Westward to new destinations… El Paso

Finally, we have been reunited with Dr. Alam… 4 years of not seeing him in person is a long time. If you have a medically challenged child you know what comfort a specialist doctor can bring. Today at the hospital has only reinforced that. For those of you who are new to our blog Gabby’s birth defect is truly unique. Numerically OEIS kids only occur 1 in every 400,000 live births. It occurs in 1 in every 200,000 pregnancies meaning that half of all OEIS babies either pass from complications in vitro or are terminated. When Gabby was born we approached a surgical team in Baton Rouge regarding her surgical needs but were told that they could not handle the complicated case. In New Orleans, they took care of the initial surgery but we were told again that the medical team wasn’t the best choice for her care. The suggested that go to Boston Children’s (Dr. Gearheart- urologist extraordinaire), Houston Children’s (for the close proximity to home) or Cincinnati Children’s (Dr. Peña- the famous Dr. that created a whole medical procedure called PSARP). We chose to go to Cincinnati. There Dr. Peña selected Dr. Alam, from a team of several urologist, to be the urologist to be part of the process for determining how to proceed with Gabby’s case. He was apart of Gabby’s 2nd surgery around 18 months old and then when Dr. Peña stepped away because Gabby wasn’t eligible for PSARP, Dr. Alam became the head of almost all aspects of her care. From that very first meeting in Cincinnati there has been a steady and ongoing comfort in him being part of our lives. He is extremely cautious and knows that each case is so unique that there is no cookie cutter way of repairing these children. I have no idea that what drove Dr. Alam to specialize in OEIS, there are only a few physicians in the nation that are knowledgeable enough to take care of these children. The rarity of what she was born with was made evident today as a team of hospital pediatricians and residents came through making rounds on the made the comment that since Dr. Alam has joined the team at El Paso Childrens that they are seeing all kinds of urological cases that they have never encountered in their careers. All of the support staff keeps asking why we would travel from south Louisiana to a very small hospital in  west Texas for a surgery… all Bart and I can say is if you knew Dr. Alam it would make perfect since to travel a collective 15,000+ miles from Cincinnati, New York City, Charleston and now El Paso. 

It has been 4 years since the last surgery Dr. Alam performed on her and “set himself up” for upcoming surgeries. While I will not share the specifics of this surgery half of his plan failed and he is truly frustrated by this. Today ended up being more exploratory that anything else and the drain that she had placed in May that was supposed to be removed unfortunately is coming back home with us for at least another 4 to 12 weeks depending on our schedules. He did make an adjustment to the drain and then took an excessive amount of images via scope and X-ray so that he can formulate a plan of attack to rid Gabby of the drain in the aforementioned timeline. So what started in May with a plan of possibly 3 procedures over the rest of the year may now stretch to 4 procedures stretching into next summer. Not exactly the news and timeline any of us wanted. I just have to have faith that this timeline is all in god’s plan

and that it is what will work best for Gabby. After todays procedure they pediatric staff noticed that she was becoming more pale as the day went on. They drew labs and it was discovered that Gabby’s MCV level was dangerously low and the decision was made to give her a blood transfusion which is happening currently as I type. It took a bit to get started because it true Gabby fashion she has one of the most unique blood types, AB+ and they didn’t have the blood type at the hospital so it had to be requested from the blood bank. Pending all goes well with the transfusion and that she is up and moving in the morning hopefully when should be headed home by Sunday. Fingers Crossed!! 

Don't walk through life, staring down at your feet.

WARNING: If you don't like pictures of feet or foot injuries beware that this blog entry contains both.

 “And forget not that the earth delights to feel your bare feet and the winds long to play with your hair” ― Khalil Gibran, The Prophet 

Gabby all dressed and ready for cheer practice

 I do not remember exactly when I came across this quote, but it has always embodied what it means to be a child to me. When I read it, I visualize my girls running barefoot and hair down, wild, crazy, and free from all the worlds worries. You can ask my mom and dad, I grew up barefoot, running up and down the country roads of D ’Arbonne, La. Even today I hardly ever wear shoes unless I absolutely must and if comfortable enough in the situation, I will readily kick a pair off when the opportunity rises. It never occurred to me to me how precious feet are at that young age. When Gabby was delivered into my life 11 years ago, we learned just how precious the gift of walking is and that we should never take that gift for granted. Gabby’s feet have always been a concern but unfortunately when born there were many many concerns and her feet… well, they would just have to wait, and for 11 years they have. We have an excellent team that helps us with Gabby at Lake Elementary where she attends school and on that team is a PT named Sue Lynn. She is always encouraging and makes sure that Gabby’s physical well being is always watched over. She encouraged me to look into PT for Gabby while she is out of school this summer. This landed us at Bourgeois Physical Therapy here in Prairieville. Once there, it was explained to us that Gabby has 2 pressure ulcers that have opened and started draining on the outside of her left foot. The therapist was concerned enough that he took it upon himself to call her pediatricians office and get Gabby seen right away. She did have a staph infection in the wound and has since completed antibiotic therapy, but we have also followed up with wound care last week at Baton Rouge General. We will see them again this week for another follow up to make sure that the wounds continue to heal properly. While there the PA that attended to Gabby told us that she could treat the pressure ulcers but until her feet had been thoroughly examined by a specialist that it was a moot point. Unless something is done to correct Gabby’s feet the pressure ulcers would persist throughout her lifetime. Bart and I have known for a few years now that Gabby’s feet are completely different sizes. This is due to Gabby’s left foot being more drawn up than her right. We brought up to an ortho that she saw in Cincinnati back in 2013 but he saw no reason for concern. I then started bringing it up to her ortho at Children’s New Orleans in 2019. He seemed more concerned at the time that she may start to develop scoliosis due to her tethered cord which brought the result of having a detethering surgery in February of this year. He told us that the detethering surgery could possibly relax the foot due to some crossed up nerve signals but here we are 4 ½ months later and her feet still look the same. The wound care PA suggested that we see an ortho that specializes in feet and ankle deformities. Today, that recommendation landed our family in the office of Dr. Brian Perry at BR Ortho. They took x rays of her left foot because that is the one of major concern now. From that x ray he diagnosed her with a new birth defect, like 4 wasn’t enough, called Cavus Foot or basically an extremely exaggerated high arch. Due to the extreme arch of her foot, it can not rest properly on the bottom of her foot like ours do. This causes her to walk on the side of her foot. The pressure ulcers have developed due to her foot trying to form calluses to help give her padding when she walks, almost like a defense mechanisms to protect her foot. He explained that he could do some incredible sounding things, moving tendons from one side of the foot to the other, lengthening her Achilles tendon to help her with her walking and balance. But he said that he wants us to get a 3rd opinion from another pediatric ortho on his team at BR ortho, Dr. Brad Cullota. He feels like she could possibly need surgery in her left knee also because he thinks her left leg is shorter than her right leg due to tightness in the ligaments and tendons in that knee. Since he specializes in feet/ankles he wants to get the opinion of Dr. Cullota on the knee. We did speak briefly regarding her right foot also. He said that he said without an x ray of the right foot he could guess that she has what is called a flat foot deformity in the right foot. Basically, this is the complete and total opposite deformity of her left foot. We will be seeing Dr. Cullota on 7/26, a longer wait than I was hoping for but unfortunately Dr. Cullota is in high demand in the Baton Rouge area. Bart and I sat down with Gabby after the appointment and asked her how she felt about the possibility of some more surgeries and the potential outcome of those. She told us that of course another surgery does not sound like a fun time at all but if it will help her have better balance and movement then she is ready for it, especially if she could potentially run faster than her sister! During the appointment yesterday Dr. Perry made sure to let Gabby know that even though he was talking to her parents that he wanted her to feel comfortable and understand what she may have coming up in the future. Bart and I have always been very transparent with Gabby about all the stages of her surgeries and what they will intel and what her life will potentially look like afterward. So here we are at the cusp of another surgery… we will keep you posted on the developments of that as they happen. 

