. Personally, I feel like doctors are too casual about what they allow women to do. Maybe I wouldn't feel this way if I hadn't seen what I saw been on the antepartum floor and heard all the complications women experienced. It's funny, the nurses who didn't have any children on that floor were so paranoid about getting pregnant because they saw so many horrors. (I tried to remind my new nurse friends that most pregnancies are perfectly normal with no problems.) Still, there are many questions left unanswered in my mind and I guarantee you that if I ever get pregnant again, I will take it much more seriously, and not as something that will just "happen." And I will surely not try to prove to myself that I am Superwoman. I know I can't be paranoid. But this whole experience has reminded me how precious it is to get pregnant and have a healthy newborn baby in  your arms. Not something to ever take for granted....

No news...

There is no news on Maggie - I guess the end of summer is not a good time to schedule surgery because inevitably one of the many doctors that have to approve it are on vacation. So hopefully next week or the week after we will know more.

I don't know why but I haven't been sleeping at night. I find myself thinking about all that's going on and getting nervous about the surgery. When we have come such a long way it kind of seems like a step back to watch her being rolled into some operating room. It also feels like I'm letting down the barrier of protection around her that I've put up. You would think I would have learned by now that this precious baby is in God's hands and that no matter how hard I try, I cannot control God's will for this child. A year after putting her life in His hands I still find myself trying to take her back into my own. But I know deep down that He loves her and has the absolute best plan for her life. And Justin and I truly feel like this is the right thing for her right now. We are just ready to get through it and start our new life with our g-tube, helmet wearing baby:)

G-tube

At feeding therapy yesterday Maggie did what she's been doing with solids: she will put the food in her mouth but she doesn't swallow much of it, rather she just kind of holds it in her mouth for a minute and then spits it out. All babies do this the first few times, but it's been two weeks and she's still not eating much. The therapist concluded after watching her that it's not a muscle weakness that's causing her not to swallow (if that was the case it would be running out the sides of her mouth) but it's more that Maggie just doesn't care about food. She doesn't hate it like bottles, but she doesn't really enjoy it either. I remember ML would flap her hands in anticipation of getting apples or peas. Maggie could care less.

It goes back to the therapist thinking she just isn't motivated by hunger because eating has not been a pleasurable experience for her. Whether it is from the reflux or something else, she just doesn't enjoy food. She'll tolerate it a little, but the bottom line is that we cannot rely on solid foods to bridge the calorie gap like we were hoping they would.

So as I was leaving therapy I asked her to be frank with me about Maggie's future. She said that she doesn't believe it is something that will get better any time soon. She thinks Maggie will eat like a normal child one day, but it will take lots of feeding therapy. Her bottom line: the g- tube is probably a good idea long-term. I knew this was probably coming, but hearing this still made me tear up. After all, it's been a long, arduous struggle and for what??

After that we went to the doctor and after much discussion all agreed to have a g-tube put in Maggie. It was a hard decision but the right one I hope.

Right now I feel a little like the wind got knocked out of me and I don't know why. Last night I just wanted to go in my bathroom and close the door as to shut out all the "stuff" I'm dealing with and just lay on the cold tile floor and cry. It's a lot to take in but I really feel like this is the best thing for Maggie- her brain needs to grow and develop just like the rest of her body and this way she'll get the nourishment she needs. And won't have to stress about every ounce we are giving her and perhaps we'll even have more freedom and not be so house bound during her feeding times. I really don't know what to expect and am talking to our GI doctor today about it all. It's the same doctor that did Mary Lawrence's procedure and so I have full confidence in what he says.

There are some other things maggie's main doctor is concerned with, including the slow progress of her torticollis and is considering surgery on her neck while she is having surgery for her tube. So we have a lot of praying and thinking to do over the next few days...



