The "H" Word

Hey strangers!  I feel like it has been forever since I have updated.  Sometimes updating this blog feels like a chore.  I have been keeping everyone somewhat updated on Sunni's Facebook page so hopefully you all aren't too upset with me :)

Sunni is doing really good!  Since the last blog she has been making all progress.  She got to full feeds and got to be taken off of TPN and lipids. *Hooray!!*  She is still having a lot of output from her g-tube but is throwing up less.

She had her surgery this past Monday, February 25th.  She went from a G-tube to a GJ-tube.  I have explained this before but it is basically a tube that goes through her stomach and bypasses it to deliver food (formula) straight to the small intestine.   Hopefully one day her stomach will decide to start working and she will be able to at least get food into her stomach but only time will tell.  Sometimes when kids get bigger and more active motility increases and that is possible but Sunni has a pretty extreme case.  The surgery took 2.5 hours when typically it only takes 15 minutes for a person/baby with a normal anatomy.  So if/when the tube gets pulled out by accident or something happens to it we are going to be in BIG trouble!  I have already been having nightmares over this, literally.

So before surgery we knew that going home is going to be coming up pretty quickly.  They had told us that after surgery she needs to get back on full feeds and needs to come down to 1 liter of oxygen before she can go home.  She was on 2 liters at the time and we were not real sure how easy it would be to get her to 1.  So the day after surgery they took her down to 1 and she rocked it!  The next day they went down to .5 and  again, she did well!  So TODAY they decided to see if she needed her cannulas at all so they turned it off.  So far she has been doing great!  I have very mixed emotions about this.  I am SO happy and thankful that she is breathing room air BUT I do not like the thought of going home without oxygen at least for emergencies.  Sunni is unpredictable.  You just never know.  Going home is scary anyway but going home without all the gadgets and monitors that she has had since day 1 is terrifying.

Since she has met her goals the plan is to go home next week if everything continues to move in the right direction.  We do not have a day yet.  Shawn and I are so ready--and the boys too!  I have said it a million times; even though we are ready and excited we are also scared and concerned.  Sunni will not be a normal baby.  We are going to have to be very cautious with her.  She will be very susceptible to sickness.  She will always have respiratory issues.  The everyday cold will hospitalize her.  The thought scares me to death!  With that being said we are going to have set rules for our home to protect Sunni especially during cold and flu season.  I know my friends and family will understand because they do not want us to be put right back in the hospital after this 5 month stay.  I have really dreaded typing this since day 1 but it must be done.

*All visitors must have a flu shot and have had a dtap within 10 years.  Absolutely NO sniffles even if you think it is allergies.  No kids under 14 until after flu season.  After flu season any kids that come over have to be current on their immunizations.  Smokers have to wear a gown.  Everyone must wash their hands and arms 100 times then sanitize.  Okay, maybe only 2ce.*

I am not wanting to offend anyone but just protect my little girl that we have fought for.  I wish things did not have to be this way.  I did not know how fortunate I was having two healthy boys.  Our lives have been changed forever.  BUT she is worth it.

Sunni is a fighter.  Her fight will never be over unfortunately.  But we are ready to move on to the next chapter.  I want to thank each and every one of you who have been on this roller coaster with us since day 1.  We would never have made it this far without your love and support.  So many of you have prayed for Sunni and  my family and we could never thank you enough.  You diligently kept up with our story;  cried with us, prayed with us, smiled with us, and rejoiced with us.  Thank you from the bottom of my heart for that.  You are the reason I was able to stay "strong" through this.  We love you and Sunni loves you.

By the way---For some of you that have no idea what the H word is--its home :)  lol, kidding.  They say not to let the baby know the plan or else they might act up so that plan gets ruined.  I am not that superstitious but I am not taking the chance either!

Happy Valentines Day 2013

Loving on her Monkey

No Cannula! And BOTH shoes on! :) 

GJ tube

So cute--Getting an EEG

Momma's Girl

Headed down to surgery in her Wagon

Sweet, Sweet Sunni <3

Praise Report-4 Months!

Yes!  A praise report!  I have been waiting a LONG time to be able to write a true praise report.  Sunni has had a good WEEK!  Not just day---but week!  It is the first time in her life that she has had a good week.

She is still throwing up several times a day but that beats the 10+ that she was before!  She seems to be a lot happier and is throwing smiles out like crazy!  Hallelujah!

My parents came to Houston to visit Friday (Feb 1).  It was a great time for them to come because she was in a great mood, smiley, and having some of the best days of her life.  They enjoyed seeing her and I certainly enjoyed them.  I actually came home with them and now Shawn is on his way to Houston so he can visit with  Sunni and I can have boy time.

