Wednesday, December 15, 2010
I'm already mourning the loss of that time in the morning to myself. Not that it was ever really that peaceful hearing her talk up a storm on the monitor, but it at least gave me the chance to get a few things done if I needed to, and have breakfast etc.
On the other hand it will give me more freedom in my schedule. Once she completely drops it, I can start doing some things that I've wanted to do for a long time. There's a MOPS group at our church that has always been right smack dab in the middle of her morning nap time. Once her nap is gone, that will become a non-issue. It will also give our family more time to do things on the weekends. If we decide we want to go to the zoo, or the aquarium, we will have a nice chunk in the morning to do so. If we fly somewhere, we can schedule our flights in the morning so we get to our destination in time for her to take her afternoon nap. In the past flight planning has always been tricky and usually we end up with an overtired, fussy child by the end of the day. So really, there are pros and cons to this. And I'm hopeful that now that she will be down to one nap, it will be a nice and long one. But I'm not holding my breath!
Monday, December 13, 2010
This time around, it is easier. I have the child I had always hoped for and I feel so grateful to finally be called "mom". There are so many wonderful people in this world that would make amazing parents that are on a very rocky road to get there and not for a second do I take for granted that God blessed me with this miracle. I have even come to terms with the idea of having just one child, knowing that if that is the case, it is enough. Lexi IS enough. She is a wonderful, perfect creation that I am beyond blessed to have as my daughter. I can picture us in the future with just her, enjoying life and getting to give her our full attention. And frankly right now, I think she may be all I can handle for the time being. Her extra needs keep me busy and I like knowing that I can spend all of my time working with her and helping her reach her full potential through therapy.
Now let me clarify. I desperately want another child. Maybe not now, but definitely in the future. And does it scare me to death that that may never happen? Of course! But what scares me more is the emotional side of it. As I stated before, I know we could be a very happy family, just the 3 of us. There is no doubt in my mind. But when the time rolls around for us to try to make things happen, I just don't want to deal with all the emotional garbage attached to it. I don't miss the days of crying over my period, or over another baby announcement. I don't miss them AT ALL. And it has been so refreshing feeling a contentedness in that part of my life for the time being. But I feel it creeping back into my life slowly and stealthily. It's one of those things where I didn't really know it was there, but as time goes on and Lexi gets older, it's making it's way back into my soul.
And to explain this just a bit further, there has been hardly any use of any sort of BC for us since Lexi was about 2 months old. I refuse to count any of this (ahem .. 10.5 months) because it might launch me into panic mode. It's not a LONG time since we aren't "trying" right? And really, it's not a long time if you compare it to our original stint of infertility OR to many other of my dear friends who have gone years and years without achieving their FIRST pregnancy. So I need to put on my big girl panties and buck up. I think there will always be that scar though. The one that you have on your heart from the first experience that led you to believe that it was hopeless. Granted, there was a happy ending and we have The Chub Muffin to show for it so the scar shouldn't be that deep, right? Maybe it shouldn't, but it is.
And that folks, is why the number 2 is a touchy subject for me right now.
Monday, December 6, 2010
GI: Well her gain is less than we had hoped for
Me: I know, it's never enough
GI: We really need her to be on the growth chart
Me: Yes, I know that's what you want.
GI: She needs to eat more
Me: Yep, totally know this already. Doing the best I can.
GI: Try feeding her more
Me: ... I can't even respond to that. I may end up hurling you across the room.
GI: See you in a month. She better be on the charts by then or ELSE!!!
(dun, dun, duuuuuun)
Fortunately our conversation was more like this:
GI: She's doing great! Last time she was 3 notches from the curve, now she's only 1.
GI: She's also on the growth chart for height now at the 10th percentile
Me: Sweet Johosaphat!
GI: Keep doing what you're doing and we'll see you back in 3 months.
Me: (Cartwheeling across the office with a couple of handsprings in the mix)
So here are her current states at 12.5 months:
- 15 lb. 12.5 oz
- 28" long
- woot woot!
Oh and her head circumference is something like the 15th percentile. Hot dang that's a big head. But I suppose she needs all that room for her smart brain.
Thursday, December 2, 2010
Regardless of the feeding struggle and concerns about her gross motor skills (or what have you), this is an extremely fun time. The Chubs has become so interactive and is starting to communicate so much more. It's fun to see things "click" in her head as she figures out this big world. The most fun/exciting developments of late are these:
Without demonstrating it for her, she will do the following if we say these words:
- Blow a Kiss (Instead of putting her hand over her own mouth she puts it over mine and lifts it off. It's adorable)
- Where's my nose? (She'll grab the nose of whoever says this)
- Where's Daddy (or Mommy) in a picture (Will point or put her hand on our faces)
- Where's the ball? (She will grab the ball or stare at it)
- High Five
- Where's Baby? (There's a doll in her room that my mom made that whenever I say this she'll look at it and want to touch the doll's face)
She's started to try to sign "more", although it looks more like a clap since it's a similar motion. Today I tried showing her the sign for "Book" and "I love you" and she was trying really hard to do it.
