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

Home Sweet Home

Last Thursday afternoon we arrived back home to Louisiana. It was a great feeling to walk back into our house for the first time in almost 2 months. We are so happy to be home and what a homecoming it has been! We have had visitors almost every day since Thursday hence the reason I haven’t made a post. What a journey we have had over the last 3 months. We have had our newest addition to the family Avery and then just shy of 4 weeks later loaded up and took off to Cincinnati for Gabby’s surgery. It was 7 weeks of ups and downs but our little family pulled through.  Gabrielle has to be one of the strongest little people I have ever encountered. She continues to amaze me daily for the challenges that are put in front of her and she hurdles over them. I thank God each and every day for blessing Bart and I with such an amazing little girl. We also are so thankful for the community that we live in. Without their help this trip and surgery wouldn’t have been possible. We will be forever grateful to you all.

Today we removed Gabrielle’s foley catheter. Now her bladder should empty totally from her urethra. She does still have the supra pubic tube as a backup. The plan for now is to pray that her bladder empties on its own. Every 4 hours I have to uncap her supra pubic tube and see if it drains in additional urine. We are to keep measurements of what drains from there and keep Dr. Alam’s office posted on how her bladder is draining over the next few weeks. Hopefully after a few weeks we will get the all clear to remove the supra pubic tube. We will have an appointment in a few months for some testing. It should be a quick trip, just a few days.  Since being home we haven’t noticed Gabrielle having any bladder spasms so we haven’t had to give her any of the Ditropan, YAY!!! She is still nervous about moving herself very much. She has only taken a few steps while being supported and she wouldn’t completely straighten her legs. She and Bart went and played in her room before bed tonight, he had her scooting herself around to get toys herself so I think that it will only be a matter of time. Bart and I have both started back to work full time. So far so good just a little tired :0).  I will post again next week with another update of how things are going. Thank you all for following us during this leg of Gabby’s journey. Please continue to pray that her bladders empties completely so we can get rid of the supra pubic tube and that she will find the courage and strength to start walking soon! Enjoy a few pictures from our trip home...

Miss Avery

me and my girls hanging out in the backseat

Good ole bear, always there for a snuggle.

This is one of the reasons Cincinnati Children's is where Gabrielle goes. # 3 childrens hospital in the nation... AGAIN!
http://www.wcpo.com/dpp/news/local_news/cincinnati-childrens-hospital-ranks-no-3-in-nation-on-us-news--world-reports-rankings

Louisiana bound baby!!!

This has started out as a very busy day and continued that way. When we got up and going this morning we made a trip across to the hospital to say some final goodbyes. One of favorite nurses, Stacy, had requested that come say goodbye for hitting the road to go home. We had gone to the A3 North floor yesterday and caught some of our other favorites like Kayla and Beth. I just want to take a minute to say what a excellent staff they had A3 North. I don't think Bart and I had a nurse we didn't like, they all were incredible. But just like anything else you have some you get closer to than others especially when you have them multiple times over 15 days. Anyway on with our day after visiting Stacy and few other nurses we went back to RMH to pack the car up. I don't know how we managed to fit what we did in that car but it happened. The sad thing is that we shipped to massive 2 ft X 3 ft boxes home completely crammed with stuff home, LOL! It is amazing what you accumulate over a 7 weeks. Then we had a agreed to do an interview for RMH with Proctor and Gamble. Proctor and Gamble is based in Cincinnati, it is a massive company. If you don't know what P & G makes look on you diapers, shampoo or a cleaning supply and they probably are listed on the back as the manufacturer. They donate all the cleaning supplies and clothes detergent that is used by RMH. We had such a great experience staying a Ronald McDonald we couldn't help but take an hour our of day to help them out on this project, especially if it is going to help them get more funding from P & G. They asked all kinds of questions about Gabrielle, us, what brought us to Cincinnati, how clean was the RMH, etc. We also had to say goodbye to a few families that we had talked to during our stay in RMH. By 10 am we were on the road!! YAY!!!! I can't believe we are headed home.



This is the board at RMH that shows every family, what room, home town & state/country, and whether you are in the building or not. During our stay there were people from Arizona to Syria.



This is the our final time to move our heart from in to out.

