Surgery Complete

Surgery is Complete

        This morning began Charlotte's treatment.  She started IV fluids last night and had those given to her through this morning.  I was able to nurse Charlotte until 6 am which was nice to help get some extra snuggles in while I could.  At about 2:00 today Charlotte went in for her surgery.  The doctors were able completely remove the tumor along with the adrenal gland.  The medport was successfully inserted on right side of her body.  This is where they will be administering the chemo medicine.  The pathologist was there and they were able to confirm that the mass is a neuroblastoma, which does mean cancer.  The following chemo treatments will be for precaution due to the cells found in her eye.  Currently the doctor thinks that this chemo treatment will be the enough to treat the cells found in the eye and that she will not require any additional surgery in her eye socket.   The oncology doctor was able to successfully extract a bone marrow sample that will allow us to rule out any additional growth of the neuroblastoma into her bones.  Our next steps now are to wait.  We are waiting on information on the N-Myc protein that will tell us how aggressive the neuroblastoma is and will give us more information on further treatment (looking for N-Myc amplification).  Currently Charlotte's oncologist believes that from the looks of things, her neuroblastoma is an intermediate risk and will be using the intermediate protocol for her chemo treatment.  However, if her N-Myc comes back with amplification they would do something different.   We will not know about this protein until probably a week or so from now.  Charlotte however, will start chemo sometime next week, probably mid week.  Charlotte is currently back with us and resting.  She has been able to have some breast milk which is awesome!! This means that they didn't have to do much manipulating of the intestines and allows for our very hungry little girl to get some milk into her body.  Now it's a matter of letting her heal and getting test results back.  

Prayer Warriors Needed

Prayer Warriors Needed 

         Our little Charlotte is in the process of being admitted into the hospital.  Back in January Charlotte had an ultrasound to get more information looking for reflux. During this ultrasound her GI doctor found two masses that were interesting but not of concern at that time. The doctor recommended a follow up ultrasound in three months to watch these masses.  Fast forward to March and we had our follow up ultrasound and the doctor detected that the masses had "evolved" and we were being referred to oncology.  Those dreaded words no parent ever wants to hear with their baby - oncology.  This is our worse nightmare.  However, there was nothing confirmed and nothing stating cancer yet so we knew we just needed to wait and continue with the tests.  The next test that followed was an MRI to obtain some better imagining of the mass in question.  The MRI gave us good information but the oncology doctor wanted another scan so we wait again. The doctors were looking specifically at a mass on her adrenal gland.   On May 3rd we went in for what is called an MIBG scan where they would look at what iodine did in her body.  This morning we received a call from her oncology doctor saying that they found a new spot in her orbit socket and they wanted us to come down to the emergency room immediately to get another MRI of her head this time and a CT scan of her chest and neck.  The doctor also said that we should pack a bag and expect to be admitted to the hospital and prepare for Charlotte to have surgery on the adrenal mass along with a biopsy.  We have been at the hospital since 11:30 this morning at this time.  They have done the MRI and CT scan and Charlotte is back in our arms right now.  They have decided to admit her to the hospital because the mass in her eye is concerning and they want to do surgery to remove the mass on her adrenal gland so that they can biopsy the mass and see what kind of tumor we are dealing with. They have said that this is most likely a neuroblastoma which is a common type of cancer among babies.   There are two ways this situation can go - first one is that this mass could be very mild and just requiring monitoring and hopefully it will get smaller and eventually become more like scar tissue.  The second possibility is that it more moderate to sever which means that it could require surgery of her eye and possibly chemo.  Right now we are just waiting - waiting to find out when her surgery will be and what comes next.  Right now all we can do is pray.  Pray for good results for the biopsy.  Pray for the doctors who will be completing her surgery that they have steady hands and quickly complete the procedure getting all the tissue they need,  Prayers for Charlotte's healing from surgery, that it is quick and without complications.  