She has started to seemingly intentionally call me mama. This mostly happens when I pick her up. She will look at me and go "mama". It's so cute.
So although she is still not doing several things, I'm choosing to focus on all the things that she is doing. It's fun to see her grow up and turn into a tiny little person. I'm so excited for this new year and all it has to offer.
Tuesday, November 30, 2010
The Chubs ASKED for her bottle today before nap time. Yes, my daughter, you know the one that hates eating and for months loathed her bottle with a passion.
For the last few months I have been very careful with her bottle. We used to offer it to her all the time because she wouldn't eat more than an ounce at each feeding. We also administered medicine with it. Bad, bad things to do. The problem with constantly offering the bottle is that she never had a chance to want it. It was something she hated so much and it was being put in her face constantly. The problem with giving medicine from the bottle is that we HAD to make her take all of her medicine or else her reflux wouldn't be controlled which would cause further issues so we had to continually shove the bottle in her mouth until she took all of it. This always ended in tears on both of our parts. At the time she wouldn't open her mouth for a dropper or anything for that matter. Finally I decided (once we found out her reflux was being controlled by her medication) that we would only offer the bottle every 3-4 hours and no more medicine given by bottle (unless it's hidden in her milk and we know she'll drink all of it). Things improved drastically after that.
Lately Lexi has been in a lot of discomfort. She got her second top tooth along with another tooth on the bottom at the same time. She is now getting tooth 6 and 7, so she has been a teething mess. Because of this, the spoon has been her nemesis. It's clear that she is hungry when I try to feed her solids but it hurts too much so she refuses and simply licks her lips.
Before nap time today I was changing her and she kept opening her mouth wide and saying "baba" which is what we always refer to her bottle as when we offer it to her. She babbles all the time so I didn't think much of it at first. But she continued to repeat this over and over again and open her mouth wide like she was hungry. I continued to shrug it off, but after I had put her down I started wondering... what if she really was asking for her bottle? I don't want to ignore that or brush it aside. I want to encourage her to ask for food. Something I never thought I would ever witness her doing. So I made a few oz of formula and brought it up to her. She drank it down immediately. She clearly wanted her bottle.
I cannot believe that MY child is finally showing some interest in eating. She has never been one to be comforted by food. She's never been one to be excited by food or to even really anticipate food. But if this is the beginning of an interest and eagerness to eat, I am going to do cartwheels and stand on my head because only in my wildest dreams would I have imagined this could happen.
Monday, November 29, 2010
We had a wonderful first birthday party for The Chubs on November 19th. Her birthday was the 18th but this date worked better for the party.
My mother and I spent all week getting things prepped including a trial run with our ladybug cupcakes. We wanted to make sure that we were going to be able to achieve the look we wanted. Getting frosting to turn red is not the easiest task. I also wasn't sure I would have steady enough hands to decorate them.
It's true that we only invited family but if you know my mom and I, you know that we have the tendency to go above and beyond with pretty much anything. It was so much fun for us to put together the favors, plan the birthday fare, and decorate the room for the main event.
The party itself couldn't have gone more smoothly. Lexi was in a wonderful mood and soaked up all the attention. I was worried about how she would do since she started cutting her second top tooth on her birthday. It didn't seem to effect her and she was all smiles the entire day. She never even fussed once. I couldn't believe it. She loved all the toys she got (especially the books) and even though she didn't eat any of her cake, she had fun playing in it.
We spent the afternoon after the part at the Aquarium and she just loved looking at all the fish and the huge tanks and lights. It really couldn't have been a better day. It was so fun spending it with all the family that has supported us this entire year. This truly was a very special birthday.
Thursday, November 25, 2010
I feel so lucky to be at home spending this day with our family and our daughter who is thriving and happy (despite what the doctors and growth chart says). This time last year we were spending the day in the Children's Hospital NICU. It was also the first day we found a bottle that The Chubs would eat from and made that critical step toward getting her to gain weight before they would allow us to go home. This time last year we didn't know how long we would be in the NICU. It was all about the numbers. She needed to eat a certain amount every day, her diapers had to weigh a certain amount and she needed to gain a certain amount. I learned to hate the scale and all of the numbers they used. Thankfully this year, the only numbers I'm concerned about are the numbers of delicious sides we'll have around our dining table. (Ok, so I would be lying if I didn't say I still am obsessed with counting how many calories The Chubs eats every day, but I'm getting better).
