Surgery

So surgery happened on Wednesday at 9:45 am. In my last post I was feeling very positive and relaxed. In the two days before the surgery or so I was not. It is an entirely new feeling. I can know with my logical brain that it is a very common surgery and there was every likelihood things will go smoothly and she will recover just fine and this will fix most of her issues. Will somebody please tell that to my gut, because for days it was like it I was twisted in knots and something was eating at me from the inside out. When I held her and looked into her innocent eyes knowing that she had no understanding of what was about to happen it hurt my heart.



Tara the day before surgery. I put her in this gown on purpose
knowing that it won't really be practical after her G-tube. But
sleepers with snaps will still work, just not zippers since the tube can't fit through.






Me holding Tara right before her surgery. She had not been allowed to eat 6 hrs before her surgery. I expected her to be pissed off and crying but instead she was calm and collected, unlike her Mommy!

 Even now as I watch her in recovery, seeing the signs of pain she is in and knowing I can't do anything to ease it is just awful beyond words. They are keeping on top of her pain with meds, but can't take it all away. Anything I do to comfort her would involve touch or sound that in my assessment would bring her to more awareness, which also makes her more aware of the pain she is in. So instead I stand idly by and try to console myself with the thought that perhaps her signals of pain are only for a little pain and not a lot. She only seems to stir and have movement/crying motions or increased heart rate when the nurses have to mess with her, but the rest of the time she seems to sleep peacefully.





Tara 2 days before surgery



It is with some reservations that I post the below pic of her after surgery, but seeing how many folks are coming to this blog with search terms of similar medical issues I feel like sharing this might be helpful to others. In this pic she is on the ventilator and has two IV's and is substantially swollen from the IV fluids. Her belly is a little distended, which got a bit worse before it got better the next day due to gas buildup and her intestines needing to recover before they started working again. All babies are ventilated during the procedure but some are extubated immediately after while others take days. Given Tara's respiratory history and reactivity, I did not expect a fast wean for her and as of yet they haven't even started weaning her. But that is also because her surgery did not run smoothly and was more involved than anticipated.



She will have a scar, but it will lessen as she grows and is not all that big.

I think I held it together for the most part, but I asked permission from my hubby to totally fall apart the day of if I felt like it. He said sure. For some reason that made me feel better. You feel this pressure to be strong for everyone else, and be the one to explain everything medically and offer reassurance. But really others should be doing that for you. Once I gave myself permission to let go of that pressure and not worry about taking care of anyone else, I felt a lot better and was able to do it anyway.

Surgery day we were allowed in early during shift change, and I was allowed to hold her until about 15 minutes before surgery time when they came to get her.  There were a bunch of repairmen and hospital personnel and inspectors outside her room adding to my anxiety, since they were going to repair a gas line while she was being operated on. Fortunately they stayed out of the room, but I was ready to snap at anyone who tried to enter without gowning and gloving and masking. My mother was able to come and be a huge help the entire day, and my husband was able to be there until noon. He switched shifts to stay later, but filling out another pile of FMLA paperwork we decided was not worth it when I could keep him updated via phone when the surgery ended. Marathon, not a sprint. His parents took great care of our son throughout the days and nights around the surgery and were such a huge help.



Tara 3 days before surgery

When they came to get her I finally got to meet the surgeon and anesthesiologist for the first time. I didn't like meeting them so late in the game, but they told me if I didn't like what I heard I could always call it off and reschedule. No pressure. Fortunately I liked the both of them. They were very experienced, and the pediatric surgeon cut me off a few times in the conversation to answer questions before I could ask them. A little bit of a jerk, just the way I like them! He said he does prefer his Nissens a bit looser, but very infrequently has to redo them...even in the first year. She was about the age and weight that he cuts off doing them this soon, but thought she was big enough and had done one on a baby smaller than her before. He assured me he was well rested and not tired from his one previous surgery that morning. He told me she would get a button, and he would be happy to put in an AMT Mini-One instead of a Mic-Key but the hospital didn't have them in stock and we could always change it out later. Woo hoo! He went over all the basic risks. They intended to go in laparascopically, but that could change to an open surgery at any point and they would call the waiting room if that happened.