5 Months Old

       It's incredible how quickly time has flown by already.  Our beautiful baby girl has grown so much, and it has been so much fun to watch.  She is now rolling over the moment you set her down and just pops up and likes to look all around.  She sits up nicely when propped up on the couch.  She is "talking" up a storm making all kinds of sounds.  She is definitely taking after her mommy, being a chatty little girl! She now really loves making raspberry sounds, reaching out and pulling mommy's hair and laughing.  She is also currently working on trying to crawl, which is making her mommy very nervous because I am not ready for her to be so active and on the move! She needs to slow down!! Charlotte is the happiest baby I have ever met.  She wakes up every morning with a huge smile on her face just ready to great the day! She is a great little sleeper.  I have to wake her up once a night to feed her. 

         Currently the only struggle that Charlotte is having is her weight gain.  She has never really been on the growth chart for babies her weight at birth.  The last two months, she has only gained 9 ounces each month.  The doctors are looking for a half an ounce to and ounce worth of gain a day.  Charlotte is gaining about a 1/3 of an ounce a day.  This slow weight gain has been happening even with Charlotte receiving three fortified (supplemented) breast milk bottles (breast milk with a little bit of formula for extra calories) every day.  This week we met with a Gastroenterologist and a Dietitian to work on a plan to help Charlotte start to gain more weight each month. 

        Tomorrow (Friday, December 16th), Charlotte is going to get an upper GI test to check and see what her intestines look like.  This may provide more information about Charlotte's reflux or why she is spitting up as much as she does.  Following that we are adding one more fortified bottle a day for now.  This will be accompanied by more weight checks.  I do not know yet what the next step will be if she does not start to gain a half an ounce to an ounce a day.  One thing I do know is that she is an incredible little girl, and is so blessed to have so many people out there thinking about her and praying for her.  Charlotte is still in need of her prayer warriors out there praying that she will finally find a rhythm and start gaining some healthy weight.  

         It breaks my heart to still have all these tests that the doctors want to run on my little girl.  I am just hoping one day she will stop needing all the testing that is required. To Christopher and me, she seems like a happy and healthy normal little girl.  As I am sitting here typing right now, she is playing in her Exersaucer and having fun manipulating the toys and bouncing up and down.  She lights up when anyone says the word “hi” to her, even complete strangers.  We are just so blessed, despite the small struggles she has had, compared to what she could have been dealing with!  She is just such a happy and joyful baby.

23 Days Old

         We have the most amazing news to share, yesterday July 28th, after 3 weeks and 1 day in the NICU, we were able to bring our little miracle home! The doctors were really impressed with all her growth she had made.  They were proud of her eating, both with the breast and the bottle (still with breast milk).  We are going to continue to watch her weight gain.  That was the only concern that the doctors had as we were talking about discharging.  She was still not showing a pattern of steady weight gain that the doctors were completely satisfied with, however they thought this is something that can be handled as an outpatient with our pediatrician.   Christopher and I are over joyed to have our sweet little angel home finally.  Now the real fun begins!  Charlotte met Jax for the first time and Jax seems to be in love.  He is ready for his protective guard dog duties to start! 

        Charlotte had her first pediatrician appiontment today.  Dr, Hayes was very nice, however someone was not impressed with all the poking that was done. The exciting news about this appointment was that Charlotte was up one ounce from when she was discharged from the NICU.  This is perfect because typically babies gain about an ounce a day, give or take some exceptions.  

       Thank you again to all of those who have continued to pray for our family and especially little Charlotte.  We are so blessed to have you all in our lives and to pray for the growth and health of our daughter.  Please know if there was a way to reach out to each of y'all individually and say thank you we would.  May God continue to bless all of y'all in your lives.  

Love, 

   Brittany, Christopher, Charlotte and Jax

 

19 Days Old

       Charlotte is still doing amazing and wowing everyone in NICU.  There is not a whole lot to update with today, except to say that she just continues to get cuter.  She did get her center line removed, which means the only cords that she has left now are her little monitors for her heart rate and breathing and her NG tube.  She still likes to pull that NG tube out of her nose! She can be quite the trouble maker! 

