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.

Merry Christmas!!

Merry Christmas everyone! We here at the Himel house hope you all have had a very merry day. I am so in awe at the love we have felt in our house today. We started out our day just the four of us and then family and friends arrived to exchange hugs, kisses and of course a few gifts for the girls. This year has been amazing for us and we wouldn't have made it through if it had not been for our family and friends. To be able to have able to have a few of that support group at our house tonight was great. Our holiday festivities will continue this weekend with a trip to visit my mom and then maybe in s few weeks we will make a trip to Ruston. 

After a day like today I wonder sometimes why we are so blessed when others have such hurdles? But I also know that I shouldn't question such things. I just be humble and thankful for the blessings bestowed on our family such as health, full bellies and beds to rest. Thank you dear lord for our blessings, we are forever grateful for your birth and sacrifice so that we may have the lives we live today. We do have hurdles of our own but with our strength and faith we will make them through continuously. Thank you again for the prayers, and kind words that we receive daily they mean the world to us! 

Happy Thanksgving from the Himels



Gabrielle @ Halloween. She dressed up like her doctors at Cincinnati Childrens.

Its been a little while since I have posted an update so I am going to catch up several things. First off Halloween! Halloween here was yucky, rainy like possible tornados bad. So instead of going trick or treating like normal we became innovative and ran to CVS and bought some candy and  had some family come over really quick. Next put a family member in each room of the house and have Gabrielle trick or treat down the hallway. I personally think it was very memorable and I hope that she remembers it for a long time.

Hallway trick or treat with Granny and Kris.

The next thing we have going on is a continuation of an issue that was brought up at our last Cincinnati trip. There was a bump that popped up on her incision line. At the time of her follow up appointment in October Dr. Alam thought it was a sutcher that had worked its way to the skin, he put her on antibiotics and said to watch it. Well since then it has gotten gradually larger currently it is about the size of a large blackberry. I texted him a picture of it a few weeks ago and he said that he would like her to been seen locally because he was concerned it was her bladder. Well we got her worked in to see Dr. Ortenberg in New Orleans. He really didn't have much opinion about it he just kept saying that he really needed the surgery notes from her bladder closure surgery... which of course I had left laying on my desk at work, go figure! He suggested that we do a scope or an x-ray. I told him to call Dr. Alam and ask what he thought should be done. Dr. Alam texted me and said that he thought a scope was jumping the gun because it is evasive and she would have to be put to sleep. X-ray it is then but Dr. Ortenberg said we couldn't have one that day in New Orleans that her case wasn't urgent and that it would have to be scheduled.... ARG so aggravating!! Anyway long story short Dr. Ortenbergs office dropped the ball and Magnolia Pediatrics and Woman's Hospital Imaging saved the day! Can I just say really quick what wonderful doctors and staff are at Gabby's peds office and I can't say enough about all the great people at Woman's Imaging Dept! The images and reports have been sent to Dr. Alam. We have yet to hear from him about them but the radiologist @ Woman's Dr. Ruiz told me that he thought it was scar tissue that had worked its way through her skin... phew! what a relief. That means that it most likely not her bladder, this is amazing news. But I would still like to hear it from Dr. Alam himself.

Next on the list is our trip to Ruston for Thanksgiving. We had a great time... Bart killed 3 deer so we are all stocked up for the year. I got a little shopping done but still not finished yet. Gabrielle is super excited about Santa this year and we have a Elf on the Shelf spending the holidays with us her name is Applecore or AC for short. Applecore? Strange right? Gabrielle picked it (it is also what she wanted to name Avery).

My lovely little lady... sniff, sniff she looks so grown up!

 I can't believe the year we have had and we have so much to grateful for. Our year started out with the birth of a healthy little sister for Gabby. Then just three weeks later we were off to Cincinnati to live for almost 2 months for the biggest surgery to date for Gabrielle. It was a rough recovery not only for Gabby but for mama, daddy, nana and granny too (they came to stay while we were in Cinci) but we survived. Terrible three's have been a learning experience for everyone but we are getting there. Gabrielle has been healthy for the most part aside from a virus here and there. This coming Monday Gabrielle will start daycare for the first time. We have been so blessed to have Bart's Granny Dolores stay with Gabrielle everyday for almost 4 years. I can't imagine not coming home and seeing her everyday it just won't feel like home without her here everyday! Thank you so much Granny for your commitment to our family these last few years we appreciate it so much! I will keep you posted as to how daycare goes everyone... but for now it is time for bed. Much love and please keep the prayers coming because starting daycare is going to be a huge adjustment for my little girl. Thank you!

