Updates! Updates!

On Wednesday Lexi had her 3rd esophageal dilation. It was scheduled for 2pm, which I hate because that means she goes all day long without eating. On top of that, the procedure was after her nap time (1pm) so not only was she starving, but exhausted as well. Regardless of that, she did so well. The only really hard part is that they admitted us to the exact same room she's had 3 times and she immediately cried when we walked into it. They have a little play room down the hall which saves us every time and we spent the majority of our time in there while waiting for the procedure which started 30 minutes late.

Since this was our 3rd time I've learned small tricks that have helped maintain a certain level of comfort for Lexi. We brought the portable dvd player with several Elmo dvds (Elmo is the man...I can't imagine life without him). We waited until right before the procedure to change her into the gown. We had them put the hospital bracelet on her foot (she HATES having stuff on her arms). They did vital signs while she watched Elmo. I requested they put the IV in her foot instead of her hand so when she woke up she wouldn't freak out every time she looked at her arm or tried to rub her eyes. And paci, paci and more paci. We've weaned her from sleeping with it and I have no problem using it for soothing with all these medical procedures until we are done with them. I like to joke that I am addicted to HER paci because I use it when I need a fast way to calm her down.

The procedure went quickly and we were called back to recovery about 40 minutes later when she was waking up from the anesthesia. To my delight they had listened to me and inserted the IV into her foot. Let me tell you, this made ALL the difference. Because she didn't see anything on her hands or arms she was able to comfortably snuggle up against me and sleep off some of the anesthesia for about 30 minutes. Usually all the gauze, IV and hospital bracelet make it too uncomfortable to rest her head on and she just freaks out every single time she looks at her arm. Every. Single. Time. We didn't even need to use the dancing monkey they have at the hospital that usually distracts her from looking at her arm. I know how pathetic this sounds and I really wish I had a video that captured the drama that ensued each time she caught a glimpse of her wrist. Tragedy.

Her oxygen sats were a little low because she was sleeping and they didn't want to release us until she could maintain a 93% for 15 minutes. She was hovering in the high 80's for awhile. Once she woke up her sats went up and we were able to good home. But the best news is that this was most likely the last dilation. They were able to dilate to 15mm. Although that is still below normal, it's probably enough for her to eat normal food. We will re-evaluate if she is still having issues after her tonsillectomy.

Speaking of tonsillectomies, we decided to see the ENT that placed her ear tubes because he performs partial tonsillectomies that have a quicker recovery, and less pain, but are still just as effective if the reason for removal is simply size related. Needless to say that sounded awesome to us and we've changed our plans and are going with him. The procedure will most likely take place at the end of this month, or early next month. Most kids her age recover in about 3 days. 3 DAYS! While another less than 10% of kids take about a week. Just compare that to the recovery of a full tonsillectomy that can take up to 4 weeks to recover from. The risk of bleeding is also 4x less in a partial. Jackpot!

Now, onto more fun subjects... like my birthday. I am turning 30 on Monday. I'm feeling super spoiled because my parents will be out here for my birthday. They live several states away so I haven't shared my birthday with them for 6 years. Then the following week the hubs is taking me to an all inclusive couples resort in Cancun. Both grandparents with be watching Lexi so she's going to have a blast and we'll get to rest easy knowing she's having a blast. She probably won't even realize we're gone.

So those are some significant updates. I will post more once we're back from our trip and once The Chubs goes through her final procedure. Then we can hit feeding therapy hard and maybe, just maybe, I can finally think about ordering something for her off of the kids menu. Sounds like heaven to me.

Amazing Weekend followed by a Dis-appointment

My trip to the mountains with my best friend Sarah this weekend was amazing. I was having trouble wrapping my head around the fact that I had absolutely no obligations and could do whatever I wanted. The freedom was unlike anything I have felt for a long time. We arrived at the resort in the early evening on Friday, got settled in and then had a nice relaxing dinner. After that we went back to the room and watched a movie and then went to bed and slept in (ahhhh). We ordered room service for breakfast the next day and just relaxed and read before our spa appointment at 1. The massage was to die for. It was just what I needed. The rest of the day was spent in the hot tub, by the pool and then at the movies later that evening. We headed home the next day after a nice breakfast in Vail Village. I wasn't ready for it to end. I would post pictures but I was a dork and brought my camera without the memory card so all the photos were taken by Sarah.

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.

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.

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:

(Almost) Free from the Bonds of Swaddling

As many of you know, I am addicted to swaddling my child. It started out innocently enough in the Children's Hospital NICU where The Chub Muffin was constantly in a swaddled state. When we brought her home in the dead of winter, her pediatrician strongly recommended keeping her swaddled so she could stay warm. She was so small, that helping her save energy by keeping her warm would help her to grow. At least that was plan. So for months I continued swaddling her for nap time and at night. By the time 3 months rolled around and Spring was around the corner, I realized it might be a good time to break her from the habit. You can read more about our first attempts here. Needless to say, it did not go well. After a few days of trying, I gave up. I could no longer handle watching my baby on the video monitor struggle to fall asleep and cry for an hour. She was just not ready and neither was I.

