Wednesday, June 30, 2010

I owe you this much

I know my posts have been few and far between, but I guess I just haven't been in the mood to post. Life has been busy, stressful, perplexing etc. Sometimes I just feel overwhelmed by all the possibilities when it comes to The Chubs and her poor eating habits. We've at least narrowed it down (for the time being) to reflux, but we haven't ruled out additional causes.

Monday we had an appointment with the Genetics department at Children's. Although the doctor was helpful, you don't become a geneticist for your people skills. After inspecting The Chubs thoroughly, including her lady bits, the doctor began referring to her as "him" and "he" for about 5 minutes. I tactfully interjected that "she" had reflux, and I think from then on she got the hint.

Not much came out of that appointment because they are in the process of getting us pre-authorized by insurance to have testing done and until that "little" hurdle is jumped, we can't move forward.

To sum things up, they are testing for any reasons that she may be slow to grow or just small in general. One test would be to see if she has Turner Syndrome or Turner Mosaicism, meaning she would be missing the second X chromosome in all or part of her cells. If that was the case there would be a strong possibility that she would never be able to have kids. It is also possible that she may have some heart or kidney issues (although not necessarily likely since nothing of that sort has been detected up to this point), and would most likely be a short adult (under 5 feet tall). I hope for her sake, she never has to deal with infertility. We hope that if she does have TS, that it is the type where only part of her cells are missing the X chromosome because there would be a chance she would still have normal periods and be able to have children, and may only have the short stature, and none of the other complications.

There are other tests they are going to run but to be honest, I can't remember all of them.

The best thing that came out of the appointment is that she is now 12 lbs. That means she gained over a half ounce every day since her last weigh-in. It makes all my fighting for her to eat every day worth it.

Her body is 1st percentile and her head is 10th percentile. I laughed at that but the nurse said it was important for her head to be that big. They wouldn't want it to be the first percentile. Probably for developmental reasons.

I'm pretty sure she is intolerant to milk protein. We tried adding milk based formula to my breast milk a few weeks ago and she did horribly the next few days. Lots of crying during feedings and refusal after just a half - one ounce of milk. Once we moved back to the soy based formula she went right back to normal again. I'm still not eating dairy for this reason and trying to slowly transition her to the soy based formula exclusively. It will probably be a very slow process because I want to make sure she tolerates it well before I stop pumping. But oh, how ready I am to stop pumping.

Solids are a battle still. I'm still reluctant to even push them because I know she doesn't need them for extra calories yet because she's still small and isn't even drinking that much milk each day to begin with. I look at it as a learning tool though, so that she knows how to eat from a spoon. The frustrating thing is that she knows what to do, she is just very stubborn and will only open her mouth on her terms. I'm sure this is related to reflux and her oral aversions. Never in my life did I think I would have to struggle so much to get my child to eat. I thought if anything, that would be the easy part and that the rest of it would be more challenging. I guess it goes to show that you never know what to expect, no matter how prepared you are to have children.

We have our consult with the surgeon on Friday, then another follow-up with her pedi next wednesday. After that we have our Early Intervention assessment on the 19th, followed by a hearing test (which they require. I have no concerns regarding her hearing), and her GI appointment on August 6th. Our summer will be filled with dr. appointments and tests. My hope was for a summer of camping and swimming lessons, but if all of this leads to a baby with a good appetite that is growing and developing appropriately, then it's all worth it.

Saturday, June 26, 2010

Skyway to Hell

This week I was in Sacramento helping out my cousin who just had a little boy about 4 weeks ago. I was so excited to meet her little one and catch up with her since we hadn't seen each other for about 3 years. She is more like a sister to me than a cousin. Because I never had a sister of my own growing up, my cousins became my sisters. Jess is and always will be one of my very closest friends.

The trip there was great. The Chubs was a trooper on the plane again. It was my first time traveling with her alone so I was truly grateful. She just kind of hung out on my lap, smiling and flirting with others around us and eventually passed out and took a short nap on our descent. Things couldn't have gone much smoother.

