Savannah's eye exam came back with the results that as of right now she is nearsighted...sometimes once premie babies can outgrow this, but if not she will be rocking some glasses too next year. I need to invent something to hold glasses, hearing aids and oxygen on a child with tiny ears...any suggestions? 😉
Heart doc was awesome! Narrowing of aorta is still present, but not restricting blood flow. Thickening of heart muscle was within normal limits today!! Hallelujah...our God is great!!!
We also got word that there is a ton of sickness going around Kosair....even in the NICU. Praying for all those children...this time of year is rough!
Tuesday, November 15, 2016
Sunday, October 30, 2016
october updates
Savannah had a CT of her skull per the plastic surgeon's request-he didn't see any need for surgery (he was afraid her skull bones may be closing too early). The only things he mentioned was that her frontal bone was already fused which can be fused in a typical kid her age anyway. Also, the only abnormality he saw was the orbits (eye sockets). He wants us to follow up with neurology to make sure they're not seeing anything he isn't.
We met with genetics as well. They didn't tell us much more than we already knew about PKS-just gave us more of the scientific side to it. Her syndrome began at conception-the 12th chromosome-if I'm saying this correctly-rather than splitting off one chromosome into the egg and the other into the sperm the chromosomes stayed together and chose the egg or sperm and duplicated. Confusing? They reassured me that there was nothing I could have done to prevent it-just a fluke thing. 47% of Savannah's cells are affected with the syndrome, however, that doesn't determine what she will be capable of doing in life. The chromosomal error can be grouped in larger amounts than in other parts of her body. For example, a larger amount of her cells in her legs could be affected more than in her arms. So, as we've known from her 12th day of life, it is up to God and Savannah what she will do. Time will tell. For the most part, I'm okay with the card we have been dealt, I try to see it from the positive side. However, there are the days when sadness or anger creeps in my mind. It rips my heart out watching her struggle some days. Jon said the other day just saying out loud that she should be crawling around by now-but her body won't allow it at this time. I hate days when reality sinks in...
We met with genetics as well. They didn't tell us much more than we already knew about PKS-just gave us more of the scientific side to it. Her syndrome began at conception-the 12th chromosome-if I'm saying this correctly-rather than splitting off one chromosome into the egg and the other into the sperm the chromosomes stayed together and chose the egg or sperm and duplicated. Confusing? They reassured me that there was nothing I could have done to prevent it-just a fluke thing. 47% of Savannah's cells are affected with the syndrome, however, that doesn't determine what she will be capable of doing in life. The chromosomal error can be grouped in larger amounts than in other parts of her body. For example, a larger amount of her cells in her legs could be affected more than in her arms. So, as we've known from her 12th day of life, it is up to God and Savannah what she will do. Time will tell. For the most part, I'm okay with the card we have been dealt, I try to see it from the positive side. However, there are the days when sadness or anger creeps in my mind. It rips my heart out watching her struggle some days. Jon said the other day just saying out loud that she should be crawling around by now-but her body won't allow it at this time. I hate days when reality sinks in...
Sunday, October 16, 2016
october
This month has been crazy...very busy. Little miss is taking it well tho...on days when I think she will be exhausted from the previous day's doc appt she surprises me by being very active. We have seen an ENT doc in Lexington who is recommending hearing aids. However, Savannah must have a sedated hearing test in the near future to get the most accurate readings so the audiologist will know where to set the hearing aids.
We also finally met with the plastic surgeon regarding her cleft palate. To sum it up, he isn't going to repair it unless she develops speech or takes a bottle. He doesn't want to put her through a major surgery if it isn't going to benefit her.
We met with our new surgeon regarding her anoplasty surgery. This is the surgeon that, along with Jesus, saved Savannah's life post Nissen explosion. We wanted a second opinion from her since I've not always agreed with her prior surgeon on everything. This new surgeon is more realistic when it comes to PKS and what it entails for Savannah's life. We have all come to the conclusion that she will have a colostomy and if and when we decide to go for it she will have the anoplasty to fix her imperforate anus. It was the same story as with plastics...why put her through a very major surgery if it will not benefit her such as for potty training. Savannah already has difficulty healing so we figured her best option was the colostomy because it's a much easier surgery and recovery. I'm still not sure as to when this surgery will take place...the surgeon doesn't seem to be in any hurry due to the fact Savannah isn't having issues with her stools. So, we are relieved in a sense from when we left Kosairs to bring her home. We knew leaving that day she still had a very difficult road ahead of her, but for now that road is becoming easier. There are still a couple of appointments to go this month...so I will update when I'm not too busy. 😊
on a side note...please keep in prayer Savannah's PKS sister, Ava. She lives in New Zealand and is currently in the hospital fighting for her life with pneumonia...but if I've learned anything about these kiddos they are the toughest and put up the best fight!