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Maddening

So Thursday night Maggie pulled her tube out about halfway. The nurse told me that I could push it back in and check for placement and it should be fine. To make sure it is in the correct spot I am supposed to listen with a stethoscope and puff a little air into her tube and if I hear it puff it into her stomach, then I know it is in the right place. I wasn't sure if I heard it or not. So I checked the second way I was taught:  I put a syringe on the end of the tube and draw back - if it is in her stomach then milk will pour into the syringe. And it did. I was a little uneasy about not hearing the puff, but then again I knew if it was in her lungs she'd be gagging and choking and she wasn't doing that.

Over the next six hours I fed her twice using the tube and everything was fine. But in the middle of the night she started wailing uncontrollably - so hard she started gagging. I rocked her and she calmed down and went back to sleep. Same thing when she woke up the next morning. I tried to put her in her high chair and she started screaming like she was in pain (Maggie rarely cries the "pain" cry so I knew something was amiss.) I immediately yanked the tube out knowing it was something I did wrong. I called again and was told that actually you can push the tube too far down and it can get into her intestines and cause pain and discomfort. Great. No one told me that. I was just thinking I needed to keep it out of her lungs, and never considered it going past her stomach (another reason I can't believe they let moms do this stuff...)

Needless to say I was hesitant to put it back in and thought that maybe we should try a few days without the tube. I had this realization that things were not going well as we were doing them. I had tried feeding Maggie every three hours while she was awake. The therapists told me it was "cheating" to feed her while she was asleep (because eventually they don't sleep as much and you can't feed a baby solids in their high chair if they are asleep). So for the past 6 weeks I have been struggling to make her take two oucnes while she was awake. If I get her to even start sucking it is a victory. If I get her to take an ounce, that's another victory. I can't remember the last time I have gotten her to take a 2 ounce bottle while she is awake!

This is why the ng (nose) tube was so liberating. I could try and feed her, and if she wouldn't take it then I got put the rest in the tube. And, I have to admit, many times I just skipped the trying all together because why would I sit there and struggle for 30 minutes to get her to take an ounce when I could just put it through a tube in two minutes? Justin and I both needed a break and so I don't feel guilty about doing that all...

Anyways, I decided that what we were doing was not working. As much as I tried, the baby will not eat enough while she was awake. And feeding her every three hours doesn't allow this now six-month adjusted baby to get on a solid nap schedule.  So I decided to switch her from a three hour to four hour routine. And I would feed her as much as I could while she was ASLEEP!! I know I am not supposed to, but it's what we are doing is NOT WORKING!! And when I made this decision I felt like if I could get her to eat her daily goal while she is sleeping, and then the solids a few times a day could be a calorie bonus, then maybe, just maybe we could get her to gain weight and get through this.

So since Friday we have stuck to this new plan:
5 am feed while sleeping
7 am wake and eat solids
9 am feed during nap
11 am solids
1 pm feed during nap
4 pm solids
5 pm feed during power nap
7 pm bed
8 pm feed while she is sleeping
11 am feed while sleeping

Anyways, it has worked surprisingly well. She has nearly met her goal every day, maybe an ounce less than her goal but I figured with solids three times a day that has to make up for it, right?

Wrong! I took her to dietitian today for weigh in and she did not gain anything in the past week. I have no idea how because she had the tube until Thursday and then she did really well on my new plan this past weekend. I was almost mad about it. How could this be?

The dietitian said that she is probably getting a lot more active and burning more calories so suggested we need to up her goal daily intake of milk. I responded that was probably impossible because I can barely get her to take what she needs now but said I would try. So new plan is if at our Thursday weight check she didn't gain any weight we are going to drop a new tube. Then we are going to give it three weeks of trying to feed her as much milk as we can through bottle (and the rest through the tube) along with solids and then we will reevaluate the G-tube.

I am sure everyone reading this is thinking why I don't just go ahead and do it. I know it's not a huge deal, but it's surgery and there are complications with surgery. And my child will have a hole in her stomach for several years - what does that mean for normal childhood activities? And, I know this is stupid, but I can just hear her now complaining about the scar on her stomach when she is 16 and wanting to wear a two-piece to a high school party. (It's okay,though, I'm sure Daddy won't allow her to wear a two piece anway:).) I want to be able to tell her that I really did do everything possible to avoid it.

