Could I Be Any Cuter?!

Lot to Learn

Realized today Savannah will be at 25 mL feeds as of Tuesday night!!! Her feeds are up enough now to where they had to switch to the kanagaroo pump that she will be coming home with-so her nurse today was teaching me more about her feeds and I got to change her g tube dressing and start her NJ feeds for the first time. I've got a lot to learn, but so excited to finally be at the stage of learning for prep for home! I've hit my nesting stage and I'm keeping Jon busy!
They will also be able to stop her TPN IV nutrition tomorrow since she will be getting fed enough through formula. The plan is to take her off antibiotics next week as well as long as her WBC count and the small pockets of fluid in her belly remain the same.
They did a repeat echo of her heart just for follow up today, but not suspecting any changes due to her blood pressures still being okay.  
She's getting so fat and its so good to see her finally acting like an active newborn.

Working on Gettin' Chunky

Savannah Grace is doing well. Docs/surgeon have decided to up her feeds every 12 hours now instead of once every 24 hrs since she's getting bigger. She is getting 13 mL/hour as of 8 tonight and her goal is to get to 25 mL. Once she reaches that and her goal weight of 4500 to 5000 grams (9.5-11 lbs.) she will become a candidate for her GJ tube. Her intestines have to be so big to house the tubing for the GJ. She is currently still on 1L of oxygen at 21% (the percent of air we breathe) due to her laziness when she sleeps...she gets too comfy and slows down her breathing. I'm guessing right now it looks like she will come home on oxygen, but that's up to her and the good Lord . We are incredibly thankful and owe it all to God that we can actually be talking about bringing that sweet girl home someday.

Cuteness Overload

Savannah is doing okay.  Her NJ feeding tube coiled back up in her belly on Wednesday, so they had to take her back down to fluoro.  She is up to 7 mL of milk per hour and weighed 9.5 lbs. as of last night.  She had some rough patches with her breathing last night, so docs ran her blood and checked for respiratory viruses-she was low on blood so got a transfusion today.  She's also on 1.5 L oxygen at  25%.  She had been on room air for a week.  Docs are hoping the blood will make her better, so she can get back off her oxygen.  I also learned new things about her this week-her intestines were formed differently-something about they turn up instead of down??-and where her incision had to be 

reopened is healing beautifully, but surgeon discussed with me today how Savannah's wound doesn't 

have granulation tissue present like most people would.  Oh, this girl and her desire to be different.  She has taught me even more so over the past week that she has such an attitude-wants me to hold her one minute and not the next, even threw herself a Willis fit I call em earlier today.  

And I can't forget to congratulate this handsome man on graduating kindergarten.  So proud of him! He was bragged on for his sweetness and artwork.  

Two Months

Two Months!

-I am the toughest little fart my mommy and daddy know!  I get my strength from the Lord!
-I love to show off now that my breathing tube is out!
-I'm a little fuss butt!
-I only need 1L of high flow oxygen to help me breathe, but I'll be off of that oxygen before long! ;-)
-My NJ feeding tube tickles my nose so I sneeze a lot, but it's feeding me so I'm okay with that!  I'll be glad to get more chubby so I can get my GJ tube put in!
-I love when mommy reads to me!
-I passed all my eye exams so I don't need any more for 6 months!
-I weigh 8 lbs., 7 oz.
-I'm getting put back in my big girl bed!
-I'm so glad my mommy gets to hold me again!  It's been a long 3 weeks!

Praying that the good days are here to stay

Good news!


Savannah will not require heart surgery anytime soon, if ever. Her narrowing in her aorta is too small to be of worry right now so the cardiologist will just continue to follow her. She said the narrowing is something that could better or worsen over time.


The fluid pockets in her abdomen haven't grown any bigger and aren't believed to be infection.


Her white blood cell count is 23000 which is awesome so they changed her antibiotics and took her off some of the "big gun" ones they call them. She can't stay on those for too long because it will cause resistance to some of the more simple antibiotics.


Her feeds were upped to 2 mL with her only having one spit since starting feeds. She is at a high risk for aspiration pneumonia, so the less she spits the better.


The genetic doc is back from vacation on Monday, so praying we get an appt with him soon.


Her blood gases are way beyond extubation level so we feel a little more confident she will do well without her breathing tube. Just over the past few days I've noticed her oxygen doesn't drop as often and if it does she just needs to be suctioned. She slobbers a lot!


Her docs are awesome right now! Very attentive to her uniqueness! She has angels of nurses looking out for her...some have grown so attached to her and it's assuring to know others are willing to fight for her just as much as we are!


So, we are headed in the right direction! I love my Jesus and I love that little girl more than she will ever know! 💕

Out with the bad...in with the Good!

Thankful for a good night and day with Savannah. Big obstacles are coming her way in the next few days. The surgeon wants to start feeds again, she has a contrast CT of her heart to rule out surgery, MRI of her brain for the infection and a planned extubation maybe next week.  I believe I will have a heart attack before this is all said and done. 😊


Docs were pleased with her labs this morning. White blood cell count has went from 85000 to 39000 which is near normal.


I pray for better days ahead...so tired of writing about bad days all the time. I have faith!  

PKS

Pallister Killian Mosaic Syndrome...i HATE you...with every ounce of my being. I HATE you for causing my child to have a difficult airway causing her to be a difficult intubation...i HATE you for causing my child to have such bad reflux/aspiration that she required a G tube to be fed through...i HATE you for causing her organs to not be strong enough to hold stitches in place after surgery...i HATE you for her stomach having a slower emptying time...i HATE you for causing her to have a second surgery on her stomach to fix the hole and not allowing her to keep the Nissen stitching to prevent her from refluxing...i HATE you for not allowing her to have her formula since I don't remember when...i HATE you for her intestines being to small for her NJ tube which caused severe irritation to her stomach...i HATE you for the way her bottom was formed requiring dilation to use bathroom properly...i HATE you for her cleft palate...i HATE you for her veins being abnormal requiring her yet another surgery to put a central line in...i HATE you for her heart issue...I HATE you for not allowing me to hold my baby for over 2 weeks now...i HATE you for the discomfort I know she's feeling...i HATE you for the infection she is trying to fight...i HATE you for the fact that they had to reopen her incision to check for infection...




ok...i feel better

Prayer Warriors

Alright guys...prayer warriors...God heard our prayers regarding Savannah's heart. The cardiologist said it wasn't as bad as they originally thought. She will have a CT scan later this week to make final decision whether she will require surgery or not.


What's  affecting her most now is the infection...its getting worse rather than better. Pray that God will heal her of this. She is such a fighter and has such a strong will to live, but we know she's tired. Lord, give her comfort.

Prayer Request

Infection control requested a repeat echo on Savannah's heart and a MRI of her brain to be done this week to reassure that her infection hasn't spread to those vital parts of her body. So, please join us in prayer that there will be no infection present and that most of all when they are looking at her heart today that her narrowed aorta won't be narrow anymore. May the doctors stand back amazed and not have an explanation as to why her heart is healed. Gods ppl will know the explanation though! God can heal her heart if we just pray asking in His name and have faith in those prayers that God still performs miracles!


Also, her repeated newborn screen came back and she does not have cystic fibrosis! They had originally thought it was a possibility due to her original screen showing elevations. Thank God for answered prayers!