SO--As I wrote in the last blog we are just waiting on GJ tube surgery which could be in the time frame of February 11-March 17.  The reason a date it not set yet is because they are waiting on her Gtube to heal.  I will update as soon as I hear when the surgery might be.  I am SO ready for her to come home but so very scared and do not want to rush things.

The only real significant thing that is happening right now is feeds.  The doc wants to get her off TPN and lipids ASAP.  TPN has given Sunni the nutrition that she needs and has not been able to get with formula/breastmilk since she was born.  TPN also has negative effects on the body.  It can cause liver damage and other things that I started reading about and stopped because I did not want to freak myself out.    So right now she is on 14 ml's/hr and she needs to be on 24/hr before they can turn off the TPN.  They have been going up by one in the morning and another one at night (so 2 a day).  If all goes well and she is still tolerating going up she should be able to get to 24 by Monday.  I am so excited about this!  I can not wait to get rid of that yellow bag!

Today she is 4 months old!  Wow!  Where has the time gone?

She discovered her tongue!

Big smile!

Smilin' for her Nurses.

Chillin' in her Boppy

Attempting to make Handprints...

Hand Print or T-Rex?  LOL

We decided to go with feet instead.  Our awesome nurse Michelle made her this shirt--ruffles and all.  Michelle rocks!

Momma's Girl

They can NOT wait for their Sister to come home! :)

The Plan

We finally have a -plan-.  I kind of feel like we have has a planless plan for a while now.  I know that does not make sense but you get the point, right?

Sunni has been doing pretty good for the most part.  She has been throwing up a LOT though.  Saturday was a record high of 10-12 times just on the day shift.  It was miserable for her and heartbreaking to watch for me.  I hate it!  The amount of times she throws up all depends on if her g-tube is draining properly which is does some days and does not other days.  I keep Shawn updated and it was/is aggravating for both of us to feel like there is something they can do about it to make it start working again so that she will not throw up as much.  You can plainly see that is hurts her.  It is bile.  We all know how bad bile burns.  It even burns her skin where it gets on her cheeks.

Well---they say there is nothing they can do to fix the gtube since it has not been long enough since it was placed.  They did do another GI test on Friday to see if they could see what the problem was or if there was one at all but it showed it to be fine.  They put in 60cc's of contrast through the gtube and into her stomach and were able to pull 40cc's back out.  The rest *supposedly* went through.  If you have follwed Sunni's Story closely you know that nothing has gone through and past her stomach before.  I was shocked to hear this.  The contrast was in her intestines the next morning seen by xray.  I dont know think all 20cc's went through because she did throw up that afternoon.  This finding excited me!  I have hope that she will not *always* have to be fed into her intestines.

One of our night nurses somehow got the gtube bag to start working Sunday night so her throwing up has lessened HALLELUJAH!  Today she only threw up like 3 times.  She had a really good day--it made me happy.  When Sunni is happy, mommy can be happy.

Monday we got one of our favorite dr's back on service.  He will be on for two weeks so I think it will be a good two weeks.  He is really agressive and proactive.  I really trust him.  He is very straight forward and I like that.  He is not the kind to just set back and ride things out--he likes to see change.  So today he met with surgery and GI and they devised a plan. Finally.

Getting a GJ tube is the next step.  She can not get a GJ tube until 8 weeks after her last at the very earliest and her Gtube spot has to be totally healed.  It has to be a hole that is part of the body.  They will start looking and checking on this in 2 weeks (which will be the 8 weeks after last surgery).  The surgeon would actually prefer it to be 3 months (yes, MONTHS) after her last surgery which was December 17th.  So I am just going to assume that she will not be getting a GJ tube until around March 17.  I do not want to set myself up for disappointment.

So assuming March 17th is the surgery date and  assuming it will take a few weeks to heal and make sure that she is doing ok (eating, gaining weight, pooping etc)....I am just going to guesstimate we will be here til April.  I know this is what needs to be done but it is really heartbreaking to think about being away from home that much longer.

I can not believe Sunni will be 6 months (or more) when she finally gets to come home.  I remember reading a CDH blog about a little boy named Jude when I was pregnant and I was so sad for he and his family for being 6.5 months before getting to go home.  I guess I never considered that Sunni's Story might be written that way as well.  I still talk to Jude's mom from time to time on fb.  These CDH mom's are so strong.  As I read their blogs and hear how strong they sound I wonder if they are secretly feeling as defeated as I do some days.  No one understands until they have been there and done it.  No one understands what these babies endure and will endure for the rest of their lives.  Even when we get home life will never be the same.  I tried not to turn this blog into a pity party but just pray for me.  I am really struggling with this.  I just really miss my boys, husband, and family.

And to leave you on a sweet note..........

Peek-A-Boo Momma!

She has the CUTEST yawn.  It is a sweet sound.

Her legs are getting really bruised from her daily shot of  Lovenox.  Poor baby.

