The Final Countdown

We have GREAT news! Gabrielle will be getting her external fixator removed Tuesday, June 4^th. Bart and I are beyond excited!!! Gabby can’t stop talking about the things she is going to do after she gets the ex-fix off. That is only 5 days away… can I say it again, only 5 days away! What an amazing feeling to think we have made it this far into our journey that felt like it would never end. All in all in has not been a horrible experience. Yes the restless nights were bad and watching her be miserable has been really bad but God has pulled us through it all. Thank you, thank you all of for all of your prayers for our beautiful little girl during this time. No one should have to endure what she has been through especially at 3 years old but we do not choose our path. There is a reason, a purpose for her suffering and I personally believe one of the main reason  is to bring people closer to God through the power of prayer.  Her ex-fix  removal surgery will be at 1 pm on the 4^th. Please continue to prayer for her during that surgery. Dr. Alam is also going to do a scope of her bladder and urethra while she is under to check bladder function. Prayers please also that he likes what he sees or is able to fix what he doesn’t like.

Gabby had a great time this week with her nanny Kate. Kate is her godmother for those of you that don’t know. She is a recent graduate of SpringHill college nursing program (we are so proud of her!) and came to assist Granny so that Bart and I could get a night away. Gabrielle and Kate adore each other and are a great fit and I don’t think we could have picked anyone better to be her nanny. Thank you so much Kate for coming a spending the week with us, we all needed that boost! While Kate was here she and Gabby baked cupcakes and brought them around to all the other families staying at Ronald McDonald house. Gabby has been getting compliments on her cupcakes ever since. We have met several other families while staying here at Ronald McDonald house all of their stories have touched our hearts in some way or another. Some come here for a day and some have been here as long as 2 years. They come from all across the globe from Peoria, IL to Syria and Greece.  Please lift these families up in prayer tonight along with Gabby.

Hoping that you all have a good night and a good nights rest!

Family- medicine for the soul

WOW! What a busy week we have had, I promise that isn’t why haven’t been updating though. Our internet here at Ronald McDonald isn’t the best in the world and I have been having trouble getting my computer to stay connected; anyway getting back to our busy week. Monday Bart and I brought the girls to the Krohn Observatory to see the butterfly exhibit. It was truly beautiful to be surrounded by some of Gods most delicate and unique creations, kind of like Gabby herself. Tuesday Bart’s Granny Dolores and my Granny Inez and my dad Shane all came in to visit. That really seemed to lift everyone’s spirits including Gabrielle’s. My dad and Granny Inez only got to stay a few days but having them here really made me feel like this was almost home for a couple of days. Granny Dolores will be here the rest of our trip to be a tremendous help to Bart and I. I honestly don’t know what we would do without such an amazing lady in our lives, for those of you who might not know she watches Gabby everyday while Bart and I are at work. We are forever grateful to her and love her to the ends of the Earth! Wednesday we all met at the Cincinnati Museum Center which has 3 different museums inside the old Union train station. We toured the Cincinnati Museum and the Natural History Museum but decided to skip the Children’s Museum because Gabrielle is confined to the stroller because of her external fixator. Thursday we decided to just have a day to hang out and spend time with our family which is what Bart and I wanted to do more than anything. They have a grill here at Ronald McDonald so we grilled everything we could think of and made potato salad and baked beans, yummy! It was so nice just spend a little time in the kitchen and sit down to a family dinner together and fellowship. It was exactly the medicine that my little family needed to rejuvenate us a little bit. Friday Gabrielle had an appointment with Dr. Alam and we also got to meet one of our OEIS friends named Gracie and her parents. After getting to talk and share stories with Gracie and her family we decided to walk the few blocks to the zoo and spend our afternoon there, the weather was perfect. Gabrielle had a great time seeing all the animals and being outside for a bit. Saturday we decided to drive out to the outlet mall in Monroe, Oh and spent most of the day shopping around. This morning we ventured out to find a church to attend mass and then made a trip to Wal-Mart to pick up a few things for Bart to cook a jambalaya, so that we can have another little piece of home.

