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.