I am so Thankful for the support we've had over this last year. The family, friends, doctors and of course my amazing husband and best friend who have all played an intricate roll in where we are today. I'm thankful for a healthy daughter who despite her food refusal at times, is still growing and thriving and enjoying life. I'm so thankful that God gave her to us. There were times I never knew if I could be a mother or if I ever would. God gave me the greatest gift when he entrusted Lexi's life into our hands. I am forever thankful for the gift of motherhood. I will never forget the long road to get to this place and no matter how hard things might get, I would never in my life trade any of the trials of this year to go back to how things were before.
Thank you God for the precious gifts you have given me. My amazing husband that despite my craziness and sometimes borderline obsessive personality, has stuck by my side and loved me through the hardest and most painful times of life. My daughter whose name means "strength" that has truly demonstrated what it means to persevere in the midst of adversity. Although she is not aware of all the things she has endured in her short time on Earth, one day she will look back and see what a tough little cookie she actually is. Our families, who have shown great understanding, love, support and encouragement through out all of this. Our friends who loved us through the hard times and have always been there to offer a helping hand or get us out of the house to experience some normalcy.
I am thankful today. And tomorrow, and forever.
Wednesday, November 17, 2010
Wednesday, November 10, 2010
Therapy - Things have been going well. I can't pretend that 3 therapy sessions a week doesn't get old because it definitely does. I also can't pretend that having a bunch of exercises with each type of therapy isn't a hassle to say the least BUT the exciting news is that they are working. The Chubs has made fantastic strides in every area and it's really made me realize just how important these sessions are for her. I had no idea the extent of her sensory issues until we started therapy. Thank God that we did. As a result of therapy The Chubs is now feeling much more comfortable reaching for things no matter what their texture, size or shape, putting things up to her mouth (I never thought I would see the day), putting her hands on the floor regardless of the surface, and she is willingly opening her mouth for the spoon, dropper, and vibrating teether (major feat). Again, anyone with a normally developing child would think these things are nothing and most have children that were doing this at 4 months old, but for The Chubs, being the sensitive little girl that she is, these are huge steps. Ones I would never have dreamed we would take because of her defensiveness to her environment. In fact she has finally found a few things that she really trusts near her mouth:
Yes, that is a tampon. Her feeding therapist will be so proud.
Feeding - This kind of goes along with therapy but overall feedings have become much easier. Eating is still not her favorite thing. I'm not sure it ever will be. But bottle feedings have improved and solids are coming along. Teething doesn't seem to effect her eating nearly as much as it used to. She is learning to eat through the pain and I'm so proud of her. We weighed her ourselves the other day and she was almost 15 lbs. Our target is 15 lbs or more at her 1 year mark. That means she will have tripled her weight since birth. Definitely something worth celebrating. We are still doing stage 2 purees. Moving slowly is key with her. We don't want to give her something that freaks her out and regress in that department. Our next step will be mashed table food. I will probably start introducing this next week. The challenge is finding food items that are milk and soy free. It would be easy to just mash up whatever we're having for dinner but since she has the milk and soy intolerance we'll have to figure out a few things to offer that she can handle. Did I mention she loves sweet potatoes?
Growth - According to our own measurements, The Chubs is now on the growth chart for height! She is right at the 3rd percentile. I am nothing short of thrilled about this. I wish I could post her growth pattern since birth. She was on her own growth curve (less than 1%ile) until about 8 months and then she just started to shoot up. Of course this makes her weight for height less because she's taller now but I'm sure it will eventually catch up.
Birthday Girl - My little girl will be 1 year old next week. We have so much to celebrate. This has been the most challenging year of my life but so rewarding. When I think back to last Thanksgiving, eating our turkey meal in the cafeteria of Children's Hospital, I realize just how far we've come. I remember feeling so much uncertainty, not knowing what was going on with her, or when we would be able to bring her home, what the long term effects would be, and if she would ever thrive like a normal child. Here we are almost one year later and my little girl is laying in her crib babbling away and happy as can be (with the exception of teething). It has been so much more work than I ever imagined. I knew having a child would be challenging, exhausting, and at times frustrating, but I never imagined that I would have a child that needed so much extra care. I thank God that He entrusted her life with us. That He knew we could handle this and give her the care she needed. Although at times I have wished I just had a "normal" child, I wouldn't trade this experience or The Chubs for any other child in the world. Every frustrating feeding, every grueling procedure, every long appointment, every sleepless night, they were all worth it. And though it is sad to say goodbye to the first year of my baby's life, I welcome this next one with open arms. I am ready to move forward and have great hopes for the coming year.