pressure ulcers on Gabby's left foot.

A picture of Gabby's feet together

Gabby's left foot, notice her heel never touches the ground

Gabby's right foot, this one never bends except at the ankle joint

 As far as life is going other than with her feet. We are currently waiting on some bloodwork to come back that was order by her urologist. Once we have that we will see about when we need to schedule our next trip to Charleston, SC. Her pediatrician has been watching her iron, Gabby like me stays anemic all the time. Also like me she hates taking her iron supplement, but we are trying to do better because if she does not then they want her start seeing a hematologist. She had a hematologist for the first year of her life but has not seen one since 2014. Her pediatrician is also pushing for her to start seeing a nutritionist to help teach us how to supplement Gabby’s diet to help her gain weight. We have seen nutritionist at every hospital Gabby has had surgery at and we have yet to find a method that works for Gabby. Fun things that have been happening is great times this summer with family and friends that feel like family. Swimming every day that she and Avery can when it isn’t raining! Cheer practices and lots of time being a couch potato. Just being a typically little sassy little preteen girl. Bart and I are enjoying every minute of these girls growing up in front of our eyes.

The title of todays blog entry came from the quote below. I think it is very fitting for Gabby's journey through life. Although she knows with every fiber of her being that she is different, she tries her absolute best to not let it hold her back from enjoying the world around her. 

Don't walk through life, staring down at your feet. Be proud of who you are, Dare to be unique.

- Anonymous

A first time for everything

Good morning everyone! I know I was supposed to type this last night but wellll that didn’t happen. So Gabby’s official diagnosis is Pyelonephritis, fancy word for kidney infection. Before this she has always had a standard bladder infection. This is our first time being hospitalized and it not be for a surgery. This also her first time with a kidney infection. Bart and I think we have figured out a timeline of how everything happened. Mar 8- follow up with Dr. Volk for her spinal surgery, fever was discovered. He instructed us to see her pediatrician. That afternoon we saw Dr. West and Gabby was tested for viral panel including COVID and a urine sample was taken. Everything was negative but all signs were pointing to a UTI so we decided to culture the urine and start antibiotics that worked in the past. Mar 9-10- symptoms continue. Mar 11- cultures show no growth. Still running fever and having headaches. Mar 12- follow up with Dr. West before the weekend. Fever and headache persist. Decision made to finish antibiotic therapy. Mar 13-14- fever gradually climbs, headaches continue and she starts with being more tired each day. Mar 15- go to Woman’s and get renal ultrasound and bloodwork. Mar 16- symptoms persist. Mar 17- wakes up with 102 fever, her highest yet. Around 10am has a vomiting episode. We can’t get into pediatrician until 240pm so I call her urologist in Charleston. He makes the call for us to bring her to the ER. We decide to bring her Childrens in New Orleans so that Dr. Volk can be able to check her out also for any possible surgery complications. The ER doctor makes decision to test for full viral panel including COVID, blood work plus blood culture, urine sample plus urine culture, blood gas, EKG, and lung X-ray. Everything looks perfect except the urine sample. Gabby is admitted to the hospital and started on IV antibiotics called Zosyn. Mar 18-today- several rounds of Zosyn, fever is gone and the headache has become much less frequent. The attending physician just stopped by and said that the only culture that has grown is a type of staph. They are currently testing antibiotics for sensitivity and hopefully we should know what will treat it by this afternoon. Talking between ourselves and yesterday with Dr. West and texting some with her urologist, Dr.Alam this is what we think happened. Bacteria was somehow introduced to her bladder the week prior to March 8th. Due the cathing this can be very common. When we went to her follow up with Volk the fever was discovered as it had just started. When we went to Dr. West that afternoon, we were to fast, the bacteria was there but so new it wasn’t strong enough to grow cultures. Started antibiotics causing suppression but since it was the right antibiotic it didn’t kill the bug. Bacteria continues to grow bringing with it increased fever, headaches and her final symptom vomiting... the trifecta for UTI symptoms. It took just shy of 10 days to figure out what was wrong. It was no fault of anyone. Bart and I knew something was wrong and to keep pushing for the answer. Her pediatrician was doing everything in her power to help us find the answer. Labs are running behind due to being over run with COVID test so that kept delaying our local blood test results... each time it took 3-4 days to get results. The ER doctor took in everything we told her and ran with it. Gabby is definitely feeling better, just bored of being in the hospital. Thank you to everyone that has been praying for Gabrielle. You have all proven time and time again that prayer is the ultimate answer.

Headaches are such a pain!

