We're baaaaaack! After making you all sob and thank the stars for your healthy babies, we're back one more time with Part V of The Birth That Changed My Life. And this time it's extra special, because MEGHAN AND WES THEMSELVES will be filling you in on all that's been going on in the last 7 months since Charlotte's infamous birth. Enjoy!
It was two weeks before my due date. We had been to a doctor who specializes in high risk pregnancy for an ultrasound, and the results didn't look good. To confirm the findings, we were sent to Children’s National Medical Center (CNMC) for an MRI. The better imaging could give us more insight into Charlotte's condition.
After the MRI (which was the scariest thing ever - my anxiety had hit a new high) we were introduced to a team of doctors. They had reviewed the scans and confirmed the previous prognosis – Charlotte had no kidneys, and perhaps no bladder. We were told by the specialists that because of a lack of kidneys and therefore amniotic fluid, the likelihood of Charlotte's lungs being developed enough to survive outside the womb was less than 5%. We were advised to start preparing for the death of our baby.
In the weeks before her birth, we mourned for our little unborn baby who was still thriving inside of me. We bought her a beautiful frilly dress to take what we assumed would be the only pictures we would have to remember her by. We made hand and footprint art with our hands and left places for Charlotte's hands and feet next to ours. We even made a recording of her strong little heartbeat to put into a stuffed bear! I didn't want to regret not capturing the memories of this amazingly strong baby that I had grown.
Despite being advised to induce labor, we decided to spend as much time as possible with Charlotte and let her determine when she would like to make her appearance. Two long, horribly emotional weeks later, she decided to make her debut.
If Charlotte was to have a chance of survival, her lungs would have to be developed. We could deal with kidney issues with dialysis, but her breathing was the main concern. We were told that if she cried at birth, there was a good chance that her lungs were developed.
After a long and emotional labor (see Part IV), Charlotte was born CRYING!! Surprisingly, she looked like a normal healthy baby! After evaluating her, the NICU doctors determined she had a pneumothorax (air outside of the lungs) causing her right lung to not expand correctly. We decided to give her some blow-by oxygen to keep her comfortable and to see if it would resolve on its own. Within two days, her breathing was perfectly normal!
Hours after Charlotte's birth, she was on her way to CNMC with her Daddy as I lay in a hospital bed trying to recover from two blood transfusions, crazy blood pressures, an epidural, and Pitocin. Oh, and the fact that I just had my baby who was born alive and strong, and that she was not with me!
I think it was the next day…it’s all really just a blur, so it could have been two days later – not sure. I managed to get out of bed and shower without passing out, so the hospital staff decided I could be discharged to go see my baby! My parents, who were a great support and didn’t leave my side throughout all of this craziness (THANKS MOM AND DAD), drove me to CNMC and helped me get to the NICU to see Charlotte. She was amazing, beautiful, stunning, and ALIVE AND THRIVING! She looked just like her daddy!
At two weeks old Charlotte, went into surgery for her Peritoneal Dialysis Cather and Gastrostomy Tube to be placed. Handing my perfect little baby over to the nursesand knowing that she was going to come back with tubes coming out of her belly was the hardest thing I have ever done. I cried like a baby and wouldn't let them take her from my arms untilthe last possible moment. I was a blubbering mess. Wes was amazing; he just held my hand and reassured me everything was going to be okay. This is what we had signed up for when Charlotte came out crying and showed us she was willing to fight for her life!
Charlotte came through surgery just fine, and the next day we were transferred out of the NICU to the Heart and Kidney Unit (HKU). We spent the next two weeks watching Charlotte heal and working to stabilize her electrolytes with many different medications and supplements. At that point we could all go home together for the first time!
For two weeks , we were told we would get to go home the next day. Then that day would come, and we would be told we couldn't leave because Charlotte's levels were not stable enough yet. It was stressful and disheartening. I had not been home in over a month at this point. I was living in the Ronald McDonald House and in her hospital room; it was the only home she knew, and it broke my heart.
Then the day finally came! We were being discharged to go home!!! It was September 3rd 2016: almost a month after Charlotte was born. It was a miracle. On our way home, Charlotte began spitting up. This had been happening on and off for about 3 days prior to us being discharged, so I really didn’t think much about it. The nurses and doctors didn’t really seem concerned.
When we arrived home, it was amazing and overwhelming all at the same time! My house was a wreck… I had to measure out and organize 12 different medications that were each given several times a day. I had to pump my breast milk, measure it out, and add a supplement to it. It would bind any potassium, and then we would pour off the remaining milk. At that point, we would add the other supplements at different times. The concoction was poured into her feeding pump, and every three hours we would repeat. I didn't even have enough time that evening to cuddle my little baby.
When it was bedtime, I noticed Charlotte was very agitated and couldn't get herself comfortable. She was grunting a lot. We tried to put her in the bassinet next to the bed, but she just couldn’t settle herself.
I took her into the living room so Wes could get some sleep. I put her in the swing, which seemed to settle her down a little bit. The next morning, Charlotte was still very uneasy and restless. Neither Charlotte nor I had gotten much sleep the night before, so I chalked it up to that. A little later that morning, I noticed Charlotte was breathing rather fast and bobbing her head up and down. I immediately knew something wasn’t right. I called my mom and sent her a video of what Charlotte was doing. We decided that I should probably call the Hospital just to make sure nothing was wrong.
