Off Limits

The flu has hit the Willis household. Brayden tested positive for strep and flu. So, we have to stay away from the hospital for 24-48 hrs and take tamiflu. Thank goodness little miss Savannah is behaving and doing well. Her infection is improving and her vent settings are being weaned daily. Her heart rate is kind of all over the place due to infection and her potassium being low. I think I forgot to mention that I got in contact with the genetic team, but the doc specializing in PKS is out of office until may 9th. Also, her docs are keeping in touch with them as well which is pleasing to us. Jon prayed a prayer a while back asking for our situation with the docs to improve and that prayer has been answered. Everything has greatly improved and little miss looks so much better now than she did on Sunday. I hate that a mistake/complication caused her to suffer unnecessarily but she fought it like a boss. 😊 Our family is in awe as to how she's still with us today. She is a fighter that is for sure, she is not willing to give up. Nurses always tell us they like the fiesty ones...they have the will to fight and to live. And fiesty she is...has such a temper. I'm gonna miss seeing that chubby little girl the next few days, but at least I have time to catch up on some much needed rest.

Having Faith in our Prayers

Little miss is just hanging out. She does have a gut infection from all her stomach contents floating around in her belly from the hole. They have her on the appropriate antibiotics, but if her cultures don't look any better by tomorrow they may be calling infectious disease/control in to better heal her of this bug. Her oxygen has been good today, but her heart rate was kind of all over the place (60s-110). The docs went ahead and did her heart echo to rule out the infection spreading into her heart. Good news is no infection was present and her PDA valve had closed on its own. However, now that her PDA was closed it gave them a better look at her aorta which is abnormally narrow in a certain area. Her doc said they rate them from discreet to critical and at the moment hers is discreet and her blood pressures are fine. For now her main goal is to get over this infection and a cardiologist will now be following her to see if she will require surgery. But as a good man prayed with us earlier, we know a greater physician that can heal her. In Jesus name, her narrowing will be improved and her bradycardia fits will decrease so she won't have to suffer through another surgery. I know a man who can!

Sitting Still

Savannah had an awesome night last night. Jon and I were actually able to sleep pretty well in her room without the sounds of her alarms going off. The only time her oxygen drops is when she needs to be suctioned and it only drops in the 70s then. That's a huge improvement for her sadly. Her heart rate was of concern post surgery being in the 200s but after some kind of saline bolus she is sitting steady in the 150s/160s. That's great for her with her typical heart rate being at 100. I'm hoping her rate will stay that strong and its not just elevated because of pain. Her blood gases continue to be good, so they are weaning her vent.
On a side note, I came home today to get things squared away with insurance crap and get things going as far as possible transfer. However, its been a wasted day besides seeing my 2 other babies. Transfers are complicated and involve her docs now making the initial call. I asked if her records could be reviewed first, but again told her doc now needs to make the call. So, with that, we take the risk of being transferred to another hospital that knows nothing of her syndrome and says "I don't know" like we've heard so many times before. So, for now I will continue to try to get a hold of the genetic doc in lville (who doesnt like returning calls it seems) and try to get a video consult with the doc in Pennsylvania that is an "expert" in PKS. So, fingers crossed.  

Emergency Surgery

I walked in at 730 AM this morning to see my little girl with a very swollen belly. Docs were in the middle of testing and finally received their answer about 9 AM. The dissolvable stitches used to hold her stomach up from the Nissen procedure had opened up either due to being stitched too tight or coming loose. So, here I sit waiting for my daughter to come out from emergency surgery to repair the hole that was leaking out her stomach contents. I have questioned how did this happen? Was it just a possible complication? In the swallow study done before her g tube placement it showed her stomach didn't empty as fast as typical babies. Therefore, I wonder was her feeds through her g tube being pushed through her too fast and not giving her adequate time to empty causing her belly to swell and pop the stitching open. Also, with her imperforated anus she has to be dilated once daily so I wonder how much was she actually pooping in order to empty her belly. So, here I go, looking for more answers...

An answer

I have found a piece to the puzzle or so I hope. I contacted one of the families in KY who has a child with PKS. I asked her where her child went to the doctor given the fact that we aren't having the best of luck at Kosairs. Her child actually goes to a doc not far from the hospital who specializes in genetics and is affiliated with Kosairs/U of L Physicians. It's crazy to us how Savannah's docs now have never mentioned him to us. We have been wondering a lot lately how much they've actually researched her syndrome. According to this other Childs mother this doc knows a lot about PKS. So, here's to hoping we can get Savannah's records and get an office visit scheduled with him on Monday so Jon and I can discuss Savannah with him. I will not go down without a fight to save my daughter's life and to make sure she doesn't leave that hospital with any further damage than what her syndrome will already cause. I am her only advocate and I wont stand to get the I don't know answers anymore.

