When Pretend Feels More Real Than It Should

Like many girls (and boys) we have a play kitchen in our house. It's stocked with all sorts of pretend food, utensils, pots, pans and other necessary objects for a kitchen. With help my daughter will happily stir food and pretend to eat it. She very dutifully answers yes or no about the "taste" of the pretend food. Sounds like a great moment, right?

Not exactly.

The thing of it is that all our daughter does is "pretend" to eat food. She will happily ask for food and put it in her mouth. After a few moments or minutes the food comes right back out again. You can imagine how great our floors look sometimes. At this point it has pretty much become a part of our world. I've bought and tried every food possible - spicy soup, bright green pudding, ice cream, Fruit Loops, pickles, mango, the list goes on and on. So far nothing has worked. Since we know she can swallow we hope that she will soon figure out that it is okay to swallow.

As many parents of non-eaters know, it can be tremendously hard to have a baby who doesn't eat. On so many levels. One of the hardest areas is socially. Eating is so.....normal. People just can't grasp the idea that someone willingly will not eat. I've had family, friends, strangers, doctors, etc. tell me to try all sorts of things. And I do. I have. I will. But so far none have worked. Most people are well meaning. They truly want to help.

Then there is the flip side. Some think that we just aren't "doing it right." If only that were the reason. If only it was a matter of me being retrained because let me tell you - I would sign-up for that course in a heart beat. And I'm positive I wouldn't be the only one there. But alas. That's not quite it. It isn't a matter of buying the right food or feeding it to her in a certain way.

I know in time it will happen. It will. Until then I smile and try not to laugh (or sometimes cry) when I ask my daughter if that bite of air was indeed delicious.

It usually is.

Of course.

Documenting my preemie birth experience

I'm glad that people are finding the 20 questions useful. As promised, here are my responses to the questions. I used my son's birth for this one. I took out all of the NICU related questions because I think I'll do those as a separate set of answered questions.

1. What are the facts?
   a. Weight/height/gestation info.
   Dominic was born weighing 1 lb. 15 ozs., he was 14 1/2 inches long and was exactly 31 weeks.
   b. Birth info – why did you have to deliver early?
   I had to deliver because I had HELLP Syndrome. My blood pressure was skyrocketing, my kidneys were beginning to fail and Dominic wasn't moving as much as he should have.
   
2. What are some of the firsts you remember most?
   a. First seeing him/her
   I got to see Dominic for the first time as they wheeled me from recovery to a regular room. I remember being amazed at how tiny he was and yet he was still able to hold my hand for a moment.
   
3. Beyond your significant other, who was the first person you told about what did or was going to happen? Why?
   The first person we called was my sister. She was going to college at the time and living with us. She came right over and stayed with my husband which was great.
   
4. What was the scariest moment?
   One of the scariest moments for me was when I realized that I was going to have surgery. I had never had surgery before and the only thing I could think about was those Reader's Digest stories where the pain medicine doesn't work. In a way I'm glad that those thoughts were there because they quite honestly made me focus on something other than the fact that I was delivering our baby so soon.
   
5. What was the happiest moment?
   Getting wheeled into the NICU and seeing my son. It was also scary but seeing him there looking like a real baby (I seriously had no idea what to expect) made me happy. And hopeful.
   
6. When you look back, what makes you laugh?
   I will never forget this particular moment. The doctor had just told us that they needed to deliver right away. In my head I'm thinking "Okay. Well, I haven't had Lamaze classes yet so this will be hard. But women did it without classes for years so I'm sure I can do it." My thoughts must have been apparent somehow because suddenly the doctor looks at me and says "This will be an emergency c-section." Of course I looked straight back at him and said "Right. I figured that was the case."
   
   The other funny thing I remember is not being able to stay awake during the first 24 hours after surgery. They had to give me magnesium sulfate and that stuff knocks you out (esp. when they give you a really high dose). I would fall asleep in the middle of conversations. At one point they had brought me a Popsicle and I distinctly remember my brother-in-law sitting there and having to tell me over and over again "Debbie. Don't fall asleep. You have a Popsicle."
   
7. What was the hardest part?
   I had to be put under for the surgery because my platelet levels were so low. Waking up in recovery I had no idea if my baby had made it, how he was doing or anything. My husband came in pretty quickly to tell me we had a boy and how much he weighed. The nurses promised to bring in a photo however it seemed to take forever. I felt like I was in that room for hours (turns out it was only about an hour and a half) and just knowing that my son was in the NICU somewhere and I couldn't go see him was really hard. I did finally get two Polaroid pictures to look at and I will always treasure them.
   
