Merry Christmas from Evie and her mommy!

Merry Christmas to everyone from Evie!  Evie has been busy meeting relatives and waving to the masses. She literally waves to everyone.  She got so many presents, that Grandma has to bring some back for us when she comes back to Boston. Her favorite part of the presents was the wrapping paper! 

This is our second Christmas with Evie, but in some ways it feels like our first, because we were in the hospital last Christmas with a one week old baby! 

What a difference a year makes! 

We've been working on extra tummy time for Evie during the holidays.  Her upper body strength is great, but her legs don't want to move along with her arms to crawl!  The best incentive to get her to move is her feeding tube syringe. This is good news and bad news. Good because we have something she really wants, and bad when she tries to grab the syringe while we are feeding her by g-tube. We have spilled quite a bit of water and formula this way! 

If you are the praying kind, please pray that she would be able to strengthen her legs so that she can crawl soon.  We are grateful for how wonderfully she is doing. We have been extraordinarily blessed. 

Evie is so happy to look at all the lights up for the holidays. She is also happy that so many people want to carry her! 

Merry Christmas, everyone! 

You are ONE!!

My dearest girl,

I waited and prayed for a baby for so long, and here you are. I've had a whole year with you!  You aren't even really a baby anymore.  You are a squirmy, curious toddler with an infectious laugh and a smile that could light up the room.

You are also a fighter.  You lived through 6 weeks in the NICU and charmed everyone around you, and you made open heart surgery look like a piece of cake.   The smiles that you gave after heart surgery made me realize that 1) you were not feeling well enough to smile very much before, and 2) that you have the cutest dimples. The experience confirmed to me how much God has been providing for us on this journey of being your parents.

You (mostly) patiently wait for us to change your feeding tube dressing or let some gas out of your tummy. You put up with Mommy's playing dress up with you and telling you to pose for the camera. You even give a cheeze-y smile for me when I ask. You charm everyone at your many hospital appointments and wave enthusiastically at everyone. You have a little bit of separation anxiety right now like any other kid, and I secretly love being the one who you want to see. You give the best hugs when I've been away at work and you finally get to see Mommy. Your big eyes that searchingly study me when you're supposed to be sleeping--how can I be annoyed with you? You are just too cute.

The song below was my theme song last year for my life. It was a reminder of the gift of a baby girl I was going to meet soon, and I had no idea how your extra copy of a chromosome would affect our lives. The song was written by another mommy and daddy of a baby with an extra copy of a chromosome. You are beautiful inside and out and I wouldn't change anything about you.

Evie, you are a joy to Mommy and Daddy.  You have surpassed my expectations in every way. We are forever changed for the better by being your parents.  I pray every day that I would be a good mommy to you. You are our perfect gift!   Happy First Birthday, Evie!


How To Act Around a Feeding Tube

Sometimes when I'm hooking up Evie's g-tube in the food court in the mall, I look around to see if anyone is watching.  I still brace myself when someone shows interest in what we're doing.  I have no idea what they will say or conclude, but I do my best to explain why she has a feeding tube in a practical way.

The Feeding Tube Association just released a brochure that tells our friends and family how to be helpful to us.  I love their list of what is helpful and what is not so much, that I had to post it.  Here is the full brochure:

Evie's mommy's commentary in italics below (my original g-tube entry is here):

What is Helpful.
  1. Listening. Parents who are just starting on this process have a lot on their mind.
    They have concerns and they may not know all the answers yet.
    When Evie just got her g-tube, we were having trouble figuring things out post-NICU stay, and answering questions about the g-tube so early on was very hard for us.  But as we talked about it later with friends, it helped us to better formulate (in our sleep-deprived state) what questions we needed to ask the pediatrician.  
  2. Helping by doing other chores. Cooking, straightening up, taking care of our other children.
     Cooking and cleaning were so helpful to us in the early days. We are indebted to both of our moms for coming to stay with us in snowy New England and cooking and cleaning for us. 
  3. Understanding that parents are the experts. This can be hard if you have
    raised your own children. Unless you are involved with conversations with
    doctors, specialists, nurses and are with the child day and night, you may not
    fully understand the situation.    I am still navigating this.  I am the one who takes Evie to her feeding and GI specialists and I think day and night about her feeding. In my spare time, I am looking up ideas for food on Pinterest or reading the comments of other tubie families on a Facebook group.  Advice is nice, but when it comes from someone who doesn't know about g-tubes and feeding difficulties, it doesn't have the same effect. 
  4. Asking questions is fine. Just be mindful of our feelings. This is our child.
     I am totally ok with questions. It shows people are interested.  But sometimes the answer is so long, that it takes me a moment to figure out what to say.  Some good questions to ask are:  How are you feeling about her feeding these days, or How is she doing with trying new foods.  
  5. Talk directly to an older child. He or she may be able to answer questions.
  6. Understanding that tube feeding isn’t unpleasant. It is just another way to
    get in calories and hydration.  The first time I explained Evie's feeding tube to a young child, I just matter of factly said that Evie didn't eat enough using her mouth, so we had to use the tube to get food to her stomach. The child accepted this and went off on her way. It was that simple.
  7. Learning more. Try to understand the child’s medical conditions.

