Ruby Hope McKee Starling

Lets start with the weekend.  Our good friends Laura, Joe, Frances, and Jim threw Ruby a party on Saturday afternoon.  We packed up all of our hand sanitizer and went Laura's house for some fun.  Ruby got to meet a lot of her adoring fans. She also seems pretty interested in the fact that she's on a cake.

The party was the big excitement until yesterday morning.  Ruby went for a swallow study, upper GI, and chest x-ray.  It was long morning of tests for everyone especially Ruby.  The swallow study consisted of me feeding Ruby a bottle with barium formula in it while pictures were taken.  Ruby did OK and ended up taking 20 ml from bottle during the study.  A speech therapist and radiologist were present during the test.  She isn't aspirating or having trouble swallowing.  She is just having trouble establishing  a good rhythm of suck, swallow, breath.  She did start to get a bit tachypnic during the study and the speech therapist seemed a little surprised by it.  I had to explain to her that that was normal and it was probably time to stop with the bottle.  I'm starting to wonder if maybe Ruby just isn't ready respiratory wise to get rid of the tube.  After the swallow study they did the upper GI.  Thankfully they put the rest of the formula through her tube.  The radiologist did see her reflux during the UGI.  From what I understand, we didn't learn anything we didn't already know.  We did rule some things out which is good. 

Finally after those two tests it was time the x-ray.  Ruby handled the the first two test really well.  She didn't like being held down and she fused but not bad.  This was the first x-ray we've had done since she left the NICU.  We've never had one when she wasn't at least slightly sedated.  Since she wasn't sedated they had to put her in this tube thing, that looked like some sort of  torture device.  At this point Ruby flat out lost it.  She screamed louder than her morphine wean days.  Luckily the x-ray didn't take long.  In less than 2 minutes she was out and in my arms.  From Chris and I's uneducated glance at the films it looks like she has not re herniated.  We get another x-ray at 9 months just to make sure.  Since she does have a patch her chances are a little higher that she will reherniate.  We all want to catch it early if it does happen.

After her busy morning Ruby took a long nap and even went to bed early.  Which was good becasue our friend came over and babysat Ruby for a couple hours while we went out.  Today is our 7th wedding anniversary.  Seven years ago today Chris and I were in Hawaii getting married.  It was nice to be able to get out last night have dinner together, even if we hurried through it to  get home to Ruby.

Sorry, for not updating about the weekend.  We had a very nice weekend including Ruby's Debut Party.  I promise to post pictures later today or tomorrow.

This morning we are headed to Dell Children's Hospital for a chest x-ray, swallow study, and upper GI.  I wasn't aware of the upper GI until yesterday.  We also get to argue with the billing department.  They say we haven't met our deductible for the year.  Which is flat out ridiculous.  ECMO alone was 25,000 a day.  Oh, the joys of dealing with insurance. 

I'll try to update as soon as we are home and Ruby is napping this afternoon.

I wanted to answer a couple questions first.  Ruby is on 27 calorie fortified breast milk.  We are using Carnation Good Start Gentle Plus  formula.  Regular breast milk is 20 calories per ounce.  Her feeds are pretty calorie dense.  She's been on that since mid-June.  She is gaining weight well.  I'm assuming we'll stay on the higher calorie formula for some time.  The nice thing is due to the NG tube our insurance pays for the formula. 

We have been really lucky as far as health insurance goes. Both CHOP and Texas Children's (had we chosen to go there) were in network.  Ruby's lifetime maximum is 3 million, she's used up over half of that.  We did have to pay a deductible and we have copays for every office visit.  In the big scheme of things though we've been really lucky.  Throughout all of this it has been wonderful to not have to worry about we were going to pay for her various medical needs.

Now for the fun stuff! We had fun Friday night at our house. 

We've been working on letting her experience different textures of foods, spoons, and toys.  Our speech therapist gave us a Nuk brush and we use it to eat  and play with.  I usually dip it in whatever food we're working with.  I then roll it on her arms and cheeks before putting in her mouth.  To make things even messier we let her dip her hands into the food also.  This is another way for her to feel the texture and hopefully get used to it.  As you can guess this makes for one messy baby.  Usually by the time we're done everyone is covered in whatever she's eating.  Last night was a pear night. 

We also use a baby spoon as well.  Her speech therapist recommended one with a thick handle and wide shallow spoon part.  I also ordered some spoons with bumps on the underneath side. 