Krohn Observatory

At Gabrielle’s appointment with Dr. Alam Friday we addressed a few concerns that Bart and I had. First being the Ditropan that she has been taking for bladder spasms. If it has a side effect listed she has had it, especially the nightmares and not resting well at night. When she was started on it a few weeks ago she was taking 2 mg three times a day well Bart and I dropped her down to 2 mg twice a day. Dr. Alam told us that there is two reasons he chooses to give Ditropan 1) to help the bladder grow and expand 2) for bladder spams. He assured us that Gabby’s bladder was plenty large and that he felt comfortable with us stepping down her dose to 1 mg twice daily and then down to just as needed when we notice spasms. We only gave her 1 dose of the 1 mg last night and she still woke up but rested for long periods throughout the night. One question we had was what all would be done in the next surgery in a couple of weeks when she gets her external fixator removed. Dr. Alam told us that he would go through the whole where her suprapubic tube opens into her bladder to perform a scope. He wants to do this to see how her bladder is healing and draining. If the urethra he created had closed then he will have to see if he can open it again and possibly add a small piece of plastic tubing to hold the urethra open so her bladder can drain that way. He is also planning on leaving the suprapubic tube in place. Another topic we talked about was the suprapubic tube which is connected to a urine bag by a long tube. It had been mentioned that she might have to go home with the tube. I kept wondering to myself how she is going to have any independence with the huge urine bag tagging along. Well he told us that it would only be the piece of tube that goes directly into her bladder that we would go home with. It is only about 6 inches long and would be hidden in her diaper and would stay clamped off. He is calling the suprapubic tube our safety net. If for some reason the urethra closes up again then we would have the SP tube as an option to drain the bladder when needed. We also met with Tina her nutritionist about the NG tube and her feeds. We had been keeping a diary of what Gabby was eating and drinking throughout the day and Tina seemed happy about what she saw. Gabrielle is still not up to the 1100 calories a day that they want her to take in but she had gained a couple of ounces she we were in the hospital a week ago. Tina said if we felt confident she would start eating well that we could pull the tube out. Bart and I decided that since the tube doesn’t seem to be bothering Gabby anymore that we would just leave it in until after the next surgery in a couple of weeks and remove it before we come home to Louisiana. I am going to put a call in Monday to find out the specific date of the next surgery so I will keep you posted on that. Tomorrow Gabby’s Nanny Kate will be coming to visit for the week… we are very excited to see her! While she is here Bart and I are going to take a night to ourselves and stay at a hotel downtown and go out on a date for some much needed mommy and daddy time. Please pray for Kate to have a safe flight. Also continue to pray for restful nights to come to our sweet Gabby. And that we can get her off of this Ditropan it isn’t a friendly medication to her little body. It steals away the light in our little girl and we want so badly to have our happy go lucky, dancing, singing, giggly Gabby back.

I would also like to report that Carter got his external fixator removed this week! YAY Carter! I know that his mom and dad are over the moon to have their little boy in their arms again. Please continue to pray for Carter as they start to take him off of all the sedation and pain medications they had him on, this can be a long and painful process. He has already been through so much in the last couple of months that I pray the withdrawl process is easier than they predict.

Sweet sleep

Gabrielle was only kept in the hospital until Wednesday afternoon. Everything from her renal ultrasound and x-ray checked out ok so there was no reason to keep her cooped up in the hospital. Bart and I both agreed that Tuesday night in the hospital was one of our worst nights with her not resting. They had given her Melatonin to help her sleep and Robaxin for a muscle relaxer but neither seemed to help. Thursday afternoon I spoke to my boss Angie at the pharmacy where I work so that could tell me about how Melatonin works. While talking about the Melatonin and whether it would help her or not we also talked about what she was doing in her sleep. I told her it is the most restless sleep I have ever watched. Gabrielle would constantly move around, thrash her arms, and cry out. We went over the list of medications she is currently on and Angie remembered another customers child having nightmares and restless sleep on Ditropan (Oxybutynin). Ditropan is the medication she is on for bladder spasms. They also had her on Oxytrol patches which is a topical application of Oxybutynin so really she was getting a double dose. Sometimes these children need that much because the spasms are so bad because their bladder muscle has never functioned before so it has to get used to holding urine. Thursday night Bart and I decided to take off her Oxytrol patch and skip her bedtime dose of Ditropan we also increased her dose of Melatonin because she wasn't getting a very large dose. And incredibly she only woke up twice all night long, whined for just a minute and then went right back to sleep. I almost got up to check and make sure she was breathing at one point. We put a call into the Urology department at the hospital to get their thoughts on what we had done and if they had any ideas. Katie, NP and Dr. VanderBrink said that we could continue trying just giving her 2 doses of Ditropan a day instead of the 3 we had been doing. They said if we noticed that she started having bladder spasms that we may want to switch her from  just the liquid to just the patches because the patches tend to have less side effects. We decided to stick with the liquid through the weekend and see how she does. Last night she slept pretty good still only waking a couple of times but it did take her longer to settle but all in all a pretty good night. Please pray that the medication side effects are what is causing her restlessness and that we can find the right dosing for her.

