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.

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.

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!

The charts don't lie...

Ava had a weight check last night at our family doctor and she has not grown a bit in the last month. Although this did not come as a surprise to me it was very discouraging. Lately I have been looking at other children around her age and wondering if she really is "that" small. I have been starting to feel like she is catching up. She is now in 24 month clothes-a year ago she was still in some 0-3 and is not that much shorter some of the other kids her age. When we saw her lack of weight gain, her doctor brought up the feeding tube again and asked her how I was feeling about it. How am I feeling? Absolutely torn.


On one hand I want her of course to receive all of the nutrition that she needs. In reading about kids that are SGA and those that have RSS, I have seen it mentioned that their bodies are starving because they themselves cannot put enough calories into their body through oral feedings. This breaks my heart. I don't want her body to starve, I want her to thrive and be healthy. I also am so tired of the battle that takes place 90% of the time when she has to eat or drink her bottle. If she could live off of fruit and juice it would be fine but she cannot and she does not want to eat the things that she needs to. Times like this, when she is gagging and saying all done at the supper table, I want to throw my hands in the air and say go ahead, just put it in.


However, thinking of my baby girl with a tube in her makes me want to cry. It makes me feel like we are moving backwards, back to the days of her being connected to IVs etc. Her doctor's appointments have been starting to be farther between and with this new addition, we are sure to be there constantly again. I worry about it pulling out-her doctors assure me this is unlikely but I have heard several people tell me it happens. She is a very feisty little girl who is so sensitive to even her shirt slipping off her shoulder, how is she going to tolerate this? What will her siblings think? How will we get them all to be careful of her? Will I have to constantly be telling Ava that she has to be careful and can't play with the boys because she may get hurt? And what about the risk of infection? People keep bringing this up to me.


The doctor's of course in response to my worries have told me that the risk of infection is manageable. That it is important for her to grow, be healthy, and get the calories by any means necessary-even if it is a tube. That lots of families deal with this and they somehow keep their child away from rough play. That we can manage.


Easy for them to say. They are not the ones that will be doing it. The one that has to do feedings at night. The one that has to see their little girl connected to a machine so she can grow......


In response to my asking if she is "really" that small that we have to do this, the doctor pulled out her growth charts. She explained that while it says Ava is in the first percentile, this is only because the chart does not register percentages below this. That if we look at the line, we can see she is far below. She is not on the charts at all in weight or height to weight. Her height alone, is better than it used to be-but still not on the chart. I swear at one of her doctor's offices it was above the 5th percentile, but her pediatrician said no way. When I told her about the lady in her office last week who asked how old Ava was and then said she is big for her age-she asked if I realize that the woman is obviously crazy. The chart's do not lie, she is definitely teeny tiny.

It is never "just a bug"....

Ava with the puke bucket

Our family has been through the ringer the last month with illnesses. First we all got a sinus thing complete with stuffy noses, coughs, fevers, etc. The next week it moved into every one's chest and poor Ace even had to have nebulizer treatments. Then the following week we each took our turn vomiting. Yuck! The week after that-Christmas Eve it started-we got sore throats and swollen sinuses. Goodness! We have certainly had our fill. Currently Ace is still fighting stomach pains and a low grade temperature and Landon and Ava both are coughing all night and congested. I can't wait until everyone is nice and healthy again!

Through all of this, I of course worry about each of my children. I tried to keep them comfortable, hydrated, and fed. Ava, however, always seems to be in the forefront of my mind. When she is sick, it is not just a matter of worrying about these things, but also worrying about whether she will lose weight or not, how quickly her appetite will return, what meds to give her and which to not give her (for example when she is vomiting I don't want to give her any meds that will make her stomach more crampy), and how much this will set her back. This was especially true during this last stretch of illness, as we come closer and closer to having to make a decision regarding a feeding tube. I am on the fence as to whether I am comfortable with the idea or not and knowing that she had several weeks where she didn't gain weight because she was sick and that she may have even lost is just too much to handle. She goes to her pediatrician Monday to have a weight check and I am anxious just thinking about it.

I am very lucky that I have been able to keep Ava at home and out of the hospital during her illnesses, as I know many kids who are small for gestational age, failure to thrive, and/or have Russell Silver Syndrome often end up in the hospital when they have a bug such as the ones that Ava has endured the last month. However, I still constantly worry about how her illnesses are going to impact the decisions that we make regarding a feeding tube and how they impacted her weight over the last month. It takes Ava so long to gain that when we lose time such as this, it really is a big deal.

Did I miss something?

This past week I have been back and forth to the hospital with Ace. He has been having stomach pains accompanied by a low grade fever for weeks now. At first I just thought he was having some cramping or something and then when he started with a fever he also had a sinus thing going on so I simply attributed it to that. I did take him to the doctor's a couple of times for other things-the sinus cold and then for a vomiting bug-and each time mentioned the belly pains but didn't make a big deal of it. This week however, they got worse and his fever was consistent instead of coming and going. He also had no appetite at all. We ended up in the ER all night while doctors did an ultra sound, blood work, urine analysis, and cat scan on him. They ended up finding what they thought might be the problem-but when we saw the urologist on Thursday, he said that it absolutely was not the issue and that he does not need surgery (the ER dr had said it was likely he would). So now we are back to square one...waiting for stool sample results, and hoping he wakes up in the morning and is miraculously healed.

Ace snoozing in the hospital. This was around 2am...it was a long night

I can't help but feel some guilt over how long it took me to take his pains seriously. If it had been Ava having these, I know I would have been pushing for answers a long time ago. Just as I know when the ER doctor asked when his last bowel movement was, the patterns of it, how his appetite has been, etc. I would have spouted them off instead of really having to think about it. So much of my focus is on Ava, taking note of every little change in her eating, sleeping, breathing, etc. that I feel like I neglected poor Ace. I am sure that I am not the only mother of a special needs child to ever feel this way, but that still doesn't make me feel any better. My new years resolution....to make sure that while I continue keeping a close eye on Ava, I pay the same amount of attention to Ace and Landon as well. While Ava does need special care because of her health needs, that doesn't mean that my boys deserve less than my full attention.

That's a first

Today at the doctor's office, while waiting in line, a woman asked how old Ava is and when I told her, she replied "oh, she is big for her age". I was speechless. That is definitely a first for Ava. I wonder how many 2 1/2 year olds that lady has been around lately because at 20lbs, she is defiitely not big for her age! It was refreshing though for once not to hear remarks about how petite, tiny, small, "cute" (yes, in this instance cute can be a negative thing because I know that it really means extremely small) she is or my favorite, to be asked why she is so tiny-if she is sick. So thank you woman in line at the doctor's for having a refreshing comment and giving me a little chuckle.