On the mend

My poor girl has been so sick.  We took her to the pediatrician last week and put her on an antibiotic. She apparently got whatever H and I had that turned into some type of upper respiratory infection.  By last Friday she could barely breathe.  She spent most of the weekend screaming and had so much trouble resting.  We spent the weekend contemplating a trip to the ER...which we never want to do.  Our wonderful neighbor saw that B was sick and brought over a nebulizer on Sunday night.  That thing made a huge difference immediately and she was able to rest.  

After a trip to the doc on Monday morning we found out there is no sign of pneumonia!  We borrowed an oxygen saturation monitor from a friend.  B just isn't able to get enough oxygen into her system just yet so we have her on .25L of oxygen.  She is also doing breathing treatments every 4 hours.  

I think yesterday was her day.  She finally felt better and I got a few smiles.  She did run a fever, but I can tell she is on the mend!

We have SO many things to be thankful for, but after lugging around an oxygen tank (just think...if you move to a different room you have to take the machine with you!) I have a new respect for all our blessings.  

We have an oxygen concentrator for the house...this is just a big machine that plugs into the wall and uses oxygen from the room.  It has a smaller metal box that goes with it (pediatric flow meter) since B is tiny and needs a tiny amount of O2.  Then we have very small oxygen tanks for the car...we have never used these tanks before this week but are super thankful we had them...if we didn't we wouldn't be able to leave the house.

We had 2 other doc appts this week besides the one Monday.  We saw an ear, nose, and throat doc...no news from that.  We also saw B's cardiologist.  Her heart looks the same.  She is still not in heart failure and has pulmonary hypertension!  Yay!  

Thank you for all your prayers...we appreciate you all so much!

C

Checking In

This isn't even going to be a real post...it has just been so long y'all are starting to call and text to check on us.  Thank you!

We are here.  We have all (except Adam) been sick.  We are still sick.  Once we feel better I will be back with lots of updates.

Battley seems to be doing well now.  She is her normal happy self again.  I listen to her often with a stethoscope just to know what her normal sounds are...this way if something is off I should know.  It's not something I do every day but just something I do when we have a few minutes on the changing table.  I did notice an extra sound with her breathing yesterday so we went back to the pediatrician today.  They did hear a "very small" amount of fluid in her left lung.  This could be normal...especially since she sleeps on that side.  We decided to do a different antibiotic and listen closely...should clear right up.  Prayers are always appreciated though!

We also had our first appointment with the maternal fetal specialist today to scan the new baby.  All looks great!!  Yay!!

C

Birthday Pics

Whew...glad to have gotten those on here and out of the way!

I knew I would forget something last week when I blogged...Remember a few weeks ago when I posted about voting for our Palliative Care team to win a 10k grant?  Well...THEY WON!  Thank you all for voting!

On to a special gift...

Remember before we had Battley we literally had:

Adam's bassinet

2 blankets

1 "woobie"

2 gowns

1 hat

This girl needs another room to hold all her stuff now.  We have been so blessed by all our friends and family and even strangers helping us collect all the things she needs...and more!

I received an email from Kaity a week before B's first birthday.  She reads our blog and wanted to make a quilt for Battley.  I am so touched by her kindness...I'm a big mess of emotions now though so you will have to read for yourself.  I will start crying like a baby if I tell the story.

http://kaitylee912.blogspot.com/2013/04/one-night-i-was-blogging-and-just.html

Here is B this morning on her quilt from Kaity:

We love it!

C

So much info I can't come up with a title

So much to get to...hope I don't forget anything!

We lost the cord to our camera, and I can't get pics from her birthday party until we find it.

Here are a few pics from lately until we can find it:

B had her vision checked today.  We didn't have a vision or hearing test when she was born so it was about time we got around to that.  Her eyes look "great" and "healthy"!  Whew...I thought everything was good, but it sure does have a nice ring to hear that something is "normal"!

She is super sensitive to heat and light.  I found her a cute pair of sunglasses in Target a few weeks ago.  When I put them on her...whoosh...those eyes opened right up...she loved them!  Then my brain kicked in and decided to see what sunglasses were actually recommended since she liked them so much.  www.babybanz.com  These actually have the right UV ratings for what she needs...approved by doc today...yay!

