Camping 2010

For those of you who think I'm crazy for taking an infant with feeding issues on a camping trip, you are absolutely right. Let me just say, it was not a piece of cake. When I was pregnant last year and went camping with round the clock morning sickness and had to squat outside the tent in the dark to pee 5-10 times a night, THAT was easier.

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.

8 Months (2 weeks late)

Life has been a whirlwind lately, but I need to post these developments (or lack of) so I don't forget down the line.

At 8 Months The Chubs:

• Is still 1st percentile for weight
• Still battles with severe reflux and frequent vomitting
• Does not tolerate solids and has many oral aversions
• Doesn't eat much. 20 oz is a good day for us around here
• Has her bottles concentrated at 24cal/oz
  
• Qualified for Early Intervention to help her fine motor skills and feeding issues
• Sleeps well at night, but we have to wake her every 3 hours to feed her to get enough calories in her.
• Had her first camping trip (a story all in itself)
• Loves her jumparoo
• Favorite play things are her hands and feet, but she also likes pens, rings, and spoons (not for eating with though)
• Likes to sleep on her left side
• Has been sitting since 6 months unassisted
  
• May be teething, but who the heck knows anymore!
• Naps fairly poorly due to her reflux and possible teething
• Still loves people and is overall a very happy child considering everything that is going on
• May need a feeding tube/surgery if we can't get her to gain weight without it
• Loves to say "bababa" and blow raspberries
• Says "ma" or "mama" when she's tired/cranky (go figure!)
• Does not seem interested in crawling at all
• Still loves standing, and tolerates tummy time. If she's not in her boppy, she'll just flip right over immediately

Letter to The Chubs:

Little Chubadoo,

It has been a rough road to get to where we are today. It started out with an IUGR diagnosis when I was pregnant. Mom's placenta was pooping out and not nourishing you the way that it should. When you came, I was so relieved that you were ok. You were perfect, healthy, and the most amazing thing I'd ever laid eyes on. 24 hours later, my world turned around when you were admitted to Children's Hospital. Doctors feared the worst. Suspicions of a stroke, meningitis, herpes, seizures, and a whole host of other terrible things loomed among us. It was the worst day of my life.

Once you were discharged and everything looked good, I was so thankful to have you home with us. I finally felt like you were truly ours. Nurses and Doctors no longer hovered around you, taking care of your needs. Finally it was my turn to be your mom, and to give you the care you needed.

As the months went by, we realized you had severe reflux. It has been a battle every single day. We have good days and hard days. Admittedly, most of them lately have been hard. But one thing that is not hard, is loving you. You bring so much joy to my life, even amidst all the anxiety, fears, and frustrations. Your smile, sweet spirit, and determination help me make it through even the roughest of days.

I love you so much, and will do anything to provide the very best for you. Even if that means getting no sleep. Even if that means wearing a puke stained bra for several days. Even if that means going through the emotional heartache of surgery. You are my favorite girl, and I wouldn't want anyone else.

Love you,
Mom

What is on your face?

I am convinced that the person who came to the realization that oatmeal had skin care benefits was the mother of a solids refuser. Yesterday my face was covered with oatmeal. This was by suggestion of the EI Occupational Therapist at our evaluation. Since The Chubs is so interested in faces, she suggested putting some of her baby food on my face to see if she would experiment by grabbing it or touching it to familiarize herself with the texture. Well, she thought it was HILARIOUS. So I guess you could call it a minor success. I resisted the urge to gag the entire time knowing that my own breastmilk was on my face (another reason to seek therapy). I also put some on her hands so she could play with it and on her face as well. It was a very silly and messy experience. In the end I think she took 2 bites, but the point of the exercise is to get her comfortable with solids and have a positive experience. And my skin looks amazing today! (haha, as if) I know you were hoping for a picture, but I have a little more self-respect than that... believe it or not.

I've also started giving her spoons to play with and grab. She seems to like them because they are easy to hold and they have bright colored tips. We practiced opening our mouths for the spoon and as long as nothing was on it, she would open her mouth for it and kind of smile when it got in her mouth. I think this is good for her just to get used to the feeling of the spoon in her mouth.

Today we are leaving for our first camping trip with The Chubs. I know, it sounds ambitious and it is. I would be lying if I didn't say I was nervous. Hopefully it will be a positive experience for everyone and I won't come home muttering to myself and rocking back and forth.

She Qualified

Our morning started with a bang when I got The Chubs up at 8:00 to start our day. I figured I would give her a bath and wash her hair before the evaluation so she didn't look like a white trash, neglected baby (although, maybe that would win the sympathy vote). She doesn't mind baths themselves, but still hates getting out. Even if I immediately transfer her to the towel, she continues to cry for 5 minutes after the 2 second ordeal.

As usual, when I brought her out, she acted as though it was the end of the world. We're talking frantic, high pitched screaming. As she often does, she gagged while crying, and just as I was going to reach for the paci to calm her down, she threw up all over the place. And again, and then one more time. It was very mucousy and so she had a little trouble breathing for a minute. I'm convinced she puked up her entire 5am feeding.

I gave her a little time to recover before I tried feeding her again. We just recently bumped her feedings up to 26 cals/oz from 24 cals/oz and I'm wondering if she isn't tolerating the richer diet as well. I ended up giving her some breastmilk without the added formula for her next feeding to help settle her stomach. She seemed to do fine and actually at 4 1/2 oz (which is a miracle around here these days).

