The Big Apple



Waiting on our first plane


Hey everyone! We have arrived back home from our first trip to our new hospital home. First off I want to extend a big thank you to Mark, Darlene, Jason and Allie Sheets for opening their home to us for 3 days. This is Bart's uncle, aunt and cousins that live in New Jersey. We greatly appreciated the place to stay and enjoyed our visit.


Hanging out with Uncle Mark.




Friday morning we started our day out early waking up at 430 am to head to New York. No problems finding the hospital... thank goodness! The hospital itself is huge but thankfully we only had to learn about the 4th floor (same day surgery floor) for this trip. We passed right through the pre-op with no problems, except for the fact that when Dr. Alam asked to see Gabby walk she refused. We did talk her into walking to the next pre-op room where Dr. Alam did catch a glimpse of her walking. He was very excited and pleased with how staight she was standing. Once she realized that he was watching she froze and wouldn't take another step which amused him. They then gave her a dose of Midazolam to help relax her prior to being put to sleep. This is the first time we have done that and it helped relieve some of the tension prior to the procedure because she was so goofy and silly. She literally had me crying from laughing.



silly girl

She was actually only in the procedure for about 20 minutes. Dr. Alam came out beaming... hallelujah! I always look for his smile when he comes out from procedures because I have seen his worried face and I don't like it at all. He sat down with us in the waiting room, full of nothing but good news. He told us that he was very happy with how her bladder and urethra looked from the last surgery. Dr. Alam said that he was shocked that her pelvis has stayed together, it is expected that the pelvis will split back apart after the bladder closure surgery. He also said that we will NOT have to start cathering her because she is leaking urine as she should instead of holding it up in her bladder in addition he said that he doesn't see any signs of kidney reflux. That is great news because it was a big concern for us being that she has a pelvic kidney. The kidney is pretty much at the same place her bladder is instead of being higher up like yours or mine which could allow for urine to back up into her kidneys. Next on the list of things for Bart and I were to throw all the questions at him that have been rolling around in our heads since we saw him last October when he announced that he was leaving. 1) What is our next step from a urology stand point? answer: to take our time. He said that Gabrielle is still very small so he doesn't to rush into another surgery. The next thing to do would be her bladder augmentation (to make it larger), her body cavity is about the same size as last year so we don't want to over crowd her other organs at this point. We are looking at this step happening in about 2 1/2 years when she is around 7 years old. 2) What should we do about her colostomy? Gabrielle actually asked the other day about reversing her colostomy. Dr. Alam said to downplay it and act like it is no big deal. He did say that after doing some bowel management testing and IF it works that this surgery would happen at the same time as the bladder augmentation. 3) Do you think she will qualify for bowel management? answer: at this point....No. It will be a lot of work to get her stool thick enough and she doesn't have very much colon at this point. 4) How can we prevent overgrowth of E-Coli in her bladder because that is what caused her 2 bladder infections recently? answer: probiotics, Macrodantin antibiotics and lots of fluids. 5) Why do you think that Gabby vomits a few times a month? answer: WHAT? SHE IS VOMITING!!! Yes she randomly vomits from time to time usually in the car or wakes from a dead sleep and vomits until she empties her stomach. Then she is done. He wants to schedule an upper GI to be done locally in Baton Rouge or NOLA. He said that sometimes the colon can flip over backwards causing a problem during digestion. 6) What do you think about her hips protruding? answer: schedule an appointment to see Dr. Accousti in NOLA, her original ortho doctor from birth. 7) What is the plan from here? answer: see ortho, get upper GI both soon. Then in 6 months schedule a ultrasound follow up with him in NYC in 1 year. Our response... ONE YEAR!!!!! WHAT??? This is our first 1 year release she was born... I honestly don't know what to do with myself! Finally after all that was discussed we got to go back and see our princess.


sleeping beauty

 She bounced back like a champ and was playing that afternoon. We flew home late yesterday. I have never been so happy to see the lights of New Orleans. Thank you to everyone who prayed for us while we were traveling and also that just follows our journey. Never in my life did I ever think I would get to see NYC even if it was only from the inside of Morgan Stanley Childrens... oh the adventures this little girl has brought her mama and daddy on so far.