PT, OT, and ST are all going well!  B and I are learning so much and she is showing progress in all areas!

Hmmm...what else??  Oh yeah...Battley Cate is going to be a big sister later this year!!  We are very excited.  I know what everyone wants to ask so I'll just answer it now...

We are not concerned at all about another chromosome abnormality.  There is no greater chance of us having another child with one than anyone else.  We have faith that everything will work out just as it has before.  I am considered high risk and will have a test (non invasive) done with the maternal fetal specialist in a few weeks.  Everyone who has been down this path is considered high risk from here on out apparently.  Of course we would love your prayers for this new baby!  I think it's a girl...Adam says boy!  We have had 2 sonograms to date and everything is good.

So...this brings up some funny business.  As some of you have witnessed first hand, people used to ask about B all the time with her ng tube.  Now that we don't have it everyone asks the usual baby question.  EVERY SINGLE TIME..."Aw...how old is she?"  When I say "ONE" the next question is ALWAYS "Aw...was she a preemie?"  So I'll admit that sometimes I say "no" and keep walking.  I'm not trying to be rude, but I haven't gotten my story down to a short enough length for some circumstances.  Sometimes I tell B's story and sometimes I just hand folks a card with our blog info so they can read for themselves.  Sooo...here I am with a one year old who is the size of a 3 month old (11lb-8oz last night) and looking pretty pregnant already!  It makes for some funny stares and let me just tell you...folks are NOT scared to ask whatever they are thinking!  If there is an opportunity to have some fun...count me in!  So...I've got my friends working on elevator stories for when I get asked about having 2 babies so close together.  Here are a few examples:

* They are twins...she (Battley) just came a little early.

* We are shooting for 20, so we have to pack them in close together!

Now on to feedings...I probably will not be able to put into words what kind of a change has happened since I blogged last.  You know it used to take HOURS to feed B before her surgery...it's what I did all day long.  Well...I knew about another feeding method that doesn't use a pump, but I was scared to try it because it is so drastically different.  A few Fridays ago I just decided to go for it and see what happened.  IT WORKED!  We have been doing this ever since then...2 weeks now I think.  Here is how it works:

*connect a line to her mic key button (you use this even with the pump; it's about 12 inches long)

* connect a large syringe to the end of the line without the plunger in it

* pour the milk in the syringe and gravity moves it into her stomach as fast as she can handle it...it's almost impossible to overfeed this way b/c without pushing milk into the stomach it just goes at its own pace and won't stretch her stomach out beyond where it should go

So now let me tell you how long this takes....

10 MINUTES!!!!!!!!!!

And without spitting up there are never any problems!  It's been a life changer...literally!

We have come so far!  Thank you all for your continued prayers!  I will do my best to post about a special gift she received before this weekend.

C

One Year Stats

I'm behind...what's new!  

March 22, 2013 Battley's Stats:

* 11lb-2oz

* Height we don't know because it's different each time she is measured!

* wears some size 3months and all 6months in pajamas...she has very long legs and feet

* wears size 2 diapers

* eats 130mL 4 times a day using the pump (7am, 11am, 3pm, and 7pm)

* medicines: Prilosec for reflux and a very small dose of Phenobarbital

* has had 2 professional haircuts to date

* loves music, bath time, snuggling, sleeping in, therapy (except tummy time), and is the happiest baby ever

The Tuesday after her birthday she got her first tooth!  She loves it.  She keeps pushing her tongue over it trying to figure out what in the world it is.

Hmmm...what else?  We had a wonderful Easter.  Battley looked so adorable in her dress.  The Easter bunny brought her a new tooth brush among other things!  It was a great day to celebrate Jesus' life.

I need to get Adam to show me where the camera cord is so that I can upload pics from her birthday and Easter to the blog.

Post Surgery Update:

The gtube works really well!  The new pump is wonderful.  Her feedings are now taking about 45 minutes each.  There is another way to feed her without using a pump.  I use this method when I give her water and juice (prune...yum!) in the afternoons.  You hold a large syringe without the plunger upside down and attach it to her gtube using a 12" line.  Then you just pour what you are giving in the syringe and gravity does the work.   It is really the best way because it is so fast and you can't really over feed doing this because gravity won't let you.  We will transition to this feeding method over the next few weeks.  This means it will take approx 15-20 mins to feed her each time.  What a change!  This gtube has allowed us so much more time to play and do other stuff.