My visit was so much fun. I got to meet little Micah, and spend time with Jess. I mainly helped her around the house and with some late night feedings and we had pumping parties together in his nursery. Good times. The Chubs was even eating better all week long, which put me in a much better mood and alleviated a lot of stress. I kept thinking how easy it was to bring her on my own. My worst fears were slowly diminishing and I was even thinking how I could probably "do this" again.

That all changed on our way home. It started with a diaper change. I changed her right before I got on the plane, but as soon as I took a seat on the aircraft, I smelled her and she had pooped sometime between the bathroom and boarding the plane. No big deal. I just took her to the lavatory and gave her a quick change before we took off. On take off, she fell asleep, which was great, however I was getting a backache from trying to maintain the same position without disturbing her. Once she woke up, the fun really began. The Chubs was so tired but could not get back to sleep. There were far too many distractions on the plane. She then began to cry... and cry... oh and more crying for pretty much the entire flight. We're not talking about a slight whimper or "fuss", I mean high pitched, frantic crying that even a paci couldn't take care of. There was no calming her down. I tried feeding her, rocking her, changing positions, playing with her, tempting her with toys, distracting her. Nothing, and I mean NOTHING, could calm this child down. She was too tired, too cranky, too worn out and the only thing that would've helped her would've been some sleep. But if you know my child, taking a good nap in a public place is like telling Harry Caray to keep his head still (yes I realize this has spanish captions; just keeping it real for my latino audience).

As you can imagine, I was just counting down the seconds until we could finally land and get off of that plane. That's when we started circling in the airplane and an announcement came over the speaker that we were in a holding pattern and didn't know when we would be able to descend. They shut down all air traffic to and from the airport because of the way the wind was coming in and we were in a line of several aircraft that were waiting to land. The Chubs continued to cry at the top of her lungs, and I thought I was going to go crazy. I think I almost had a panic attack at that point. Fortunately we didn't have to wait too long and we started to descend slowly, waiting our turn to land. At this point The Chubs had calmed down a little bit and I was eternally grateful for it. However, now I was having a new issue. The flight became very bumpy because of the wind. So much so that I thought I was going to puke. My body became all tingly and it was taking all my effort to hold my lunch down without spewing it all over The Chub Muffin.

One of the flight attendance saw my face turn pale and brought me a cold cloth to put on my neck. The guy next to me willingly held the muffin for me as I grasped the airsick bag in my hands and hung my head between my legs. I'm sure the people around me were royally ticked off that they had to sit next to me. First my child is screaming the whole flight and next I'm about to toss my cookies all over the place. Fortunately I made it without pukage. However, the nausea lasted for the next 2 hours. In fact, after I exited the plane, the jetway was about 90 degrees and I had to stand there waiting until they brought the carseat that I had gate checked. I don't know if you've ever had severe motion sickness, but heat is about the worst thing. I was almost regretting not bringing the baggy out with me to the jetway at this point.

Finally I made it passed security where The Hubs was waiting. I have never been more relieved in my life. I started crying as soon as I saw him. I was so relieved to be off the plane and on my way home. And getting more than a few hours of sleep at night has been nice too. Last night I slept about 12 hours. The Hubs took care of The Chubs to give me a break. It was much needed. The moral of this story is that I will NOT be flying anywhere alone again, until The Chubs is at least 2. You can hold me too that.

Thursday, June 17, 2010

The "S" word, and other words I don't like.

When we took The Chubs to have her upper GI X-Ray done about a month ago, we sat in a waiting room that also held children that were about to have surgery. I prayed at that moment we would never have to be back at that same spot for that reason. I watched as tiny babies, inquisitive toddlers, and other small children sat in their PJ's next to a bag of items they would need during their stay and recovery. My heart went out to all these kids and their parents. To see your child have to go through something like that would have to be extremely difficult. I didn't know why each of them were there, but I could tell by the facial expressions of the worried parent accompanying them, that no matter what type of surgery it was, no matter how noninvasive, it was still hard to watch as their precious child was about to go under the knife.