We also finally met with the plastic surgeon regarding her cleft palate. To sum it up, he isn't going to repair it unless she develops speech or takes a bottle. He doesn't want to put her through a major surgery if it isn't going to benefit her.
We met with our new surgeon regarding her anoplasty surgery. This is the surgeon that, along with Jesus, saved Savannah's life post Nissen explosion. We wanted a second opinion from her since I've not always agreed with her prior surgeon on everything. This new surgeon is more realistic when it comes to PKS and what it entails for Savannah's life. We have all come to the conclusion that she will have a colostomy and if and when we decide to go for it she will have the anoplasty to fix her imperforate anus. It was the same story as with plastics...why put her through a very major surgery if it will not benefit her such as for potty training. Savannah already has difficulty healing so we figured her best option was the colostomy because it's a much easier surgery and recovery. I'm still not sure as to when this surgery will take place...the surgeon doesn't seem to be in any hurry due to the fact Savannah isn't having issues with her stools. So, we are relieved in a sense from when we left Kosairs to bring her home. We knew leaving that day she still had a very difficult road ahead of her, but for now that road is becoming easier. There are still a couple of appointments to go this month...so I will update when I'm not too busy. 😊
on a side note...please keep in prayer Savannah's PKS sister, Ava. She lives in New Zealand and is currently in the hospital fighting for her life with pneumonia...but if I've learned anything about these kiddos they are the toughest and put up the best fight!
Thursday, September 29, 2016
heart wrenching
The heart break just begins at diagnosis. I, of all places, received the call with my daughter's diagnosis of PKS while I was shopping for spring clothes in Wal-Mart, a day I had taken to spend time with my other kiddos. I was a blubbering mess and while I should have just put everything down, I instead proceeded to check out thinking I could keep myself together for 10 minutes....but no, I lost it on the check out lady...she thankfully didn't think of me as crazy (even tho I told her I was 😞) but gave me a much needed hug instead. Seems like looking back on it, it would have been a better conversation for the doc and family to have in person, but oh well.
What I've not expected is the hardships that came once Savannah was home. I have spent countless hours in the social security office, dept of community based service office, health dept, etc...trying to get help for her. We have also looked into waiver programs only to be told she will be put on a waiting list of 900 plus kids. When she was initially at home, we had a lot of help from govt...but through recent surveys we have been told that our income is too great for anymore assistance. So, here's to our fantastic government and the next (at least) 2 surgeries that will be paid for somewhat by employer insurance and the rest out of pocket...not to mention the countless doctor visits, medical equipment, prescriptions, therapy and the list goes on.
I'm not writing this for pity...just to give an insight to the not so pretty aspects of life with a special needs child. And to vent before I explode. Is it not enough that she's disabled...that's heartache enough for us...but all the other should be unnecessary struggles that this govt places on us makes it even harder. I'm convinced that one day this will get easier...God will take care of us as He is already. We are a blessed family...blessed with our family and friends who love Savannah as their own and for that I'm thankful.
Savannah has changed our lives and I Iove her for it. She has brought so much of my attention to the world that is very much ignored out there...people struggling emotionally, spiritually, financially, physically while some just sit back and ignore. I was guilty of all that and then some before Savannah. Even as a therapist I had never empathized with my patients the way I do now. My life is forever changed and will never go back to the way it once was, but for that I am thankful. Savannah has made me a much better and stronger person.
What I've not expected is the hardships that came once Savannah was home. I have spent countless hours in the social security office, dept of community based service office, health dept, etc...trying to get help for her. We have also looked into waiver programs only to be told she will be put on a waiting list of 900 plus kids. When she was initially at home, we had a lot of help from govt...but through recent surveys we have been told that our income is too great for anymore assistance. So, here's to our fantastic government and the next (at least) 2 surgeries that will be paid for somewhat by employer insurance and the rest out of pocket...not to mention the countless doctor visits, medical equipment, prescriptions, therapy and the list goes on.
