For the past 6 months Caleigh has been sleeping wonderfully. I've gotten so used to sleeping through the night. Amazing.
The past month have been rough. I know a lot of it is that Caleigh is fed throughout the night by g-button. We buy her Pampers Overnight diapers. They tend to hold more, and we in turn, avoid large leaks. So most of her nightly parties lately have been to change her full wet diaper. At least that's what I've been telling myself.
Caleigh has also been fighting falling asleep which is something she has never done. I've read the 'get your kid to sleep' books. We have our routine down pat. Bath, lotion, diaper, brush teeth, PJs, feeding tube, read 3 books, rock for a few minutes and then lay her down in the crib. We haven't changed anything. Usually she falls asleep fast, but lately it's taking an hour or more for her to fall asleep.
I think a lot of our sleeping and falling asleep issues come from Caleigh being able to move more. Last night alone we changed her position more than 10 times. We start out on her tummy she flips onto her back. Then the next position is on her side holding her teddy bear or sock monkey with a pillow wedged behind her. Somehow she wiggles onto her back. Then we try the other side. She gets on her back. Caleigh apparently can't sleep on her back. We go through these positions all night long. She wiggles all the way to the head of her crib and then starts screaming when her head touches the wood. When she rolls onto her back and is too close to the side of the crib she screams.
So initially, Caleigh wakes up because she is on her back and has a wet diaper. This all starts about 1am. We change the diaper and re-position. She then plays for about 30 minutes while I fall back asleep. Every 30 minutes the rest of the night Eric or I have to go in and re-position. We've tried to let her 'cry' or 'yell' it out. She mostly growls and yells. We've tried bringing her into our bed. She's wide awake at that point and it doesn't help at all. Remember, I've read the books.... We've tried to shoosh shoosh shoosh without actually touching her. Mostly we re-position without a noise, but she is wide awake anyways.
I'm not sure if there is anything else we can do, but wait it out. Nap time is going well because she isn't sleeping at night. Is this a CP thing or a Short Bowel thing or just a regular 2 year old thing?
Photo of Caleigh at the Pumpkin Patch last week. This is her new smile when she gets really excited and squeals. This is about the only picture that came out. All the others showed her leaning down to eat her tutu!
The sun came out for a few days. The weather was fall-o-rific, but I stayed inside because I felt like crap. It must of been allergies or something because today all is well.
So I read somewhere that this winter in North Texas is supposed to be an El Nino season. That means more rain than usual. So I better learn how to deal and cope with less sun and not freak out every time it goes into hiding for a few days. That being said, the rain came back last night and as I type it's cloudy and dreary outside. My mood is ten times better today than it was last week. Monday is a good day for a fresh start. Oh and my main reason for being such a Debbie Downer last week was our all time favorite friend...PMS. Maybe too much information, but it happens to us all from time to time. PMS, Allergies and Special Needs do not mix well.
I think it was very healing to get all of those feelings out. I'm sure it won't be the last time I feel completely down in the dumps, but I definitely know I have the right to feel that way. What an amazing support system we have too! Thanks guys!
I did a few things this weekend to help me get out of my funk:
Signed up for a Couch to 5K application on my phone (hmmm...I plan on starting just as soon as the rain stops)
Baked and Pureed a ton of foods for Caleigh to try (We are officially on fruits now)
Went to bed at 8:30 for the past 3 nights (even though Caleigh didn't let me sleep through the night I feel like I made some traction on the sleep monster)
Decided not to worry about a costume for Caleigh this Halloween. We aren't going out anyways and Halloween really isn't my thing. I'm more of a Christmas gal.
Took a very long and relaxing shower... twice.
Worked on a new feeding schedule to try and make Caleigh eating by mouth easier. Ok, that made me more stressed out so I didn't exactly finish it! For our tube fed readers out there, what does your child's feeding schedule look like especially if you are doing foods by mouth too?
I'll leave you with this, if our dear sweet Caleigh had straight hair or if I had gotten after it with my straightening iron this is what it might look like.....
Today was another rainy day. I saw some report about our area already having 5 inches over the average. It feels like it has been raining for 2 months. I love rain, but it really can bring a person down. I need my vitamin D....bad.
We have had a quiet day and probably a little too quiet. It was one of those days that wasn't filled with appointments and places to be. So much so, that my brain seemed to take over and it turned into one of those days. The woe is me, why my child, will she, won't she, does she? kind of days.