A few days ago The Chubs was eating at her all time worst. I panicked and called the pediatrician. It's obvious she's very bothered by her reflux lately. The coughing, gagging, and occasional vomiting along with extra fussiness, all the tell the tale of a miserable punkin. The added Maalox 4x a day is not doing anything so far. I know that it could take a few weeks to notice a difference there. I have also cut out dairy for 2 1/2 weeks now. Nothing has really changed or improved. My guess is that the extra calories we're adding to her diet by concentrating my milk with formula is hard on her tummy as well.

I received a phone call back from my pediatrician yesterday. I wasn't near my phone so I received a message from him instead. The gist of it was that what she's eating isn't enough to help her grow if she continues eating this poorly, and since the medications aren't helping a lot the next step would possibly be surgery if things do not improve. The "S" word I'm referring to? That's it. Surgery. It's called the Nessen's procedure, where they tighten the sphincter muscle to prevent her from refluxing as much. The good news is it is done laparoscopically and only has a recovery time of a few days. But still, just the thought makes my heart drop in my chest.

Trying to collect myself after finding out this information, I called the recommended surgeon my doctor gave me a number for at Children's Hospital. At this point, he hadn't provided the name of the type of surgery so when I called and they asked, I tried to explain it, but didn't have the right terminology. The lady ended up asking someone else what it might be and she said, it was probably a G Tube. I immediately started freaking out. In case you don't now what that is, it's when they have to make an incision and insert a feeding tube directly into the stomach. You would then feed the baby exclusively through this tube. The lady on the phone said "I'll just note it's for a G-Tube", scheduled my appointment and hung up. Feeling completely overwhelmed, I called my pediatrician again to confirm what the procedure was. That's when he confirmed it was the Nessen's Procedure, NOT a G-Tube. So I called Children's back again and corrected the appointment to say the right thing.

On top of all this drama, my insurance has decided they no longer want to cover prevacid for The Chubs. In a letter sent this past month, they stated that they have found over the counter medication to be "just as effective". What they fail to realize is that prevacid in solutab form is NOT provided over the counter and you can't shove a tablet down an infant's throat. It just doesn't work that way. The nurse at my pediatrician's office (who I love... smoooches!) spent over an hour on hold with my insurance company trying to speak to someone who could resolve this issue. She was disconnected several times, and given an invalid number to call. Needless to say she was a little ticked off, and rightfully so. I was frustrated for her and for us as well. I'm visiting relatives in California next week and HAVE to have this resolved before I leave. I can't go without her prescription, considering that anytime she misses a dose she vomits quite a bit and eats like a bird.

Our final solution is to have a local compounding pharmacy turn some over the counter Prevacid into liquid form so I can administer it to the little muffin for now, until this situation can be resolved. They charge about $55 for this service plus the cost of the over the counter medication, but this is much less than the $300 it costs out of pocket for the solutabs. It's getting ridiculous. It sounds like insurance would rather cover the cost of surgery and any other aftermath that may come if my daughter is not on prevacid. No, they didn't tell me this, but if they won't just buck up and cover the solutabs for my daughter to manage her reflux, there will be many more consequences down the line that THEY will end up having to cover.

Wednesday, June 16, 2010

Monday, June 14, 2010

Daddy Dressed Me

Yesterday The Hubs brought down The Chubs wearing this:

Yes, that is my daughter wearing tights on the outside of her onesie.