Friday, November 5, 2010
Congratulations Katie! I've sent Blog2Print your information. They will be contacting you with a promotion code to use on their site for your free 40 pages. You can add as many more to this as you like, you'll just have to pay for the additional pages.
Thanks everyone who entered!
Monday, November 1, 2010
You're probably expecting me to bust out saying I kissed a donkey, or rode on an endangered elephant while playing the bagpipes (which would actually be pretty awesome). It's actually a little bit better than that... if you can imagine.
The intention of this blog from the beginning was and always has been simply to document and share what's going on in my life as a first time parent to my little Chub Muffin. Nothing in this area has changed. I'm not out to make money, get recognition or become a blogging mama superstar (plus I don't think that goal is really attainable even if I WAS trying :)). I am first and foremost a mother and I don't think blogging should ever take away time from that or become all-consuming.
So what I'm about to do is completely new, but still relevant. I am doing a giveaway. Yes, you heard that correctly.
I was contacted regarding a company that turns blogs into printed books. This really peaked my interest because I have always kind of considered my blog to be in a sense, a more detailed baby book for The Chubs, documenting our everyday life, milestones, frustrations, adventures etc. Plus I'm not very scrap-booky so the idea is even more appealing. The company I speak of is Blog2Print.
I ordered a book and it came really quickly*. They have a bunch of different patterns and styles you can choose for the outside of the book and you get to choose a photo for the front and back of it. You can also decide to print the entire blog, or just from one date to another. The site is extremely easy to use and it generates your book within minutes. You can then go through it online to preview it before you order. In a word, it's awesome.
Not that anything would probably ever happen to my blog, but it makes me feel so much better knowing everything is printed and in a hard copy. Not only is it nice to have for myself but my parents and other family members that take interest in The Chub Muffin have also expressed interest in having a hard copy for themselves so it would make a great Christmas or birthday gift.
So here's the deal. If you would like your own free printed 40-page copy of your blog enter to win by 1) Leaving me a comment about why you want your blog in print. 2) Follow Blog2Print on Twitter or Facebook. 3) Bribe me with chocolate and potato chips**. I will select a winner at random, or whoever does the best bribing**.
* I was given a complimentary book from Blog2Print in exchange for reviewing their product.
** Just kidding. Bribing won't actually help you win, but it will make you my BFF and I'll totally give you an honorable mention, which is almost as good as actually winning.
Thursday, October 28, 2010
I posted some of my amateur fall photos in my previous post, but over the weekend I also had a good friend of mine take some professional photos of The Chubs. She is amazing and so talented! Here are some of my favorites! Check her out at Kristin Beam Photography.
Monday, October 25, 2010
Friday, October 22, 2010
So, on to my story. Today was a rough day. The Chubs is finally cutting one of her top teeth. However, it is not completely through. It's like it's intentionally teasing me. One half of the tooth is out, the other side is covered still with a very thin layer of skin. COME ON!!! So because of this chubadevelopment, naps were non-existent today for the most part and when you combine lack of sleep with pain, it pretty much is the ugliest thing since Janet Jackson flashed her tatas at the super bowl.
Nothing was making her happy so I decided to lay a blanket on the floor in her room and lay next to her, to see if she would calm down. To try to demonstrate what she should be doing, I laid on my back completely still with my eyes closed. I was excited when her crying stopped and all I could hear was the suction of her paci ...
... that is until I felt a warm sweaty palm on my face, followed by a finger up my nose accompanied by a lot of giggling. Shortly after my eye was being clawed out and then my hair pulled. Still more giggling. I laid there quietly and tried to count to 60 without reacting. But between her little nails digging into my face and then high pitched squeals and giggles, it was hopeless. The positive thing is that she was happy and no longer crying. The negative thing was that I was convinced there was no way I was going to leave this floor without having scratches and drool all over my face.
It was pretty clear within 30 seconds that this wasn't going to work. She was rolling all over the floor pulling at her crib skirt, pulling at my ears, hair, nose, and anything else that was within reach and having a grand old time. I figured, hey, she's happy now, might as well place her in the crib again. How wrong I was. The moment I put her back in the crib again, my cranky child was back again. How quickly she can shut it on and off. I think she's going to have a very successful career in acting one day.
So, I think it's safe to say there will be no more co-sleeping for us in the future.