Just a quick little update into the happenings lately with Gabrielle. We went last Thursday to New Orleans and she was put under for a quick sutcher removal. Dr. Volk said everything was looking and healing up great. She has been complaining of headaches off and on since the surgery was performed on 2/11. Gabby has never been one to complain of headaches unless she was having a bout of sinus/allergies. Saturday we got out of the house for a while and she did exert herself much more than she has in weeks. Saturday evening she said that her head hurt much worse than it had been. Saturday evening and all day Sunday she stayed with a headache even after alternate dosing of Tylenol and Advil and also adding in Dimetapp. She spent much of the day just laying around sleeping and watching tv. We went this morning and followed up with Dr. Volk, her neurosurgeon. When she was having her typical stuff done like weight, height, temp; it was found that she was running a fever of 100.4. She had not ran a fever over the weekend so this was a new symptom. Once we saw Dr. Volk, Bart and I expressed our concerns to him of the headaches being linked to a possible CSF (Cerebrospinal Spinal Fluid) leak. He explained to us that being she is just days away from being a month out of from surgery that he really doubts that she would develop a leak this late. He stated that her incision is healing beautifully. Dr. Volk said that usually at this period of healing if a CSF leak occurs there will be a pocket of fluid that develops on the incision line. Currently, there is no such area. He suggested that we follow up with her pediatrician due to the fever and headaches. Before we even left his office I called Dr. West to get an appointment for Gabby this afternoon. Our next suspected cause of the headache and fever was a bladder infection. Gabby's usual symptoms for bladder infection are fever, headache and nausea. Bart brought her and they drew a urine sample which currently is not showing any sign of infection. We have decided to culture the sample but go ahead and start antibiotics until we receive the culture results back on Wednesday afternoon. In addition to the urine culture, Dr. West also suggested doing a viral panel swab to test her for all of the kinds of flu, RSV and other common viruses. Hopefully, by Wednesday evening we will have some answers as to why our sweet girl is having these headaches. We will update once we have some answers.

Some good news is that she can go back to school in person once we figure out what is going on and her fever is gone! She is so excited to be back at school with her friends!

Processing Prevention over Plans

Another surgery has come and gone. Gabby is in a room and doing pretty good. She of course is in pain but is on Tylenol, Morphine, Toradol and Valium to help curb the pain. This surgery was called a lumbar laminectomy fancy words for detethering the spine. Bart and I had so many reservations going into this surgery. One going back to hospital that we left 10 years ago. Secondly, Gabby having a surgery in which Dr. Alam wasn’t performing or had a hand in personally selecting the other surgeons. Third and probably biggest, the possible formidable outcomes. The surgery was predicted to be 2-4 hours but turned into about 5 to 5 1/2 hours. While it makes for a long day I like to think that means that the surgical team took extra caution due to the difficulty of her diagnosis. Once we met with Dr. Volk we soon found out that indeed was the case. Apparently, tethered cords present many difficulties due to the way the spine forms and in Gabby’s case closed. The layers that envelop the spine are typically in a certain order but in Gab’s case they were kind of folded up. Dr. Volk said it took about 1 hour just to “open” her up and then 1 hour to try to do his best job and closing up a layer that in his description was like trying to stitch tissue paper closed tightly. This will be our special request prayers... 1) that she heals properly and quickly 2) that she is able to have patience as she is required to lay completely flat with no pillows or bed elevation for at least 48 hours 3) that she does not develop a spinal fluid leak. Number 3 may be the very most important. If she develops a leak they will have perform another procedure and put in a type lumbar drain. Dr. Volk says that she will not tolerate that type of drain well because of her age and having to stay in the bed even longer. Now moving forward to the title of this blog... Processing Prevention over Plans. Bart and I had a lot to process once talking to Dr. Volk after the surgery. As far as the presented “planned” results and the actual expected results of the surgery. We went into this surgery thinking this will help her feet relax back to more comfortable position. We are now being told that this may not be the case. Instead we should concentrate on the hope that this surgery will prevent her feet from getting worse than they already are. This was a huge disappointment, especially for myself. I was the one that went to all of the appointments prior to surgery and then relaying information to Bart. I feel like I did not listen good enough, ask the correct questions and then failed to communicate the information to Bart correctly. This is tough to swallow for me. If you know me well then you know I’m absolutely my own worst critic and have been beating myself up over whether I have made the correct decision in the best interest of Gabby and her future.Bart and I have come to the conclusion that the detethering surgery was unavoidable. It most definitely will help prevent the almost inevitable occurrence of scoliosis in the future. Also, we will pray that she will proves us all wrong as that her feet will correct even if it’s the tiniest bit. She is the most determined and hard headed little girl I know and she wakes up everyday and faces most any challenge head on. Bart and I want to thank you all for praying for all of us today and in the days to come. We can never repay our family and friends for the support that we receive not only in our major times of need but also daily.

Here we are again...

 Sorry… I know it has been a minute since we have last updated Gabrielle’s blog. In a way it is something to be very thankful. No news, is good news, right? Gabby has been doing very well since I last updated you all. She has been doing great in 5^th grade. Lately, she has competed in a few cooking contests for 4H in which she has placed in each event she has entered. We are so very proud of her!

Gabby this past Christmas

Over the last 12 months Gabrielle has experience quite the growth spurt. While this is wonderful news being, she is so petite, it does also have the potential to cause problems in a child with Gabby’s condition. If you are just reading our blog for the first time, I will take a moment to quickly update you on Gabrielle’s birth defect and what it pertains to. Gabby was born with a birth anomaly called OEIS. This affects 4 major areas of her body. O- omphalocele- the abdominal wall does not complete the closure correctly to protect the internal abdominal organs. She had 2 surgeries (first- 2010 and second-2012) to repair this abdominal wall opening. E- exstrophy of the bladder- the bladder is typically on the outside of the body, split in half with the inside of the bladder facing outside of the body. She has had 3 operations on her bladder to get her to the point she is today (first- 2010, third- 2013, and her most recent 2018). I- imperforate anus- unfortunately currently for Gabrielle’s case this is not able to be corrected, so since she was 3 days old, she has had a colostomy bag. S- spina bifida- this what we are here to update you on today.

Gabrielle has a very mild form of spina bifida called a Lipomyelomeningocele. The following is a description of what that entails found on the Columbia.edu website from New York City, NY one of the hospitals that Gabrielle has seen physicians in her 10 years. 

Lipo = fat
Myelo = the nerves of the spinal cord
Meningo = the meninges, or membranes (coverings) around the spinal cord
Cele = a swelling

Lipomyelomeningocele is a condition in which an abnormal growth of fat attaches to the spinal cord and its membranes.

Lipomyelomeningocele arises from an event very early in an embryo’s development. About the third week after conception, a sheet of cells called the neural plate folds to form a tube called the neural tube. The top of the neural tube becomes the brain, and the rest of the tube becomes the spinal cord. Lipomyelomeningocele occurs when an error in the closure of the neural tube allows a type of cell called mesenchyme to contact the inside of the neural tube. These cells prevent the tube from closing properly, disrupting the formation of meninges (membranes, or coverings) and bones around the spinal cord.