We also let her play with the spoons and nuk brush throughout the day even when she's not eating. 

We've also been practicing taking the bottle while in the high chair.  This is mostly becasue during the swallow study she needs to take at least 10ml while sitting in a chair and facing me.  The bottle just added to the mess last night.

I also figured it would be easier to take her from her highchair to the bath.    Before her bath and since Chris and i were already covered with pears we had a dance party in the kitchen.  It was Friday night after all.

After all that it was time for a much needed bath and bed. 

This post  mostly for CDH parents.  Again family and friends feel to read.  It might give you a better understanding of what our day to day life is like.  No pictures today.

I looked at our calendar and I realized that we do have a busy week next week.  For some reason I though we had a couple more weeks until  the October check-ups start. I used to be able to go to the grocery store without a list, becasue I could remember everything I needed.  Now I need list for things I need to take to the grocery store with me. 

Ruby's swallow study and chest x-ray are scheduled for Tuesday morning.  Then on Thursday she has her normal therapy appointments and we meet with the GI doctor for the first time. I'm kinda nervous about the x-ray.  I know it's to check and make sure everything is where it should be and that her lungs look good.  It's a reminder of how our days were controlled by how the x-ray and blood gases looked.  Ruby's last BMP was perfectly normal.  Even her white blood cell count which had been on the high end of normal back in July.  Hopefully her chest x-ray will be, too.

We have been playing around with Ruby's feeds a bit.  We are trying to make her hungry.  The need for KCl every 6 hours  makes that tough.  We dropped the volume of her middle of the night feed that is tied with the KCl to help this.  It was going great when we were giving her 3.25 ounces every three hours during the day and then 2.75 ounces at 1 am with her KCl.  We then tried to get the 1am feed down to 2 ounces which is the bare minimum to keepher  tummy happy with the KCl.  That meant increasing the volume of the feeds throughout the day.  We boosted her daytime feeds up 3.5 ounces to make up for the 1am feed. We also wanted to give her a few more calories.  It didn't go well.  She would fuss after each feed and fall asleep.  We brought her back down to 3.25 ounces and she doesn't seem as uncomfortable after each feed.  I'm guessing she just isn't able to handle that much volume.  She has also been getting more formula and less milk.  I am nearing my goal of 6 months for pumping.  We will continue to receive donated milk, even after the 6 month mark.  This will make our day to day lives so much easier.  On that note if any other Moms want to talk about pumping please feel to email me.

Feeding is still a struggle. It's amazing how feeding problems are a "family" problem and not just Ruby's problem.  Every aspect of it takes time and  patience from everyone involved.  Feeding sessions usually last an hour from start to finish.  This includes time for milk to go through the NG and th 20 minutes of sitting  on an incline to help with the reflux.  That gives us a two hour reprieve between each feeding session to play or sleep.  Sometimes we decide Ruby just needs a brake and give her a feed "for free".  Especially when it is very apparent that she wants NOTHING to do with the bottle.  It's  hard to keep each feeding session a pleasant experience for everyone.  Ruby has made small, but significant achievements lately when it comes to feeding.  When handed a new toy she automatically brings it to her mouth which is great.  She is starting to actually swallow some of the sweet potatoes we give her.  She is even starting to reach for the bottle and bring towards her mouth when we offer it and she's in the mood to eat.  These small things mean we are the right track, it's just a very very slow track.

 As we head into the weekend lease keep Jamie in your thoughts.  He is currently in the hospital with pneumonia and I know his family would love to take him home.  Also, little Carter is set to be extubated today!  Lets all hope  both of these CDH survivors have good days today.

Actually we stopped counting Ruby's age in days as soon as we left the NICU.  Chris will sometimes do it.  I on the other hand am glad to not have too. 

Things have been holding steady at our house this week.  No major changes to anything.  Just a nice quiet week.

Ruby is starting to use her rolling ability for her own good.  She can now reach out  roll  to get a toy (or cat) if she wants it.  I don't know if Bobby and Ella quite understand how their peaceful lives are about to change.

A couple of the girls I taught with last year made Ruby some onsies and she is finally big enough to wear them!  Thanks Jenee and Ellisa!

It's finally chilly enough here to need a light jacket.  The fashion possibilities are now endless.