New Orleans from my airplane window



Catching up and learning lessons

You know from the day Gabrielle was born I have believed that God was trying to teach me something. That she was put into mine and Barts life for a reason. Our first lesson has been faith. Having the faith in God that he would guide and instruct us on not only how to be parents for the first time but on how to take care of such a carefully designed child. Our second lesson was in patience. We have had to learn patience with not only Gabrielle herself but with her treatment times and the doctors and nurses that administer these things. The third lesson that I am currently learning is tolerance. I have recently come in contact with a grown adult that was born with the very same condition as Gabrielle. I have not met this woman in person only over a private support group page. She stated that we as parents are living in a state of denial. She also went on to say that the fact that we call them adorable, well adjusted and positive was beyond her understanding. This woman has been on my mind at least one moment out of everyday ever since. I just can not get her or her statements off my mind. I will not share any of the other personal information she shared as we are a private group and I will keep her privacy. I am not oblivious to the trials that Gabrielle will have ahead of her. This birth anomaly is completely unpredictable and there are 100 different twist and turns our story can take. Gabby is one of the lucky children in our group... she has had only 4 surgeries in 4 years (that minimal amount is almost underheard of) most of the children are already well into the double digits. It also occurs on my mind daily that it is a possiblity that Gabrielle may end having to be in a wheelchair or walk with some sort of aid. I pray everyday for public acceptance of her. Currently when seen in public everyone wants to ask about her and talks of how adorable she is but what will happen when she is 10, 20 or 30? While things have changed over the years ignorance still runs rampant along with not having filters. There have been many occasions where I have overheard people question "why does she walk funny?" yet they never walk up to me and ask. I tend to be pretty open about Gabby's condition because I want her to accept herself for what she is but it is a fine line to walk because I also want to respect her privacy. I have even heard her herself question what is wrong with other children that we have encountered in the hospitals that we stay in for surgeries. I am trying to teach her that she should respect their condition and we do hers and that just because they are different as is she that different isn't bad. I would hope that with all of the different ailments in the world today: autism, down syndrome, cerebrel palsy, cancer, etc that parents are teaching their children acceptance and not pointing out the negative. I'm sorry, I can't help but feel that I am rambling but sometimes it just helps to get it out there and off of my mind and chest. Moving on to more postive news! Gabrielle had her first bladder infection since having her bladder closure over a year ago. Is this good news... no! But it is really good considering she made it a whole year getting her first bladder infection. So far she seems to still be doing fine since the big surgery last year. She does complain sometimes that her hips bother her and we are trying to get her in to see a orthopedist to address any concerns while we are in New York in August. We will be traveling to visit New York Presbytyrian Hospital which is where her urologist has moved to. While there she will have a cystogram performed under anesthesia and also have a sutcher removed that didn't dissolve as planned from the last surgery. All of this should be done outpatient pending no complications. Also coming up in the fall Gabrielle will be starting Pre-K... I still can't believe it! I will make a post once we have been to New York and let you know how the procedure went. Thank you everyone that follows Gabby and our family stories. I have also included a few pictures that we had taken back in the spring. 

Our little lady is growing way to fast.



The whole family.

Gabrielle and Avery

Big surgery one year later

One year ago on April 25, 2013 Bart and I were getting ready for the longest day of our lives to date. It was one of those days were you feel like you aged ten years. We were putting on beautiful baby girl into the hands of a young urology surgeon that told us that he could help Gabby's quality of life better. It would be a long day... I believe the surgery lasted almost 9 hours, the longest one that day at Cincinnati Children's. I remember worrying and praying that her little body would be able to handle being under sedation that long. Worrying and praying because of the amount of intense pain she would be in after surgery. Worrying and paring over the amount of medications she would be on and how they would affect her tiny body and whether the surgery would take or not. We would worry and pray for weeks after April 25th. We knew this wasn't Gabby's first surgery it was actually her 3rd but arguably the BIGGEST one yet and we know it will be no where near her last. I learned from this experience that worrying comes naturally to a parent when they are not in control of their child's fate. I also learned that my faith can deliver me through ANY hardship. As if I didn't already know this surgery reminded me of how God can put incredible strength in the tiniest packages... such as Gabrielle. Bart and I believe strongly that fate and faith have selected to be the parents of this beautifully unique child. She is 1 in 400,000 born with what the leading pediatric urologist in the nation says is the worst birth defect that you can be born with and survive. She is amazing, she is beautiful, she is what renewed my faith and she is all mine!!! We want to take you all for your continued prayers for gabby and our family. I am currently in talks with Dr. Alam about a follow up visit in a month or two at his new home hospital, Columbia in New York City (oh, the adventures this little girl takes us on). She will have a small procedure while we are there hopefully it should be outpatient. As soon as I know details I will share. Much love to you all!!! 

-Selena

                                           These are some of the pictures that I took over our time in the hospital in Cincinnati. 

Doctors rounds in the NICU each morning... a little overwhelming. 

The first time I held Gabrielle after surgery. She and I both were scared to death!!

Avery was just 3 weeks old when we left to go to Cinci... a very welcome comfort to have along. 

Gabby, Avery, and Daddy snuggle time. 

The day of external fixator removal... it was holding her for he first time all over again. 

Fantastic 4!


 Well we have been very busy since Christmas, thankfully, with the normal everyday life and it has been amazing! Gabrielle started daycare back in December and after shuffling around between classrooms and teachers she is starting to settle in nicely. We are at that point where she is excited to go each day and see her friends and when I pick her up she is so excited to tell Bart and myself all about her day. This age is so fun! She is learning all kinds of new things like how to write her name, cut with scissors and to color in the lines. Her teacher sends sweet notes of encouragement home to her each day, telling her what a good job she is doing. Her confidence in herself and with others have grown leaps and bounds.
 From a medical standpoint things have been very laid back. She has had a few ultrasounds just to make sure that the bladder and her kidneys are functioning as normal and everything seems just fine. She will go this Thursday for her 4 year old shots... OUCH! Her physical therapy is going wonders! Her legs are so much more flexible and each day she stands a little taller.

 This past weekend we celebrated her 4 year birthday and Avery's 1 year birthday. We had a wonderful party with lots of family and friends and Gabrielle couldn't have enjoyed it anymore. I can't believe that they are 1 and 4, where has time gone?! We have so enjoyed these last 4 years with Gabrielle and adding Avery to the mix has made things doubly interesting, lol. I can't wait to see what their little personalities develop into.

Our fantastic 4 year old!

Little sister Avery.

Miss Gabby blowing out her candles on her cake.