I'm not writing this for pity...just to give an insight to the not so pretty aspects of life with a special needs child. And to vent before I explode. Is it not enough that she's disabled...that's heartache enough for us...but all the other should be unnecessary struggles that this govt places on us makes it even harder. I'm convinced that one day this will get easier...God will take care of us as He is already. We are a blessed family...blessed with our family and friends who love Savannah as their own and for that I'm thankful.
Savannah has changed our lives and I Iove her for it. She has brought so much of my attention to the world that is very much ignored out there...people struggling emotionally, spiritually, financially, physically while some just sit back and ignore. I was guilty of all that and then some before Savannah. Even as a therapist I had never empathized with my patients the way I do now. My life is forever changed and will never go back to the way it once was, but for that I am thankful. Savannah has made me a much better and stronger person.
Saturday, September 17, 2016
6 Months
Savannah is up to 14 lbs, 15 oz. Her 4 month shots were a little rougher on her...slight fever and very lethargic for a while. She is growing great on her growth curve. She is also getting her first tooth, but not showing much discomfort with it. And she has found her face...keeps taking her hand to her mouth or eyes.
Updates on Doc Appts:
-Neuro doesn't feel like what we are describing is seizure activity, but with her brain formation and syndrome setting her at a greater risk for seizures, she will have a 24 hr EEG coming up.
-Her pediatric surgeon discussed her next surgery to fix her imperforate anus/fistula. She would like to get it done before she's a year old. A new fact we discovered is that if there were to be complications or to initially go about the surgery the safer way, she would end up with a temporary colostomy. 😞
We are, however, getting a second opinion from the very awesome surgeon that did Savannah's emergency surgery and central line...for various reasons. We see her Oct. 7th.
-We go to UK clinic for her hearing in Oct. to hopefully get the definitive answer on that.
-Savannah started physical therapy this past week...they will be coming in twice a month initially. She loves her therapist! Speech comes in as well once a month to work on oral motor exercises to hopefully prepare her for bottles later down the road.
Updates on Doc Appts:
-Neuro doesn't feel like what we are describing is seizure activity, but with her brain formation and syndrome setting her at a greater risk for seizures, she will have a 24 hr EEG coming up.
-Her pediatric surgeon discussed her next surgery to fix her imperforate anus/fistula. She would like to get it done before she's a year old. A new fact we discovered is that if there were to be complications or to initially go about the surgery the safer way, she would end up with a temporary colostomy. 😞
We are, however, getting a second opinion from the very awesome surgeon that did Savannah's emergency surgery and central line...for various reasons. We see her Oct. 7th.
-We go to UK clinic for her hearing in Oct. to hopefully get the definitive answer on that.
-Savannah started physical therapy this past week...they will be coming in twice a month initially. She loves her therapist! Speech comes in as well once a month to work on oral motor exercises to hopefully prepare her for bottles later down the road.
Thursday, September 1, 2016
making progress
Savannah rolled onto her belly today!
-Neonatal docs tried to up her feeds to 36 mL per hour every 20 hrs so she could have a break...in order to do her therapy on a not so full stomach or should we say intestines. Well, missy wasn't having it so docs had to go back to her regular 30 mL per hour every 24 hrs. She doesn't take change very well!
-An accurate hearing test hasn't been completed with her keeping fluid on her ears so we are being sent to specialists at UK in October.
-She will have physical therapy twice a month and speech once a month with First Steps coming soon.
-She battled her first cold like a champ! Big brother brought home a cold which lasted a couple days for him & Alayna, but lasted 2 wks for Savannah.
-Neonatal docs tried to up her feeds to 36 mL per hour every 20 hrs so she could have a break...in order to do her therapy on a not so full stomach or should we say intestines. Well, missy wasn't having it so docs had to go back to her regular 30 mL per hour every 24 hrs. She doesn't take change very well!
-An accurate hearing test hasn't been completed with her keeping fluid on her ears so we are being sent to specialists at UK in October.
-She will have physical therapy twice a month and speech once a month with First Steps coming soon.
-She battled her first cold like a champ! Big brother brought home a cold which lasted a couple days for him & Alayna, but lasted 2 wks for Savannah.
Monday, August 22, 2016
5 Months
Miss Savannah weighs 14 lbs. and can roll occasionally, has decent head control tolerating tummy time for no more than 5 minutes. Loves to be talked to and held...coos and smiles at momma.