Really, Mom?  Hehehe

Daddy asked if I was happy---So Mommy sent this pic and  asked him what he thought.

Best lil Sister

A Gift from God

Smiley Face

Hello all!  I just wanted to write a short blog to share my excitement for the day.  My little girl is starting to smile!  She has gave very few smiles here and there for about 3 weeks.  She does not hand them out often though.  She really likes smiling at some of her favorite nurses and she is really stingy with them with me.  BUT not *as* stingy today.  And yes, the smiles are finger induced, but I don't care!  I will take it! You will have to read the blog before you get to see the pics! :)

If you are being directed here from Sunni's new facebook page some of this update will be old news.  For those that do not know I created Sunni a separate fb from my own so that I could better manage my friends and family and keep everybody updated on Sunni that actually wants to hear.  I never imagined that so many people would "like it."  I saw a lot of nurses on there--which is a little intimidating--but I welcome them either way!  https://www.facebook.com/SunnisStory

So yesterday Sunni just was not acting like herself and I could tell that she did not feel very good.  She did not want me to hold her which sucked for me but I understood.  She was desatting as low as 62 for no apparent reason.   Usually when she desats it is because she is choking, coughing, gagging, or throwing up.  None of those were happening.  It just seemed like she was breathing harder and was very uncomfortable.  Her sats are usually in the 90's.

I told the nurse that it just was not like her to just desat without an obvious reason.  This nurse was one that we have had before but not regularly.  So she called the dr.  (I so want to add "and the dr said" right here-haha--Pre-K teacher at heart).  The doc upped her oxygen, stopped feeds, and ordered an xray and cbc.  Sunni immediately felt better with the added oxygen support.  The xray was unchanged from the last so everything looked ok in that area and the cbc was fine.  So either the feeds (5cc/hr) were doing it (somehow) or she just needed some breathing support.  Either way she got some relief and had a MUCH better day today!

This morning they started the feeds back up to 2cc/hr and left the oxygen up.  No other changes.  I mentioned in the last blog that her blood pressure has always been high so they ordered an ultrasound on her kidneys and a urine test.  The urine was fine.  One kidney is bigger than the other but looked fine so they are not going to put her on medication for high bp (right now).

So for those of you that did not skip straight to the pictures without reading---here you are!  I am going to attempt to post a video too.  Hopefully it works :)

Bad quality because I could not let her know I was taking pictures.  haha

This melts my heart.  I love her so much!

You are my sunshine...

Little smile without touching her chin! :)

Smiling is Exhausting :)

Busy Day

Do not fall out of your chair!  Yes, I am blogging two days in a row.  I had the time so I figured--what the heck?

Today Sunni has a very busy day!  First I got to change like 3 dirty diapers!  Every time I changed her it was not just wet but dirty!  Yay for #2!

Second we got LOTS of snuggle time in.  We got to give kisses and hugs (already converting her to Momma's girl).  She practiced tummy time and some different swaying movements.  I tried really hard at getting a smile but failed.  Since she got the NJ tube she really doesn't want anything to do with her mouth and movements make her gag-ugh!

Then she had musical therapy and physical therapy at the same time.  That really helped her with the PT since she was more focused on the music and interaction than she was the movements and exercise.  She does not really love to be bent and twisted all over so you can imagine what a help it is to have a distraction.

And last but certainly not least she got to leave her room today and it did not involve a trip to the OR!  Yay! It took a lot of work but thanks to her very awesome and adventurous nurse she went on her first wagon ride!!  She did not seem to mind it one way or the other but it was nice to get her out of the room.  Mommy might have had more fun than Sunni but that is ok!  She just looked around most of the time.  Sometimes she got a look of worry but for the most part she did really good.

GOOD NEWS for the day is they went up to 4cc/hr on her feeds.  (She is currently getting breast milk that I pumped back in October).  And the BAD NEWS is that she has had high blood pressure basically since the day she was born so they did a urinalysis and a kidney ultrasound today.  More than likely she will be put on a med for high blood pressure.  Bummer!  More meds.

I started the day by taking Shawn to the airport--so he is gone for 3 weeks.  Is it possible to miss him already?  He spoils me so much that I really do not know what to do on my own.  I have the best husband there is!

Tummy Time--Snugglin with Momma

The RT said she looked "Pudgy."  She took offense to that. lol

Musical & Physical Therapy Today

Wagon Ride!  1st time leaving my pod (other than OR time).

100 Days Old!

I got back to Houston on Wednesday night.  Sunni has really grown a bunch.  Her 3 month clothes do not fit anymore!  Me and Mimi got to go shopping while I was in Amarillo and bought her a whole bunch of 6 month clothes.  I thought they were going to be huge on her but they fit pretty good.  Amazing.

