Feeding Tube - Hospital Stay

Last week we went to weigh Abby and following a week when she had gained 10 ounces - this time she had only gained 1 oz. We called her cardiologist who admitted us to Fairfax Hospital for a feeding tube. We went in on Tuesday with the mission to learn how to use the feeding tube, put one in (they can stay in for 30 days - but sometimes babies pull them out) and for Abby to show that she was gaining weight by using one.



The first time the nurse put in the feeding tube and Linzy just watched - poor Abby coughed, gagged, screamed and cried (Linzy cried too - poor Abby!) The accommodations were less than desirable at the hospital - with their terrible food, pull out chair excuse for a bed, and our Spanish speaking roommate who had the remote control. Countless hours of Spanish television and one night on the pull out chair and we decided to stop being emotional, reassure ourselves that in the end this will make her better, and become quick studies of the art of a feeding tube. After two nights on a pull out chair the doctor told us it was "up to us" when we felt comfortable enough to go home - we decided we were quite comfortable (with the feeding tube, quite uncomfortable in the hospital) and we were home by Thursday evening.



After days of not really ever even going near the thing - the other night while trying to suck her thumb, Abby yanked her tube out... so below are pictures of the insertion of a feeding tube process. (Some staged - as putting it in takes 2 adults - one to restrain, one to insert). We are thrilled to report we are halfway to our nursing degrees - we got it in all on our own!!


Poor, unsuspecting Abby is first restrained with a blanket - to keep her arms from flailing up and getting in our way.

We put a sticky on her cheek, measure the tube by going from her nose, around her ear, down to the bottom of her rib cage, dip the tube in water to make inserting it easier, we take a deep breathe and tell ourselves over and over that she'll never remember this and it will make her better.... and we stick it in her nose. Then, we wait for the inevitable scream, and as soon as she goes to take a deep breath to let out a second scream (closing the path to her lungs) we start to feed the tube in quickly. When we reach our measured mark we use a syringe filled with air and a stethoscope to listen to her belly and make sure the tube is in the right place. We have to check placement each time we go to feed her. (Giving our poor, already irritated baby a very gassy belly!)

That's not staged. Those are her true feelings towards the tube. (Hopefully NOT her true feelings towards us). The tube is then taped in place on her cheek and she's all set for another 30 days or until the next time sucking her thumb goes terribly wrong.

We now feed her 2.5 ounces of high calorie formula every 4 hours - we try to give her one ounce in a bottle so she doesn't forget how to take a bottle - and whatever she doesn't eat plus the other ounce and a half goes through a pump (more beautiful medical paraphenalia in her nursery) and into her stomach whether she wants it or not! She can now eat and sleep or fuss at the same time.

Since getting the tube Abby has gained more weight than she had in her entire life before the tube. Our beef-cake baby girl is now 8 pounds!

Medical Update - 1/14/09

The past two weeks have been all about weight gain. Last Monday, (Jan 5) Abby weighed in at 6 lbs 11 oz - making her quite possibly the only person on the planet who actually lost weight over the holidays. Her cardiologist had us start mixing her formula to make it 30 calories/oz (mixing it according to the directions would make it 20 calories an ounce). She wasn't very hopeful that this would work and started to make plans to admit us to the hospital where we would learn how to tube feed Abby. She gave us until our appointment with her on Wednesday to try the higher calorie formula.

On Wednesday Abby weighed 6 lbs 12.5 oz - so we kept ourselves out of the hospital - and we were sent to check her weight the next day, Thursday, when she weighed in at 7 lbs 1 oz! We couldn't believe it! On Monday (Jan 12) she was 7 lbs 5 oz - and her cardiologist literally squealed with delight - and told us we could go back to just weighing her once a week.

Medical Update 1/6/09

We are so appreciative to all our friends and family who have supported us with their thoughts, prayers, love and prepared meals :) over the first few weeks of Abby's life. It was certainly an adjustment to the path we thought parenthood would take us down - but we have an amazing support system across the country. We want to use the blog to not only keep everyone updated on Abby and all the fun things she does - but also to keep everyone who cares about her updated on her medical conditions - so be sure to click through old posts since only one can show up at a time - and we're going to try to be good about posting medical info as we get it. Here's the journey as it has gone thus far...

Abby was born after a healthy pregnancy and a fairly easy (compared to what we thought it'd be like based on TV and movies) delivery. In the final moments of delivery Abby's heartbeat wasn't able to be detected by the machines - and doctors filled the room to help. She was quickly vacuumed out. We're still not sure if that had anything to do with her health complications - we forgot to ask.

The doctors took her to clean her up and were very quickly able to tell us that our baby appeared to have Down Syndrome. Of course, we were stunned. We had passed on having tests done during pregnancy because we were in the wrong age group to have much of a chance of having a baby with Down's. They also told us that half of all Down Syndrome babies are born with a heart defect - and they thought Abby may have this heart defect. The pediatric cardiologist was doing rounds at that moment up in the nursery - so they asked to take her up to him right away. He did a sonogram of her heart and assessed that Abby has an Atrioventrical Canal Defect - or an "AV" canal defect.

An AV canal defect is a hole in the center of the heart between the wall where the upper chambers meet the lower chambers. Also, the valves that usually seperate the upper and lower chambers did not fully form as two valves - instead it is one valve. All this means that Abby's heart allows oxygen-rich blood to mix with oxygen-poor blood. Most hearts do not have a choice - they send some blood to the lungs and some to the rest of the body - because of the hole, Abby's heart sends most of her blood down the path of least resistance - which is to her lungs. Her body still gets oxygen-rich blood - her heart just works so much harder in order to do so.