8. What surprised you the most?
   I was really surprised by how hard it was to recover from the initial surgery. In some ways I'm thankful that my first 24 hours were foggy because I didn't focus on the fact that I couldn't see my son. The next day I thought that I was doing much better and started to grumble to the nurses that I was FINE despite what they said. So the nurse had me get up and sit somewhere while they changed the sheets on the bed. Not more than 30 seconds into it I thought I was going to throw up. Hmmm. Perhaps the nurse did know what she was talking about.
   
9. Who was there? Who helped you the most?
   Many of our family and friends came out to support us which was great. My parents, my husband's parents and my sister (and her husband) were there quite a bit and that helped a lot.
   
10. What are you most grateful for?
    I'm grateful for the anesthesiologist in the operating room. Just as she was putting the mask on to put me under she said "You are going to be fine and your baby is going to be fine." That helped me relax so much and I will always remember that moment.
    
11. What sounds or smells do you remember?
    Hmmm. I don't really remember anything right now.
    
12. If you could capture one moment in time and take a picture of it – what would it be? Why?
    I think it would have to be the moment they wheeled me into the NICU and I got to see my son for the first time. It was scary but also so wonderful. Even though we remained worried about him and his survival for the first few weeks, I think in that moment I knew he would make it.
    
13. What would you change about the way you did things or a decision you made?
    I had known that things weren't quite right for the last couple of months (I was really small) and I wish I had pushed harder for them to check on the baby. Since he was my first I didn't really know what the expect so I wasn't sure if I was right or just being paranoid.
    
14. What have you learned from the experience?
    I definitely learned to trust my instincts more. If something feels wrong (or right) than I try to listen to what that inner voice is saying and go with that. I've also learned that sometimes the most important things are taken out of your hands (the care of my son) and that has to be okay in order to get to the next step (taking him home).
    
15. Have you changed from the experience?
    I think so - I hope so. Among other things, I've become much more assertive with medical personnel. This is my body (or my child's body) and I will always have a say in what is done and why.
    
16. How did it make you a better person?
    I think that the whole experience has made me much more thankful for what I do have. It has also made me realize that things happen that we didn't want or have any control over but we have to make the best of it. Whatever that might be or mean.
    
17. What would you tell other people who are going through the same thing?
    Trust your gut. Doctors are often too quick to disregard a potential problem. Friends may tell you - "oh it's nothing. Don't worry about it" And they might be right. But what if they aren't? If you really feel like something is off or not right, ask to be checked. The best/worst that can happen is that they tell you everything is fine.
    
18. Would you/could you do it again if you had to?
    Absolutely! And I did (with far more issues the second time - lucky me).
    
19. How did it feel when you knew you were going to be taking your baby home?
    Exciting and a little bit terrifying at the same time.
    
20. Five words that describe the experience
    Scary. Amazing. Terrifying. Humbling. Incredible.

The Proof is in the Pudding

Or yogurt as the case may be. I would like to present my latest adventures in the world of feeding/weight gain issues. Otherwise known as "how to tell that your life is slightly left of normal."

Proof #1: Last night I was at the grocery store (THE happening spot on a Friday night). I was cruising through the yogurt section and stopped to buy some Danables Crush Cups. For those of you unfamiliar with this item, it is yogurt in a cup that you squeeze in order to slurp the yogurt out. I see it as a personal testament to how much I love my son that I let him eat these things - I hate the sound of slurping. Anyway, lately he has been eating two of them each day during his snack times. As I went to pick up more of them last night I did a happy dance. Not because they were on sale (that dance came later) instead it was because they are 100 calories each. That meant an extra 200 calories each day! Exciting stuff for a mom whose son needs to gain weight and doesn't seem to be able to.

Proof #2: At the checkout I was unloading the baby food I had bought for my daughter. She still isn't eating orally - we are putting it down her tube. Anyway, as I was doing that I was hoping with my whole being that the checker would not ask how old my baby was. Because my baby isn't really a baby anymore. She's two. I wasn't really prepared to explain the whole reason why my two year-old is eating stage 2 fruits and vegetables. And not really eating them at that. So instead I was fully prepared to take complete ownership and parental claims of my nephew. My sister's beautiful, healthy eight month-old who does eat stage 2 baby food. I'm sure she will understand. With his adorable cheeks he never stood a chance against me taking ownership anyway.