Not a whole lot has changed since the last blog.  I know you probably feel like I say that a lot but it is true.  And it is really frustrating on this end.  I knew this was going to be a long stay but I just imagined, hoped, and prayed that we would fit into that average 2-3 month hospital stay.  Unfortunately that is just not going to happen for us.  There is not a projected end date in site.  It is all unknown and that sucks.  I however do not want her home until I feel completely sure it is safe.  Today is 100 days of life!

3 days ago (on Friday, January 11th) Sunni went to the OR to get an NJ tube placed.  That is a tube that goes from the nose to the small bowel, the jejunum (NJ=Nasojejunal).  She has had an NJ before from the last surgery but it came out probably by the squeezing of muscles.  So on Friday she had to be sedated and intubated for the procedure   They tried to do it while she was awake on two occasions but she did not cooperate (who could blame her?) and because her anatomy is so different from you and me.  

Friday night they started her off on 1 cc/hour.  Just so you know cc's and ml's are the same and that is barely any.  Each day so far they have gone up 1 cc so today she has been on 3/hr.  So far she has done good on that and no milk has backed up into her stomach.  Hopefully that means that everything is going the way it should and she starts pooping regularly.  She has pooped some but nothing substantial.  If the NJ stays in place we will be in good shape!  Miss Sunni likes to pull at it though!  Eeek! 

So we originally thought the next step would be to get a GJ tube in a few weeks.  GJ stands for gastrostomy jejunostomy.  Basically it goes through the stomach and into the small intestine.  Then she will not need the NJ through her nose.  The GJ is more permanent.  Well---that is going to be a while.  She is not big enough to get a GJ tube just yet AND they want to give her some time to heal since her last surgery was not that long ago.  So we wait.

The goal is to keep increasing feeds and pray that she tolerates it and starts getting nutrition from milk and not TPN.  She will start growing (she does everyday) and eventually she will be big enough for the GJ tube and we can bring her home!  All of that sounds lovely but it will take an unknown amount of time and that is if everything goes according to plan.  And we all know how "plans" work.

In other non-feeding news she is doing pretty well.  She is so alert.  She always has been.  She is behind in a lot of developmental aspects but we work with her and so does OT and PT.  She also gets musical therapy which she really likes.  She is still throwing up several times a day.  They have to clamp her G tube off to giver her meds and she barely makes it an hour before she is ready to throw it all up.  Now that she has a NJ tube that runs down the back of her throat it moves when she moves and it REALLY makes her gaggy.

She has really became a daddy's girl in the last 2 weeks that he got to spend with her.  I told her that we were going to have to change that after tomorrow when he leaves.  She is supposed to be a momma's girl, darnit!

Thank you for keeping Sunni in your prayers.  We really appreciate it.  Sunni is like a celebrity back home.  I love that people keep up with her and pray for her daily.  My support system is what keeps me going!  Thanks again! :)

3 Months-Jan 6th!  Daddy was in charge of these pics since Mommy was at home.

Her room is (yep) PINK!  Her Mimi and I got a lot of work done on it.

Daddy did a lot of shopping while Mommy was gone.  This is 1 of the many outfits her  got.  She is modeling it well.

She hated her swing at first!  Now she can tolerate about 15 minutes.

This is the face when you blow strawberries at her.  I think she gets scared....? haha

I bet you can guess who got her this get up.  At least it is pink!

Gastroparesis

Gastroparesis is a condition in which the muscles in your stomach don't function normally.  There is no cure.

First of all I will say that Sunni has not been diagnosed with this (yet).  I do feel that it's only a matter of time before we find out that this is the case.  Do I know what this means for Sunni long term? No. 

They have tried feeds over and over but it always results in one thing.  Throw up.  

On Dec 31st the started giving her Reglan and Erythromycin in hopes of helping gastric emptying.  Then they started clamping her gtube off and on. Throw up.  On the 3rd they started breastmilk for the first time. 1 cc per hour.  If you do not know what a cc is it is barely any! She threw up again.

On the 4th she had a stomach emptying test.  Annnnnd same result as always.  Nothing happened.  Except throw up.

So today she has been on a half cc per hour and has done pretty good.  Maybe the meds are working?

The purpose of this blog is to unite Sunni's awesome prayer warriors once again.  She has overcome many obstacles but this one is the one keeping her in the hospital. Eating and pooping are pretty important bodily functions.  I have faith that God will get her over this road bump as He has all the others.  Pray that Sunni's stomach starts emptying and the natural digestive process starts happening for our precious girl!

I am going back to Houston next week.  I am really missing her!  Shawn has been taking good care of her along with our awesome nurses.  As much as I love all the people we have met in Houston I am so ready to have my family back together where we belong in Fritch, TX!  Tomorrow she will be 3 months old!  92 days!

OH, and guess what!!? She has a PINK room to come home to and her bed is on its way!