We are planning on bringing her to the movies this afternoon. We have a few visitors coming next week. My dad, my granny and Bart's granny will all be making trips in this Tuesday. Please pray that they all have safe travels. We appreciate them all coming to visit. Not that Bart and I don't enjoy the time together with our girls but having some other adults to talk to will be nice! Hope you all have a great weekend! 

Please continue to pray for our friend Carter. He gets his external fixator off this coming Wednesday. I am so excited for his mom and dad!!!
http://www.littlegiftcarter.blogspot.com/2013/05/my-arms-will-soon-be-full-again.html

Faith reassured

Even when you allow yourself to question your faith God always finds a way to reassure you. 

First of all thank you all for the kind words that were sent after yesterdays post it was a rough day and I think it helps me to get everything out with this blog. Last night Gabrielle still did not rest well so this morning we got up and put a call in to urology. They scheduled a renal ultrasound and decided to have Gabrielle admitted to start IV fluids. After arriving and talking to Dr. VanderBrink he decided to also order an xray just to make sure that he covered everything. We had both the ultrasound and the xray done this afternoon both Tammie, NP and Dr. VanderBrink stopped by afterward to talk about the results. The xray and ultrasound both came back clear... what a BLESSING! This means that nothing is wrong with Gabby's bladder, kidneys or intestines from the images seen. I can not express to you all enough my excitement about this news. That means that even with the pressure of having her body cavity completely closed with all the organs inside that her kidneys, bladder, and intestines have continued to work properly. We have determined that Gabby is simply suffering from 3 year old-itis. It is very possible that she also having some mild bladder spasms so they added the patch back to help with that. Also we think that her back may be stiff from lying around and not being able to move well so we gave her some ibuprofen. Lastly to help with restlessness they gave her some Melatonin. Lord willing tonight she will get some much needed rest. We will stay in the hospital tonight with her. We also talked to Tammie about the NG feeds. They placed the NG tube back in and have started the feeds back slowly and for shorter periods of time. Bart and I have come to terms with the fact that getting her appetite back may take longer than hoped. Tammie said that she thought the nutritionist had set a goal too high for Gabrielle to obtain being she was already starting with a disadvantage. Hopefully she will be done with the NG feeds by the time we are ready to leave her next month. Continued prayers of Gabrielle's appetite returning are appreciated and that rest finds us all again soon. Much love to you all! A great family member posted this last night and I thought I would share it, it really helped me when I needed it. Thank you again Aunt Gwen.

Keep your faith... if God brings you to it... he will bring you through it... Faith does not make things easy... it makes them possible... Luke 1:37

Ahh... A3 North home sweet home. We walked in and it was like Cheers, everyone knows
our name. We even got our old room back, lol!

Also we have had several friends and family from St. Amant call to check on us tonight because their has their has been some commotion on our road. The neighbors across the street had their mobile home and another outbuilding catch fire. Foul play is suspected. Our house and property are fine and remain unharmed. Another blessing!! Thank you to our friends and family that have been to our house today to check on everything we know that we have nothing to worry about with people like you in our lives. We love and cherish you all!

The devil is negativity

I have been thinking all day that I needed to post an update but didn't know what to right about. I know that you probably are all thinking that is crazy. We have had so much going on lately that there should be a ton to write about. I usually try to right about the positive things going on and we have had plenty of that to write about lately but today I don't have a very sunny outlook. I am trying to stay positive... negativity is my devil.