Wherever the mesenchymal cells touch the outside of the neural tube, they develop into spinal meninges as usual. Everywhere else, they develop into fat cells. The end result is a fatty growth called a lipoma that begins in or near the spinal cord, connects with the meninges, and extends past the bones of the spinal canal to form a pad of fat beneath the skin.

Normally, the spinal cord is able to move somewhat freely within the spinal canal. But in lipomyelomeningocele, the cord’s movement is restricted by the lipoma’s connection with the meninges and the area outside the spinal canal. This condition is called a tethered spinal cord, and it may have severe consequences.

Lipomyelomeningocele is one type of spinal dysraphism. It may be associated with other forms of dysraphism, dermoid or epidermoid cysts or Chiari malformation.

This past November we started really pursuing seeing a neurosurgeon after continuing to see a decline in her balance and her steadily getting worse. She had a sedated MRI at Childrens New Orleans and they discovered that her syrinx (a fluid pocket on her spine) had grown since her last MRI. Over the last year due to her growth spurt she has developed a fluid pocket along her spine in the lumbar section. This fluid is putting pressure not only directly on her spine in that spot but also adding additional pressure to her tethered cord. The neurosurgeon we have met with in New Orleans think that this is causing problems with her balance and with her feet. Gabrielle’s feet have always been slightly misshapen which is not uncommon, sometimes children born with OEIS will also have other issues such as club feet. Thankfully in Gabby’s case her feet are not clubbed however they are missing muscle tone and the flexibility that you and I have in our feet. The neurosurgeon believes that the excessive pulling her on her spine is sending the wrong message to her brain, which is turn sending the wrong message to her feet. Due to the miscommunication her feet are starting to turn and draw up causing her balance to be much worse and making getting around harder. She must exert much more effort than the average person to get herself from one place to the next. After talking to the neurosurgeon and consulting with an orthopedic surgeon we have decided that her next step is spinal surgery. This is the one surgery that Bart and I have tried to avoid her having for the last 10 years. The very first neurosurgeon from New Orleans was extremely pushy about having Gabby detethered by the time she was 18 months old. By the time Gabby was 2 we had made the move to Cincinnati Children’s and their philosophy on detethering children like Gabby was much more relaxed and not as rushed. Dr. Volk, her new neurosurgeon, explained to me that American medicine tends to want to do things very fast and early whereas Eastern medicine tends to take things slower and stage things out as a matter of importance. Basically, do not treat until a problem presents itself. He has stressed to me that is perfectly fine that we have chosen to wait for Gabby to have this surgery. As of right now Gabrielle is scheduled to have surgery on 2/11/2021 in New Orleans. We are hoping to be home in 4-7 days and then she will stay home from school and hopefully be able to attend virtually for 2 to 3 weeks and then return to her regular life. 

Gabby waiting to have her MRI done @ Childrens New Orleans

 

Please continue to pray for Gabby and our family. This has not been an easy decision for Bart and me to make. We have made sure to keep Gabby herself informed every step of the process because we feel that this is very important as she is starting to get older. Avery is struggling with accepting her sister have yet another surgery. I’m not sure that I even know what to qualify as a surgery really to give you a count on how many she has had. In my mind a surgery is qualified by being put under anesthesia and having a procedure done. IF that is the case then her surgeries are as follows.

 

First- 3 days old @ New Orleans Childrens (colostomy placement, omphalocele closure)

Second- 2 years old @ Cincinnati Childrens (omphalocele repair and colostomy revision)

Third- 3 years old @ Cincinnati Childrens (bladder revision & double hip osteotomy)

Fourth- 3 years old @ Cincinnati Childrens (removal of external fixature/drainage tubes)

Fifth- 8 years old @ MUSC Charleston, SC (mitrofanoff surgery)

Sixth- 8 years old @ MUSC Charleston, SC (exploratory & drainage removal)

 

This spinal surgery will be her 7^th major surgery in just shy of 11 years. It does sound like a lot but really the realm of where we live our life comparatively against other OEIS families that is very minimal. I can tell you something; she has gone through more than any child should. She is special, unique and I would not change a single thing that I do not medically need to for her to strive to become the young lady she is turning into. She is the bravest person I know, and I am so beyond blessed to her mama. 

This was our most recent trip to Farmerville to visit family for Christmas.

Dreams do come true...

Recently, our family was connected to a wonderful organization called Dreams Come True of Louisiana. Bart and I have had a small link to the organization for a few years now because we cook in the jambalaya competition at the South Louisiana Crawfish Festival. However, never did we think that our relationship with the organization would expand further than that. You just never realize when you meet people what those relationships may hold. Years ago Bart and I became friends with Ms. Shelby and her granddaughter Cassidy. We have remained friends with them over the years and they have followed Gabby’s journey as we have followed Cassidy’s all these years. Shelby and Cassidy have been affiliated with DCT for many years and this year they introduced our family to Mrs. Freddye and the DCT organization. We can not begin to express our gratefulness for this introduction. Dreams Come True gifted Gabrielle and our family with a dream vacation. Gabrielle’s dream vacation was to stay at a Great Wolf Lodge and she wanted to see real snow. The ladies at DCT got right to work and planned us a vacation to Great Wolf Lodge in Colorado Springs, Co. We took our trip last week from Wednesday to Sunday.         This is our first true family vacation EVER! If you have followed Gabby’s story over the years then you know we take trips out of town for her to see a urological specialist. These trips have taken our family from Cincinnati to New York City to Charleston. We always try to make the best of these trips with visiting local attractions, zoos, baseball games, and family. But regardless of what you do while you are in that city, there is always a surgery, a MRI or a follow up appointment scheduled and lots and lots of time is waiting rooms to dampen the spirit of the trip. This Dreams Come True trip was so far from our past trips. We had almost a full 5 days of nothing but snow, swimming and fun!

 

Our family want to say THANK YOU from the bottom of our hearts to the Dreams Come True organization for a wonderful trip. Gabby and Avery loved every minute of it. When I asked last night what their favorite part was, they listed off almost every thing we did… the water park, mini golf, the arcade, the SNOW; the list goes on and on! If you are ever looking to support and donate to a local organization please consider Dreams Come True. They have gifted our little girls with something that Bart and myself have been trying to accomplish for years… a few days of joy that didn’t revolve around Gabby’s birth condition. We look forward to many more fun times with this organization.

 

We also want to thank Ms. Shelby and Cassidy again for thinking of our family and helping make this connection.  