Went to her neonatal follow up doc today...her weight is on track, but she's a wee bit short. First steps will probably he focusing on physical therapy most with occasional visits from speech, hearing and visual therapists. She is a little behind on her visual tracking and her main concern now is opening up her hands more often while on her belly to push up to crawl and pull up to stand later down the road whenever she decides to. They evaluate her according to her adjusted age (3 months). We also learned today that babies with low tone tend to sleep more often...which explains her laziness. 😊
Went to her neonatal follow up doc today...her weight is on track, but she's a wee bit short. First steps will probably he focusing on physical therapy most with occasional visits from speech, hearing and visual therapists. She is a little behind on her visual tracking and her main concern now is opening up her hands more often while on her belly to push up to crawl and pull up to stand later down the road whenever she decides to. They evaluate her according to her adjusted age (3 months). We also learned today that babies with low tone tend to sleep more often...which explains her laziness. 😊
Sunday, August 7, 2016
Busy Girl
Savannah has been busy with her many appointments. Here's a quick update on what all is going on with this girl:
-Surgeon that placed her G tube wants to wait on fixing her little bottom...wants her to thankfully just have a chance to grow and be a little baby for once...said she's been through enough right now.
-Heart doc came right in talking surgery on her narrowed aorta so I stopped him in his tracks...its the same so we are leaving it alone for now. We also learned that her heart has some mild thickening.
-She failed her hearing test again...only hears high pitch noises. Retesting later this month before saying she definitely needs hearing aids.
-In the process of finding her a pediatrician that is the right fit for her.
-Made a quick trip to Louisville the other day thinking her balloon that holds her feeding tube in was leaking...well it wasn't...but she got a brand new tube put in which she would have been due for next month anyway. Jon and I got to watch it be put in.
-More appointments to come in the near future...will keep ya posted...she's doing so well at home!
-Surgeon that placed her G tube wants to wait on fixing her little bottom...wants her to thankfully just have a chance to grow and be a little baby for once...said she's been through enough right now.
-Heart doc came right in talking surgery on her narrowed aorta so I stopped him in his tracks...its the same so we are leaving it alone for now. We also learned that her heart has some mild thickening.
-She failed her hearing test again...only hears high pitch noises. Retesting later this month before saying she definitely needs hearing aids.
-In the process of finding her a pediatrician that is the right fit for her.
-Made a quick trip to Louisville the other day thinking her balloon that holds her feeding tube in was leaking...well it wasn't...but she got a brand new tube put in which she would have been due for next month anyway. Jon and I got to watch it be put in.
-More appointments to come in the near future...will keep ya posted...she's doing so well at home!
Saturday, July 9, 2016
4 Months
Savannah is enjoying being home. She sleeps a lot and sort of has her days and nights mixed up. I've been fortunate to be home with her this week, but next week she enters daddy/granny daycare. Brayden and Alayna are wonderful with her. We went for her check up at the pediatrician yesterday. At four months she weighs a whopping 12 lbs. 14 oz. and is 21.5" long. Her weight is good, but a little on the short side. Her doc was wonderful...did all she could to get info from all resources and offered to check on us over the weekend. For now the plan is to make no changes, but she did want to follow up on her suspected seizures. Her EEGs in the hospital never showed any, but I believe I've seen her have some. We have quite a few appointments ahead of us. It's nice to feel somewhat normal again...rocking my baby to sleep in our home, giving her a bath in her tub and putting her in the car, not having an hour and a half drive separating me from my little girl, etc. It's the little things in life that matter the most. Happy four months sweet girl! So glad we get to spend it at home!
Wednesday, July 6, 2016
Saturday, July 2, 2016
Passing with Flying Colors
Little Miss passed her car seat test and did well with her 2 month vaccines...even closer to home now!
Thursday, June 30, 2016
Best Day Ever!
Savannah is coming home! One day next week we will be a family of 5 under one roof! Thank u Lord!
Wednesday, June 29, 2016
Pinch me...i think i'm dreaming!
I could shout to the rooftops with excitement and thanks to God! Savannah's GJ feeding tube came in today and they took her right down to fluoro to put it in...she is doing wonderful with it. Setting the feeds up with it was a breeze. Tomorrow I plan on talking to docs regarding discharge plans to see what they have in mind. I know she's had a few breathing issues here lately, but mostly due to secretions and probably discomfort from the NJ feeding tube so I'm curious to see what they say. I do know I will have to receive a crash course in infant CPR and have apnea monitor training before she comes home. But for now all is well and we are one step closer to home! Thank you Jesus!!! Savannah is pretty stoked...she was dancing away tonight shaking her legs and arms every which way! Her physical therapist would be proud...she was doing lots of her bicycling exercise! 😃
Praises
Last night while giving little miss her bath on the weight machine she kept trying to roll over. Of course the side of the machine was blocking her from going completely over which was ticking her off. If any of you have read about PKS this is a huge deal for this momma. She also will push up with her legs and raise her head when on her belly since about 2.5 months old. So, so far so good as far as reaching milestones goes.
