Thursday, July 29, 2010

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:)

Wednesday, July 21, 2010

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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Monday, July 19, 2010

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....

Sunday, July 18, 2010

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.

Thursday, July 15, 2010

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....

Wednesday, July 14, 2010

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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Tuesday, July 13, 2010

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...

Wednesday, July 7, 2010

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).

video

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

Friday, July 2, 2010

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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Thursday, July 1, 2010

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....