Monday, October 11, 2010
Would you PLEASE just come out and break the surface already? If you don't come soon, I think I may admit myself to a mental institute. Don't you realize how ridiculously long you are taking? Haven't you figured out that a child that ALREADY has sensory issues is about the worst type of baby to take your sweet old time with? I would love to stop drugging up my child and get my Failure to Thrive baby to start eating well again. She already has enough in the oral aversion department, we don't need to add sore aching gums to our never ending list of issues. It's a little important, thankyouverymuch.
The Chub's Mom
Thursday, October 7, 2010
This girl is NOT in love with her bottle, so as far as that goes, it shouldn't be a big deal to ditch the bottle in the near future. The main hurdle will be getting her to drink from something else.
Our OT came today to work with The Chubs and she is going to request a PT (physical therapist) to come twice a month so that at our sessions she can focus most of her attention on her eating and sensory issues. One hour is just not enough to cram in everything together. Plus, The Chubs gets pretty tired and a little overstimulated with so much activity.
I'm so thankful she's getting the help she needs but I have to be honest. I am exhausted. I'm tired of not only trying to feed her everyday and deal with refusal, but spending every other minute doing therapy exercises. I literally can not even count or remember all of the exercises I should be doing with her on a daily basis. There are a million feeding exercises and all these different items I need to slowly introduce at meal time and try with her. There are a million more sensory exercises and therapies that she needs to be getting daily to help regulate and organize her nervous system, along with many other gross and fine motor exercises that should only really be done on an empty stomach so she doesn't puke up her last meal.
I wouldn't trade The Chubs for any other baby in the world. She is my precious miracle, I love her so much. Sometimes I do, however, wish that I could just be a mom to her, and she could just be my daughter instead of a doctor/patient, teacher/student role 24/7. I wish I could take her to the zoo for a day without worrying about her food intake or missing any of her other "exercises" and throwing her into an overstimulated state. But normalcy has never been in cards since day one. I just wish there were more hours in the day. That's all.
Wednesday, September 22, 2010
I went shopping to pick up a few more jars of baby food for The Chubs to try. The Chubs still fits nicely in her infant car seat since she's so small so I often tote her around in it when I don't want to deal with getting her in and out of it. Especially with her sensitivity to being moved. I don't want to get her all riled up. So I set her car seat in the front of the shopping cart like I usually do and then began to peruse the store. I was floating down the baby isle and all of a sudden hit something pretty hard. It was one of those cardboard display cases that have random things in them that they are selling. I'm not a tall person so shopping cart + car seat ends up being about the same height that I am meaning I have some serious blind spots.
An old lady in the same isle just stared at me like I was a complete moron and was going to kill my child with my reckless shopping cart driving (although she probably nearly killed us in the parking lot), so I looked at her and laughed and said something stupid making fun of my driving capabilities. She continued to just stare blankly back at me with not even a hint of a smile or sympathetic comment. All of a sudden I felt completely stupid so I rushed passed her to the next isle.
I was looking for some Dreft for The Chubs since I found that using regular detergent has been giving her eczema. You would think I would've learned my lesson the first time. Nope. Right as I was looking up at the detergent I plowed into another display. At this point. I realized it was time for me to leave. I didn't even try to brush this one off or joke about it. Apparently a career in stand up comedy is not for me. I ignored the staring customers and made my way to the line and this time I made sure to look where I was going.
Tuesday, September 21, 2010
I know my posts have been few and far between and somewhat boring at times. This one is no exception. Basically I just wanted to update that it has been a full 3 weeks of good eating for the Chubadub. I was able to weigh her at the Feeding Therapy appointment today and she weighed 14 lbs! That means she's gained 1.5 lbs in a month which is amazing for her (she has never gained more than a lb. in a month before).
Today she showed off and ate an entire baby food jar of applesauce and 1.5 oz of rice cereal for the feeding therapist. Again, I know this doesn't sound like much to the average person, but I can't stress what a victory this is for her. She literally would not open her mouth for a spoon 4 weeks ago and is now averaging around 4-5 oz of solids a day. I never thought I would see the day. I had visions (nightmares) of G-Tubes and a long road of tube feeding and oral aversion to just about everything merely a month ago.
Bottle feedings are still a struggle around here. The therapist mentioned that next week she will be working with The Chubs to transition to a sippy cup which will be a huge task. Every time we introduce something new that is expected to go inside her sensitive mouth, it's a major hurdle. However, I'm confident that if anyone can help her, it's our OT. I mean, I owe this lady in a serious way for getting my child to eat from a spoon. As far as I'm concerned she's nothing short of a miracle worker, and if she could convince my child to eat off a spoon, then she can do anything. For realz.