Just FYI...she has a Kimberly Clark Mic Key.

About the Nissen...You all know we had mixed feelings about doing this.  We left it up to God to let us know which was the right decision.  Since we never felt like it was not the right thing to do, we did it.  I cannot accurately put into words the amazing effect this has had on Battley's life...and ours!  I am SO thankful that we did this.  They basically wrapped the top of her stomach tighter around the esophagus (okay now my nurse friends may need to correct me here) to prevent her from spitting up or throwing up.

Battley used to spit up each time she strained to go to the bathroom...it was almost every time and up to 4-6 times a day.  Lots of T18 kiddos have issues with this any many elect the same surgery.  Because she did this we could not ever leave her unattended for a second...I'm talking we were scared to walk into another room to grab something and run right back.  We lived with a bulb syringe no more than arms length away at all times.  I've said I would be more likely to leave the house without a diaper instead of leaving the syringe.  The possibility was that she would choke on her spit up and aspirate.  It was also very painful for her and many times we had to give her oxygen after she spit up because she would turn colors.  We are talking very serious.

Well...she has not spit up one time since the surgery!  It's literally a whole new way of living!  She is more comfortable, we are more comfortable, and it was absolutely the right thing to do for her!  Thank you Lord for leading us down this path.  It sure was a scary one, but it was so worth it!

More later when I can get to those pics

C

Palliative Care

Miss B and I have been BUSY.  Her birthday party was great!  I want to blog about it and share some pics, but that will have to wait for a day we have more time.

You have all heard/read me talk about B's WONDERFUL doctor before.  We totally adore him and his team.  I wanted to share an article about their team.

http://www.foch.org/2011/04/nurturing-life-when-life-is-threatened/

This was written back in 2011, but it is a quick look into what the Palliative care team does.  They have been a lifesaver for us.  Adam and I often say that we feel like we have been to therapy after we have an appt.  It's SO much more than a doctor who is in and out in 5 minutes.  These people get to know you...get to know your family...and are there for it all!

I've been on Facebook and seen what some parents have to go through to get simple care for their children with T18.  It's not pretty.  Of course the palliative care team sees many other types of cases, but t18 is what I know.  We are SO blessed to have found this type of care for Battley.  This team supports our decisions, and I truly consider them friends.

They are in the running for a $10k grant.  Please take a moment to vote for them.  It's a vote for Battley and a vote for Mississippi!  It's a one time vote.

http://vote.livestrong.org/regions/4/

Click on Palliative Care

Then Blair E Batson Hospital in Jackson, MS

THANK YOU!

C

ONE

Battley is ONE!  One year of bliss with our tiny princess!

This week has been very emotional.  I've been thinking over the past year and a half...thinking about what it was like to be so excited about a new baby, the heartbreak of learning there may be something wrong, the anxious anticipation of waiting for test results, the prayer...oh, the prayer, the results...the devastating results, the gift from God of a better attitude and HOPE, the new friends, the planning, the praying...did I say that already?, the sleepless nights, bonding with B while she was in my belly, then the day came...the day of her birth.

The doctors, the nurses (oh these wonderful people), the photographer, the LDP, the room, the anesthesiologist, Dr G, the moment I saw my precious girl for the first time!...there was nothing like that.

I'll be honest...the rest of that day was fuzzy.  I remember bits and pieces.

Then the WILDEST ride I could not have ever imagined happened!  

We decided a long time ago that Battley belonged to Jesus.  We were going to accept and enjoy whatever time we had with her.  

This has been a wonderful year.  I wish I had the time to sit and write thank yous to each one of you who have walked this journey with us.  Adam and I could not have done this alone.  We thank God for putting each of you in our lives.  

This post is a jumble of emotions, I know...it may take me a few days to come off this roller coaster.  

I know I said I would post each day of birthday week...it was just too much...sorry!  We had a blast doing something special each day.  B is actually still sleeping bc of all the fun this week!  

Birthday party tomorrow...see you there!

C