I've had a hard time here recently. No particular reason really. I've been researching and reading about different tube weaning techniques and of course How to Get Your Kid to Walk Techniques. I've stopped checking in on the blogs that I normally read. Comparing kids isn't my thing right now. I haven't been writing heart felt, lay it all out kinda blog posts either. I've been holding it in. I probably should be writing more because it tends to help these feelings. I'm terrible about returning emails and comments too. I read them all, but have a hard time sitting down to write back. If you write or have written me in the past and I have failed to reply..... I'm sorry. Is there such a thing as guiltless blogging? If there is, I need to find it.....
As if we don't have anything else going on, for the past month Eric and I have been looking at houses. We put an offer in on one that we really liked, but the seller went with another offer. It just wasn't meant to be. The house hunting stressed me out. The idea of remodeling was too much. Will it work for Caleigh. Will Caleigh be in a wheelchair, what does the bathroom look like, are the doorways wide enough? It was one more added thing to put on our list. We have decided to take a break from looking and wait it out. Maybe in the spring we'll start again, but who knows? Our house is semi small, but most people would be happy to have what we have so I need to be more appreciative of it. I feel like a new house would bring new beginnings and I could leave some of the old behind us. I've pretty much convinced myself that Caleigh would do better in a new house and by better I mean crawl and walk due to the said new house. I'm putting a lot of pressure on myself with this idea. Gosh, I really need to calm down. Deep breath.
I guess I just feel stuck. Blatantly stuck. Caleigh seems to be progressing, but there are still things missing. We have been working on her rolling from her back to belly for over a year now. She tries and tries and doesn't get past mid-line when throwing her arms over. She will pull herself over from mid-point, but all the way flat on her back and nothing happens. I've read about the kids that start rolling for transportation. Rolling throughout the house to get what they want. What if she doesn't do that? Caleigh will move all over the living room on her back. She pushes off of things and goes in circles. Movement nonetheless. I can't keep her on her belly because she immediately rolls onto her back. I put her on her stomach hundreds of times per day. How is she supposed to crawl if she won't stay on her belly? Caleigh still doesn't imitate sounds which is the first step in speaking, but she does make plenty of sounds that honestly Eric and I understand, but no one else does. Or maybe that's knowing what your child needs? Probably the last one.
The list of things Caleigh can do continues to grow. The only problem is that the instant she accomplishes something new the excitement is short lived because there is always something else out there to perfect, learn and do. It's just a reminder of how hard Caleigh has to work to do something and how hard she will have to work to get to the next step. I hate that we feel this way. Hate it. Parents of kids with special needs are robbed of the standard milestone celebrations. Robbed of many things actually.
I've been going through a period where I want every piece of equipment possible for Caleigh. Only to find out that equipment doesn't always equal success. Most of the time it has meant a crowded house with not enough time in the day to use all of that equipment. I've decided to stop wanting these things unless they are necessary. I called and checked on the wheelchair and they are still waiting on insurance approval. Some days I just wish we had it and other days I wish we hadn't ordered it.
I've spent most of the day not really doing anything except just being Caleigh's mom. We really haven't worked on anything and I feel guilty about it. The guilt is strong and days like this are becoming more and more. We watch movies, read books, play with toys and take naps. I'm burned out. I'm tired of being the bad guy. I think the two year old is winning.
We have friends with children in the ICU right now. We have friends that have spent 2 years without their sweet baby boy. Life isn't fair at all. Life is about lessons. Life is about God. Some days as Caleigh's mom are tough. Most are filled with worry, tears, anger and an overwhelming ability to have continued optimism when the blocks are stacked against us. How is that possible? Then there are those days that she smiles at everything, makes wonderful noises, her beautiful blonde curls are rolled perfectly tight and everything seems to fall into place. Those are good days.
Wow, I really feel like a Debbie Downer tonight. I know this was a lot of rambling, but I already feel a little bit better just getting it out there.
This weekend I was a bridesmaid at my friend's wedding. It was beautiful, she was beautiful and everything was perfect. It was a long 2 days and Eric took care of Caleigh while I was doing everything wedding related. He did a great job and he is a good daddy for everything he does. So what's going on with Caleigh? Well, if you look in the picture above you can see just a small portion of teeth that are trying to come in. All I can say is that I really really want teething to be over. Caleigh got her first tooth last year in November and the pain hasn't stopped since. Break the skin and come on in, already!
Butternut Squash was a hit and Caleigh doesn't seem to gag as much with it as she does other foods. Check out the sippy cup....Caleigh's been chewing on the nipple and getting some water out. I hold it up to her mouth and place the nipple on her lips. I'm mainly introducing the idea of drinking to her and we are thrilled that she will let the silicone plastic in her mouth. That's a big step. Caleigh has food all over because I put it all over her hands. She normally isn't that messy. I have an acorn squash in the fridge that's next on the menu. Let's hope it works out!