She's perfecting her "I'm bored with getting my picture taken" face.

First off, Ruby wants everyone to know just how good she's doing.  "Thumbs up" as far as she's concerned.

Ruby is doing OK as far as Mom and are concerned.  I drug her into the pediatrician's office on Thursday because she had a stuffy nose.  She wasn't running a fever or breathing any harder than normal.  We just wanted a professional to listen to her lungs and make sure she was doing OK.  Her doctor said her throat looked a little red and that she might have a cold.  We've been watching her and she hasn't gotten any worse.  The good news is she weigh in at 13 lbs!

Ruby's feeding is still a problem.  We are trying everything we can, but we can't seem to get any where near getting rid of the NG tube.  She is taking 3-4 ounces TOTAL on a good day by mouth.   She needs to take 24 ounces a day by mouth to get rid of the tube.  We've tried letting her get hungry.  When we go 6-8 hours between feedings she is hungry, but she gets so tired after drinking 1-2 ounces that she falls asleep.  It also takes her close to 45 minutes to drink those 1-2 ounces. This says to me that she isn't able to handle full feeds by mouth respiratory wise.  I plan on discussing this with her pulmonologist at her next appointment.  We are also going to see a GI specialist about her reflux and eating issues.  Her pediatrician feels it's time we get a GI's opinion on the reflux and feeding issues.  I'm torn.  I already have to play he said he said with the pulmonolgist and pediatrician.  Adding another doctor in the mix is going to be tough.  Hopefully the new doctor will be able to help.  Do any other CDH babies see GI docs?  We are trying not to get discouraged about the feedings.  It's a battle we fight 6 times a day.  I now understand what my OB and MFM meant when they said "long term feeding issues" could be expected with a CDH baby.  For once I was hoping we wouldn't get the worst possible outcome for something.  Ruby has already overcome so much.  It'd be nice if she got to take the easy street for one thing.

We did introduce pears into her diet and she seemed to like them.  She still likes sweet potatoes the best. We haven't been pushing solids to much.  We don't want to over stimulate her.

As for speech and physical therapy.  We've decided to forgo the ECI benefits and stick with the hospital until private home visits are available.  We are on a waiting list and have been told it will be 2-3 months.  Chris and I both feel Ruby needs weekly visits.  We do all the "homework: her therapists assign us.  We also feel that since she is having so much trouble feeding weekly speech therapy is an absolute must.

On a good note.  Ruby is now rolling over completely.  She can roll from back to tummy and back to her back all on her own.  This is HUGE!  She can also hold her head up and look BOTH directions.  Ruby has been working so hard and it shows. 

Ruby also appears to be getting her first tooth, which might explain the nasal stuffiness, too.  She is one drooly baby!  She also loves to gum anything she can get into her mouth.  She hasn't been cranky at all about it.  We know she has a pretty high tolerance for pain.  I'm sure as time goes on she'll let us know if she's not happy about getting teeth.

Mom and Dad are both doing well, also.  Chris is working hard as usual.  I have deferred my spot in the New York Marathon until next year.  I just wasn't able to put in the training miles I needed to run it this year.  I have a spot in next years race, and we'll be able to go as a family.  I am training for the Austin marathon in February.  Official training started last week.  It's going to be a challenge to get all my runs in before Ruby wakes up and Chris goes to work.  A 4:30 am alarm is really really early.

All we have the next two weeks are therapy appointments.  The first week in October we make the rounds to see all the Doctors for her 6 month check-ups.

I have also made a page with instructions on how to donate blood in Ruby's name.  Please see the tool bar at the top of the page!

I've got a lot to update everyone on.  A long update will have to wait until later.  We've got a busy day planned today.  The Honda has to go into the shop.  I need to get my long run in. The lawn needs mowed.  Chris is on call.  AND Amy and Marie are coming to visit tomorrow.  Crazy, huh?

Here are some pictures to hold everyone over until tomorrow or Monday.

Here's Ruby learning how to pet Bobby.

Looks all that hard work in PT is paying off!

Last but not least, here's Ruby saying "Sorry Tim for puking on your new carpet.  Reflux sucks!"

This is mostly for other CDH parents.  Family and friends are welcome to read on.  It might not be that interesting and I don't have any pictures today.