 

A person’s a person, no matter how small

When Gabby was born there were so many worries. In my mind one of the biggest was would she ever walk. It took her longer than the average baby to start walking but eventually in the tiny kitchen of the tiny trailer we lived in she took her first steps. I remember staying so quiet not wanting to startle her, she was around 19 months old. This story comes to mind today because it’s World Spina Bifida day. October 25th has been designated to bring awareness to this birth defect. Some people look at me like I’m crazy when I tell them Gabby has spina bifida. Most people assume that all people born when SB are wheelchair bound. I read earlier today that SB is sometimes called the snowflake disease because it comes in so many different varieties. Gabby was born with a closed spina bifida defect that they call a tethered cord. Her tethered cord can cause numerous problems from headaches to abnormal gait to urinary incontinence. Gabrielle suffers from all of those symptoms. Dr. Alam has given us permission to bring Gabby to a local neurologist. She hasn’t seen neurologist since before she started walking. It’s strange my biggest worry when pregnant with her turned into my least worry as the years have passed. Currently, I have her scheduled for an appointment in January. Gabby has been having a few headaches and her feet are starting to turn and give her more trouble when walking. I’m anxious for this appointment and to learn more about this part of her birth defect. Gabby has so much determination when she decides to put her mind to it she can accomplish it. Her confidence needs some building, that we are working on. 

Gabby has continued to heal beautifully since her surgery this summer. She is handling the cathetering well. She has jumped right back into school making honor roll her first 9 weeks of 4th grade and joining both 4H and Beta club. Girl Scouts is back in full swing and our social calendar stays full all the time. We are so blessed to have Gabby in our life. She teaches our family so much on a daily basis. Tolerance, strength, acceptance, sensitivity and list grows by the day. The picture below is Gabby and two of her best friends after their honor roll assembly today. I’m so thankful her group of friends that she has made over the last year. It definitely has helped with her self confidence having them on her side.            

5016 miles later.. and worth every mile!

Hey everyone! I'm sorry that I've just gotten around to writing this blog post. It has been a crazy busy week of work and school. Why not throw a trip to South Carolina in the mix? Because apparently we are crazy! We left around 3 am on Tuesday morning and got home around midnight on Wednesday night, then went to work and school the next day. I don't recommend you do that. But hey, here we are and we survived! Total this summer we have traveled 5016 miles back and forth from St. Amant to Charleston. Every mile has been worth it!

Peace out MUSC (at least for the year!)

Gabby had a blood draw, renal ultrasound and urodynamic study done Wednesday morning. The urodynamic study was a new test for us. Gabby was very worried about it because she had never had one, turns out it wasn't very bad at all. They took us in a surgical room filled with an x-ray machine and table, lots of computer screens and some type of automated pump. The basically put a catheter in her mittrofanoff and also one in her colostomy stoma. The catheter in her mitt is hooked up to the automated pump that pumped what I assume is saline (forgive me I didn't ask) into her bladder. While the machine is pumping the nurse watches several computers reading how much volume is being pumped and at what rate it is going in. Dr. Alam had his own computer that he was watching. The x-ray was mobile and positioned above and below Gabby while she was being entertained by a sweet child life specialist. Every 5 minutes or so Dr. Alam would call out x-ray and a new image would pop up on another computer screen with an image of Gabby's bladder that Dr. Alam and Dr. Hyler (one of the urology fellows) would look at. This went on for around an 45 minutes or so. Eventually, her bladder reached an amount of 180 cc. The purpose for this test was for a few reasons. 1) to check how much her bladder can hold 2) how big her bladder is. 3) to make sure that her bladder didn't have any leaks. It was extremely laid back the whole time. We talked about Gabby and our home routine along with talking about how ridiculous and Top Gun sequel is at this point in Tom Cruise's life. :) Once the study was over he removed the supra pubic drain and said that the hole left should be gone in a day or two. After that she had her ultrasound and then blood drawn. Once we finished up there we headed upstairs to meet with Dr. Alam and then a nutritionist. During our meeting with him, he kept going on and on about how happy he was with the results of Gabby's surgery. He said pending in complications we won't have to go to Charleston until next summer for a follow up that will probably include another urodynamic study and possibly a cystoscopy of her bladder. We are to continue cathing her every 3 to 4 hours along with continuing her nightly Gentamicin antibiotic bladder flushes to help keep her bladder healthy and keep infections away.

While we were there I did take the opportunity to ask him about kidney disease. I have a private facebook group that I read almost weekly about different kids and their problems with kidney disease. After reading about it so frequently, I had to ask Dr. Alam why the subject has never come up with Gabby in the last 9 years. From his opinion in Gabby's case she has been very fortunate not to develop kidney disease as of yet. Kidney disease can develop due to many reasons but in most of these OEIS kids it tends to be because of reflux of urine back into the kidneys causing chronic infections. While Gabby does carry streptococcus bacteria in bladder all the time using the Gentamicin keeps it from overgrowing into her kidneys. We are also going to add a probiotic to help keep it at bay also. This doesn't mean that she can't develop kidney disease in the future but as long as we keep on the same path and stay vigilant it should definitely help prevent the development of kidney disease for a while at least.

Dr. Alam also had us meet with a nutritionist. Gabby's weight has been a concern for quite sometime now... well at least the last 6 years. When she was hospitalized for surgery in 2013 they tried doing NG feeds with Pediasure and Pedialyte but unfortunately her little belly just couldn't handle it. She would sit hooked up a machine for hours only to vomit it all up, we weren't getting anywhere. I did really enjoy talking to this nutritionist. She definitely understood that kids on the general don't have the best diets and gave us some tips that we can try at home. She also wants to add daily multivitamin, vitamin D, fish oil and multi mineral complex to Gabby's daily list of things to take. It sounds like a lot but if it will help her not have to do NG feeds I'm totally game.

We will have do to do ultrasounds through out the next year but those can be done locally and then the images will be sent to Dr. Alam to review. The biggest and most exciting news that Gabby received was that she could go swimming whenever she is ready!

Home sweet home

Home sweet home, Room 733

Good afternoon everyone! We are back in Charleston this week for a few things. 

1) cystoscope 

2) drain tube removal from mitrofanoff 

3) Suprapubic tube replacement 

4) mitrofanoff catheter training

After getting a good dose of meds to help her relax the morning progressed pretty quickly.  

