As you all know Claiborne has been in and out of the hospital since November and we are still fighting to understand what is going on with her sweet little body. During our last 9 day stay a few weeks ago Mack and I were starting to contemplate how we were going to pay the mounding medical bills. We are both not great at asking for help, while we both have worked hard to provide a nice life for Hudson and Claiborne we were in noway prepared for this. I was laid off shortly after Claiborne's g tube surgery in February and cannot go back to work at this point due to all the appointments and therapies that Claiborne has.
While sitting in the hospital I got the nicest email from two friends who wanted to help. Ashley and I went to high school and college together and I met her sister in law Jen several years ago through one of my best friends. Jen began selling Arbonne and then so did Ashley, through Arbonne they have setup an online fundraiser to help us with our medical bills! These ladies have earned gold stars in my book!
If you follow me on Instagram and Facebook you know that Claiborne just spent 9 days in the hospital for what started out as a GI bug. There were ups and downs and just when we thought we were going home we ended up staying longer than anyone expected.
It all started 2 Thursdays ago, just a reminder that b/c of her surgery she cannot throw up, Claiborne began having diarrhea in the morning that continued throughout the day. We went to the pediatrician but she seemed to check out okay. The next day she was still the same so when our nurse came she and I called the doctor together. We decided to lay off on her feeds and try pedialyte after a few hours, if she still could not handle that we were most likely going to be sent to the ER. Well she couldn't handle the pedialyte so as soon as I grabbed Hudson off the bus I dropped him off at a friends and headed to the ER.
Of course when we go there she no longer had her 102 fever and was just as pleasant as can be ;) She had an xray which showed a ton of gas in her belly that was having a hard time moving out even with venting (how a tubie releases gas), they tried giving her a very small dose of pedialyte and she immediately had diarrhea so it was up to the 6th floor we went.
Mack and I have become very fond of the 6th floor nurses and they all love Claiborne. As much as we hate being admitted it is very comforting when the nurses are familiar with not only us but Claiborne as well. Since C was considered contagious we were able to have a private room which meant we could bring the air mattress (it's the little things people)!
The only thing C was getting at this point was IV fluids, the goal was to let her body rest and then slowly start with pedialyte and move up to full strength formula at her normal rate of 55mL an hour. Saturday was by far the worst day, she had now not had any food for over 24 hours and boy did she let us know her displeasure. She screamed inconsolably for 9 hours! They tried tylenol and motrin to no avail. It was a cry I never wish to hear again, a mix of pain, anger, hunger, and tiredness. They finally gave her some morphine and she settled down. By Sunday night we had moved to half strength formula at a rate of 25mL and we increased by 10mL every 4 hours. When she got close to 55 she began retching....think dry heaving but 10x worse.
They immediately stopped feeding her to let her body rest. At this point we were all just thinking that she was still fighting the GI bug and her body needed some more time to rest. Sunday night we started the feeds again and she again seemed to do fine. Monday when we moved to full strength she was ok until we got to 50mL and then she started retching again, this time it scared me so badly that I yanked the emergency cord out of the wall! Food is stopped again and now we are told that no matter what we will not be sent home until she can tolerate her full feed. The next step was a change in her formula since C had recently become allergic to all foods to see if maybe somehow she had developed an allergy to alimentum. So we tried the Elecare and once again as soon as we got close to 50 she began retching.
At this point I have to admit I was starting to lose my mind a little bit, I just wanted to know why my baby couldn't "eat." They sent C to have another upper GI done to see if maybe her Nissen had slipped, poor girl is so used to getting a bottle when she sees the radiology ladies that she was super disappointed when they put the barium through her tube. They did not see anything on the upper GI that would be causing her to retch, she also retched after the barium...yuck!
Her GI prepared us to maybe switch her from a g tube to a gj tube, this would be a last resort in order to keep her nourished. She was receiving formula at a rate of 20mL per hour at this point which is not enough nourishment or calories for a baby her age, so this became our primary concern. Thursday she had an MRI of her brain to see if maybe there was something going on that could shed some light on her overall situation ( we had already been in talks with her neurologist about doing the MRI so we just decided that since she was already in the hospital & had to be sedated we should go ahead and do it.)