Wednesday, September 15, 2010
Wednesday, September 8, 2010
She also had a feeding therapy appointment at Children's yesterday and our OT is really pleased with her progress. She's started to take bites of rice cereal (granted it's only like 5-7 bites a feeding) and she seems to enjoy feeding time. She was babbling like crazy and smiling. Overall a very good experience. I think it's improved significantly since switching to a rice cereal that doesn't have hidden milk and soy ingredients (read: I hate Gerber products and the hidden crap they stick in their cereal). I also was able to find soy and dairy free teething biscuits (read: I love Healthy Times teething bars). So after all of that she seems to be doing better. Her excema has pretty much disappeared and she doesn't have freak out attacks after taking a bite of cereal. We still struggle to get her to eat enough each day but she's been consistently eating 20 oz or more a day WITHOUT the 1am feeding. A major feat and everyone around here is getting more sleep at night because of it.
The only bummer amidst all this good news is that Lexi is teething again. No rest for the weary. I can see a white bump on her top gums and her drooling and chewing has increased again. Her bottom teeth are probably about half way up. I still am having trouble getting a good picture. Taking a mouth photo of a child with oral aversions is pretty much impossible. Once they are fully in I should easily be able to get a shot when she smiles.
Thursday, September 2, 2010
The first hour after she woke up from the scope with the probe down her nose was the worst. She was frantic, crying like crazy and so tired. She ended up throwing up, like she usually does and I felt so bad for her. She finally settled down a little later and took a much needed nap. The night was rough because she couldn't sleep very well with her hands and feet wrapped up and the tube down her throat, but overall she did pretty well. She slept more than I did!
Today we are recovering. She slept really well in her own bed last night and has taken a pretty good nap this morning. Despite everything she's been eating well yesterday and today so far. We'll find out biopsy results on Monday. Thank you for all your prayers!
Saturday, August 28, 2010
I don't want to hear all of the "maybe you need to put her down earlier, she could be overtired", or "maybe she wants to drop that nap", trust me, TRUST me, when I say I have tried it all. We are going through a very rough stage here and her terrible napping is making everything worse. Her eating, her disposition, our overall quality of life. Last night she cried for an hour straight before bed which involved a huge projectile puke all over the carpet. Lovely. I knew it was because she was tired but why isn't there an "off" button on these things? I hate that I have no control over getting her to fall asleep.
So all of this rambling to say, I have let us regress in the napping arena. I now cave if she has been laying awake for an hour and is clearly tired and stick her in the swing which honestly works every time. I know it's not a good habit, trust me I have always been all about sleep training and getting your child to fall asleep in their crib and self soothe. But at this point, I'm doing whatever I can to survive. If The Chubs was a normal healthy baby, I would tackle this so much differently, but she's not, so we do what we have to do to get her sleep during the day so she will eat better, and her sensory issues will not suffer further.
I'm trying to not make this a habit, I really am. But check back with me in a month. We may run our swing into the ground.
Thursday, August 26, 2010
Well to make a long story short, I absolutely love her. She's wonderful and The Chubs loves her to death (she was smiling at her and showing off the entire time). She's great with kids and actually had a child with reflux so she gets it. From what she observed, The Chub Muffin has a lot of sensory issues, which is why she is hesitant to grab for things, touch things, and eat from a spoon. She also gets agitated by loud noises and often cries when she's moved from place to place or out of the bathtub. I was an idiot and didn't pick up on any of these cues until recently. I guess I figured it was "normal" behavior. I guess not.
Her thought is that she is not napping well due to these sensory issues and because of her short naps, it's compounding the problem. She wants to work on getting her nervous system regulated so we can get her to sleep better and not be as sensitive toward textures, various positions, noise and objects.
I also finally (with a lot of effort on my part) got her enrolled in the feeding therapy program at Children's. Nevermind that the head of the department STILL has not returned my calls regarding getting her placed. I had to dig up an old number we had from the NICU when The Chubs was seen by an OT for her lack of suck/swallow/breath coordination. If I hadn't had that number who knows how long this would've taken. I love this OT as well. She is wonderful and got my daughter to take several bites of food. Something we have not been able to replicate since, but at least I know it's possible. She also suspected sensory issues and sent me home with a questionnaire.
In other more interesting news, The Chubs has finally learned how to roll from back to tummy. She did this a few times during nap time and at night where she proceeded to sleep on her tummy for quite some time. I'm hoping this becomes a favorite sleeping position because it's supposed to be one of the best positions for reflux. It has to be all her idea though. And yes, she did technically roll from back to tummy around 6 months but it was an accident. One she was determined not to repeat for quite some time because she normally hates her belly.
Her second tooth is in now and all though they have not come all the way up, they are getting there everyday. She still seems to be in discomfort, however. I'm sure having heightened senses probably doesn't make it easy.