Daddy got to put on his fancy moon suit so he could escort her to the OR while stayed I behind with little sister. After that we went to catch a quick breakfast downstairs and came back up to wait in the waiting room. As we exited the elevatorDr. Alam was standing there typing a text to me to find us, he was done? We couldn’t have been gone more than 30 minutes. He had pictures of her mitt stoma and bladder. He said he was ableto easily see that her bladder augmentation and mitrofanoff are healing really good. Dr. Alam came into the PACU after the procedure to teach mehow to catheter Gabby via her mitt stoma. I’ve been catching her for over a year now but this is definitely different. So far it doesn’t seem to cause her any actual pain or discomfort. I think she just doesn’t enjoy having a tube stuck in her every 2 hours. The time span will increase with time as her bladder stretches. The goal time period isgoing to be every 3-4 hours. Gabby and I will getto stay tonight at the hospital. We should check out in the morning. We will stay in Charleston another night and then have an office visit on Wednesday morning at 9am. Pending no issues we will head back to Louisiana after the appointment and get home late Wednesday night. Then it will be Granny D’s turn to train on cathing. 

We will follow up again in 8-12 weeks. That trip should be a pretty quick one. I think I remember him saying come in Monday go home Tuesday. We will have one more follow up before the end of the year for a urodynamic study. He said that weput a camera in both her colostomy stoma and mitt stoma. This will give the urology team the ability to watch how her bladder holds and releases urine over a period of time. He told us that she will be awake during that procedure. 

We also discussed her spinal defect and her footdrawing up further over the last couple of years. He gave us permission to see a neurologist and orthopedic surgeon at home. He said he is comfortable with other surgeons operating as long asthey aren’t touching her abdominal area and are in complete communication with him. We have come too far for someone else to stumble in and mess everything up. As far as her next surgery with him, well, that all depends on her, her growth and when she really hits puberty. From the sound of things we should be able to go a few years without a surgery on her abdominal area. Praise God!!! 

Again, Bart and I will never be able to express our thanks for all of the support and prayers. Without your support she would not be as far along as she is today. 

The final days

Good morning everyone! After my frustrated post the other day, I really did feel worried that this trip was about to be longer than hoped. Dr. Alam is always extremely cautious. Don’t get me wrong that is appreciated. I mean would you want to operate for 12 hours and then rush the recovery along just to have something go horribly wrong. No, probably not. Apparently, it was discovered during the surgery that Gabby has a large amount of scar tissue that had attached itself to her gallbladder. I believe Dr.Alam told me that a piece of bowel was were the scar tissue originated from. He spent a good amount of time during surgery dissecting the scar tissue to separate the bowel from the gallbladder. Once the surgery was completed one of the worries with giving her fluids or food orally was that the bowel would get overly heavy in one area and cause it to invert and twist. If that were to happen it could be disastrous With possibility of an emergency surgery. So, that was the reason for waiting the extra few days for the bowel to wake and strengthen. When you are in the moment though it is hard listening to your baby cry that their throat hurts and they are hungry. Since that day... she has gotten to drink and then about 12 hours after that food came. Her first pick... PIZZA! 

Since then she has been eating and drinking small amounts. The food is important but not as much as drinking. Her drinking does need to increase but hopefully it won’t hinder us from getting out. I was fully expecting to be in the hospital another 2-3 days but Dr. Alam says that we can be allowed to check out on Sunday... like tomorrow!! We will go back to the hotel and hangout a day or so. She is already scheduled for a follow up appointment at the clinic on Tuesday afternoon. From what we are understanding as long as everything goes well at the appointment then can head home. HOME!! By the time we arrive home Gabby and I will have been gone right at 20 days. She will be coming home with 2 large drains from her new mitrofanoff and her bladder. Bart and I have been trained on how to flush them 2 times daily plus clean the drain sites and the tubes. There will be limitations on what she will be allowed to do the remainder of the summer but we are going to try to make the best of it. We will come back for 3-5 days at the end of July to have the drains pulled and be trained on how to catheter her the new way. Thank you to everyone that has followed us along this journey and all of the others up till now. Keep the prayers coming for us to get out of here and headed home and for no complications while at home the rest of the summer. 

Bekah and Michelle

Every time we are in the hospital for these surgeries I feel like there is always that one person, usually a nurse, that you connect with. This trip it was nurse Bekah. Don’t get me wrong we haven’t had a nurse here on any unit that we have a minutes trouble out of. Margot, Lindsay, Megan, Heather, Karen, Madison, Natalie, Katie, those are just the ones we have had in this 7A unit. They have allbeen absolutely wonderful. Bekah, is different though. Every time we had her things were just... easy going. We didn’t have worry about anything and she was one Gabrielle’s biggest cheerleaders. She has also been a wonderful advocate between us and the urology team pushing for us at different times and situations. I think what really did it in though was when I realized how much Gabby connected with her. Yesterday, Friday, was her last day on for a few days. After she gave report to our night nurse she came by the room to wish us well. She gave both Gabby and I hugs and tried as she had everyday before to get Gabby to give her a high 5 or dap. Gabby finally gave her a high 5 last night. After Bekah left Gabby fell apart.... crying. I’ll be honest I shed a few tears myself. I forever remember her kindness and her being in the unit hallways as Gabby is walking cheering “Go Gabby! Go Gabby!”. 

I was able to find one picture that happened to have Bekah in the background. What blessing she has been to our family this trip! From our understanding this will be Dr. Alam’s last stop, for a while at least, with hospitals. So hopefully we will encounter Bekah again for Gabby’s next surgery.But for now thank you to Bekah and all of the wonderful nurses on 7A, 7C (Critical care) and ICU. 

The other blessings this trip have been from the ladies of The Childlife Team. They have an assigned person for each unit on floor 7. Michelle, has been the one we have had in 7A. Gabby seemedto connect with Michelle almost immediately. Maybe it was all the cool LEGO sets, light fixture, American girl and slime that she gifted to Gabby. Lol! But honestly before all of that happened Michelle was much better at calming Gabby down than I was during stressful situations. These ladies are called on by family and nurses to help assist in all kinds of situations. The day we arrived on the floor Gabby was upset and crying just because she knew what was coming. The nurses immediately called Michelle in to help Gabby feel more comfortable. She has a calming voice and easy going manner about her that Gabby took toright away. Another huge thank you to Michelle, Allison and Laine the Childlife Specialist for 7A, 7C and ICU. 

Frustrated...

Good morning everyone! I’m sorry that it’s been a 3 days since I’ve updated. In those 3 days we have had a couple of triumphs. First, they removed the NG tube!!! Hallelujah! Second, walking is getting easier each time. Yesterday she got up and walked for us 4 times! Once with PT and 3 times with Bart and myself. We also got to go to the Atrium yesterday. This is a huge playroom on our floor with all kinds of toys, books and arts and crafts. 