Tuesday, June 8, 2010

11 3.5

We had The Chub's weight check yesterday to make sure she's still gaining weight despite her terrible eating. Her weight was 11 lbs. 3.5oz. That means she gained 5 oz in the last 2 weeks. Not too great, but at least she's still gaining. Ideally she would've gained at least a half ounce a day. If you do the math, she obviously has not gained that much. But I need to count my blessings. She is still gaining, and that's what really matters right now. It actually feels like a huge victory in some ways. Getting her to eat everyday has been challenging to say the least. I feel like my life revolves around trying to force a bottle nipple down her throat. It's a battle back and forth. I try feeding her, she closes up her lips, fusses, turns her head, and pushes the bottle away. Today I spent the entire feeding trying to distract her with a mirror so she would eat enough.

I had a small breakdown last night. This has been going on for months now. I don't know how much I can take. But at the same time, I know the answer: I'll do whatever it takes. Because that's what you do when you're a mom. No matter how tough a situation may be, or how frustrated and overwhelmed you might get, the bottom line is you will do whatever it takes to provide the best for your child. If that means months of 40 minute struggles to get my daughter to take 1 or 2 ounces, so be it. It doesn't take away the frustration, the stress or the occasional emotional breakdown, but it reminds me that although the road may be long, we are on it together and my daughter who was definitely worth the wait, is also worth the extra effort, the tears and the $100 we'll probably need to spend replacing all the haberman bottle nipples she's chewed open. And today I'm feeling thankful. Thankful that my daughter is here after the initial scares, and questions regarding her health. And thankful that it could be so much worse than it is. I have a friend who is dealing with this with her twins and I admire her strength. I'm only struggling to feed one child each day. I can't imagine what she is going through struggling to feed two.

Thank you for your continued prayers for The Chub Muffin. Her next appointment is June 28th with genetics/metabolics at Children's Hospital.

Sunday, June 6, 2010

So, so close.

In the past few weeks The Chubs has come a long way. She used to be a tummy-time hating little muffin who really just wanted to observe life. Now, she doesn't mind tummy time (she remedies that by flipping over as soon as I set her down), and she is oh so close to sitting. I know it will be any day now. She can sit independently on a lap or on a cushy surface for several minutes. When you put her on a hard floor, however, it is a different story. She lasts about 5-10 seconds tops. She is improving so much everyday that I wouldn't be surprised if she was sitting on her own in just a few weeks (or even days). My baby girl is growing up so fast! And I have to say I am quite proud of her. She is so small and pretty much any toy that is made for a 6 month old is too big for her. She gets swallowed in her Jumparoo, but even so, she makes it work and loves it. Even if that means placing a book under her feet. She has a lot of hurdles to jump over, but she never ceases to amaze me as she continues to grow and change despite them.

I love my little girl and I'm so proud of her! And I have to say, she is quite an adorable little sitter.

Saturday, June 5, 2010

I fought the swaddle, and the swaddle won

Ok, so you probably knew this post was coming. Like any unhealthy relationship, dependency is an unfortunate but sometimes unavoidable issue. Let me preface this by saying I have only caved once and it was for a good reason. I mean, a REALLY, REALLY good one. I promise. I do intend to burn my miracle blanket, I really do. Just.... not quite yet. (This is sounding more and more desperate isn't it?)

Yesterday The Chubs was in a funk. She ate even worse than she usually does and she was fussy. She was acting like she does when she's sick, or in pain. I actually noticed she has some sort of sore on her bottom gums where a tooth could possibly be emerging (I'm not holding my breath though), so maybe that is the problem.

The caving didn't happen yesterday though. It happened today at her third nap when she was crying like she does when she gets her immunizations. Rapid-fire, gagging, choking, turning blue type of crying. I went in several times to reassure her and try to calm her down. After the 4th attempt, considering she was still very upset, I gave up and swaddled her. 1 minute later. ONE MINUTE!! She was sound asleep and peaceful. I hate that thing, but ugh... I can't live without it quite yet. If it's the one thing that could calm her down and get her the sleep she desperately needed, so be it. But oh how I HATE IT! The only thing miraculous about this blanket is that it's going to take a miracle for me to finally get rid of it.