just need to vent

Little miss is still on the vent, intubated. I hate seeing her like that, but it's in her best interest right now so she can finally rest and heal. The docs have her slightly sedated so she doesn't get agitated with the tube. I've been researching all day kiddos that have this syndrome that share the same apnea problem. It could be as small as a positioning/needing time to outgrow it issue or as complicated as needing surgery to correct problems in the airway. And I actually found 2 kiddos in KY with this syndrome but still awaiting feedback. All this time, Jon and I thought we were the only one with a child with PKS in KY.
On a side note, I visited my OB today. I thought about cancelling considering this weeks events, but needed to go for follow up. It was hard on this momma walking into a room full of pregnant women and healthy babies. And the little ?s asked by nursing who are completely unaware of your situation not realizing their little ? Just ripped your heart in two for the thousandth time that day. I find myself not being able to hold it together no matter where I go. My emotions are all over the place-angry, why me?, why HER?, is she going to make it?, will my family make it through this. I think of the future and how completely terrified I am of raising a child with special needs. How was life ever meant to be this hard? Sorry about the rant...praying for strength to stay strong for my 3 kiddos. Praying in thanks for Brayden & Alayna. They have no idea what they mean to me and how they get me through each day. They were literally like a breath of fresh air seeing them today after being at hospital since Monday.

Savannah was extubated yesterday morning and started feeds through her g tube. She was put on 2L O2 and did fairly well with it throughout the day. However, things turned for the worse in the evening hours and Savannah has been reintubated again. She's not doing well this time. The docs tried every other method of breathing assistance there is out there before placing tube, but she kept having episodes of going apnic/ forgetting to breathe. As of this morning she isn't taking breaths on her own very often at all. Her heart rate and oxygen will still drop occasionally. They are looking at possibly giving her blood due to low counts and ruling out infection.

God is good all the time, all the time GOD IS GOOD!

It took about an hour to get Savannah intubated due to a narrow airway due to genetics and irritation from previous tubes causing her increased swelling. The surgery itself was expected to take 2 hrs, but took less time than her intubation. Her vitals held strong through the entire process. They decided to leave her on the vent due to possibility that she may not be able to be reintubated if the occasion arose. She is resting now, but trying to take breaths on her own and moving around a bit. Also, her belly was big enough to go ahead and give her the button which is the better option to feed her. They will possibly start her feeds tomorrow all depending on her vent.
God is still in the miracle working business you guys! Never lose sight of that! It's all because of Him how well she held up in that operating room today! 
On an even better note I was glad to hear that two friends of mine's kiddos gave their life to the Lord this week! Amen!!!

To God Be the Glory

Savannah is breathing at 100% on room air! That's a miracle in itself considering how bad she was just a few days ago! She's resting peacefully getting ready for her big day! And I'm just going to go ahead and praise and thank God for the miracle he is going to work on my little girl tomorrow. He will pull her through this surgery and she will come out stronger than ever! We will see God perform a miracle tomorrow! Can I get an amen!!! Her surgery is scheduled around 10. Join us in prayer!

Savannah is doing well. She still has her suction tube in, being fed nutrients through her IV and having her high flow oxygen decreased daily due to her tolerating it better. The scary news is her g tube surgery is scheduled for next Tuesday. I know she will be fine, it's just scary and nerve wrecking. I'm praying it wont set her back, but rather bring her forward.
On a brighter note, Savannah got moved to a private room, so post surgery I will get to spend nights in her room without having to leave her.
And I don't know how to say thank you enough to our small communities, family, friends, church, my co-workers which aren't just co-workers but my family. I sit in awe when I think of how many people have helped us whether its through prayer, visits, time, food, hugs, money, gift cards or even just take a moment to talk and let us vent. Not a moment has went unnoticed and we are forever grateful. God's blessings to you all! Please continue to pray for our little girl as she has a tough week ahead. The docs believe she's ready for surgery and I know God's always ready!

Night of Emotions

If I'm being completely honest, in one night I found myself angry at God and in the next breath making my peace with Him. The main issue I've always dealt with was not wanting Savannah to suffer, but she suffered last night. I found myself angry that it looked like God was ready to take my precious girl home, but trying to make peace with it because I couldn't stand to see her suffer anymore. As the morning rolled around her usual docs came in and began to dig deep and find the answers. X rays of her NJ tube placement showed significant air on her belly and the misplacement of it as well. This led them to place a tube down her throat that suctions as well. It is suctioning the air and old blood where the NJ tube irritated her stomach. So, in a nutshell all the air and the fact that the NJ tube was too big for her intestines (which docs said they've never seen this issue before) was causing her to suffocate. I'm thankful for that doctor that called today and poured his heart out to Jon apologizing for not catching the problem sooner. And I thank God for the continued angels unaware...a night nurse came and spoke to us last night about her struggles with her daughter who is handicapped post several brain surgeries. Take life one day at a time or even one second at a time if we have to she said. God bless her and I thank her for her brutal honesty. I thank God for Savannah's day shift nurse from today. She would not leave her side and stayed over almost 2 hrs last night because she didn't want to leave Savannah in the shape she was in. Please continue to pray for little miss. Pray she has no more days of suffering and the docs will continue to dig deeper. As I write this now, Savannah is resting well as she has been since about 9 this morning. She had a few minor episodes, but recovered quickly, but those may have been due to her irritation of having to get a picc line to keep her properly hydrated since she can't have her formula right now.

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.