I swore I never get to this point but I see now what my doctor was talking about with the long-term risks of the ng tube - me putting it down the wrong way into her intestines scared me to death. What if I put it down her lungs and she could got aspirating pneumonia and died?. And I see what he means about how it will relieve our stress. I thought that the care of having a tube in her stomach would be so stressful, but I really think our your daughter only take an ounce at a time is much more stressful than that.

Interestingly we went to the pulmonologist (lung doctor) last week and he told me that this winter Maggie could get a lot sicker than last because the antibodies she had from birth and from breast milk are gone, so her reserves are a lot lower than a normal baby her age. I asked him what we could do to avoid it or help her fight it, and his response was: "Make her grow bigger; if she gains weight then her lungs grow and that is the best thing for her."  Ha! If it were only that easy!

But maybe this was said to give me a boost in the direction we should go...but who knows really? Okay, I guess God does and I guess I need to be praying diligently for the next three weeks....

My apologies

After my last posting I just have to say that I always feel really bad after venting like that - especially when I know that the mothers out there who lost their babies to PPROM or some other tragedy would do anything to have their babies in their arms, even if they did have a lot of issues. I often have guilt about feeling frustrated with our situation, especially when I know how much worse it could be. I told myself and God last year on bed rest that I did not care if Maggie was disabled or had a genetic disorder or had a tracheotomy, as long as she was alive I could handle it. I meant it then and I still do. So I apologize if I came across the wrong way. There is not an hour that goes by each day that I do not think about what the alternative could have been. I find myself gazing at the video monitor or frequently glancing in the rear view mirror at Maggie, almost surprised that I actually see her there alive. I am continually amazed at God's mercy and what He did in our lives and what He is doing now with our daily struggles.

One more thing...

"Oh and one more thing you should do at home is....". That's the phrase I hear all of the time from the therapists and doctors. And it seems every day the list keeps growing.

What made me burst out into tears as I was leaving therapy today is that I'm trying so hard to do all of this stuff (and hopefully not at the expense of my time with Mary Lawrence) and she doesn't seem to be getting better. Her neck is no better and her feeding issues are no better. The only reason she is gaining weight is because I was waking up all through the night to feed her since she wouldn't eat during the day, and now that she has the tube, I use it all of the time because I can't get her to eat while she is awake.

Anyways, here is what I'm supposed to do with Maggie every single day....

For feeding issues:
-feed her seven times a day (eight if I am not using the tube)
-do baby massage or joint compressions before I feed her each time to calm her down
-feed her solids twice a day
-start making all of her baby food with Farmers Market produce (fresher is better for taste buds?) and then start adding heavy cream and butter to the food
-use a very expensive plastic stick with funny textures on it and rub it inside of her mouth and cheeks to get her to tolerate textures more
-give her meds six times a day to help with reflux
-work on getting her to take the pacifier, which means me holding it in her mouth and squeezing her cheeks together

For torticollis (her tilted neck):
-sit her in laundry basket with toys to her right
-stretch her neck to the right several times a day
-stretch her head to her left shoulder several times a day (this doesn't make her mad...)
-tummy time several times a day with toys to right
-make sure the tape on her neck and back stays in place and if not replace it
-put her in high chair or swing and put all toys to the right and try to get her to grab for them

For tight muscles due to no fluid:
-rub her legs a certain way (it is completely different from "infant massage")
-stretch and point her toes
-more tummy time but propped up

For other developmental things:
-make sure she uses her right hand more (because she is always looking to the left she often misses her right and foot and babies are not supposed to have a hand preference until 2 or 3 years old)

And no I can't use the easy go-tos like the Bumbo or Exersaucer because it just encourages more neck tilting, which we are so desperately trying to avoid. She's getting a helmet next month and we don't want her neck tilting to result in her rubbing her shoulder raw with the helmet! So most of this stuff requires my constant assistance and I just can't seem to get it all in. I mean the baby does need to sleep! And I have other things to do besides work with her all day. I feel like I'm in high school complaining about all the teachers giving too much homework. I mean do they know that each one of them is giving me so much "Maggie homework"??? I guess not. And I guess they forget I have another child that needs taking care of.

