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.

The Before and After

      I realized in all the updates we have shared with you we haven't really take the time to show the progress Charlotte has made.  Thanks to the amazing surgeons here at Cook's she looks pretty incredible!

Miss Charlotte with her omphalocele 

Miss Charlotte a couple days after her repair 

God is so good! We could not say enough how blessed we are that she was able to be repaired so quickly! 

~ Brittany and Christopher 

One Week Old

  

Little Miss Charlotte and family have hit a couple of huge milestones in the last two days.  First huge milestone is that Christopher and I were both able to hold her.  It was the most incredible feeling in the world for use to finally feel our sweet baby girl in our arms! I don't think anything can compare to those moments.  She seems very happy and content when being held, she does not fuss much and continues to show more of her sweet personality.  She makes a lot of sweet little noises when she is sleeping and being held, all things we couldn't hear while she was still on the vent.  She also has a very strong personality and does not like the high flow cannula in her nose.  I keep threatening that we will have to call her Myrtle (my grandmother's name) if she continues to pull those tubes out of her nose.  Also my mom and sister had the opportunity to hold her.  That moment was incredible! We are so blessed that little Miss Charlotte is hitting all these milestones faster than we ever imagined!

Her second big milestone she has reached is beginning feeds!! Yesterday they took out her stomach tube and inserted her NG (nasogastric) tube.  This happened before lunch time and they started her with breast milk.  They began by only giving her 5 mL.  Following her second feed we had a little scare.  Charlotte became agitated and could not calm down. She had kicked her temperature sensor off, the bed heated up, and she spit up a bit. Once she cooled down, she still was more agitated than normal with elevated pulse and respiratory rate, which could be a sign of pain. Charlotte received a dose of morphine and finally calmed down enough to sleep.

Last night, Brittany and I got to help with Charlotte's first bath. She screamed and screamed and screamed. I don't think she liked it, but tired herself out so much that she slept soundly afterwards and even slept through her 11pm feeding! She has handled her feeds so well that she has gone up to 10 mL per feeding today, and tonight will increase again to 15 mL. The nurse thinks that for a baby her size, a feeding that would completely fill her belly is around 45 mL. She is doing well though, and we are slowly working our way up to a full belly.

Over the past two days, Charlotte's blood gasses tests have been favorable so the neonatologist reduced the rate on her high flow cannula from 12 Lpm (Liters per minute) to 10 Lpm yesterday and to 8 Lpm today. She continues to breathe well, and once she's down to 3 to 4 Lpm, Charlotte can start trying to nurse. Brittany is really excited, and ready for another big milestone.

Neither Brittany nor I can believe that all of these things, from surgical repair, to ventilator removal, to feeding, have occurred within one short week. At this time last week, she was being wheeled into surgery and now we're talking about nursing. This has been unbelievable, and all three of us are incredibly blessed.  God is good!!

The goal for today is to have an uneventful day. Charlotte is a fairly active baby, awake more often than normal. Typically newborns in the NICU are awake only for "cares," the routine temperature check, oral care, feeding, and diaper change, and then the baby calms down and goes back to sleep. Little Charlotte is often awake, active, and sometimes looking around. So today we want Charlotte to get lots of rest along with a calm and uneventful day. So far, she's slept well and laid peacefully on mommy's tummy.

~ Christopher and Brittany

 

Day 4 Update

Charlotte has been doing amazing.  Her incision looks great and the surgeons have been really happy with the progress.  I don't know if it was mentioned in previous posts but the surgeon who did her repair tried to give her a belly button so I cannot wait to see what that will look like as she continues to heal! Her breathing has been amazing and she continues to breath over the vent even at the lowest setting.  She has been doing so well that they have decided around noon to take her off the vent.  Brittany was overwhelmed with emotions as this occurred.  The doctor said this will be a lot like being taught to swim by jumping in the pool, there isn't a good way to see how she'll handle being off the ventilator until it is removed.

Once the ventilator was removed, Charlotte cried softly and tried breathing, and breathing hard at that, but struggled to pull in full breaths since her vocal cords have been inflamed due to the ventilator intubation. They provided some gaseous anti-inflammatory similar to an asthma inhaler, but the medication is designed to work on the upper respiratory track. She cried stronger and louder than before, but still struggled to pull in full breaths. She was put on a high flow cannula to assist her breathing, and increased the flow rate until she breathed easier. The neonatolgist preferred to try the high flow since it is gentler than CPAP, but warned that we may have to move to CPAP if the high flow doesn't provide sufficient assistance.

Without the ventilator, Charlotte can now let us know how unhappy she is when she's cranky with squeaky little cries. She fusses more since she goes longer and longer between morphine doses (up to 24 hours). Each morphine dose is also half the volume of her original post-surgery dosage. Keeping her calm and asleep is a bit of a challenge since she isn't sedated. We use a small toy tied from a blanket to shield her eyes, and keep it as dark as possible for her. Charlotte takes after both parents: she is stubborn and fiesty. She wiggles and waves her arms when she's upset, breaking free of a pseudo swaddle we've tried with a strap of blanket across her chest and tucked into her crib. When the blanket strap holds her arms tightly, she calms down, fusses less, and sleeps.

Blood gasses were drawn after an hour after removing the ventilator, and the results were favorable. So far she has been resting well after afternoon excitement. Just before her 1600 vitals check, diaper change, and oral care, Brittany was able to take Charlottes footprints and print them on top of a passage in Psalms inside Charlotte's first Bible.

