It's Between God and Her

Savannah is at her worst. The NJ feeding tube recoiled back up into her stomach causing her to vomit, so her feeds were stopped. Her O2 and heart rate have dropped significantly all day (HR as low as in 40s and O2 in the teens). They decided to place her on the noninvasive vent. She has had a few episodes on it, but not as frequent, so it's still up in the air as to whether she will need to be reintubated. They are doing a repeat eeg which has showed no seizure activity and her feeds have been stopped for over 3 hrs so its not a reflux issue, so docs aren't sure why she's doing this. One doc said some premies' brains won't deliver message to diaphragm to breathe but there's no test to prove that. Also, they had stopped her caffeine a few days ago, so they are restarting that to help elevate her heart rate. She's just kind of a puzzle to the docs because of her syndrome and all the unknowns. So, like I said it's with her and God.

Slumber Party

So little miss Savannah wanted a slumber party for my birthday. I was at home Monday morning resting, when I got the daily call from her resident. The phone calls usually consist of how she's doing good, but not on Monday. Savannah was having a hard time and would try to quit breathing early hours Monday morning. They didn't quite know why she was doing this so they upped her O2 back to 3L and stopped her feeds. She started to do better once I got there and held her on her belly which she prefers. I was too scared to leave her so my mom and I stayed...and I might add, that waiting room needs some comfy furniture for sleeping because there was no sleeping going on. So, since she had a better night, Savannah had an eye exam which showed no ROP and the ophthalmologist didn't see any problems that would cause vision loss. Considering Savannah's PKS can cause vision problems this is a huge blessing. Praise God! Also, the girl had done nothing but cry and some babies with PKS, if I'm correct, don't cry, so maybe she'll be a talker too someday. She also had the nurse put in an NJ tube (which passes onto the intestines rather than stop at the stomach) rather than her usual NG to try to relieve her discomfort from reflux until her surgery. Her g tube is going to be scheduled next week since she is good size now (7 lb 8 oz). The nurse was unsuccessful getting the tube down, so she had to go to x ray. Since coming back from x ray,she had a few spells, but recovering quicker. It doesn't take much to weaken her. They were able to start her feeds back, which I know made her happy...she was literally trying to eat my shirt yesterday.
Sorry for the long post...my thought process is awful right now and a lot has went on since I last wrote. 

One Month!

I hate baths!
I hate my therapies, but I do what they ask because I'm nice like that!
I love my momma!
I have a temper already-I will swat my arms at whoever touches me when I don't want to be bothered.
I can raise my head up and turn it side to side when I feel like it! :-)
I like my paci sometimes!
My formula makes me smell like french fries!
I love to make stinky diapers the most for the nurses!
And most of all...I am so ready to go home!

Quick update

Savannah is coming off her high flow nasal cannula today (she pulled it out of her nose :-) ) and going to a regular cannula.  She will probably remain on this until after surgery due to most of her de sats being caused by her feeding issues.  So, can't fix the breathing problem until they fix the feeding problem.  Surgeons are going to re discuss her case next week to see if they can still hold off doing surgery when she's a term baby or go ahead and do it sooner.  I just want them to be 100% positive she's ready for the surgery.

Doing well

Docs decided to try to wean little miss off her oxygen after all-she made it 17 hrs without it!  They did have to put her back at 2L tho today after 3 spit ups causing her vitals to drop.  The nurse did say she was bearing down to make big poops in her diaper which probably caused 2 of the 3 spit ups tho. Poor thing!  She is back down to 7 lb 3 oz.  She gets fussy when one of her roomies cries...she's not much of a crier and can't stand to hear all that noise...she's in for a rude awakening coming home to her bubba and sis!  When we first got there today she was wore out from her OT, but soon came alive for us!  I'm sure she misses us as much as we miss her!

Thankful

Thankful for the uneventful days...
Savannah is doing well...hasn't had a significant drop in oxygen or heart rate since early yesterday.  The docs are keeping her on 2L oxygen and increased her feed intake by 1 cc.  She weighs 7 lb 5 oz so she is very close to birth weight.  The surgeons continue to desire to wait until she is closer to term for her g tube surgery.  Her surgery comes as a packaged deal...she is having the g tube placement but also getting the Nissen procedure done (portion of her stomach will be wrapped around the end of her esophagus and stitched to prevent any backward flow during her feeds) essentially meaning no more reflux for this little girl which will hopefully mean no more drops in oxygen and heart rate.  The docs are pretty positive that her reflux and aspiration are what's causing her vitals to drop.  I do pray that she will overcome this someday and her throat muscles will become stronger so that she can get rid of that ol tube...I see patients at work with them everyday and I know how much they hate them.

Also, prayers going up for all those sick around us...Brayden has strep (twice now in a month) and Alayna has a UTI.  I can tell you as a mother of a child in the NICU this is very nerve wrecking.  You feel torn for one thing (needing to be home with the two that are sick vs wanting to be at your baby's bedside in another town).  And then you are scared to death it will be passed to the baby somehow or that you will get sick and not be able to visit your baby for several days.  But then you just have to breathe and remind yourself...it could always be worse.  One day at a time...

Hallelujah!

Savannah had a great day today!  By the grace of God she was very active and breathing so much better!  She is still on oxygen, but doc is going to try to wean her down tomorrow.  As I was leaving today I was telling Jon how she usually "fusses" at me before I leave and today as I said goodbye she grabbed a hold of my finger...wasn't ready for me to go bless her heart.  :-)  As Jon was telling her bye he got sneezed on and he also gets an occasional eye roll...that's my girl!  Haha! Jk!

It was an all around pretty good day...Jon & I came home to Brayden & Alayna and took them out for dinner (something we haven't done in about a month) and they came home and actually played together instead of fighting.  :-)  It's the little things you take for granted.

Thanks to all for the continued prayers...they are what got our little girl through yesterday and gave her a better day today.  I thank God for the boldness of His ppl that are not ashamed to proclaim His name no matter the place or time.