We have so much therapy that Maggie rarely gets a morning nap and so is always kind of grouchy at therapy. The therapists make comments like, "She looks tired" or "I wish she would take a pacifier so she could self-soothe." Duh - so would I! And the reason she is so tired is because this is the only opening you have and it's smack in the middle of the morning. Oh, and thanks for pushing her so hard at therapy that she finally starts kicking and screaming uncontrollably, at which point you hand her off to me and say cheerfully, "Now work on this stuff at home" and I get to drive home for twenty minutes listetning to a high-pitched scream coming from the back seat.

I'm sorry. I am so thankful for all of our great therapists. They are all really nice and trying so hard to help. I am just so tired of being told by so many different people how to take care of my child - how to feed her, how to hold her, how to let her sleep, how to put her in car seat, how to do everything. It is really the  most frustrating thing, especially when you don't see immediate results. Or even results after several months of intensive therapy.

Just having a bad day and wanted to vent....

Update on Donations

Just wanted to say thank you to all who donated stuff for Our Children's House at Baylor. The Child Life staff was so excited especially since they had just run out of stuffed animals. You can still drop anything off at my house anytime if you have some unused stuffed animals or extra DVD players or DVDs.

Thanks again!

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First time away...

This past weekend I left Maggie for the first time since she was born.  My sister had her third baby (three cheers for baby Emerson!) and so I went to Little Rock to be with them. I spent two days getting organized for Justin to take care of the girls - lists of medicines, time lines for feeding and meds, cleaned all the bottles and toys, laid out each outfit for Mary Lawrence, even arranged for some babysitters (thanks Steppi) to give him a break. I thought I would be nervous about leaving. And while I did have some knots in my stomach as I kissed everyone good-bye at the airport, by the time I got a Cinnabon, an Us Weekly and my usual vanilla misto at Starbucks, I was feeling just fine...

It was great to get away and be able to help someone else for a change. I got to spend some quality time with my adorable nephews and cuddle a healthy and precious newborn - something we don't take for granted in our family. Emerson is a little chubbo and he is eating all of the time  - I have no doubt he'll be surpassing Maggie in weight in about four days:).

Anyways, everyone survived the weekend at our house, although I think it was telling that when I got home yesterday Justin surprised me with a little blue box holding a tiny gold necklace. I guess it was good to let him live the "mom life" for a few days after all...

Cereal

Well the ng tube has been so wonderful, who would have thought?! We have been trying to feed her every three hours just like before but this time if she won't eat (which is just about anytime she is awake) we are victorious in the end because we can pump the milk down the tube and be done with it! I thought it was going to be stressful to have to deal with the tube at home, but it has relieved so much stress. And we don't have to get up at 2 am because we can pump her tummy full of all that milk at 11 and sleep until 5 am - yeah!

Last week I finally saw why the doctor has been pushing the more permanent g-tube for so long. It really does ease a lot of the parents' stress. And it is less messy than the ng tube (and people don't stare at your baby in stores wondering what that horrible tape job on her face means...). But I also saw why the g-tube can be negative: it's just so much easier to feed her with the tube than to struggle with her for 30 minutes eight times a day and still not get her to eat what she needs. The therapists told me the reason a lot of feeding children have g-tubes for so long is because of this reason. It is too stressful and time-consuming to work with your child to eat. Tube feeding is so quick and so satisfying to parents of a child with feeding issues.

I have been praying all along that perhaps she would love solid foods and that would help supplement her diet. Although babies get most of their calories from milk, I figure that I can put up with the sleep feeding at all hours of the night if she would eat solids during the day. But if she hated solids, too, then we would definitely go with the g-tube. I had all this figured out on Monday and Tuesday morning the therapist gave the go ahead for cereal.

I was extremely nervous to try as a lot was riding on whether this baby would take to solids. Of course all babies spit out their cereal those first few times because they don't know what to do with it so I was expecting that. But what I didn't know is if she would gag and reflux it and act like it was the worst thing she ever put in her mouth (besides the milk of course!)