Friday, June 4, 2010

Victory at last

Although I may eat my words later on, I am happy to announce that we now have an exclusively unswaddled sleeper. The journey has not been easy. There were so many times in the last couple of weeks that I wanted to throw in the towel and give up. I kept thinking "maybe she's not ready", and wanted to revert to our old ways. I'm so glad I didn't. It was worth the bad naps, night waking, and tears on both of our parts because now my daughter can fall asleep and stay asleep peacefully for naps and night time without her baby straight-jacket. That dreadful miracle blanket has been replaced with a sleep sack which keeps her warm, but allows her limbs to be free. I feel the need to have a ceremonial burning of the miracle blanket (thanks for the idea, Kerri :)). I never want to use that thing again. It was wonderful when The Chubs was a tiny infant, but it became a sleep prop that she could not do without, and that is when both of our swaddling addictions began.

After thinking about sleep props and what other ones may cause a problem in the future, I decided to get rid of the music I play for her before each nap. For about a week now she's gone without it, and I actually think she falls asleep faster that way. Another small victory won. I still give her her paci before naps, but not at night. If she loses her paci during a nap I do not put it back in. I don't want her to rely on that to be able to fall back asleep again. We are getting there slowly but surely. The last thing to consider will be her white noise machine. More than anything, we have it to muffle outside noises since she's a pretty light sleeper. I can see her becoming dependent on it in the future, but for now we will be using it as long as needed. It's portable and small, and to be honest, as an adult I still sleep better with white noise. I figure with the other sleep props behind us, we can afford to give her that one "luxury".

I realize by writing this post that I am most certainly in for some sort of relapse with her napping and night sleeping behavior, so I will relish the success while I can. Even if it's just for one more day.

I will leave you with a special goodbye note I wrote to my frenemy, miracle blanket.

Miracle Blanket,

It seems like just yesterday I was ordering you online in hopes that you would swaddle my baby so tightly she could not bust her appendages free. I had just ended things with receiving blankets - they just weren't fulfilling my needs anymore, so I was rather vulnerable. When you arrived in the mail, I opened you up with anticipation. Everything was so new and exciting. I couldn't wait to try you out. You promised that my child would sleep longer at night, you promised to be the best baby straight-jacket a mom could ever want. You certainly delivered on your promises, but you brought with you the deathly grip of swaddling addiction that I will never be able to truly forgive you for. It is a dependency I never want to feel again. An unhealthy desperation.

For months and months I wrestled with you. A battle I often felt I had lost before it had even begun. Although I knew it was time to say goodbye, I just couldn't let go.

Finally I am free of your grip. I will not turn back, I will not back down. It's not you, it's me. You did what you came to do, and I let it control me. Thank you for your service, but I will not be needing you anymore.

Best Wishes,
The Chubs' Mom

Wednesday, June 2, 2010

H/I, how's it going?

The answer? Not good. You may remember my bra shopping experience about a month and a half ago where I found out that I am now an ungodly bra size (thankyouverymuch, medela pump in style). What I didn't mention is that I did end up ordering a bra through the same shop that wasn't completely hideous. When I got it, I was excited. It gave me some good support and was somewhat attractive (surprisingly enough). I repeat, this was about a month and a half ago. My bra? Well, it's falling apart already. The bra we spent half of The Chub's college fund on is already showing signs of wear. Apparently even an H/I cup size can't handle these things. I can almost hear people mumble as they walk by, "Look at the funbags on that hose hound!". I noticed the other day that randomly my bra clips in back would undo, except for one that would hold on by a thread. This happened on a fairly consistent basis and I was starting to feel like a flower child (All I needed was a one way ticket to San Francisco).

I'm pretty annoyed for several reasons. First, the obvious - that I spent a good amount of money on this bra and it's not doing it's job. Second, that if this style doesn't work, I may be forced to buy one of the full coverage nudey bras with embroidered hearts on them. And third, that another expensive bra purchase is eminent, however I probably will only need it for a few more months until I stop pumping. The only thing that can remedy this situation is more cowbell.