       The only thing we are currently working on is getting Charlotte to take full feeds.  Full feeds for Charlotte is about 56 mLs.  We are working on this being a joint effort from breast feeding along with supplementing with bottle.  We do not want to use the NG tube at all anymore in order to get her home! In order for her to be considering getting "full feeds" while breast feeding she has to eat for 15 to 20 minutes each time she eats which is at least 8 times a day.  She has eaten for over 15 minutes only a handful of times and the rest of the time we are supplementing with bottles.  When she doesn't finish her half or whole feed from the bottle she then still needs to be pushed feed through her NG tube.  Charlotte gets so comfortable while breast feeding that she often falls asleep and does not want to be woken back up. We are trying every trick in the book to keep her awake, such as feeding her naked, tickling her while she is eating, burping her and changing her diaper as breaks during breast feeding. They only sometimes work.  The doctors are not too worried about it yet.  They continue to remind us, mostly me, that she just had major surgery involving all those digestive organs and a lot of times it just takes time for these babies to get the hang of the eating thing. It definitely helps to hear that it is not just me or something else making this whole process more challenging for her.  As soon as she gets a hang of this eating thing and is no longer needing to be supplemented feed through her NG tube then we will be able to take her home!! This is the only step left for her to conquer! 

       We can't say enough amazing things about all of Charlotte's amazing doctors and nurses here at Cook's.  This truly is an amazing place with incredible people.  I always knew nursing was a calling much like teaching but I haven't experienced how incredibly called and devoted these individuals are.  Charlotte is so blessed to have such wonderful people that are caring for her in these early days.  I love them all so much and only wish I could give them as much as they have given us in these 19 days of little Charlotte's life. 

Love, Brittany, Christopher and Charlotte 

2 Weeks Old

       Our sweet little Miss is 2 weeks old today and we can hardly believe it.  Sometimes it feels like its been a month since she has arrived into our lives because so much has happened, and in other ways, we wonder where has the time gone already!?

       She has made so much progress and growth in the last couple of days.  The first major step came on Sunday when they removed her oxygen cannulas from her nose.  She is now just breathing room air!! This is a huge step for an omphalocele baby because lung development, as mentioned in previous posts, is a concern because their lungs are sometimes underdeveloped at birth.  Little Miss Charlotte has excellent lungs as we have learned during some of her little fits.  She is doing so well breathing room air.   The second big milestone that Charlotte hit in the last couple of days was getting her pulse oximeter monitor (Pulse OX) taken off.  Due to her breathing going so well as mentioned previously they did not need to continually monitor her pulse ox, which monitored how much oxygen was reaching the body's tissues.  However, they will continue to monitor her breathing with her breaths per minute.  These have been going well also,  sticking around 60 - 70 breaths per minute, until she gets upset and then she really puts those awesome lungs to work!

      The third big step for Charlotte this week was she was switched out from a "Giraffe Bed", which is the typical NICU enclosed bed, to a crib bed.  Due to Charlotte not needing the warming lamp to help regulate her temperature and having less "lines" to her body, she is able to use the crib bed now.  The crib bed is also helping us emulate a similar environment that she will have at home with the intent to prepare her for going home.

      The fouth big step for Miss Charlotte is that she has started working on breast feeding with mommy.  This has not been an easy process yet but each feed and day is getting a little bit better.  For right now they are keeping her NG tube in to help supplement her feeds until we start getting the hang of these feeds from mommy.  However, today she finally had her first full feed from her mommy and had a nice poopy diaper shortly afterwards. These are all good signs and if they continue we are getting closer and closer to bring Charlotte home.

     Tomorrow the doctors are going to remove Charlotte's central line.  The central line has been where Charlotte has received all of her medicines through.  The doctors do not see any need for keeping the central line in her due her not needing any more medications directly.

   Christopher and I could not be more humbled and blessed by everyone's prayers and love that has been sent Charlotte's way.  She is truly a gift from God and through his divine mercy and the intercessions of all of y'alls prayers she is doing incredible and will hopefully be going home sooner than we ever could have imagined.    

~ Brittany and Christopher

Holding Charlotte for the First Time

         Wanted to share this special moment when I first held her skin to skin.  The most incredible moment of my life.