Here's Caleigh sitting at her Pooh piano. She looks pretty balanced in the picture, but she really isn't. I will say that when she goes to fall to either side, Caleigh will put her arms out to catch herself. She really likes sitting and playing with this thing, but it needs parental supervision at all times! Her grasp is developing too. She reaches with an open hand. Uses both hands to grab and has started helping me turn pages in books using her prehensile grasp. We love what we are seeing and the changes are coming fast lately. And finally, Here's Caleigh with Team Caleigh's Top Family Team Award for the March for Babies. This year, just like last year, the team was one of the top five family teams. I wasn't able to make the luncheon this year because Caleigh had 3 appointments that day. I'm sad I missed it because it was a lot of fun last year. We'll put this award with all of Caleigh's keepsakes and one day she will understand how many people care for her and all premature babies. Another huge thanks to everyone that participated and donated this year!
We've been extremely busy lately. All the blended diet and feeding Caleigh by mouth really takes up a lot of time. I'm not complaining though. So far so good. It's working. Just this morning she ate an ounce of green beans and an ounce of sweet potatoes. It isn't always easy peasy, but we're getting there. We've learned that Caleigh doesn't like the taste of peas (takes after her mama) and her belly can't handle carrots. The peas don't flow well through the feeding pump so we will just move on and pick a new veggie. Next up is acorn or butternut squash. It's been harder to get to the store now that we aren't taking Caleigh out in public. So the squash will have to wait until Eric or I can make it alone.
Here's a little video to hold you over. This is about the pace that Caleigh moves lately. Short little crawls, but gets to what she wants.
Adding regular food to Caleigh's tube feeds has been a success so far. We have done Yellow Squash, Sweet Potatoes, Green Beans and Peas. The only issue has been some constipation and not by any clinical definition. Caleigh has only been stooling once a day and it's dark and pasty. This is pretty normal actually. While just on Elecare formula, she was stooling 4-8 times a day. So we will take our 'normal' once a day stool and be super excited about it! Caleigh has also been taking more of these foods by mouth. Yesterday she had an ounce of green beans and an ounce of sweet potatoes with little complaint or trouble. Baby steps, baby steps.
We are working with a dietitian who understands Short Gut. I recommend working with a dietitian or nutritionist who can run the numbers for you. Make sure your kid is getting the right nutrients.
To be able to do a blenderized diet for G-tubes you need to be able to really get the mixture down to a liquid like puree. No chunks allowed. This is hard to do with a regular blender. If you don't blend it well then it will clog the g-button tubing and your feeding pump will alarm constantly. It's annoying...I've been there.
Back in the spring I ordered a Vita-Mix Blender. This is a super-duper, commercial, Starbucks kinda blender. It's amazing....and expensive. I had joined the Yahoo Group for Blenderized Diets and learned a little Vita-Mix secret. There is a medical discount for kiddos like Caleigh and it takes about a hundred bucks off the price. I also bought a Magic Bullet for little jobs or re-blending after de-thawing the mixture.
In Caleigh's case I decided to start over. Pretending she had never ate a bite in her life. I found this incredible website Wholesome Baby Food where it gives a logical run down of baby's first foods and why you should start with certain foods over others. Including how the intestines process certain foods. Perfect for our short gut girl. It gives instructions on how to cook everything from scratch. It's a wonderful site, and even though it doesn't mention anything about tube feeding a child; I adapted it to our needs.
So armed with the right equipment I went to the store. There is something about shopping for fresh, organic food for your child that really lifts a mom's spirits. Especially if your kid has ever been on TPN and didn't have real food for the first year of their life. Basically, it makes me feel like a good mommy.
So here's a small run down of how I made sweet potatoes the other night.
1) Buy the deepest orange, organic sweet potatoes you can find
2) Wash and scrub the skins and then poke holes with a fork all over the sweet potato
3) Wrap the potato in foil and place in the oven at 400 degrees for 1 hour (or until potato is squishy) 4) Unwrap the sweet potato and spoon out the goodies leaving the skins for your dog's next meal 5) Place the yummy warm stuff in the blender 6) Add purified water as needed to blend to desired consistency 7) Spoon into ice cube tray sections (each section is about an ounce of food) 7) Let freeze and then place in freezer bags (amount below was four potatoes) 8) All done! Whenever you need an ounce or two just take them out of the freezer and de-thaw
Something about those perfect frozen cubes that makes me so very very happy. Weird, I know. Every time I open the freezer I get a smile. Hard work paid off I guess. I know exactly how everything is made and when. I know there are no preservitives or additives. I know how good it is for Caleigh. Even better is the fact that Caleigh is taking it by mouth and tube successfully. We still have a long ways to go before her entire meals are blended food, but again... baby steps.