 Ronald McDonald house is an amazing place to stay. Bart and I met so many families with children of all ages from newborns having heart surgery to 20 year olds having heart transplants. You become something to each other there. It is like an enlarged family that come home and share your day with, you vent and sometimes you might even cry. The Ronald McDonald house is funded completely on donations from large companies and small alike. Cincinnati RMH has 60 hired employees and 350 volunteers that come in and out through the day to make the day easier for the people that stay there. It is asked that you donate up to $25/day for your family to stay but no one is turned away for not being able to pay. All of their meals are prepared by volunteers and served by volunteers. Cincinnati RMH have all kinds of volunteers people come in to give haircuts, massages, activities for the kids, ice cream socials, snack times, whatever you can think of. I urge you if you are looking for a charity to help this is it. I know most of the people that follow our blog are in Louisiana there is an RMH in New Orleans and I believe there is one in Monroe also. If you don't have the time to voluteer simply donate. Different houses have different needs so make a call and see what they might be in need of at the time it may be diapers it may be toys to give to the children that stay there. Also they cash in the tabs off of aluminum cans so you could start collecting those and drop them off at your local RMH house. I'm sorry to run on about this but it was such an incredible help to us both finacially (40 days at RMH was cheaper than 7 days at a hotel) and mentally. Please think about donating to this wonderful organization.

Our family pic with Ronald himself :) we had been waiting until Gabby had her fixator off.

We made it to just outside of  Birmingham, AL tonight. We would've like to driven the whole way today but the girls where starting to get fussy and it is very cramped in the car with all the stuff. But we are right around 1/2 way home and be back on the road in the morning hopefully by about 7 am.

Thank you everyone that has taken this journey with us through reading this blog. Your kind words, cards and prayers have been appreciated more than you will ever know. We love you all!

Nothing better!

Nothing is better than this moment after 6 weeks of not holding her close. 

It's all over but the ride home

Well today went pretty good, actually better than good it was great! We had a day of P's... pin removal, packing, and Popeye's, lol! The pin removal was quick and we got to keep the parts to her fixator. The scope went well also. The only thing was that the urethra is still healing. So he decided to put a Foley catheter in to let the urethra finish healing. We can remove the Foley catheter in 7 days. She also still has the supra pubic tube. Depending on how well her bladder drains over the next several weeks will depend on when and if we will take out the supra pubic tube. As far as what she can do now, pretty much anything. As long as she has the drain tubes she can't be submerged in water but anything else is fair game. We are doing an interview with P & G (Procter and Gamble) for Ronald McDonald House @ 9 am and then we are getting on the road to head home. To go HOME!!!! Yes that is what I said. Beyond excited at this point ready to get back and see all our friends and family. 

Today is the day!!

Well the day is finally here... Fixator removal day, YAY! We are currently waiting for Gabby to be taken back for anesthesia. The procedure should be simple. She will the pins removed an they will check for infection in the sites. Dr. Mehlman said it should go smoothly. Dr. Alam will be coming in to do a scope of her bladder to check for bladder function and see if it is draining or will drain. He will also be changing out her supra public tube and putting in a new one. The tube will be out safety net in case her bladder stops draining once we get back home. We did notice this morning when we were doing her pin care and cleaning her up that she had urine in her diaper. This is the first time we have had a wet diaper in 6 weeks. Great news!! Dr. Alam had told us not to be surprised if we didn't see any in the diaper. 

Please pray that everything looks good and goes well I will post again after we see her in recovery. 

2 more days!!!!

Well we have a had the normal ups and downs lately. Just Gabrielle acting like a three year old should, basically making Bart and I want to pull our hair out. The usual stuff like temper tantrums. Thankfully she is still healing well from the original surgery that was 5 weeks ago. I can't believe we have been living in Cincinnati for almost 6 weeks. We are so ready to be back home where Gabby can have some normalcy again. She still isn't resting well most nights, waking with fits of screaming for 10 to 20 minutes at a time. Bart, Granny and I still aren't sure what the cause is. We decreased her Ditropan which I do believe was the major part of the problem. Our only other guess is the fact that she is basically what I would describe as a metal cage around her waist. The external fixator sticks out about 6 inches in front of her and about 3 to 4 inches on either side and then add into the equation that she has a tube going up her nose and down her throat. I think I would be miserable too. For the most part she has handled it like a champ. We are nearing the end of this journey here and I know that she can't wait for it to be over. Through it all she still seems beyond excited about her new flat tummy and she tells everyone at RMH that her bladder was made into a ball and put inside. She constantly talks about when she gets the ex-fix off she is going to do...everything!! We spent this morning at mass, ate lunch at Joe's Crab Shack (a nice change from hot dogs and hamburgers) and now are at Barnes and Noble picking Gabby up some new books.

I want to take a moment and ask you to pray for a couple from Tennessee we met last night at RMH last night. They have 9 children between the 2 of them. The last two were just born last week, twin boys. One was born with imperforate anus (one of Gabby's birth defects) they didn't know he was going to have anything wrong with him. The other was born with what I believe they said was a heart defect called TTSD. The first has already had surgery and the second will be having the first of many surgeries coming up. They are here by themselves all of their other children are at home in Tennessee. Please pray that their sweet baby boys come through their surgeries fine and that they are able to head back home soon. 

Counting down the days until ex-fix removal.... ONLY 2 LEFT!!!! 

Thank you to everyone for your continued prayers and support. I don't think we would have made it through our journey without you all!