Ruby has speech and physical therapy once a week at Dell Children's Hospital.  Speech is to help with the PO feeding (some places an OT will do feeding).  Physical Therapy is for developmental delays and torticollis.  We have a script from her doctor(s) ordering once a week visits.  I HATE taking her to the germ infested Children's Hospital.  Plus we are in Texas which is close to Mexico, which is where swine flu came from.  Don't laugh, my mind can have Ruby back on ECMO in 2.5 seconds.  I'm really not up for any, "you're over reacting comments."  I have us on a waiting list for home visits, but it's a LONG list.  They said 3-4 months.  I also have signed Ruby up for the Early Childhood Intervention Program through the State.  ECI does home visits!  The catch is ECI only wants to come out once a month.  EVEN though I have a script for once a week therapy.  Also, I'm not supposed to do both the hospital and ECI.  Which we are doing this week simply becasue I called ECI to get the ball rolling while we were still in the NICU and her first session will be this Friday.  ECI also doesn't have a dedicated Speech Therapist for eating issues, at least not in my zip code.  This all of course is going by what I understand.  To add to the confusion, our doctors have repeatedly told me to "just do both."  I'm at a loss for what to do.  I don't want to make any agency upset or brake any rules.  I also want what is best for Ruby.  We have given her nothing but the best so far and I don't intend to stop that now.

I know programs  vary by state, do you use the available government program?  I know it's a balance between getting sick and getting her the help she needs.  Do you do private therapy at home or do go hospital or treatment office?   Our health insurance covers the PT and ST.  Money (thankfully) isn't an issue.

Other than Ruby taking absolutely nothing by mouth yesterday.  This week has been going pretty good.  She seems to be a little congested, but nothing serious.  She's taking a bit more by mouth today, but no where near the amounts she was taking last week.  I already have a call in to her pediatrician about changing her feeding schedule.  If the trend continues this afternoon I plan bringing it up when they call back. 

That's what I get for posting at 9pm on a Sunday after a long weekend.  I forgot about our Sushi outing.  We met some friends for Sushi yesterday for lunch.  I figured Sunday at 11:30 at a Sushi restaurant wouldn't be crowded.  It was fun and we were the only customers, so we didn't have to worry to much about her getting sick.  We didn't offer her any, but I was happy to have some.  I couldn't eat it while I was pregnant.  I have now had all of the forbidden pregnancy foods!  I feel like CDH mom's don't ever really get to celebrate not being pregnant anymore.  We know that as long as our babies are inside us we are breathing for them.  The real fight begins once they are born.  I had such a hard time with nausea during the pregnancy, on some levels I was really looking forward to not being pregnant anymore.

Ruby looks like she having trouble helping Dad what to order.

I do have a funny story about Ruby.  At 4:30 this morning, she set off the baby monitor by grunting.  As all CDH parents know grunting is a sign of respiratory distress.  I jumped out of bed and ran into her room.  She was far from respiratory distress. She was grunting, her face was red, and her legs were straight up in the air.  She had the biggest poopy diaper EVER.  It rivaled some of the morphine withdrawal poops.  The funny thing was she didn't even wake up until I had the diaper off of her.  All she did was open her eyes look and me and grin.  She promptly went back to sleep.  I was laughing so hard, I almost woke up Chris.

We had a nice weekend full of friends and fun.  Most importantly it FINALLY cooled off outside.  We also got some much needed rain.  We do however wish we hadn't gotten 6-7inches in one day.  I guess beggars can't be choosers.  The rain finally stopped this evening and Ruby got to see her first Rainbow!

Ruby discovered how much fun hanging plants can be.

Look at that head control!  Ruby's starting to show the torticollis who's boss.

We also decided to give sweet potatoes a try.  She seemed to like the taste!

She wasn't so sure what to do with them once they were in her mouth.  She didn't swallow much.  We are however very happy that she seemed to like to taste and texture of them.  We'll give them another try tomorrow.    She is still averageing less than 3 oz  of milk a day by mouth.  We're all trying and hopefully one day we'll get rid of the ng tube.  Her reflux seems to be getting worse again.  We had a good week with almost no puking.  We've had a few episodes this weekend.  I think last week we found the sweet spot for the meds to weight ratio.  I'm assuming she's gained just enough weight to throw things off again.  I'll give it couple more days and then call her Dr. about weight adjusting her prilosec.

Really though what's cuter than a baby with sweet potatoes smeared all over their face?