Well..she loved it! Hopefully it wasn't a fluke but here she is trying it out. (Again, I apologize that she looks like a mummy with all that tape - I just don't want her to pull out her tube).

This is definitely an answered prayer! Hope this eating success continues.

Oh the memories we are making...

We were enjoying a nice moment here when I realized Mary Lawrence's bed was soaking wet. It took me a minute to figure out that she had accidentally uncapped Maggie's feeding tube and so they were both laying in the contents of Maggie's stomach. Oh the joys of feeding issues! It's a good thing they were both having so much fun that neither one of them cared. A quick rinse and sheet change later, we were back to reading Mary Lawrence's new favorite book, Robert Lewis Stevenson's "A Child's Garden of Verses." She loves the poems, Maggie loves the illustrations (or at least I think she does!) and I love remembering my grandmother reading the same stories to me when I was a child.


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Little Feet, Little Victory

Every time we see her doctor he asks me if Maggie is grabbing her feet yet. No, I tell him, and then I proceed to give him a bunch of reasons why she might not be doing it yet: "she's still really tight and stiff, and we have been focusing more on her neck at physical therapy, and remember I didn't have any fluid so that made her muscles a little stiff since she wasn't able to move around."

But last night I am watching her on the video monitor and low and behold - she's grabbing her feet! Why is this so important? Beats me! But I do know it's a crucial developmental milestone for babies. Grabbing feet means her brain is developing...and that's good!

Funny I never even thought twice about these things the first time around, but with preemies every little milestone is a victory.  And a little victory like that means a lot to me right now....

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.

We're Home!

We were so relieved to get Maggie home yesterday. We felt since the feeding therapists aren't there on the weekend and Mary Lawrence coming home we needed to get her back to her own environment. It felt good to bring her home from the hospital the second time and Maggie's face when she saw her big sister again was priceless.

Not surprisingly once we got home Maggie reverted back to not eating enough. Honestly, Justin and I are more frustrated than ever. They really should let parents have a full night off before taking their child home. Justin and I were so exhausted from waking up every three hours for the past two weeks and so I'm sure that didn't help our stress level. And even though we knew it might be hard for her to change environments, it still was so discouraging after two weeks of intense therapy to see her refuse to eat. I was so upset this morning at 5 am when she wouldn't even let the bottle touch her lips. The usual questions arose from my tears, "Did the past two weeks do nothing? What about me makes her hate eating? Why can't I get my baby to eat?"

Justin tried to comfort me by saying that if we can't get her to eat we still have the option of the g-tube. I know he was trying to help but that just sent me over the edge. I know I shouldn't, but I think getting a G-tube means failure on my part. People can tell me all day long that it's not my fault and there's nothing I could have done, but I will still think that of myself if that's what ends up happening. I pray it doesn't.

(Sorry this posting is such a downer. I really don't always want to post such discouraging news; I really wish I could have a posting saying "she's eating like crazy!" Maybe someday!)

Please pray for Maggie to be calm and focused on eating, to take all of her bottles, and also for patience for Justin and me as we feed her.


- Posted using BlogPress from my iPhone

Location:We're home!

Perspective

Being here reminds me how blessed we are to have Maggie doing so well. Yes, her feeding issues are serious and scary, but things could be so much worse. The hospital that we are in now is a stopping point for children with severe injuries or impairments. They are stable, but not stable enough to go home. The children have intensive occupational, speech ,and physical therapy all while being monitored by a doctor. A lot of these children have been in accidents or suffered near drownings in the bathtub or pool and have traumatic brain or spinal cord injuries. Some children's injuries stem from abuse and they have been taken from their homes and their families don't visit them. Then there are the premature babies - some born after Maggie was - who are still on ventilators. For some reason they just could not wean off of them. I met a dad of triplets yesterday born at 26 weeks. The two girls are doing great, but the boy is still intubated and has a g-tube and has a long road ahead of him. How that family is managing have two babies at home and one in the hospital is hard to imagine.