It took a swaddling intervention to get me to change my ways. One night at a girls night out, The Hubs put her down for the night and "experimented". I love how men can be so much more spontaneous that way. I came home to see my little girl laying peacefully in her crib with her arms up by her head. It made me wonder why we hadn't tried this sooner. Oh yeah, that's right. I value my sleep. Anyway, everything seemed to be going rather smoothly until about 3am when I heard an outburst of crying. It seemed that although she was able to fall asleep like that in a very tired state, she had a harder time transitioning with her arms there to distract her. So for several nights we put her down for bed unswaddled since we knew she was capable of falling asleep initially like that. Then when we fed her at 10, we'd swaddle her for the rest of the night. After a few days, we let her go unswaddled again to see how long she could go. I was prepared to let her cry a little in the middle of the night but go in to reassure her if needed. Finally, she made it from 7:30pm to 6am unswaddled. It seems like a gradual approach is working (but I feel the need to knock on wood right now, or possibly bang on it).

Now, as for naps, those are still a little tricky. Today was my first time experimenting with an unswaddled Chubadub. I have been hesitant to experiment because she already has trouble with naps sometimes anyway, and she often wakes up after 45 min. as it is. I knew the added arm distraction would probably not help these factors. And although I treasure her nap times as some much needed "me" time, I figured this weekend of all weekends while The Hubs is home, would be a good time to test it out. I am happy to say she did actually fall asleep for about 20-30 minutes, but just as I expected, was roused from her sleep and unable to get back to sleep after that which ultimately resulted in some crying and lots of grunting and squealing. There was just too much excitement in the crib (in other words, appendages to play with).

Because the gradual approach seemed to have worked for night time, I think I'll try one nap unswaddled per day for about a week (or less if it goes well) and gradually move to a bondage free nap routine. Wish me luck. This has not been an easy journey.

Also, I am not trying to leave everyone in the dark as far as my child's health is concerned. Basically there is no new information to report. We have not received any tests back yet and her next appointment is in about a week. I will keep you posted as we find out more. In the meantime we have been in touch with the Early Intervention Program. Our coordinator should be calling next week to set up some in-home physical therapy sessions. Free, at-home appointments = one happy momma.

Not in the mood ...

I'm really not in the mood to post today, but instead of making a bunch of phone calls and sending off emails, I would rather cover everything in one post. Most of our family and friends read this blog anyway so it's the cheater's way of informing the masses. I'm exhausted from taking care of a sick baby all week, and I myself am recovering from a doozy of a cold so this will have to do.

I've mentioned in several of my posts over the past month or two that The Chubs has not been eating well. It's gotten to the point that getting her to even eat 18oz a day is a challenge. Today, we visited a GI specialist at Children's Hospital. I won't even go into the bad memories that surfaced as I entered the building again. As many of you recall, this is where our daughter spent the first 2 weeks of her life hooked up to oxygen, breathing and feeding tubes and a million different monitors that liked to go off every few minutes.

I had to attend this appointment alone because The Hubs has been super busy at work this week. I figured it would be a fairly short appointment but we ended up being there for over 3 hours. This meant that the little muffin missed her morning nap, which under normal circumstances is bad, but considering she's still sick, it made it even worse. I won't go into all the details but they are going to order an upper GI X-Ray to make sure her small intestines look ok. They also drew blood, and collected a stool sample. She is now wearing a urine bag to collect some urine which I will need to drop off at the hospital later when there is enough in there.

They are ordering some genetic and metabolic testing to see why she isn't catching up with her growth. They also suggested physical therapy for her because they don't think her upper body strength is where it should be (not sure what this has to do with GI related issues, but it was a passing comment). Her little legs look great and are extremely strong though. No concerns there. We are also going to see an occupational therapist to have them watch a feeding and see if they can pick up any clues as to why she isn't eating well, and refusing the bottle after a couple of ounces. And instead of using polycose to add calories to my milk, they want me to switch to adding formula because it is richer in vitamins and protein. She had her blood taken last week to check for allergies, and we still have heard no word on that. In the meantime I'm not eating any dairy because it is the most common allergy.

The thing that really shook me up was the discharge forms that stated their diagnosis for this visit. It read:

• Failure to Thrive
• Lack of Normal Physiological Development
• Lack of Coordination

When we were at Children's the first time around we were constantly given the scariest scenarios. I feel like we're back in this same place again. I know they need to cover their bases, but sometimes it's just too much. This has been the longest, most exhausting week and it is definitely ending on a low note. My head is spinning and after watching my sick and tired daughter get poked and prodded all morning long, and trying to console her, I need to mentally check out for a little bit. I will be back to post updates as we receive them. Thank you for your prayers.