Quick follow-up

Hey everyone! I know that it has been awhile since my last update. So we start from this weekend and work our way backwards. This past Thursday we left out for Cincinnati to go for a follow exam with Dr. Alam. Our trip started off interesting with me leaving my purse on the plane that we flew in on from New Orleans and then while I was getting my purse back we missed our connecting flight from Dallas to Cincinnati. What luck! But we got on standby for the next flight and only arrived one hour late, thank goodness. Gabrielle was amazing on the flights! I couldn't believe there was no crying, being nervous, nothing. We were able to get a room at Ronald McDonald house, which is as close to home as you can get especially being that some of the workers recognized us right off and we haven't been there since June. That is amazing to me... think about they amount of families that pass through their doors on a monthly basis. What an incredible facility they have, volunteers and employees. After that we had to enjoy all the things they offer there. Gabrielle had to go play in the play room, we ate a good home cooked meal, and played on the playground outside and then we "rented" a couple of movies and watched those. Whew what a day!

Gabrielle and her daddy putting tabs in the house @ RMH Cincinnati.

The next day we started off the day early with a renal ultrasound. Again, Gabrielle made me eat my words. No crying, no fussing, she justed laid there and watched her Tinkerbell movie they had in. Next was our appointment with Dr. Alam. While we were waiting we meet a really sweet lady that told us all about bowel management and what her daughter was going through. It was really interesting to talk to her about because we will probably be starting bowel management next year with Gabrielle. Bowel management is a process that you have to go through prior to getting your colostomy reversed. They try different diets and laxatives to see if Gabrielle can have a dry colostomy bag all day and then only go to the bathroom once a day. If she passes that test then we could possibly have her colostomy reversed. The lady we ran into said that her daughter had done excellent with it and that it was much easier than it sounded... hope so! Next we were off to Dr. Alam. While in the room Gabrielle seemed so excited to see him, she kept asking where he was and when he was getting there. Well when he finally got into the room she clammed up. She would hardly speak  to me or Bart much less Dr. Alam and his nurse Lisa. She did let hime pick her up for a minute... that is monumental. Earlier in the week a spot popped up on the incision line from Gabrielle's surgery. We had Dr. Alam look at it. He said that is was small absess caused by a stitch from the surgery. He put her on Keflex 3 times daily for 10 days. Dr. Alam said that it would have to surgically removed. He told me to text him a picture of it the next morning to make sure that it was ok for us to go home. He also said that it is a procedure that he would trust Dr. Ortenburg (head of Urology @ Children's New Orleans) to do. We have to contact him when she is done with her antibiotic and he will give us instructions from there. Next issue to address was a piece of tissue that appear and disappear in her urethral opening. After examining that he decided it was a bladder polyp, which will also have to be removed surgically. He wants us to follow up with him in about 6 months for a bladder scope, at that time he will remove the polyp. He also wanted to address Gabrielle's weight and size, that is always a huge concern. She has finally made it onto the chart @ 0.2 percentile... yay Gabby! It only took her 3 1/2 years. We are bumping her Pediasure up to twice a day. If she doesn't start putting on weight then we have to revisit the NG tube... NNNOOOOO! I don't want an NG tube and I know she sure as heck doesn't! Prayers that she starts adding weight!

Love this man! This is Gabrielle and me with Dr. Alam. He is awesome no matter what Gabby looks like :)

Going back a little bit in time, Gabrielle started physical therapy. It took a little time and proding but she is doing fabulous. A big shout out the all the ladies @ Woman's Center for Wellness in Baton Rouge. They have done a wonderful job there. Prior to leaving for Cincinnati we learned that Gabrielle is almost out of visits. Our insurance will only allow 20 visits per year. I called the insurance and found how to do an appeal. I am currently in the process of getting Dr. Alam, Dr. West (Gabby's pediatrician) and Caroline (Gabby's PT) to write appeal letters on why Gabby should continue. She is walking without a walker now. She is still weak but getting stronger everyday. I spoke with Gayla (head of PT) about writing the appeal letter and I asked her if there was anything that they would want me to address while in Cinci. She said that she and Caroline would like to have Gabby in knee splints, just at bedtime. She said the knee splints will help hold her legs straight at night to help stretch and lengthen they muscles in her legs. So while we were in our appointment in Cinci I brought this up to Dr. Alam, he said that he would address it with Dr. Mehlman (her orthopedist) but that he didn't see any problems with sending orders for it. So now I am just waiting for the letters to appeal to insurance and they have up to 30 days to decide whether or not to extend her PT. Prayers needed for that approval please!