So on to our frustrations. They pulled NG yesterday morning and we were hoping to start sips ofwater last night... the urology residents said no. So, here we are a full 24 hours later. We had the nurse message Dr. Alam regarding her having sips of water and the answer was still no. I’m so frustrated for her! We have been asking her to do so much in the promise that she would be working toward the ultimate goal of... food. Our sweetgirl has eaten or drank anything since 6/11, eights days ago?! She is working so hard but her colostomy output hasn’t increased beyond a couple of teaspoons and minimal gas output. This is what the urology team is using as their reasoning for not giving her anything by mouth. 

I decided to included some of our better moments over the past few days. They have a team of 50 volunteers that bring therapy pets that come by the patient rooms. So far we have met 5 puppies. Gabby and Avery been able to do some crafts together to occupy some of their time. 

As always thank you so much for your continuedsupport and prayers! 

Moving in more ways than one

Good evening everyone! Let’s jump right in to allthe excitement we’ve had around here. Most of you probably saw our Facebook post yesterday of Gabrielle walking. I’ll be perfectly honest it does take some bribes to get her out of the bed but honestly, would you want to get up? The video was actually from the second time she walked yesterday. I was making a run to the store when she walked the first time. PT has started to come by at least once each morning to get her up and moving. Today she walked twice as far as yesterday.

 

Once she comes back to the room she sits in her chair for several hours. It makes it easier to play with slime or LEGO’s or paint. 

Our next big news is that we moved to our regular unit today! The only thing keeping us from moving was that she was on a drug called Precedex. This is used to assist with pain management by helping her relax. We talked to the anesthesia team this morning and they had no problem trying her off of precedex and she seemed to handle it fine.

 

Once we moved she did start to have some painso we did end up giving her a dose of Dilaudid late this afternoon. 

Last exciting news, is that she has had some output from her colostomy which means her bowels have woken up. Dr. Alam stopped by for a visit this afternoon and said that he may be willing to pull the NG tube tomorrow but that she still will have to wait until Wednesday possibly Thursday before she can start a clear liquid diet. Poor baby is starting to really get hungry. Once she actually starts clear liquids it will have been 7-8 days since she has had anything by mouth. With your prayers hopefully tomorrow we will get to see her pretty little face with no tape or tube. 

This afternoon the girls were able to play with each other for a bit. I think Avery was just as nervous about being in the bed as Gabby was. Poor Avery has been so worried about Gabby. She ask questions all the time about when she can eat and drink. And she wants to know why Gabby hurts. I’m so happy that Bart and Avery were able to stay. I believe having Avery here is going to help Gabby want to recover faster. 

Your continued prayers are such a blessing to our family. Thank you so much! 

Happy Fathers Day

Happy Fathers Day to all of the wonderful dads out there. Especially to my husband, Bart! 

This is Bart’s usual spot most of the day since she was an infant. Whether he is petting her hair, cheering her on, assisting nurses or fussing for her to work harder. I’m so thankful that he is here. 

So, I was supposed to be saying good bye to Bart today and sending him back home. That was the plan if Gabby was in a regular room, which we aren’t yet. For those of you who may not be aware... Gabby and I had a few issues when we first got here regarding where to stay and the factthat there were some scheduling issues. Once I saw Dr. Alam and spoke with him along with knowing Bart was on his way to Charleston helped my mood and Gabby’s immensely. We realized after that first week that the 4 of us as a family unit function much better together than we do apart. With that being said Bart has decided that he and Avery will not be going back home tomorrow.Granny and Mimi will be heading back home on their own. I so appreciate them coming for the support, help with Avery and the comedic relief. Gabrielle and I are very happy that Bart and Avery will now be staying with us in Charleston and our family is back in one town together. Some families are able to travel for doctors appointments individually but for our family we work better as a unit especially for extended periods of time like this. I’m so thankful that I have Bart to do thisthing called life with. Bart and I believe that all things happen for a reason. Bart and I were selected to be Gabby’s parents and we accepted that challenge together and we will work our hardest to complete it together. 

As for an update on Gabby... yesterday she was moved for the first time. She had to sit up, standup and move to a chair at the bedside and there she sat for 6-7 hours. She has been the strongest little girl... hardly complaining. Some little whimpers here and there when we ask her to do spirometer, move a tube or remove her bandage from her 6-8 inch midline incision. She stayed awake most of the day. They did make some changes to her medications like adding Pepcid & changing out Tylenol for Toradol. Today we will be aiming for her to get up and walk a bit and sitting in the chair again. We are hoping moving around will help wake up that gut so we can start a clear liquid diet soon. Poor baby hasn’t eaten a thing since this past Tuesday. 

Just a few more pictures of the favorite man in our lives. Happy Fathers Day! 

ICU and the day to follow

Hey guys! I would consider today to be a pretty good day, not so sure Gabby feels the same.  When we got back to the hospital today Gabby was still in the ICU and the residents from the urology team were flushing out her Suprapubic tubes. There are 2 of these, one leads directly to the bladder and one leads into her new mitrofanoff opening. These are to drain all of the fluid off of the bladder constantly so it has time to heal from the augmentation. The use saline or water twice daily to flush the lines to make sure that nothing has clogged the ability to drain. Overnight Gabrielle has woken up complaining of pain so her nurse gave her a dose of Dilaudid for pain. She recieved one more dose of that later in the morning and can continue to get it every 2 hours as needed. Bart and I are trying to avoid giving that to her though as it will slow down the gutsmovement. The rest of the day she was able to rest comfortably between her nerve blocks, Valium and Tylenol. There is speculation that the catheters from the nerve blocks is leaking so sometime tomorrow the anesthesia team will be removing them and making adjustments to her pain regimen. We were able to move her out of ICU and are now in the step down unit!! THIS is very exciting news! Dr. Alam stopped by this evening afterthe move and it very clear that tomorrow she was to be up and out of the bed sitting in a chair for the majority of the day. She also has to bulk upon using her spirometer more tomorrow to prevent pneumonia but also to promote healing. We are hoping to be moved to the regular floor by theend of the weekend. She had a visits from Avery,Granny D and Mimi Mary today. Bart will be staying with her tonight and I’ll take tomorrow nights shift. Thank you all for your continued support. The pic today is from Avery’s visit to the ICU. ❤️

The one we’ve all been waiting for...