Friday we went ahead and switched her from the g tube to the gj tube, which again required her to be sedated. The gj tube goes past her stomach and into her intestines, completely bypassing her stomach. The conclusion was that her stomach was having a hard time emptying the way it should after the bug, so we are giving it a chance to rest. In 3 months when it is time to change the gj tube we might put the g tube back in....
They didn't waste anytime getting her up to her goal and thank goodness she tolerated it like a champ and we got to go home Saturday afternoon. We had a follow up on Monday with GI, while there I ran into the neurologist and she ran down to her office to read the MRI for me, while Claiborne does have some swelling in her head it is not affecting any part of her brain. She most likely will not have any issues other than maybe a slightly larger head.
Our next steps are to see the allergist who we had to cancel on due to C being sick and we have made an appointment to see a pediatric geneticist. We are unsure if we are going to test her for the broad gambit of genetic disorders because frankly we might not be able to do anything about what we find out, for example we could find out that she carries the alzheimer gene or the breast cancer gene, I am not sure I want to know that information at this stage in her life or mine. If the doctor thinks she has xy or z then yes we most likely will test for specific disorders but it will not be right away and we will undergo counseling both before and after. This is a highly personal decision, one that we do not take lightly and we feel we must arm ourselves with the proper knowledge of genetic testing before just diving in.
Claiborne has been such a trooper throughout all of this and so has Hudson. He has rolled with the uncertainty well and is such a loving big brother. I could not ask for better children.
Claiborne has had her g tube for a month as of 3/13! I love seeing her face without tape on it! She seems so much happier compared to before her surgery. Weight gain has been a little bit of a struggle but as of yesterday we seem to be on an upward swing back to where she was before surgery. She is on continuous feeds for 20 hours a day right now. The goal is to get back to eating 3/4 times a day and then overnight.
Last week C had another swallow study done, she did better but still failed. We will keep feeding her small amounts by mouth to keep her skills up. She will also start PT next week in the hopes that we can get her start rolling over and pushing up from her tummy. Small steps in the right direction!
The night before surgery!
One last picture with her NG tube before they took her back
Sleepy girl afterwards
This is an example of what is called a gravity feed, she was getting pedialyte and then very small amounts of formula 24 hours after surgery. We will move to these type of feeds during the day hopefully soon.
Claiborne was a little more alert later that night
Dancing with Daddy
Poor girl was really wiped out
Happy Valentine's Day from the hospital
Mimi came to visit with us
After 2 nights in the hospital C was able to come home! Our home health nurse said that is the fastest she has seen a baby come home after a gtube/Nissen surgery. They also wanted to get us home before the big snow storm.
1st bath post op
Claiborne got to watch the big boys go sledding
She also turned 7 months old during all this! How is that possible!
We've finally had some warm days here so I've broken out all the dresses!
We are counting down the days until Claiborne's G Tube surgery on February 13th! Are we nervous, yes, but we are so ready for our princess to hopefully start feeling better and to get that awful tape off her face.
Let me back up....after our last appointment with our GI he suggested we make an appointment with a pediatric surgeon to go over our g tube and nissen options. A GI doctor can perform the g tube surgery but since we were considering adding another procedure that is done by a surgeon he wanted us to talk to them first. So we made an appointment and really started to do our research on our options.
Option 1: Only have the g tube placed
Option 2: g tube placed and Nissen fundoplication
What is a Nissen Fundoplication you ask, it is a procedure where the top part of the stomach is wrapped around the lower part of the esophagus so that when the stomach contracts the esophagus remains closed and doesn't allow acid to come out of the stomach, therefore reducing reflux and GERD.
I met with the surgeon and set a date for surgery, we were still unsure about doing the Nissen because it does have complications, isn't reversible, and makes vomiting either impossible or painful from here on out.
While Mack and were weighing our options C really had a rough week, she pulled her tube out 6 times in a week, was refluxing nonstop, and screaming throughout the night. We went to her ENT appointment and when they scoped her we could see just how much the acid is affecting her. That pretty much made our decision for us. So she will get the g tube and have the nissen performed at the same time, she will be in the hospital for 3-4 days post surgery. I cannot tell you how relieved I am that we might actually make our girl more comfortable. We have also moved back to her rock n play to sleep because we have discovered that when flat on her back she is aspirating her saliva (yes we have a wedge but she moves off of it during the night). This has seemed to help, not sure what we will do when she is too big for it.