Abby started seeing a pediatric cardiologist right after we left the hospital. Ideally she wants to see Abby gain weight and have surgery in which a surgeon would build the walls in Abby's heart when she is around 4 months old. They have told us since the first day that they could do the surgery tomorrow if necessary - they would just prefer to wait.

Abby started seeing a pulminologist in December when her oxygen levels were dropping while she fed. He prescribed oxygen while she eats. She hates it!! But it has kept her from turning blue while she eats. He hoped this would keep her from working so hard and burning so many calories while she eats.

Doesn't the oxygen tank match the decor nicely?

At the end of December Abby still weighed 6 lbs 14 oz - so we're trying a bunch of medications and mixing her formula so it has more calories per ounce. We do weekly weigh-in's and report them to her cardiologist who's been wonderful about coming up with all sorts of different things we can try to get her weight up. We'll keep you posted!

I've arrived!

Hello friends and family! I know you've spent the last few months reading about how Mom and Dad prepared for my arrival - and now here I am! I arrived on November 18, 2008 at 2:23 PM. I weighed 6 lbs, 14 oz and was 18 1/2 inches long. Since then I have been very busy - and now I'm almost 7 weeks old. Let me fill you in on my first few weeks of life...

It all started around 1 AM when Mom started having contractions. She and Dad finally went to the hospital around 3 AM. Mom's smiling in this picture - so this must have been after the drugs, and while she still had pocession of the remote control. Just before I was about to enter the world, the machines lost my heart beat - suddenly it went from Mom, Dad and the nurse in the room to at least 10 different doctors and nurses. I arrived to a large audience - which I feel was the greeting I deserved. When the doctors took me to clean me up - they were able to assess that I was born with Down Syndrome and a heart defect - so I said a very quick hello to my mom and dad - then I was immediately taken to the NICU for tests. Dad came with me.

Here I am in the NICU after all my tests. The nurses there thought I was HUGE compared to the babies that they usually meet. I did really well on all the tests, so the doctors decided I could go to the regular nursery at 6:30 PM.

Here is my first official picture with my mom. It was 6:00 - and we'd barely met.

Here's my first official picture with my dad. I'm wearing my hat knit by local ladies for babies in the NICU. The nurses were so excited because they don't usually get babies that would fit into this hat - and they thought it was really cute.

Grandma Nathlich came to meet me that night.

Aunt Emily came too. Even though I was only able to wear hospital blankets and t-shirts - she and I made plans to keep me super trendy for the rest of my life. She already got me my first pair of Uggs. Now that we've seen the size of my feet - we're thinking I'll wear them next year.

The next day Grandma and Grandpa Howe came to meet me. Grandpa takes all the pictures - so there aren't many of him. The rest of my time in the hospital I had to spend in the nursery under the sun lamps because I had jaundice. Mom and Dad weren't allowed to take pictures - but I would lay there in my diaper with big sunglasses on. I LOVED it. One of the nurses told mom and dad that they need to take me to the beach because I was such a good tanner. While I was lying there with no clothes on, I accidently scratched my face with my long nails.

We spent a few extra hours in the hospital for me to be under the sun lamps, but around 7 PM on Thursday, November 20th I was allowed to go home. Here I am all straped into my car seat ready to get out of the hospital!

Here we are - ready for our first car ride as a family. See how happy Dad is? That's because he doesn't have to sleep on a pull out chair anymore.

This is me on Thanksgiving when we decided to go for a walk. It was a nice warm day - but I'm all bundled up like it's snowing out. I'm mad because I wanted to just stay home and watch football. Mom was teaching me that the best way to watch football is with your eyes closed. I almost had it mastered when they decided we should get some fresh air and exercise.

Ah yes. My first Thanksgiving. Mom, Dad and Grandma Howe thought it would be so funny to put me next to this turkey because it weighed twice what I do. As you can see, I didn't think it was so funny. It's the first thing I'll tell my shrink about when I'm old enough to talk about it.

This is my first real bath. I have since learned to love them. But here I was, trying to relax in the warm water when this thing called Callie comes and sticks her scary, hairy face in mine. They keep calling her my sister... she must have come from the shallow end of the gene pool. I really hope I don't grow up to look like this.

No matter how they try to brush and tame my hair - this always happens. It makes me worried that perhaps I will grow up to look like Callie.

This is my Christmas card picture. Mom bathed me, brushed and brushed my hair until it was as calm as it gets, then put me in my pretty black velvet dress and proceeded to take nearly 200 pictures of me.

It was a long night. I'm not sure I'm cut out for this modeling business.

Here's our car all packed up for my first road trip! Boy do I need a lot of stuff. We're going to Connecticut to Grandma and Grandpa Howe's house for my first Christmas.

Road trips are a lot like football - best with your eyes shut.

Here's some more quality time spent with my eyes shut. Isn't my puppy so cute? I think she's actually just insanly jealous and depressed about her new role as "dog" now that I'm the "child".

Here's my Uncle Alex. Who's cuter with their tounge out?

Here's my Uncle Charley. He's going to take me to Yankees games despite my father's wishes that I only ever love the Red Sox.

Here's mom and me decorating my first batch of the annual Howe family Christmas cookies. I'm telling her to watch out - Nikki is about to steal our cookie. (Nikki lives at Grandma and Grandpa's house - she was my mom's first rescue puppy.)

Ohh, Dad, look at this - I got some really good stuff in here!

Here's Grandpa Howe and I ringing in the New Year watching football. Maybe he taught Mom that the best way to watch is with your eyes closed. He was a master of that skill. Happy New Year everyone! My New Year Resolution is to be better about maintaining my blog - so be sure to check back! In the meantime, if you just can't get enough Abby (and who can, really?!) you can check out my Grandpa Howe's photo website. Everytime I see him he takes lots of pictures of me. His site is: http://www.craig.zenfolio.com/