Praise God! Go Savannah Go!
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Praise God! Go Savannah Go!
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Saturday, June 25, 2016
A Blah Kinda Week
This quote on facebook keeps sticking out to me...talks about dealing with what life has dealt you...either letting it make u a better person or letting it make u bitter. This is something I've been struggling with especially over this past week. Savannah has had a couple of days where she was episode free of drops in heart rate or oxygen. However, tonight she is dropping in the 20s. The secretion med has done its job and thickened her slobbers, but now I'm lost again as to what's causing her to drop her oxygen. It's only occasionally, but at times she's requiring stimulation to recover. Also, I found out earlier this week that her GJ feeding tube can take 2-4 additional weeks to arrive...so disappointing. Just as I was beginning to see the light at the end of this tunnel and have our little girl home...my hopes are shattered. We will get there tho...slowly but surely.
Sunday, June 19, 2016
Divided Time
I'm longing for Savannah to be home...longing to just be a "normal" family and have all my kiddos under one roof. It gets more and more difficult trying to make sure I give Brayden and Alayna the attention they deserve and are used to, all the while knowing Savannah needs her momma too. Please pray for those NICU families like us longing for the normalcy of life we all once knew. Please pray for the families of singletons also...there are so many it seems right now like us...waiting on one little thing to get home.
Praying that Savannah's GJ feeding tube comes in this week and praying it resolves any breathing/reflux issues.
Praying that this new secretion med she's on will benefit her rather than make it worse on her. She is known for her excessive amount of oral secretions, so she has been put on a med to help thicken it/dry it up. It seems to me its not helped as expected, so will be discussing dosage changes with docs.
Praying that Savannah's GJ feeding tube comes in this week and praying it resolves any breathing/reflux issues.
Praying that this new secretion med she's on will benefit her rather than make it worse on her. She is known for her excessive amount of oral secretions, so she has been put on a med to help thicken it/dry it up. It seems to me its not helped as expected, so will be discussing dosage changes with docs.
Monday, June 13, 2016
Pure Sweetness
Well I was going to share the adorable pic from Brayden's first time meeting his sis and her 3 month pics, but the pic uploader has changed. You can see our family pic on Jon's Facebook tho. Brayden helped decorate her bed, showed her the stuffed animals she has and asked if he could touch her which ended up being a poke in the arm. She weighs a whopping 10 lbs., 12 oz. now. Her feeds were lowered back to 28 mL because she was having excess formula coming back out of NJ and she was getting a little too chunky sooner than expected. Yesterday they put her on Prilosec due to some stomach irritation which has helped. She also has not had too many issues with her breathing. And she hates a poopy diaper. Today she fussed at me for leaving...cried once I put her back to bed and again when I raised her bed rail. Needless to say, I stayed a little longer.
Wednesday, June 8, 2016
okay...so maybe this will be harder than i thought
Got home from work to shower the germs away...spent a few minutes with Brayden and Alayna...told them both bye that I was going to see their sissy...Brayden gives me a sad face and Alayna cries hysterically...go see Savannah who is acting up a bit but nothing out of the ordinary...home to sleep and start all over again tomorrow...insert huge sigh 😡
But I'm thankful...thankful God gave me a second burst of energy to get to Louisville and back safely and oh so thankful I found out from doc tonight that Savannah's GJ tube has been ordered!!! May take a week to get here tho but I am stoked it's at least been ordered!
I can do this...God gives me strength I never knew I had and a wonderful support system!
But I'm thankful...thankful God gave me a second burst of energy to get to Louisville and back safely and oh so thankful I found out from doc tonight that Savannah's GJ tube has been ordered!!! May take a week to get here tho but I am stoked it's at least been ordered!
I can do this...God gives me strength I never knew I had and a wonderful support system!