We've also been going to our weekly feeding clinic appointments which have gone so so. She is doing really well with her foods and not aspirating too badly. The bottle is a different story, we first tried using a level 1 nipple (with thickened formula) and she go drink for about 2 minutes before showing signs of aspiration. With the level 2 nipple she couldn't drink at all without aspirating, side-note, she was drinking her bottle with the same "noises" as when I had been feeding which is extremely scary after everything I know now!
This last week she could no longer drink from the level 1 nipple and we moved to the ultra preemie nipple. Let me tell you, the poor thing sucked for a good 5 minutes and only was able to get about 2 grams out of the bottle! She still aspirated but mainly due to fatigue from having to work so hard to get the formula out. We will continue to work with her daily to keep up her oral skills, it is not about volume at this point so we do not care how much she eats or drinks.
We had some good news today!!! Yay! I had really forgotten what good news felt like. When C was 1st in the hospital back in November she was diagnosed with hydronephrosis or reflux of the kidney, she had it in both kidneys. Today while not totally gone she has improved tenfold and we do not have to contemplate any other procedures at this point!!! Praise the Lord! They will keep watching her but gosh am I happy to cross one thing off of our "list" for the moment.
3 months into Claiborne's journey and I am still in awe of how wonderfully she has coped with everything. Hudson has proven to be the most amazing big brother and is super protective of her. We are so grateful for all of the prayers, they are felt and are working!
Every time I sit down and try to write an update something changes with our sweet Claiborne. I wanted to do a day in the life post to show what it is like to have a baby with a feeding tube. Throughout the post I will share what has changed in regards to our routine.
When we left off after Thanksgiving Claiborne was getting a continuous 12 hour feed over night and bottles every 3 hours during the day.
7:30am Wake Up! She is always so smiley in the mornings even though she's soaked through her pjs and swaddle. I turn off her pump, unhook her, give her her medicine, and flush her tube. I then change her diaper and get her dressed for the day.
8:00am to 9:00am we snuggle in bed and play with toys while Daddy gets ready for work.
9:00am - 10:30am Nap
10:30am - 11:30am Claiborne eats. When I first started this post Claiborne had a failed her modified barium swallow on December 30th and was immediately taken off all oral feedings or NPO. We would feed her by taking a 60ml syringe and filling it halfway and letting gravity take its course.
After 5 days of this we went back to the GI for the 1st time since the failed test, because C was still spitting up/refluxing they decided we should use the pump to feed her and spread it out over an hour.
We dip her soothie in milk or sugar water during the feeds so that she doesn't lose her sucking ability.
12:00pm - 1:30pm nap
1:30pm - 2:30pm Feed
2:30pm - 4:30pm nap. We still swaddle her when she sleeps to keep her from pulling out her tube, we use the rock in play because I have to wash sheets every morning.
4:30pm - 5:30pm Feed
5:30pm - 7:00pm playtime and bathtime
7:00pm - 8:00pm feed and bedtime, we put C down at 7:30pm and then stop her pump at 8. She gets hooked up again at 11pm for 8 hours.
New Years Eve we drove down to the river...this is how you jerry rig your pump in the car!
While at the GI the neurologist could see us within the hour, making it impossible for me to go home and feed Claiborne. They happened to have a syringe, can of formula, spoon, and cup of water....so I mixed up some formula and fed her in the waiting room. I had been very nervous about doing this in public but I did and it wasn't so bad.
This is how she sits to eat now, I hate not being able to hold her in my arms and give her a bottle or nurse her.
At food therapy the other day they let her try some pears! She only gets about 4 or 5 licks once a day so nothing big but I really didn't think that I was going to be able to feed my baby so this is amazing!
She loves her weekend snuggles with big brother!
He's also kind of smitten with her!
We have lots of appointments and lots of doctors in our near future and some big decisions to make but we are so blessed to have these 2 amazing kids.
I'm a southern wife and mommy trying to figure out life as I go. I've been married to Mack for 8 years and we have a wonderful 5 year old named Hudson and a sweet baby girl named Claiborne born July 2014. I love my hometown of Richmond, VA, lake muskoka, the yeocomico river, and anything preppy! Follow us as we try to balance jobs, marriage, and kids!