We spoke to the pediatric surgeon who indicated that the bowel is sounding good and the skin tightness around the torso and belly is softening. The inflammation from surgery is reducing with her continued recovery. Next big step from the surgery team will be to decide when to introduce feeding, which may begin within the next few days. Charlotte continues to poop, another positive indication of bowel function, so hopefully these are all good signs that she's taking her next forward steps.

With any luck, Brittany or I may be able to hold her this evening or tomorrow morning. We're very excited, but I'm gonna have to let momma hold baby Charlotte first.

~ Christopher and Brittany

Day 2 Update

       

       Charlotte is doing amazing today.  She did end up have the surgery to correct the omphalocele and the surgery went very well.  There was liver and maybe a little bit of bowel involved in the omphalocele.  The doctor found that the liver was stuck to the membrane, and when he was able to disconnect the liver from the membrane, the liver just dropped into place, easily.  What an incredible surprise and blessing!! 
       After her surgery, Charlotte came back to her room and has been sedated and on a ventilator since coming back (both of which are normal after surgery).   Yesterday, she had some difficulties peeing, which the caused the doctors to be a little concerned.  They upped her fluids to help stimulate her pee, and we just waited to see what happens.  The doctors did not seem super concerned about it, but they did want to make sure they got ahead of this situation.  They put in a catheter to monitor her urine output.  Last night, she had peed enough that they felt confident enough to remove the catheter. They also took her off the dopamine and excess fluid because she is doing so well.  She is so perfect, and we are just waiting, watching her meet and exceed expectations. Hopes are, that sometime this weekend, we might be able to actually hold her.  I cannot wait to hold my baby girl for the very first time!! 

Charlotte Marie Harding

The culmination of months of worry, concern, stress, and anticipation peaked this morning: Charlotte Marie Harding was born this morning at 7:52, weighing 6lbs 6oz and 20 inches long. To our immense relief, before we could even see our baby girl, we could hear her crying. And crying and crying. For so long we've been concerned about her lungs and her breathing, so hearing her cry was such a weight lifted off our shoulders. Little did we know, she wasn't just crying, but breathing well enough on her own that she did not require a ventilator.

She was put on CPAP to provide a little extra pressure to help fill her lungs with each breath, but Charlotte was breathing each and every time on her own. She did well enough that before she left the OR, I was able to take some pictures of our little girl and Brittany was able to hold her hand. Then she was whisked away to the NICU for tests, PIC line insertion, and evaluation.

While Brittany was moved to her recovery room, I was able to go find Charlotte's new room. Her omphalocele was already dressed and bandaged, and all of her monitors and sensors installed. She has the longest little fingers and toes, and she does not like her feet touched - she kicks and wiggles every time her feet are touched.

Charlotte had more tests to undergo and to get her PIC line installed, so I returned to Brittany's recovery room. The neonatologist came to Brittany's room and gave us our first post-birth update: Charlotte's omphalocele was smaller than expected. The omphalocele was by no means small, but it wasn't as giant as some scans and indications suggested. The neonatologist hinted that the pediatric surgeon may recommend Charlotte's repair surgery earlier than expected. While we were hopeful, we were not prepared for the concerns or risks of an earlier surgery - all along we had been prepared for immediate ventilation with a focus on lung/heart function before addressing the omphalocele itself, likely in 6 months to a year.

The PIC line insertion was not successful, as the line kept turning the wrong direction. The neonatologist did not like the PIC line placement, so it was removed in favor of a central line. The echocardiogram showed no heart issues that would complicate surgery or concern the anastethesiologist.

The pediatric surgeon met with us just before noon and laid out the pros, cons, benefits, and risks of doing the repair surgery today, and waiting to do the repair surgery in 6 months to a year. The surgeon believed that there was enough skin to close the omphalocele, but wasn't sure if there was sufficient muscle tissue to close the opening. The only way to make that determination is to begin the surgery and discover the muscle lining location. He felt like performing the surgery today was the better option. The omphalocele was good sized, but not too big to correct immediately. There was a risk that if enough muscle and/or skin tissue wasn't available to close the opening, that a dissolvable patch or mesh may be used to bridge the gap. Worst case scenarios would entail an opening too large to bridge or gap with a patch, which would require a silo bag (emulating the protective covering of the omphalocele) or closing the opening too tightly creating too much abdominal pressure causing other issues. Best case scenario would be a repaired omphalocele and looking towards breastfeeding by NG or OG tube in the next few days. Post surgery, she would likely be on a ventilator for a few days to assist with breathing as she becomes accustomed with her new belly arrangement.

Brittany and I decided to perform the corrective surgery today, and little Charlotte entered the OR around 3:30 pm for her omphalocele repair and central line insertion. The insertion went well, and after an hour the OR nurse called to give us an update. The surgeon began the repair and if things went well, he'd call with the next update in an hour or so. At 5:00, the pediatric surgeon called us with good news: the repair was complete. There was just enough muscle and skin tissue to close the opening, but the layers were pulled pretty taught. He was a bit concerned that the sutures may tear under the strain, so he added some patch material on top of the muscle sutures to bolster the stitches. Then the skin closed on top of the patch material with another set of sutures.

Brittany and I are waiting for Charlotte to transfer back to her NICU room, and get settled back into her crib. She'll be sedated after the surgery and her very busy day, and will likely be intibated and on a ventilator. But we are incredibly relieved and ready for our little girl to tackle her next obstacles and steps.

~ Christopher and Brittany