For the last 2 weeks we have asked and prayed to the Lord asking him to protect our little girl through the surgery, asked him to control her pain, asked him to help her heal quickly, etc. I am truly thankful to Him because he delivered on every request. I believe that we are all given a path to walk with hills maybe even mountains along the way. Our little Gabby has been selected to have more mountains than hills and we as her parents have been chosen to take this journey with her. Bart and I have said all along that we were chosen for a reason, God had something to teach us. That lesson is on going all the time and never ending. I believe that one thing is trying to teach me that my faith should NOT waiver that no matter the outcome it is His plan. But I also believe that sometimes the devil tries to reroute our path. I learned yesterday of a conversation that happened this weekend about our circumstances. As I said before we have asked and God delivered and the devil is angry. This is what the before mentioned conversation was about the devil being angry. I do believe this to be true. And I believe him to be trying to weasel his way into our family with negativity. I refuse to allow this to happen but it is incredibly hard. My family unit is strong, Bart and I work hard to keep it that way. I will not let the devil step in. Please pray for our strength, our faith.

Yesterday never seemed to end. Because again last night Gabrielle complained again all night long that she was uncomfortable and didn't like her NG tube. We ran her feeding overnight as usual. When did wake from a short nap this morning between 7 and 8 she promptly threw up. After spending some time cleaning that up we decided to walk across the street to the hospital and see if we could see urology. But before we went important business was conducted and we removed her NG tube. We wanted answers. They want us to fill her full of Pediasure at night and then expect her to eat during the day... how? She is full. Plus on top of that you try to eat and drink with a tube in your nose and throat. She asks for food but then gages when she tries to swallow it. So when we went to Urology we got to see Nan the nurse practitioner. She talked to nutrition and they decided to give Gabby's stomach and us a few days to rest, she said she could tell by looking at us that we were exhausted. Hopefully tonight Gabby will rest better. Now we need to figure out how to stress the importance of this to Gabrielle. The tube is out and you need to take this opportunity to eat and drink but yet she will not (lurking in the background is the devil with his negativity). We also had general questions to ask about her suprapubic drain bag from her bladder and were told to start flushing it out with normal saline nightly to prevent build up. I asked if she would continue to be on the Gentamicin bladder flush and the oral Bactrim (both antibiotics for her bladder). We were told that once the suprapubic tube is gone she would be taken off of them. Another question we had was about cleaning her incision site and were told to do so with soap and water. All in all a good meeting with Nan. We are scheduled to meet with Nutrition Thursday @ 11am. We will meet with Dr. Alam next Friday the 24th.

We are truly grateful for all of the positive energy and the prayers that have been delivered our way. Bart and I will never be able to express the gratitude we have toward each and everyone of you. Thank you and as always please continue to pray for good eating and positivity!

Old McDonald...

Well we were checked out of the hospital yesterday as some of you may already know. We are staying at Ronald McDonald house across the street from the hospital. We will be here another 4 weeks or so until it is time to remove her ex-fix from her hips and suprapubic tube from her bladder. The RMH is a really nice place it holds up to 78 families and there is always something going on from food being cooked to massage and spa days. We met this really nice family last night from New Jersey, The Burgesses, their daughter has a birth defect really similar to Gabby's and has had some of the same surgeries. Bart and I had a really good time talking to someone that we actually had similar medical issues with Gabrielle. Home health stopped by last night to make sure that we knew how to work the feeding tube machine that connects to the NG tube. We are supposed to be meeting with urology sometime tomorrow to address some questions we have about the NG tube and the suprapubic drain tube. We thought getting out of the hospital would help Gabby rest better but she still cried and moaned most of the night. Poor thing, she has lots of things going on between not being able to sleep on her stomach like normal and having the NG tube hooked up at night. She is miserable and tired and in turn so are we. When you ask her what is wrong she just stares at you. And then the BIGGEST part of it is that she is 3 years old with a new sibling. I keep telling myself "this too shall pass" but when?  

Ronald greets you as you walk up the front steps.

Blessings I am happy for is that we are in fact out of the hospital. Gabrielle is starting to talk to us again. We are at Ronald McDonald house instead of a hotel. We are able to take her places the hospital gave us a car seat that she is able to fit in with the ex-fix on so we can get out and go places.

A really pretty water fountain that is outside on one of the patios.

Well I need to get going, time for pin care and bladder flushes, oh joy! Please pray for peace for Gabrielle. Also she is still not eating much by mouth only a bite or two here and there. The sooner her appetite picks up the sooner we can get rid of the NG tube, thus hopefully getting back to our little girl sooner!

A view walking from the hospital to RMH.