When I called the nephrologist (Kidney Doctor) at CNMC, she told me to immediately take Charlotte to Peninsula Regional Medical Center (PRMC) to evaluate her. It sounded like she was in respiratory distress. Less than 24 hours after coming home, we rushed Charlotte back to a hospital. We were immediately admitted to the emergency department where they put Charlotte on some pressurized oxygen, and they called Children’s National to come get her.
A few hours later, Charlotte and I got to experience our very first Helicopter ride. I am not going to lie; it was beautiful, yet terrifying.
We were re admitted back into the NICU at CNMC. Charlotte was extremely fluid overloaded, and her lungs were filling. The Doctors' main goal was to get fluid off of her without having to start dialysis. Her dialysis catheter, which could be used to remove the fluid, had only been healing for two and a half weeks. The nephrologists suggested we wait four whole weeks before using it. If you use the catheter too soon, the chances of the fluid leaking out of the exit site and introducing infection into the peritoneal cavity (the space around all of your organs) is very high. Most deaths from PD occur from this type of infection called Peritonitis.
Charlotte was put on diuretics to try to get her to urinate out the extra fluid. That night, Charlotte's breathing was so bad that she turned white and blue. They had to assist with her breathing and intubate her. THIS WAS THE MOST TERRIFYING THING I HAVE EVER EXPERIENCED. I was sleeping next to her bed in a chair one minute, and then the next minute the room was filled with 20 doctors and nurses. My baby was not breathing well enough on her own to survive.
Wes and I were told we might want to step out while they place the breathing tube. We left the room, and all I did for the next few minutes (which felt like hours) was sob uncontrollably in the hallway. When we were told to come back into the room, my baby was cold to the touch and white as a ghost. WORST FEELING EVER!
Charlotte was attached to a ventilator for about a week. In that time, we had to start peritoneal dialysis (basically, the abdomen is filled with fluid and drained to extract extra fluid and toxins). At first, it was going great! The dialysis pulled a ton of extra fluid off of her lungs and allowed her to be weaned off of the breathing support. However, a few days later when I was changing her diaper, I noticed that the dressing which covered her belly button was wet. When placing her catheter and G-tube, the surgeon had entered through her belly button, which was still healing. I immediately showed the nurse, and we stopped dialysis. The nephrologists had never experienced leaking of the PD fluid from the umbilicus before, so this was new to everyone.
A few days later, Charlotte was diagnosed with her first round of Peritonitis, most likely because of the leak. Luckily, we caught the infection very early, and with lots of antibiotics they were able to clear it up!
Over the next few weeks, we stayed off of dialysis to allow her umbilicus to heal properly. The only downside to this was she became fluid overloaded another two times and struggled with breathing once again. Luckily, it was never as bad as the first time, and she only needed minimal respiratory support.
Finally, the 4 week mark of healing came around. Charlotte was now one and a half months old, and we tried to start dialysis very slowly with minimal fluid. We didn't want to stretch her cavity too much and cause it to leak again. Well what do ya know... It leaked again, and she was on antibiotics... again...for potential peritonitis.
Third time's the charm…right? A week later we tried dialysis, and there was NO LEAKING!!!!!! From this point on, Charlotte was on 24/7 dialysis. Her fill volumes were too low for a machine, so it had to be done manually. We remained in the NICU for another few weeks with one on one nurses. Their main responsibility was to fill and drain Charlotte's dialysis fluid every single hour of the day.
I was with Charlotte at the hospital 24/7 watching over our nurses and making sure everything was done correctly. There was great risk of contamination and overfilling. As each new nurse came to watch Charlotte, I made sure they were doing things correctly. YES, I was that hover mom J .
We gradually increased the amount of fill over the next few weeks so that we could graduate to the cycler machine that does the dialysis on its own - no one on one nurse needed. I really couldn’t wait to get out of the NICU. When we reached the right amount of fill, we were transferred to the HKU where I spent the next two weeks with Charlotte. I learned how to use the cycler machine and how to take care of Charlotte on my own. We were so close to going home!
Wes drove into town to pick us up on November, 1st - It was finally time to head home! ...for the second time... It was much easier than before. My house was only a semi-mess this time, and I only had 6 medications to deal with instead of 12! It was amazing to be home with Charlotte. Up until this point, I had only dreamed that this day would come. We were home, stable, and doing well!
Since November 1 2016, we have been home trying to figure out our new normal (like every new parent). Charlotte is doing well; she is growing and thriving beautifully. She currently is 7 months old, 26 inches long, and weighs 13.6 lbs. She is sitting up on her own, babbling, and has a very strong personality! Charlotte is not shy in telling you what she likes and dislikes. She is our little miracle baby, and we are so blessed to have her in our lives!
We are currently doing home Peritoneal Dialysis with Charlotte every night for 9 hours. Just call me Nurse Mommy. We will continue PD until she is eligible for a transplant: when she reaches 26 lbs.
Please join us or donate to “Team Charlotte” for the National Kidney Foundation's Kidney Walk! The event takes place May 7, 2017 in Salisbury MD. 80 cents of every dollar donated goes to research, patient services, professional education, public health education, and community services. We would love to see all of you there to support Charlotte and the millions of others that suffer from Kidney disease! Even if you cannot join us for the walk, you can still help out by donating to our team: http://donate.kidney.org/site/TR/Walk/Maryland?team_id=203238&pg=team&fr_id=8621