Finally, she is beginning to wave when I take her to look at herself in the mirror. It's kind of a shy wave at the moment, but she gets a kick out of seeing us together in the mirror. I also think she's beginning to sign "Mom". I've shown her this sign for several months now and every now and then she does it. The other day she did it while saying "mmma", so I think she knows what she's doing. It's anybody's guess!
Friday, August 20, 2010
A friend of mine shared this with me, and I thought I would post it. Although many may not consider The Chubs as having a disability, there are many similarities due to the extra care she requires. She is also 1/4 dutch so it's fairly fitting :)
WELCOME TO HOLLAND
by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
For us Holland may only turn out to be an extra side trip and we very well could still make it to Italy but I would never ever change going to Holland for anything in the world.
Thursday, August 19, 2010
Speaking of solids. I have a new approach that was recommended to me by several people and an OT:It's much more enjoyable for both of us. I put her purees all over her tray and she can play in them and then suck them off her hands. Because she hates the spoon, this is a good starting point. Right now, spoons are simply for playing with and chewing on.
She trusts her hands and sticks them in her mouth constantly so not only does this get her familiar with the taste of solids but she also has full reign and control so she isn't as resistant and doesn't build as many negative associations with them. This has been a painfully slow process but when you're dealing with a child with severe reflux, everything seems to move at a snails pace and I'm grateful for what progress we've made.
Tuesday, August 17, 2010
Yesterday was The Chubs' 9 month check up. I knew that due to the teething and poor eating as of late that she probably wouldn't have gained much or gained at all. I was not prepared, however for a loss. She weighed in 3.5 oz less than her last appointment. I was devastated. This loss was so hard to swallow. We have been feeding her round the clock (every 3 hours) all day and night for the past few weeks. There is nothing more we can really do at this point. If she continues to lose weight a feeding tube will be imminent. We have been lingering in the 12 lb. range since late May. We were so close to 13 lbs at her last check up but now we've slipped back to 12 1/2 lbs. once again. I'm tired, I'm overwhelmed, and I'm frustrated. There isn't much more to say about it. I would love to post a happy go-lucky 9 month post about all the fun and exciting things she's doing now but that will have to wait. I'm just not in the mood.
Thursday, August 12, 2010
Lately she's been doing this thing where she likes to shake her head "no" for everything. Not a good sign! Thank goodness she doesn't know how to say "no" yet. We've got a little miss "thang" on our hands.
Now for the good stuff. My sweet amazing Hubs is going to watch The Chubs all weekend long while my best friend is in town. We're going to the mountains and staying at a very nice hotel with a spa. We'll be getting spa treatments, sleeping in and lounging by the pool. I seriously cannot wait! This was all The Hubs' idea. Yes, he is amazing and no you cannot have him, he's taken. Step off...
Tuesday, August 10, 2010
Friday, August 6, 2010
I was happy to discover she had gained 1/2 oz a day since the last appointment and apparently has grown an entire inch since then as well (however the guy may have messed up because that seems a little extreme!). Feeling good about the progress we'd made (I say "we" because it takes an army to get this girl to eat and gain weight), we were placed in a room where we waited for the GI to come in and discuss our findings.
Last time we were at the GI, we were told by the nutritionist that her weight for height was actually fairly good and that she'd stayed on her own growth curve but was beginning to drop from her growth curve and that was why they were concerned. Today the chart showed she had caught up with her own curve, but this time it wasn't good enough for them. Now it is apparently very important that she does some major catch up growth and gets on the charts. MAKE UP YOUR MINDS! So what could've been a happy appointment turned into another "dire" situation where we apparently need to figure out how to get The Chubs onto the growth chart.
To say I'm frustrated is an understatement. They've scheduled a PH probe and an endoscope to see if she has esophagitis and to see how bad her reflux actually is and if it's being controlled by the medicine. I'm glad we'll get some results from that, but I'm getting so tired of her weight gain never being "enough" in the eyes of the doctors. She has always been 1st percentile, she has steadily maintained her growth curve. What if this is just who she is?
Thursday, August 5, 2010
- I receive a phone call from such and such department saying there is a referral for The Chubs and to call and set up an appointment. I make the call, give her name, date of birth, home address, etc, and they look her up. "What are we seeing her for?" Is always the question that follows. YOU TELL ME! You called me and said you received a referral! I dig through paperwork I've received to figure out why the heck she IS being seen because I can't keep them all straight! I finally find it and tell them and then I hear "Hmmm, it doesn't mention that here." This is where I go crazy. Seriously?!?!