What isn’t Helpful.

  1. Saying you “hate” the feeding tube. Also, don’t say you wish that the child
    would just eat normally. We also wish that there wasn’t a need for a feeding
    tube, but we are very aware that tube feeding is making it possible for our
    children to get the nutrition and hydration they need to live, grow and thrive. If
    a child couldn’t breathe well enough, you wouldn’t hate the oxygen tank.
     This is an important one for me. More than anyone, I want her off the feeding tube, but right now it is a blessing to us, and I appreciate everyone treating it as such. It is what makes her look so strong and healthy right now. It is what enabled her to be strong enough to have heart surgery. It is what got us out of the NICU, because otherwise we might still be there today! 
  2. Feeling bad for us or our child. Empathy and acknowledging challenges is
    fine, but don’t feel bad for our child if he or she is unable to eat certain foods.
     Evie's birthday is coming up, and she will get a smash cake just like anyone else.  She won't eat the cake, but I sure hope she will eat some of the frosting!
  3. Help us find ways to make gatherings about more than food.
    This isn't as big a deal for us right now. We want Evie to notice that people are eating, and that they enjoy it.  
  4. Telling us that it is just a matter of finding foods that our child will eat. If it
    was that simple, the feeding tube wouldn’t exist. There are underlying medical
    issues that often can’t be seen.

     No one has said this to us, but I can see how this would be really frustrating for another parent of a tubie.
  5. Comparing apples and oranges. Something may have helped your friend’s
    cousin’s child with reflux, but that doesn’t mean it will help a child with a
    different medical history and conditions.
       When someone gives me advice, I listen and then sort out what might be helpful and what is not as applicable to Evie.  I need time to process and feel comfortable about trying new things with her. 
  6. Telling us not to feed our child in public because it will make this person or
    that person uncomfortable.
    Children shouldn’t have to be fed in a corner or a
    bathroom, or not fed at all because of social concerns.
     Thank God no one has said this to us! I think I would either cry or want to punch them. This tops my list of most unhelpful things to say.
  7. Giving a child food without the permission of the parent some children
    have dietary restrictions or are unable to eat food safely by mouth. This one is so important to me. With Evie's history of aspiration and her low oral muscle tone, I am pretty sensitive about what she can and can't eat. Just the density and weight of the food we give her can make her gag. She still has thickened fluids because it is hard for her to coordinate her swallowing quickly enough for liquids like water. 
If you've read this far, thank you!  If you've asked me any of these questions, please don't feel bad. I hope this helps you know how to help us in the future.

Here are some more FAQ's specific to Evie:

Q: What is she eating these days?
A: Evie is enjoying a luxurious taste of different foods. She eats expensive Siggi's kefir yogurt and Mommy just used a Baby Bullet for the first time to make her Asian pear puree and sweet potato puree.  She is still unable to eat lumpy foods without gagging, and because we don't want to create oral aversion, we are slowly introducing lumpier foods.  She eats a lot of Plum Organics pouches, and loves berry flavored things just like her mommy.
Q: How much does she drink?
A: Not much. Maybe two sips of formula if we are lucky. We've mixed in yummy things, changed formulas, tried different temperatures, and she just doesn't want to drink. Thankfully, she lets us spoon feed her, but that doesn't give much volume, so we end up giving the rest by g-tube.
Q: When will she get off the g-tube?  
A: It's going to be a long journey. For some kids, it takes years, and for others it takes months.  We are currently switching to a supplemental formula to see if Evie will get hungrier with less volume, but need to make sure she still gets enough calories and hydration.  This question stresses me out and makes me feel like I'm not doing enough to get her off the g-tube sometimes.   But we can't rush Evie--she has to feel like eating is fun and that she wants to eat.  This means stopping her oral feeding even if she's only eaten 2 good bites, and then trying again after a break, but not forcing her.  Right now we are up to about 5 good bites a meal.

Thanks for your prayers and good wishes for Evie!  To be continued...
Tubie button cover in the holiday spirit!

A couple of good milestones

I just realized that today we hit 2 good milestones!

Firstly, we said goodbye to one of Evie's many medications. This is her 6 month anniversary since her heart surgery for three holes in her heart!  She has had to take half a baby aspirin as a preventative measure for six months after the surgery. Today we stopped on doctor's orders, and good riddance!  Cutting pills in half and then getting them to dissolve in a small syringe of water to put in her g-tube is not something Daddy will miss. 

The other milestone is that we don't have to see the Ear, Nose and Throat specialist anymore!  Since she doesn't wheeze with stridorous sounds from laryngomalacia, and also since she hasn't had any ear infections, the doctor doesn't need to see Evie anymore unless she gets an ear infection.  Kids with Down Syndrome are more vulnerable to ear infections due to their ear anatomy, but Evie has been lucky so far. Thank you, God!  One less doctor to visit! 

Three cheers for Evie! (This originally autocorrected to 3 beers for Evie, but lucky for her I caught that.)

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about mak...