Thursday, February 28, 2013

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

Wednesday, February 6, 2013

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! :)