- The previous annoyance almost rivals my frustrations with an office that makes you fill out 15 pages of lengthy information regarding why you are seeing the doctor, all to have the doctor walk in to the appointment without even GLANCING at the paper and asking you all over to repeat in verbal form everything you just spent 20 minutes trying to write out on their in-depth questionnaire.
- My daughter is almost 9 months old. We scheduled a GI appointment for her back when she was 5 1/2 months and have only been able to get in to see the GI ONCE. This means we have spent almost half of her life waiting on care that she really needs. I understand that Children's Hospital is busy, but when a child is not eating well and is already off the charts small, it seems like it should maybe be a little more urgent.
- Conflicting opinions drive me nuts. We have seen so many doctors and they all have a different idea of how to handle things.
- Drastic measures seem to be common at Children's Hospital. This was our experience in the NICU. There was no possible way my daughter just had something "simple" like reflux. She either had a stroke in the womb, meningitis, encephalitis, and was most definitely having seizures. WRONG! It was "just" reflux, so forgive me if when I have big scary procedures and diagnoses thrown at me left and right, I tune you out. I'm tired of the scare tactics. Let's have a little hope for a change.
Monday, August 2, 2010
They say this tends to happen when babies are about to drop a nap. It is nap time purgatory until she transitions to 2 naps on her own. This morning, she did not sleep AT ALL. I was tired of hearing her thump on the ceiling so I just got her up. When she's up she's cranky, when she's down she doesn't sleep. Rinse, lather and repeat.
What do I do with this child? The Hub's business trip to Germany in a few weeks is looming in the back of my head. How will I survive the week he's gone? At least right now when she's driving me crazy I can pass her off to him and usually he can get her to eat, or calm her down when she's fussing because she's tired, and then fussing because she doesn't want to sleep, then fussing because she doesn't want to eat.
It's a good thing she's so darn cute.
Friday, July 30, 2010
So today, I had to pee really bad but had just gotten The Chubs up from her nap. So I took her in with me. As I sat down and relieved myself (I know - more than you wanted to hear), guess what I saw? My dear Aunt Flo has made her very first appearance in 18 months (if you don't count her extended stay right after The Chubs was born). The last few days I was experiencing a lot of lower backpain that radiated down my thighs, and terrible headaches, which are classic pre-menstrual signs for me, but I guess I just stopped expecting it after awhile. I'd heard that many women get their periods even while they are breastfeeding but that they are sporadic, so I had prepared myself from day one to get her at some point without notice. There were countless times I felt pms-ey, but nothing ever happened, so I got over crying wolf every few weeks and just chalked up the symptoms to fatigue and stress.
And what do I have to prepare for my undesirable guest? A bunch of pads that could pass as king size mattresses that are left over from my post-pardum visit. This is how I feel:
- I have hundreds of oz of frozen breast milk stashed in our freezer that will still last for awhile. I'd like to use them to make all those grueling hours of pumping worth it.
- Emotionally, I just don't need one more thing to deal with each day. (The Chubs is eating round the clock (every 3 hours) because we have to do that or she won't eat enough. That means we have to commit the ultimate sin of waking a sleeping baby each night*. I have a feeling this is a forgivable offense when the alternative is shoving a feeding tube up said babies nose and making sure we don't accidentally insert it into her lungs.) I am exhausted both physically and emotionally. Adding pumping sessions to this already stressful routine is enough to send me to the looney farm. Therefore I am quitting so that The Chubs can enjoy a mother who has the time and energy to give her everything she needs.
- Less importantly, I have been on a dairy elimination diet for several months now. It has become much easier than it was at first, but I have been terrible at taking calcium supplements and I think my teeth have suffered from the lack of calcium in my diet. Also, I just want to have a big chocolate milkshake, is that so wrong?
And whats one of the best parts about ending this pumping business (other than the fact that I won't have to spend hours sitting in a chair hooked up to my pump horns in a bored and tired daze)? My "girls" will get smaller and hopefully I can start wearing "normal" bras again. I may even be able to get back into my previous bathing suit without looking like a hoochie. But let's not get too ahead of ourselves ...
* The wise people who say these sorts of things, have a baby with absolutely no health problems. Congratulations to them! I bet their babies also poop rainbows and butterflies that smell like strawberry jam.
Tuesday, July 27, 2010
After being puked on within the first hour we arrived and realizing I had a vomit stain on the only bra I brought with me, I knew I was in for an interesting weekend.
Pumping in the car in the freezing cold was not so much fun either. HOWEVER, I'm glad we did it, so we know what to expect. And it was fun spending time with family. But I don't think we'll be planning any more camping trips this year. I'm just not brave enough to try this again anytime soon.