A day of learning for Mama and Daddy

Well we started out this morning thinking we would be out of the hospital Monday but now they have changed their minds and it looks like it will be tomorrow. Bart and I have been getting crash courses in NG tube feedings and bladder flushes. I think we should be able to handle it, nothing too bad. Nan, NP came and pulled Gabrielle's left kidney stent this morning. Gabby and I took a wheelchair ride this afternoon to radiology for her to get a renal ultrasound. Nan came back to the room later on and said Dr. Alam was pleased with what he saw and everything looked good. We know that he is cautiously worried. He has repeatedly told us that Gabrielle is one of the most difficult cloacal exstrophy cases he has worked on. The opening in her pelvis and abdominal wall was so large it took a lot of work to close it. Also in each case you never know where a child's organs may be. Gabby's stomach is out of place a little bit because her right kidney is around her pelvis instead of up high like it should be. He says everything is really tight in there right now but that with time things will loosen back up a little bit and she will become more comfortable. I asked him yesterday about her risk for bladder infection because in some of these children they keep chronic bladder infections. He said that in the cases that he takes care of that he has yet to have one with a bladder infections, knock on wood :)!  The only reason we might be at risk is because we might have to cath her. Dr. Alam explained to us that during the surgery he discovered that she didn't have much to work with as far as urethra coming from the bladder. He made do with what he had so it is a little narrow and a little shorter that he had liked. If it is to narrow for the urine to drain on its own then we may have to cath. The urethra just has to last her a few years anyway until she has her next bladder surgery to put in a Mitrofanoff. A mitrofanoff will be a permanent cath place that she will use for the rest of her life.

As for her tube feeds things are going well with her tolerating the amount that they want her to get each day. We are tube feeding her through the NG for 12 hours each night and then resting her during the day so she has time to eat by mouth. As her eating by mouth increases then the amount we feed her at night through the tube will decrease. Home health came by today and explained how to use the feeding machine that we will be sent home with. Bart and  I can't wait to get out of this place and I now Gabby will perk up a lot when she gets out of this room. Please continue to pray for Gabby's nutrition, that her appetite will increase so that she can get rid of the NG tube soon. Also please pray that once we leave the hospital that she stays infection free and healthy until time to have her ex-fix removed.

This was from the first day she got out of the bed... family snuggle and nap time :)

Could that be?

We arrived today back from Gabrielle's daily wagon ride to have Dr. Alam, Tammy and Katie (his nurse practitioners) waiting to see us. Bart had requested to see them because we had some questions about bladder spasms. Yesterday we noticed that Gabby would cry out in pain for a about 15-30 seconds and then would be perfectly fine. We could only assume that this was the so called bladder spasms we had been warned about. When you ask Gabby if she is in pain she continually says no so all we had to go on was her actions. We gave her a couple of doses of Valium to try to help relieve them last night but never could tell if they helped or not. The class of drug that Valium is in tends to cause patients, usually adolescent and elderly, to act strangely especially at nighttime. She would constantly move in the bed all night and whine and cry out constantly and then take about 30 minute naps. While the doctor and nurse practitioners were in the room they got to see Gabrielle take a dose of medication and decided that she may have reflux, so tonight she will be starting Zantac. We are praying that it will bring her some relief to get a little more rest. We do realize the majority of the problem is the fact that she has been couped up in the bed at least 20 hours a day for the last week and half.

Could that be... the light at the hospital exit door? They started Gabrielle's NG tube feeds yesterday. I incorrectly posted how they were doing that in yesterdays post. They started her out at 20 ml/hour after 8 hours they increase her by 5 ml (one teaspoonful). They hope this will help stretch out her stomach a little more and also make her body crave more calories. Today Dr. Alam told us that they plan to take the right kidney stent and drain tube out tomorrow and that they plan to take the left kidney stent and drain tube out Thursday. Friday they plan on doing a renal ultrasound to check her bladder and kidney function. Just a neat tidbit of information, this will be the first time that Gabrielle's bladder has ever been able to have an ultrasound because it has always been outside her body. After she reaches her specified volume on tube feeding, gets both stents out, and has the renal ultrasound we may actually get to move her to outpatient. It is incredible to think that just 2 weeks ago this coming Thursday she was having a major surgery and will have recovered well enough to get out of the hospital. God is great!!!! So basically they are planning on having us at the Ronald McDonald house by sometime this weekend. Prayers that all plans go as scheduled and hoped and that Dr. Alam likes what he sees on the renal ultrasound. Bart's mom will be coming in Thursday to spend a  few days with us and to help out when possible... prayers for a safe trip for her.