On to the next subject... Dr. Alam is leaving Cincinnati! I first heard news of this about a month or two ago. I was devastated! We have become so attached to him over the last 2 years especially with the recent surgery and seeing him everyday for 15 days. I had heard that we has going to Texas Children's in Dallas, Boston Children's or John Hopkins in Baltimore. I was praying and hoping for Texas Children's alas sometimes things don't work out they way you want. I found out right before we left for Cincinnati that he was going to New York Presbyterian Hospital a.k.a Columbia a.k.a Morgan Stanley Children's Hospital. This was they first thing on the agenda to talk about with him during our appointment. Thankfully he brought it up. He said that he had kept New York very hush hush, none of his staff even knew that he was in talks with them. He got them to agree to all kinds of amazing things in his contract. 1) That they would accept medicaid from any state, ANY state! That is amazing. 2) that they will accept all the insurance that he accepted at Cincinnati Children's. 3) that if an insurance refused to pay his doctors fee then the hospital would write off that expense and not pass it on to the patients family. Did I say he was amazing yet? After talking it about it with Bart, we have decided that Dr. Alam is too important to us to leave him now. So we will be following him to Columbia in Manhatten New York. We will have our first appointment with him there next spring for Gabrielle's scope and removal of her bladder polyp. I am nervous about learning yet another children's hospital and how they work but I am confident him and I know that he loves and cares for the kids he treats. You can see it in the way he interacts with them, smiles at them, interacts with us, and his passion for his job and Cloacal Exstrophy. All in all it was a great appointment.

After her we hiked the 4 blocks down to the Cincinnati Zoo and spent the afternoon. We had a great time until we had to hike the 4 blocks back to Ronald McDonald house. Then back up at 4am to fly home Saturday... we were and still are exhausted! As always thank you all for the prayers and continued support. It helps give us the confidence to take on life with beautifully unique and complicated child. I wouldn't trade her for a perfectly healthy child any day she has made me into the woman & momma I am today.

The tab house @ RMH. Built by an Eagle Scout and donated to the house.

Just a swingin' with her daddy.

Gabby sliding on the playground.

Our trip to the zoo. Hanging out with the elephants.

Finally... tube free!

The last few months have been filled with ups and downs for our family and the people that surround us. When the lord bless one there may be trials for another. We had several weeks of trials during our trip to Cincinnati for Gabrielle’s surgery. All in all I believe we came back home a much stronger and united family. I thank the lord every day for the blessings he has bestowed upon me. I have a wonderful husband that has blessed me with two beautiful little girls. Our little Gabrielle is a little more unique than most and teaches us something new about ourselves daily. When you think your patience has been pushed to the brink step back and think about the other things that are really important. My patience is waning right now because Gabrielle still isn’t walking yet. I worry that her muscles are weakening more and more every day. That her joints are stiffening more every day. She was always running, dancing, bouncing, moving in some way that it pains me to see her constantly just sitting on the couch and wanting to be carried everywhere. I know in His on time she will walk again, run again, dance again. I can not wait for that day, I pray it is just around the corner.

Gabrielle and Avery in their matching outfits... aren't they adorable!

We have a birthday party for a family friend this weekend and there will be swimming. I had asked if Gabrielle could swim with her  SP tube. Dr. Alam told me to bring Gabby to have a renal and bladder ultrasound and send him the images and report. So yesterday we brought her to have one… she did good for the most part just a lot of crying after it was over she was fine. Today Dr. Alam reviewed the report and images and said that I could cut and remove the Suprapubic tube. YAY GABBY!!!!  I can’t believe we are finally free of all tubes. After 3 months we are finally FREE of all tubes. Dr. Alam says the whole will be healed in a couple of days and that Gabby will be able to swim Saturday. I’m so excited for her and I believe it will help with the stiffness of her legs. I also believe part of her problem with walking is fear and hopefully with the removal of the SP tube part of that fear will go away. Just since I removed the tube about 30 minutes ago Bart has already gotten her to roll over on her stomach and slide off the couch onto the floor. She has only done that one other time since we have been home. We have a couple of test that Dr. Alam wants us to try with resistance and her legs. I am to report back to him tomorrow and we may see about putting her in physical therapy to help her get her mobility and confidence back.

I have a few additional prayer request this week…

1)      Faeynn and Carter both have the same birth defect that Gabrielle has and have had some complications after their bladder closure surgeries. Please pray for the these precious babies that they will be healed quickly and that the surgeries take this time.

2)      Samuel- has the same birth defect and just had surgery a couple of weeks ago. Prayers for him also to have minimal problems and heals well.

3)      We lost a great friend two weeks ago Friday. He was caught in the explosion at the Williams plant in Geismer. Please pray for the wonderful family he left behind that their hearts will heal with time, that understanding will eventually come to them and that they hold on to their memories of him forever!

Thanks & much love!

S