Monday, June 6, 2016
Success
First day back to work was great...a nursing home full of awesome co workers makes it a lot easier! Brayden finishes up tball this week so I made it to his game...but didn't get to travel to see miss Savannah. She behaved her little self today though. All blood work came back good so they are only going to check it every 2 weeks now. And her main docs are going to sit down and have a discussion with surgery hopefully this week to determine when placement of GJ tube will happen. I have got to see her tomorrow...just something about being back at work makes me miss her that much more. Even more ready to have her home now! Thank you all for the continued prayers!
Sunday, June 5, 2016
Friday, June 3, 2016
Update
Savannah has met her new feed goal of 30 mL per hour with no issues. Docs are going to speak with surgery next week to find out when they will want to put her GJ tube in. It will also have to be special ordered because the ones they have in stock are usually put in bigger kiddos. She still requires her oxygen.
I have ran myself to death these past couple of weeks trying to get our house more ready for her to come home to. 😊
I have ran myself to death these past couple of weeks trying to get our house more ready for her to come home to. 😊
Monday, May 30, 2016
Friday, May 27, 2016
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.
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.
Wednesday, May 25, 2016
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.
Saturday, May 21, 2016
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.
Thursday, May 12, 2016
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!
Saturday, May 7, 2016
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! 💕
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! 💕
Wednesday, May 4, 2016
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!
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!
Tuesday, May 3, 2016
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
ok...i feel better
Monday, May 2, 2016
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.
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.
Sunday, May 1, 2016
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!
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!
Thursday, April 28, 2016
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.
Tuesday, April 26, 2016
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!
Monday, April 25, 2016
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.
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.
Sunday, April 24, 2016
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...
Friday, April 22, 2016
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.
Thursday, April 21, 2016
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.
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.
Tuesday, April 19, 2016
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!!!
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!!!
Monday, April 18, 2016
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!
Saturday, April 16, 2016
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!
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!
Thursday, April 14, 2016
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.
Wednesday, April 13, 2016
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.
Sorry for the long post...my thought process is awful right now and a lot has went on since I last wrote.
Saturday, April 9, 2016
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!
Thursday, April 7, 2016
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.
Tuesday, April 5, 2016
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!
Monday, April 4, 2016
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...
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...
Friday, April 1, 2016
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.
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.
Thursday, March 31, 2016
Prayer & faith gets you through days like these...
Savannah had a rough day yesterday. The doctors had her set up for about 3 hrs worth of testing (2 hr test to see how her feeds traveled through her body) and an upper GI. During the test they had to do bolus feeds which she doesn't tolerate anyway. After coming back, she began to reflux repeatedly causing her heart rate and oxygen to drop significantly. The look on her face as she struggled to breathe is something I wish could be erased from my memory. For now they have her back on oxygen, but she still continues to drop her sats occasionally when she refluxes. The doc came in this morning and put her on meds to help with the heartburn and emptying of her stomach. Please pray that she recovers from this setback quickly. We feel too much was done yesterday at one time, but it was part of her prep for the g tube placement. The surgical team also wants her closer to term before they will do the surgery. Just praying and keeping faith that she will be strong enough for the surgery. I'd give anything to trade her places-some things in life I will never understand.
Tuesday, March 29, 2016
Savannah came back from the swallow study yesterday acting as though it didn't phase her one bit-skipped right on into her session with the occupational therapist. The OT believed she was doing well and was showing progress since last week. I can tell you the OT was an angel-said things that I needed to hear just at the right time.
Got the call with the results from the study today-she will need surgery to have a g tube placed after all. During the study she showed that she had nasopharyngeal reflux and was a silent aspirator. Of course I didn't want to add any more surgeries to her list, but this could mean she could come home after the surgery. I pray for God to watch over her through the surgery and to recover well from it. The surgical team will be doing tests on her bowels, etc. to make sure she is prepared for the surgery.
Please help me pray for one of the NICU babies and his or her family. They received news that their baby was born with trisonomy 18-the nurses placed rainbows around his crib-their rainbow baby. God bless them and may He comfort them in the days ahead.
I saw a post on Facebook today-stated "I'm sorry I couldn't save you". There couldn't be any truer words-the lives of our children are in God's hands, but what we wouldn't do to save them from death, sickness, pain and the list goes on.
Got the call with the results from the study today-she will need surgery to have a g tube placed after all. During the study she showed that she had nasopharyngeal reflux and was a silent aspirator. Of course I didn't want to add any more surgeries to her list, but this could mean she could come home after the surgery. I pray for God to watch over her through the surgery and to recover well from it. The surgical team will be doing tests on her bowels, etc. to make sure she is prepared for the surgery.