Life in our preemie world

Lately we have had a bit of a fussy preemie on our hands. I think our recent vacation to Disneyland took more out of her than we realized. Since Olivia is delayed in expressive speech, she can't communicate frustration very well. Well, unless you count the ear splitting screams that she now resorts too. Not a fun sound. When she's extra tired it can be difficult to really determine what she wants/needs.

So what's a tired preemie mom to do?

Turn on some tunes and get dancing. Physical motion tends to calm Olivia down and she really enjoys listening and dancing to music. I couldn't find my iPod so I had to frantically flip through our CD collection and find an album that wasn't full of slow songs but had lyrics that were okay for a five-year-old. So we rocked out to Elvis and eventually had her calmed down enough to go to sleep.

So tell me, what's your desperation moment strategy for calming/distracting your preemies?

Life in our preemie world

This picture is one of the stories of our life right now. This blurry shot perfectly captures Olivia right now. Because we have a crawler on our hands. Ever since little girl finally got her whole body to figure out how to crawl she has been a blur of motion ever since. Occasionally she gets stopped by her oxygen cord (or her brother) but not for long. Off to find new things to get into, new drawers or doors to open, new books to pull off the shelf. She is so unlike her brother who was a model child in this area - he rarely opened cabinets or drawers unless they had his toys in them.

And so we adjust. We find new places to put things and new locks for the drawers. And our son learns that his cars can't always stay EXACTLY where he wants them to because his sister may have another idea about that. Like seeing how far she can throw them before someone notices :)
It's a challenge but a super fun one to watch because every moment is like a new discovery for her. And us.

What new skill has your preemie learned how to do recently?

Life In Our Preemie World

Have you ever noticed that no matter how far your preemie has come, you can often find yourself thinking of the beginning?

This past Friday I had to take Olivia to Stanford for some testing. One of them required sedation so after it was done we had to stay in the PACU recovery area until she was fully awake. Even though she wasn't there for something serious and she came out of sedation fairly quickly, just being in the room surrounded by monitors, vents, nurses, etc. brought me right back to the NICU. Right back to the moments of fear and worry.

Thankfully this time I had a beautiful little girl to hug and take home right away.

Are there any specific things that can trigger a trip back to those NICU memories for you?

Life in our preemie world

A couple of weeks ago we took the kids to ride on Thomas the Train. If you have Thomas fans in your house and have never been - I highly recommend it. They have a life size model of Thomas and you get to ride behind him on regular train cars. In addition to "riding" Thomas they also have crafts, trains to play with, jumpy houses, etc. Dominic has been a Thomas fan for several years so this was our third year getting to ride however it was Olivia's first year and I really wasn't sure how she was going to handle the experience. It turns out I didn't have to worry at all. She loves the motion of trains and was very interested in watching the beautiful scenery around us.

So interested. So intent. Loving every minute. Now that's what I call a fun day.

What do you like to do with your family?

New Feature: Life in our preemie world

I'm adding a new feature to the blog today - Life in our preemie world. I thought it would be fun to add some stories about my two preemies - Dominic and Olivia. I hope you enjoy the glimpse into our life with preemies.

In our house cars (or really anything that can be considered transportation) reign supreme when it comes to toys. Dominic's fascination with cars came early. He would stand at the front window of our house and watch the cars drive by. Often times the cars would honk their horn so his early word for cars was "beep beeps." When Dominic and his first set of Hot Wheels met it was love at first sight. We have since expanded into racing cars, monster trucks, more cars, trains, etc however cars are still a favorite.

I think the love continues with Olivia. She loves to watch Dominic race his cars around the floor or table. Occasionally we would sneak one over to her when Dominic wasn't looking. She liked to hold them and then play with the wheels. My mom thought that perhaps Olivia needed her own set of cars so she brought her a pack of Fisher Price cars. Nice big ones that were safe for a little person like her. Guess what? She wanted nothing to do with them. It was Dominic's cars or nothing. Probably should have guessed that one.

The picture above is from the other night. Dominic had some elaborate "event" that required him to have his monster trucks and cars from the Cars movie out at the same time. Now that Olivia is able to scoot around more she was over there as fast as possible. We decided that she needed her own bin of cars to sort through.

They were occupied for a good 1/2 an hour. Hmm. Perhaps mom has her own love of cars too.

Happy Thursday everybody!