Then there is the feeding program which helps children who have oral aversions start to eat again. Some have trachs and, because of prolonged time on ventilators, have negative associations about things touching their mouths. There is a two year old boy down the hall who had leukemia and the potent chemo made him throw up constantly for nearly a year. He had to have a feeding tube to get nutrition and now the feeding team is trying to work him off the tube. Another twelve month old baby girl down the hall never had a feeding problem until she went for an MRI back in March for another issue. She came out of the MRI and would not put anything to her lips. She stopped eating and drinking completely and they don't know why.

All day long as I hear stories all I can think is, "these poor parents." And, let me tell you, you haven't seen exhaustion until you've seen the faces of some of these parents with severely impaired children. Exhastion from sleeping in horrible pull-out chairs for months. Exhaustion from the mental stress of managing their child's hospital and insurance needs. Exhaustion from trying to be strong and positive for their child while dealing with the deep sadness over the loss of the life they had dreamed for their child.

Someone told me recently that it's not good to compare your situation to someone else's much harder situation because it can often leave you feeling worse (i.e. I shouldn't be so down about Maggie's feeding issues when so-and-so has it so much worse than me.) but seeing what these other children and families are struggling can at least give perspective.  As Justin said yesterday, it's hard to be upset about little things anymore after you've seen what we've seen here in this hospital. I am convicted that I need to live in the moment and not always be anxious to get out of this season of life. There are many precious moments and blessings in this crazy life. We have our daughter, who is alive and vibrant and joyful. And no matter how hard things get, at least we have hope that Maggie will have a normal and healthy life. Not many parents here have that hope.

P..S. Maggie has been doing so well that we are planning on going home tomorrow if she does well through the night. It makes me nervous but I know we need to bring her home into her own environment. Thank you for your prayers.

Thankful

Thank you for all your prayers. I felt very desperate yesterday, so frustrated that Maggie was doing worse than any other day since we've been at the hospital. Yesterday afternoon I was venting to a friend about it over the phone and heard Maggie gagging in her bed. I run and look down into the crib and, yep, she had pulled the tube out again. But not all the way out  - it was about halfway in, dangling somewhere in her throat and making her choke and gag. I tugged it to get the rest out and told Maggie that she better start eating or else they would have to put it back in. Well she listened! She took the next bottle in three minutes! And then every other bottle through the night. Go Mags!

But this morning at 8 am (which is usually her worst feeding) she was back to refusing it. Like always the therapist tried many techniques to get her started - darkness, swaddling, sidelining her - the usual. But Maggie started getting very angry (she senses we are pressuring her to eat) and so I took her in my arms and started gently patting her as I walked around the dark room. After a few minutes, I sat back down and started trying again. I held her closely to me and breathed deeply so she could feel the rhythmic nature of my chest going in and out. But, as usual, she just spit it out,  pushed the bottle away, and started arching her back as if to get away from it.

Usually at this point there is no hope. We have to be so careful not to push the bottle in her mouth when she doesn't want it because she will develop a major oral aversion (I have met toddlers here who have to be completely tube fed because they won't let anything touch their mouths so we have to be so careful not to let her develop negative associations with the nipple). Anyway, I stayed very calm and just sat with her in the sidelined feeding position and patted her again. She started sucking her hands, which is a good self-soothing thing for babies. So I stealthily stuck the bottle in between the fingers she was sucking in her mouth, hoping she wouldn't mind and just move her fingers and let the bottle stay in. She jolted a few times but I didn't push her. The third time I tried this she immediately started sucking like it was no biggie and took the whole bottle! A HUGE BREAKTHROUGH. I have never been able to do this in the two months since this feeding issue began. I was soooo happy! She has taken every feeding since 8 am. If she continues to do well we can go home soon...

I am so thankful that God heard our prayers and allowed her to start eating again. Yesterday I felt hopeless and today I feel like we might just be able to do this! It just requires a ton of patience, work, and quiet! And I have learned that Maggie is going to have setbacks, and so I cannot be devastated if she gets sick again and we have to start all over. She can eat and that's what I have to remember.