Praise the lord... what a wonderful day he blessed us with! I want to start by thanking everyone for your prayers and support. She would be whereshe is without your amazing prayers. Her surgery was completed in less time than planned and she has already been extubated!! Just look at thatgorgeous face, will you?! As long as tonight goes well she should move from the ICU tomorrow into either the step down unit or the regular floor.She hasn’t needed any narcotic meds only her Bupivacaine nerve block. When Bart called ICU moments ago they said she did wake for a moment and told the nurse she wasn’t in pain. Don’t getme wrong... I know there is going to be pain but tonight she needs to rest comfortably. 

I texted my work family earlier when we were waiting to see him that I wanted to see walk in with a smile. If he walks in without one you know he is concerned. But oh my gosh he was beaming when he walked in the waiting room. This surgery was multifaceted from the planning stages. As he said earlier he plans for things to go one way but of course there are always bumps. Thankfully there was only one hurdle to jump and he had to do some soul searching to decide what to do.That part was to do with her reproductive organsand at this time he made a conservative decision and Bart and I stand behind him in that. I won’t get into the specifics of that on this blog due tothe nature of the topic. Getting back to the otherimportant parts. 

Kidneys: He detached the ureters that connect the kidneys to the bladder and repositioned them. The point of this was to try to get them higher than the bladder itself. This should prevent reflux from happening where the urine backs up into the kidney causing painful infections and damage to the kidneys. 

Bladder: Dr. Alam used a piece of her small intestine to augment her bladder and make it bigger. Since her bladder doesn’t have a sphincter it has never held a full bladder of urine and therefore has never stretched like mine or yours. That urge that we get to go to the bathroom she doesn’t know what that feels like. Then her artificial bladder neck that he created years ago was removed. He made a new one closer to the top of the bladder and attached it tube a new opening at the surface of the skin called a mitrofanoff. Dr. Alam seemed to be in shock at how good of condition her bladder was in and that there enough “materials” to put the mitrofanoff exactly where he wanted on the opposite side of her body from her colostomy. 

Reproductive: As I said earlier a large part of this has been postponed until a later date. 

Colostomy: There was the possibility that a revision would have to be done and colostomy be moved. Thanks to small gifts from God this DID NOT have to be done at all!! This is saved Dr. Alam hours of work in the end. This is the reason the surgery was only 12 hours instead of 16-20 hours. 

Abdominal wall: When Gabrielle was born she had a huge hole in her abdominal wall. It was bigger than a softball. Due to this she is missing the abdominal muscles that you and I have. When she had her first surgery at 3 days old they used alloderm to close the hole. Eventually she had 2 more surgeries to close the hole in smaller and little better each time. Dr. Alam was fully preparedto have to add a new piece of Alloderm to the previous because there is no muscle there help hold everything in. But another gift from God there was no need to add anything. He was able to stitch the existing Alloderm back closed with no need to add.   

A crazy little factoid he dropped while we were having some candid moments with him... there were 300 needles used to stitch in different placesof her body due to them becoming dull. That is mind blowing to me. 

I will Dr. Alam a good amount of credit for his work. His hands are beautiful instruments that do Gods will in the surgical areas that they are needed. I know in my heart that today’s blessing were nothing short of God’s handiwork. Praise be to him for this wonderfully exhausting day... it was so worth the hours spent in the waiting room & in the car to get here. I will continue to post updates each day. 

Surgery day update #3

Good evening everyone. We have just recieved an update phone call. The nurse said that everything is going along great. We are finishing up hours 8 and 9. They are currently finishing the mitrofanoff. They will then do some work to the small bowel. Once the bowel is finished he will start closing her up. The nurse speculated another 2 to 21/2 hours left. That will put us at around 12 hours total... much shorter than originally planned and we so thankful for that. I’m anxious to speak with him to see if he was able to accomplish everything that he wanted since he will be finishing upearlier than originally planned. Once she is done she should move to recovery and the to ICU where she will remain for a couple of days. I will update later on tonight after we have been able to see her and speak with him. Thank you for your continued prayers and support for us. 

The board above is the surgery board we have been following Gabby’s stage on. Each color means something different. It has been flipping through 3 screens all day long almost completely full of OR procedures. Gabby is the 2nd orange line from the top. We have been patiently waiting for it to turn purple which means her case is complete. They just told us that they will be shutting down this waiting room at 8pm tonight. So at that time we will move to the ICU waiting room to waitto see Dr. Alam. 

Surgery Day update #2

I just got phone call #5 of updates from Mrs. Roberta. We are in hour 6 I believe... sorry it’s hard to keep track. We were up at 5am and each got around 3 hours of sleep last night. Since my last update they have done a bladder neck resection. That means that the man made bladder neck that he (Dr. Alam) created years ago has finished its job and has now been removed. He had to disconnect and move the ureters (this connects your bladder to your kidneys). The reason for moving those is prevent bladder reflux in the future. Ifreflux were to happen, reflux meaning the urine back up from the bladder back into the kidneys, this could cause constant bladder infections. Currently, he is working on taking a piece of small bowel to expand her bladder and make it bigger. He will then be using either small bladder or appendix to create and opening to the skin in the abdominal area. This is what creates the mitrofanoff. This will give us the ability to cath her multiple times daily. More updates as I receive them. 

My sweet girl 

Surgery Day update #1

I don’t have a whole lot to write but wanted everyone to be as up to date as possible. Plus, it helps occupy my mind. Roberta, she is our nurse that is in the OR with Dr. Alam just called me for the second time. She said that we are now 2 hours into surgery and they are still working on opening her up. This means that have successfully completed 2 scopes on her prior to surgery: one was a cystoscope and was a vagiscope. Also during that 2 hours they placed a central line. This central line is a larger form of an IV that will more than likely be in her neck. This central line will be used to give her TPN (total parental nutrition) over the next several days. The reason for the TPN is to give her nourishment over the next several days as she will not be allowed anything by mouth until her bowels awaken from surgery. This can sometimes take up to 5 days due to anesthesia and narcotic pain meds. They also did a Bupivacaine nerve block and epidural to help keep her comfortable during and after surgery. Hopefully using Bupivacaine instead of a narcotic will keep her bowels from “sleeping” to long after surgery. At this point he is starting to open her up. Dr. Alam had told Bart and I last night that the process could take 4-5 hours just by itself. This is due to her previous surgeries and the scar tissue created from each one. As Roberta put it to me earlier things are going slow and steady and Gabby is doing beautifully. She will be calling me with updates every 2 hours. Some of these updates will be more informative than others so there may be a while between blog post if there isn’t a lot to say. Thank you all for the constant support, love and prayers. 

Avery is here with us for a while today and so farhas gotten to visit with a therapy puppy named Deacon and has gotten to make Gabby a get well card. She is being very patient on such a long day.