The evaluation went really well and she was in great spirits for it. Everyone was very supportive and encouraging and worked really well with The Chubs. She seemed to dig all the attention. The evaluation lasted about an hour and a half. They observed several areas while she played including fine motor, gross motor, and speech/communication skills. The speech therapist reiterated what we already knew... that she was doing great in the communication department. They said her sitting skills were very good and that overall she was doing fairly well in gross motor. Her fine motor skills are lagging, which is why we brought her in the first place, but they said she has a lot of skills that they can build on to help her improve in that area. In the end she qualified for therapy with feeding (which we desperately need due to her oral aversion), and fine motor skills.

I have to say, I was incredibly relieved. This means that someone will be working with her as long as needed to get her caught up and if something else comes up that she needs help with along the way, since we already qualified for the program, they will simply set us up with a different therapist that specializes in whatever she needs. I feel like I finally have the support I need to help The Chubs reach her fullest potential.

Some observations they had regarding her fine motor skills:

• She's a little apprehensive to grab and reach for new things. They'll be working on her comfort level with experimenting and touching objects that she is not familiar with
• The simpler the toy, the better (which kind of goes hand in hand with her apprehension to grab or touch items that are too loud, or feel very different). They had some great very simple items that she grabbed for and held onto for a long time. I think we need to go shopping for some new toys for her.
  
• She needs to be able to observe the toy from afar, and from about eye level before she feels comfortable grabbing it. Once she has it she needs time to adjust to it before she brings it to her mouth. A lot of this sensory stuff also sheds some light as to why she doesn't want to open her mouth for a spoon and solids. They will be working with her to get comfortable with the spoon itself and the food before trying to get her to eat from it.
• Overall she's much more interested in faces and people (which they could clearly gather from our play time), so putting toys up by our face to attract her attention definitely helped. They also recommended putting food on my face for her to grab and experiment with feeling the texture (it grosses me out thinking about it, but hey, whatever works!).
• She also loves to play with her feet, hands and clothes (all of which she has more control over) so putting toys on her wrists and ankles that make noise might be a good way to transition her into feeling more comfortable playing with objects outside of herself.

We should be hearing from the therapist within the next few weeks. I'm so thankful we're finally getting a service that is free and that they come to our home. I just really hope we like the therapist and that he/she works well with The Chubs.

GI Update

So Friday was a bit exhausting, but I'm so glad that we were able to get The Chubs in to see Dr. N 3 weeks before originally scheduled.

This is what I ended up getting from the appointment:

• The Chubs has only gained 2 oz since June 25th
• She's lost .5 oz in the last week
• We are now concentrating her milk to 26 cals/oz instead of 24
• Her last tests all came back normal (blood, urine, stool)
• We'll give it 3 weeks to see if the Prilosec works any better for her than Prevacid
• If it doesn't we'll schedule a PH probe and endoscope to see if she has inflammation of the esophagus that may be irritating her
• If she continues to eat poorly and not gain or gain very little, they will suggest an NG feeding tube which we will be instructed on how to place
• I need to see a therapist for the toll this has taken on me emotionally (feeling like I can't provide for my child's basic needs - feeding her). And that it is not my fault that she is not eating well (the doctor repeated this many times and told me to get rid of any guilt I may feel).
• Feeding Therapy is very important for The Chubs and waiting 6-8 weeks to get in, to me, is unacceptable (that is 1/4 of her life). A social worker is working with us to try to get her in sooner because of the severity of the situation and her age.
• I need some chocolate. And lots of it.

So that, in a nutshell sums up where things are right now. Monday is the Early Intervention evaluation and I'm trying to prepare for it emotionally. They only accept children that are below the 10%ile in any given area. What if The Chubs is the 11%ile? I think I'll have a break down. That, in my opinion, would be the absolute worst. More to come on monday ...

Once again, a week has past and I have been a very bad blogger. There isn't a lot to report really. Same things are going on here. The Chubs is still refusing and not eating very well. Each day continues to be a struggle and I may just need to see a shrink about it. Gramma and Grampa are here this week and The Hubs and I get to go on a date tonight! I'm super excited about that.

The GI was able to get us in earlier so we have our appointment tomorrow at 9:30. Hopefully everything will go well. Monday is our Early Intervention eval. Hoping that The Chubs will qualify for services (but also hoping she won't).

Since I'm suffering from some writer's block due to a very mundane existence, I'll leave you with this. The Chubs has been blowing raspberries for months now, but lately they have been in full force. Don't feel like you have to watch the entire video, it's kind of long and I only really expect relatives to get through the whole thing, but without further ado, Chubalubadingdong and her spectacular spitting skills:

More on Sacramento

I've been meaning to post pics from my trip to Sac to visit my cousin, and I'm finally getting around to it! Here are a few photos of my time with my dear cousin Jess:

Jess and me with our bundles of fun. I can't tell you how many pictures we took to try to get both of our children to look at the camera, but it never actually happened!

Taking a walk to the park. We ended up having to turn back early to feed The Chubs, but it was a gorgeous day!

The Chubs and her cousin Micah, bonding already.

Checking each other out. The Chubs wanted to know who this guy was that was stealing all her thunder that week ;)

Is this little one too cute or what? Loved his little matching cowboy boots. His grandma is holding him in this picture.

And after going through all my photos I was extremely disappointed in myself. I should've taken many, many more photos. I guess we were just having too good a time to think about it. Thanks again for the fun trip Jess!

- Side (random) note - The Chubs really does look like a hunka chunk next to her cousin. It makes me realize she really has put on some good extra weight regardless of her reflux issues. It made me smile to see her baby thunder thighs next to his. Keep growing little muffin!