Please help me pray for one of the NICU babies and his or her family. They received news that their baby was born with trisonomy 18-the nurses placed rainbows around his crib-their rainbow baby. God bless them and may He comfort them in the days ahead.
I saw a post on Facebook today-stated "I'm sorry I couldn't save you". There couldn't be any truer words-the lives of our children are in God's hands, but what we wouldn't do to save them from death, sickness, pain and the list goes on.
Sunday, March 27, 2016
I Serve a Risen Savior
Happy Easter from our family to yours! I am even more grateful for our risen Savior..that He chose to die on that cross so that we could have eternal life and peace with Him if we accept Him into our hearts and lives. That eternal life takes on a whole new meaning for me today...if I don't get to see my daughter fully healed of her infirmities on this earth I do know that I will see her fully healed one day with our Savior. I still believe that God is in the miracle working business and Savi's condition is fully in His hands. She's already proven herself as our little miracle and coming this far.
Savi was doing well today when we visited her to give her her Easter goodies. They had to go back up on her feeds (every 3 hrs over an hour and a half span of time) due to her frequent decreases in oxygen. Today she had a few episodes of desatting into the 70s, but nurse continues to think it's due to positioning and reflux. She was sound asleep while I was holding her, but as I was saying my goodbyes she decided to wake up. Little stinker has a habit of doing that. She loves to be held, except for once yesterday...she let me know the best way she could that she did not want to be picked up. Savi hasn't really fully cried...she lets out little squeals or cat sounds I call them. I swear she has hissed at me a few times. She definitely has her daddy's temper. :-)
It was a little overwhelming having to celebrate Easter with our other 2 kiddos separate from Savi, but it was good getting to see Brayden & Alayna's excitement over the egg hunts.
Savi was doing well today when we visited her to give her her Easter goodies. They had to go back up on her feeds (every 3 hrs over an hour and a half span of time) due to her frequent decreases in oxygen. Today she had a few episodes of desatting into the 70s, but nurse continues to think it's due to positioning and reflux. She was sound asleep while I was holding her, but as I was saying my goodbyes she decided to wake up. Little stinker has a habit of doing that. She loves to be held, except for once yesterday...she let me know the best way she could that she did not want to be picked up. Savi hasn't really fully cried...she lets out little squeals or cat sounds I call them. I swear she has hissed at me a few times. She definitely has her daddy's temper. :-)
It was a little overwhelming having to celebrate Easter with our other 2 kiddos separate from Savi, but it was good getting to see Brayden & Alayna's excitement over the egg hunts.
Saturday, March 26, 2016
Wednesday, March 23, 2016
Playing catch up
I arrived at the hospital on March 9th for my NST only to discover Savi's HR to be in the 80s. 30 minutes later she was out of my belly and set to be transported to Kosair Children's Hospital by 10 that evening due to being 6 weeks and 1 day premature. She weighed a whopping 7 lbs, 7 oz. Once getting to Kosairs, the answers to our questions were revealed: Savi has a cleft palate, anal fistula, heart murmur and being fed through an NG tube. She has come a long way in just 2 wks being weaned completely off the vent and straight to room air. However, March 21st came with news we were not ready to hear...Savi's genetic testing came back with the result of a syndrome by the name of Pallister-Killian syndrome. I had actually looked it up during my pregnancy due to my complication of polyhydraminos and docs suggesting possible Down syndrome. Whether she has a mild or severe case of it will only tell with time and like it has been said it is up to Savi how well she does. It's a very rare disorder limiting a child's ability to walk, talk, eat normally, etc., but the worst of it, her lifespan can be shortened. We all know who holds the true answer for that though...Jesus Christ!
As of today we continue to wait on results from her brain MRI and she was assessed by a speech therapist who suggested a swallow study due to her weak gag reflex and evaluations from OT & PT due to her weakened arm & leg muscles. Her main obstacle in the way of getting home to us is her feeding and gaining her weight back (she dropped to 5 lbs, 15 oz.) since birth.
As of today we continue to wait on results from her brain MRI and she was assessed by a speech therapist who suggested a swallow study due to her weak gag reflex and evaluations from OT & PT due to her weakened arm & leg muscles. Her main obstacle in the way of getting home to us is her feeding and gaining her weight back (she dropped to 5 lbs, 15 oz.) since birth.
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