Thank you so much to everyone that has prayed for Gabrielle. Bart and I are trully humbled at the support we have recieved.

Gabby and Avery having a little playtime in the hospital bed to pass time.

They love each other so much already!

The day we have been dreading

This morning was the day that Bart and I had not been looking forward to. Today they placed Gabrielle's NG tube. We knew this was coming even as hard as we fought it. Gabby just wasn't able to eat the calories that were required to not get the tube. We are trying to remain upbeat and remind ourselves constantly that this is a temporary solution. A temporary solution to get out little girl out of that hospital bed and to our "temporary" home at Ronald McDonald house. I personally am struggling with this thought but I just keep repeating to myself that it is just temporary. The NG tube feeds are being started out a very slow rate of 20 ml (just over a tablespoonful) over an 8 hour period. Sounds like an incredibly small amount, right? Her stomach just can't handle much right now. This amount will be increased by 5 ml (1 teaspoonful) every 8 hours until we get to the final amount of 47 ml. At the same time as long as she will try we can still give her things to eat and drink by mouth. Another benefit to the NG tube is that she did have around 6 different lines coming from her PICC line to various pumps. Today it dropped down to just 1 for fluids and as her Pediasure through the NG tube increases she will be able to get off of fluids also. Bart also requested today that we have her taken off all the monitors. Thankfully urology said that would be fine. They also said they could decrease their night vital checks to 8 pm and 4 am instead of every 4 hours so hopefully now we can get a little more rest at night. She is still on an antibiotic Cefotoxin until her kidney stents are removed (maybe the end of the week). Ditropan orally and a patch for bladder cramps, this will probably be the only medication that she will actually go home with. Tylenol for what little pain she is having. This is amazing to me to be on such little medications compared to what she was on a week ago. So even though we received the dreaded NG tube it brought with it many blessings. Below are a couple of pictures from our trip to the New Orleans aquarium.





Gabby at the New Orleans aquarium.

Bart and Gabby feeding a parakeet.

Me and Gabrielle at the aquarium. She had a great time that day.

I am continuing to learn that my plan is usually not His plan for things. We did not want this tube and we fought it will all our being. Through asking questions and getting answers we were delivered acceptance.

 

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. Joshua 1:9

Seeing a little bit of the old her

We brought Gabby to the New Orleans aquarium the weekend prior to leaving for Cincinnati.

Yesterday was a pretty good day for the most part. We have been seeing the "old" Gabrielle more and more each day. She is starting to talk and smile a little more each day. We don't have much to report, which is a good thing! According to all the doctors she is healing up nicely. Her incision on her belly is really looking good. Bart and and the nurses have been cleaning her ex-fix pin sites twice a day everyday. This is of course to prevent infection and to make sure the drainage doesn't sit on her skin and cause irritation. Gabby has gone from having 4 drains to 3. The plastic surgeons pulled their drainage tube on the 7 day mark and the whole that remained behind is already starting to heal. The other 3 drains are from her 2 kidneys and from her bladder. Hopefully in the week coming ahead we will get rid of the two coming from her kidneys. Dr. Alam has decided to leave her on TPN and lipids over the weekend and the NG tube will be placed Monday. We have not given up on feeding her but we have resigned to the fact that this may be the best option. Praying it will only be for a very short while. She did have another incident of throwing up yesterday. We talked to Dr. Alam about the fact that maybe her stomach is being compressed by the new pressure in her body and he said that could definitely have an affect on things. He also said that it could be an intestinal issue. As these children have surgeries over and over again and their intestines are constantly moved and manipulated they sometimes become lax and distended, not working as well as they once did. When she has her ex-fix removed they will perform a test on her body to see how well food moves through her system from her mouth all the way to exiting the bowel. This will tell us if we should start doing irrigations on her bowel once we are home. So currently we are still trying to give her food and liquids until the NG is placed and then go from there. We have started bringing her on wagon rides each day and yesterday she spent the afternoon on the coach that Bart and I sleep on. Last night was another restless night filled with a little pain and nurses in and out of the room all night. For now we are happy to hang out with our two little ones and get some bonding time until we get out of this tiny room and big hospital. I personally see better days ahead already!

