Thursday, February 24, 2011

One step forward two steps back...

Today Ava and I had a very long day at Boston Children's Hospital. I woke up extra early planning for traffic and for once, there was none! We were an hour and a half early for her appointment and of course, the doctors were running over an hour late. We did a lot of coloring, eating, chit chatting with other kids, catching up with the social worker, and even took a trip down to medical records to work on getting copies for our appointment in April with Dr.Harbison. Everyone was captivated by Ava walking around with her new poodle purse-picture will follow tomorrow. I am too tired right now to find my camera :)

Once we finally got to see the doctor I was very excited. I felt sure that Ava was going to reach that 21 pound mark and make Dr.Nurko proud. Imagine my shock when the scale showed that she had not gained at all since last week. Normally this would not be such a shock but this child has been eating nonstop. She even has started drinking 7-8 ounces of her Peptamen Jr. at night!!! Up until the last two weeks she has NEVER been able to tolerate more than 4oz in her stomach at one time without vomiting.

Despite my disappointment in the scale, I was able to hold in my emotions and focus on how great her overall weight gain was over the last three weeks. On February 8th she was 19.8lbs and 33 3/4 inches tall. Today she was 20lbs 15oz 34 inches tall. Her pediatrician says she is still only in the first percentile for height but Dr.Nurko swears according to his, she is now actually on a curve for her height!

My optimism was knocked down a couple notches when Dr.Nurko told me he still thinks it is time to be more aggressive. That he thinks Ava would benefit from tube feedings. I asked them why they feel strongly about tube feedings. I explained that her weight and height are not a huge concern to me, just her health. That if they could tell me that tube feedings would fix her GI issues that I am game. Fiona, his nurse practitioner, said that they will not fix her GI issues but that they may prevent her having trouble developmentally down the road due to her current poor nutrition. This threw me. It makes me feel that by choosing not to place a tube that I am being a bad mom. She is not developmentally behind right now. She has some quirky things but is sure to test out of early intervention in a couple of weeks. If only there were a test that could tell me yes your child is malnutritioned and her body is currently paying the price or no, don't worry she is skinny and kinda short but her brain and organs are fine and always will be if she continues on the path she is on (ie not losing weight but gaining at her snails pace).
I then brought up that at her appointment with the Growth Clinic last week the Speech Pathologist said that Ava's chewing is immature. She has low muscle tone which causes her tire quickly from chewing and she also has trouble manipulating her food in her mouth. We speculate that the reason she is holding food in her mouth at times is not always because she feels as if she swallows she will vomit (which is definitely the case part of the time) but that sometimes it is simply because her mouth is tired of chewing. This is likely also the reason she likes certain foods, mac and cheese, peas, spaghetti O's, blueberries, etc. and swallows them whole. (We started to notice that she does not chew certain foods when she threw up mac and cheese two hours after eating it and none of the noodles were chewed) They told me to go ahead and give her calories in easy forms for her (yogurt, formula, applesauce, pudding, etc) when I feel like she is not getting them through chewing food. They gave me some foods to practice with her that will help her strengthen her jaw-beef jerky, slim jims, licorice-and others that will help learn how to control her bite-cheese puffs & pirate's booty. They also said to work on getting her to take bites instead of shoving a whole cracker in her mouth or putting in three pieces of meat at once. I talked to early intervention this week and next week Carole is coming armed with some ideas and things for us to try with Ava to work on this weakness.

I thought sharing this information would cause Dr.Nurko to feel less attached to the idea of tube feedings. That he would see that we have found something we can practice with her and help her get better at. If she does improve in these areas that amount of calories she takes in by mouth may increase. However, he felt it was just another reason we should resort to tube feedings. He did agree though to wait to do anything until we see Dr.H at the end of April as long as she does not lose weight in between now and then. I was relieved about this but still left there feeling a little disappointed and confused about what is the right thing for my child.

Thursday, February 17, 2011

Someday....

As I pack diaper bags and get things ready for Ava's growth & nutrition appointment tomorrow, I can't help but ponder the idea that someday perhaps Ava will be healthy enough where...

I will no longer be a professional diaper bag packer for hospital trips because we will only have to go to a hospital for emergencies instead of every couple weeks.

As I pack snacks for Ava I won't be running their calorie content through my mind trying to figure out what would be the highest calorie choices given that I know tomorrow will be a terrible eating day for Ava.

I will not have to pack three outfits, plan on having two available car seats, two blankies, and a vomit bag ready for the inevitable sick belly that will occur on the way to the hospital.

I will not be an expert speed changer-ready to pull over at a moments notice, whip Ava out of the car so she doesn't choke, change her clothes, put all soiled materials in a plastic bag that I have handy, and switch her to the new car seat all in less than the five minutes I have scheduled into our trip just for this purpose so we will not be late for her doctor's appt.

I will not be able to recite off the top of my head the phone numbers to three different hospitals, extentions to departments, pager numbers, and email addresses of multiple doctors.

I will not have to prepare a baggie of meds to administer while we are out.

I will not stay up all night stressing over what Ava's weight will be tomorrow, poring over my SGA/RSS manual getting a list of questions ready for Ava's doctors, and readying myself for the nutritionist and behavioralist to confuse the heck out of me by making suggestions that clearly will not work for my daughter but that I will try for a time anyways because I will try anything if it will help her grow.

To all those who indulge me in this moment of self pity-thank you.....to those who go through the same thing and understand....perhaps our somedays will come xoxo.

Thursday, February 3, 2011

Time to March for Babies Again!! Get out your shoes and your wallets :)

Click here to see our March for Babies site and to donate!

This will be the third year that we will walk in the March of Dimes' March for Babies. We have been walking with the UMass memorial NICU team every year since Ace and Ava were born. We always have such a great time and love seeing all the other families-especially those who shared our NICU experience with us. We hold them in our hearts forever. It is also a chance to see some of the nurses and doctors who saved Ace and Ava's life!

When I was a scared mom, seeking out information on a IUGR baby (Ava) I was able to find information on the March of Dimes website. It has information for pregnant moms and new moms on so many topics. We are thankful for the research the March of Dimes does and for the wealth of information they provide. Without their research on preemies and high risk pregnancies, our story may have not been such a happy one.

We would love for anyone who would like to to join us in walking and are always looking for donations!! Remember, even the small ones add up to make a big difference!