Thank you all for your continued prayers. Bart and I know that is why Gabby is healing so well because we all have prayed for the ultimate healer to lay his hands on her.

Up, up and away!

Well we have had a really busy day. You would think while we were in the hospital that the days would drag and be uneventful but I feel like we are constantly running out of time each day. Gabrielle rested pretty well last night so that started our day off good. The air conditioning in our room wasn't working so we moved rooms, so know we are nice and cool. After changing rooms we ordered breakfast and she ate 1 egg and drank about 4 oz of pediasure. We learned that she has met the limit of days that Ativan will help her. She was extremely irritated after this mornings dose so that is one more drug off her list. Then we had rounds from pain mgmt, urology and nutrition. Dr. Alam with urology said we have till Monday morning to get her up to 1100 calories a day before he will resort to a NG tube. So at least he is giving us the chance to get there, he also reassured us the NG tube would not be a permanent thing. Pain management has released her and now all of her medications are being changed to oral... YAY!! Our goal now is to start stepping back on all her medicines except the Ditropan for bladder spasms. The plastic surgeons fellow stopped by and removed their drain tube... one less tube! So then came lunch, it was going well but after we gave her oral Ditropan and Tylenol she threw everything she ate up :( thankfully our only setback of the day. After cleaning up that mess we got to get out of bed... HALLELUJAH!!! What an amazing event!! It took Bart and 3 nurses but we got it accomplished and then we were off. We went downstairs to meet Gabrielle's friend Natalie and her mom Kim. Natalie and Gabby are the same age and born with the same birth defect. It is a great feeling to meet people like Kim & Natalie and Jill & Isaac, whom we met earlier this week, because it gives Bart, Gabby, Avery and I are not alone. Natalie was completely adorable and she and her mom brought Gabby a present. After meeting them we came back up to the room and Bart and I each had a turn in holding Gabrielle for the first time since last Tuesday... AHHMAZING!!!! I couldn't help myself I started crying and Gabby told me not to be sad. I explained to her that I was so overcome with happiness that I cried. What an incredible day of ups we have a had and I know that our Lord and all of your prayers are the reason it happened. Bart and I are on cloud nine right now.

 She was a little nervous about the first wagon ride.

Gabby and Natalie meeting... doesn't that smile just say it all!

Bart holding Gabrielle for the first since surgery.

My turn to hold Gabrielle today.



Today I do ask you to continue your prayers for Gabby's appetite to increase but more importantly I want to lift another child up in prayer tonight, Carter Cline. Gabby's friend Carter had the same surgery but his hurdles to get past have been greater than hers. He has many days in the PICU at John Hopkins Hospital and his pain has been immense. His intestines are not responding well to the medications he has been on and his vomiting a lot. God gives us all a journey and Carter's is filled with mountains that he and his family much climb. Please lift this incredible family up in prayer.

www.littlegiftcarter.blogspot.com

Pep talks and popsicles

I am so sorry that I didn't post an update last night. We had a really bad night Tuesday night with Gabby. She was really aggitated so we were up with her a lot... resulting in hardly any sleep for Bart or myself. We spend most of yesterday giving Gabby pep talks to eat. We just wanted her to take anything yesterday. Finally late yesterday afternoon she took a popsicle... talk about a powerful popsicle. This popsicle was the answer we were looking for to get us started and it brought tears to mine and Barts eyes. It also gave us about an hour and half glimpse at the our child, the bubbly little girl that talks and giggles and smiles. Later that evening for supper she ate a few bites of macaroni and hot dog and ate some ice cream. This morning she has drank about 4 oz of pediasure and ate a whole scrambled egg. One of the nurse practioners that works under Dr. Alam is still pushing for the NG tube... ARG!!! can't you people just give her a minute!!! I mean she hasn't eaten in a week and we have gotten her to eat a whole egg and 4 oz of pediasure in her second meal. I know they are going with the fact that "none" of these kids eat after their surgery. Well this little girl isn't just any little girl and doesn't have just any parents... we are deteremined and stubborn and we don't give up. And we know for a fact that prayer is amazing and can produce miracles, even if it is just eating a little bit.  

Please continue to keep saying prayers that her appetite will increase. They want us to start getting her calories and protein intake up to 1100 calories/ daily. The pediasure and egg counted for about 200 calories, just to give you an idea of where we are. We know they prayers are working or we wouldn't have made it this far.