 

Daddy bottle feeding Sat before surgery





It was only at this point I was informed that the GI study the days previous to prep for surgery had shown the possibility of a malrotation in her intestines, but they decided it was probably nothing so that was why no  one had told me. A malrotation is where the intestines are not positioned correctly and can rotate and flip over, twisting enough to cause a blockage and even a "volvulus" that cuts off oxygen and results in necrosis where there is an emergency surgery and risk of death if caught too late. They left me no opportunity to Google at the time, but I had heard of malrotations in horses from my old college roomate...which is why you want to keep them from rolling around on their backs in the dirt. A malrotation can be asymptomatic completely or cause a problem suddenly when she is 30.

We walked her down to surgery and I gave her forehead a kiss, and then headed to the waiting room. Our wonderful minister Dennis Hamilton from Horizon Unitarian Church came to visit us and provided some much needed conversation and reassurance that made the wait go faster. They did call the waiting room early on to tell us they did find the malrotation and were changing to an open procedure. I found out later they did a LADD procedure to reorganize the intestines, a procedure that is so time tested it has not changed since the 1930's. With the LADD and the adhesions/scarring the surgery will produce that should hold things in place so that we won't need to worry about that anymore.

 http://isgweb.aorn.org/isgweb/downloads/cea07007-8387.pdf 

I'm unclear if a malrotation relates to prematurity or not, but from my reading it does not appear to. My concern is that 70% of babies with malrotations have another congenital defect. They reassured me they saw no sign of that and her malrotation was very mild, but I still wonder if there are more surprises waiting. In the least I need to find out if her twin is more likely to have the same defect, because if so we will need to be vigilant for any signs of intestinal blockages.

Signs and Symptoms

One of the earliest signs of malrotation and volvulus is abdominal pain and cramping caused by the inability of the bowel to push food past the obstruction. When infants experience this cramping they may:

• pull up their legs and cry
• stop crying suddenly
• behave normally for 15 to 30 minutes
• repeat this behavior when the next cramp happens

Infants also may be irritable, lethargic, or have irregular stools.

Vomiting is another symptom of malrotation, and it can help the doctor determine where the obstruction is located. Vomiting that happens soon after the baby starts to cry often means the obstruction is in the small intestine; delayed vomiting usually means the blockage is in the large intestine. The vomit may contain bile (which is yellow or green in color) or may resemble feces.

Additional symptoms of malrotation and volvulus may include:

• a swollen abdomen that's tender to the touch
• diarrhea and/or bloody stools (or sometimes no stools at all)
• irritability or crying in pain, with nothing seeming to help
• rapid heart rate and breathing
• little or no urine because of fluid loss
• fever



The G-tube and Nissen both went well. I was happy to learn that instead of a Mic-Key button they instead put in a BARD button. There are pics below of it closed and open during a feeding, and you can also see it in her post-surgery pic. Pretty small right!? She can wear regular clothes except maybe gowns with no snaps and sleepers with zippers. I did learn that she will be on continuous feeds most of the day/night for 6 weeks while she heals before we can restart "bolus" feeds every 3-4 hrs like normal. Fortunately you can change the formula bag every four hours, because every hour would have been a nightmare! She should be able to restart bottle feeding before the 6 weeks is up though, so I'll find out more about that later. Our surgeon Dr. Kevin Kadesky had never done a BARD button, but the surgeon assisting Dr. Black showed him and placed it. Kadesky liked it so much that he says he is only doing BARDs from now on.

 Not only is it small, but there is no balloon to inflate, which is why most Mic-Key's fail. The downside is that it will have to be replaced surgically in 6 mos when she outgrows it, but secretly I'm relieved that I don't have to be the one to replace it. The scars aren't that bad and I found this blog post that shows lots of before after pics. http://dukerdiary.blogspot.com/2010_09_01_archive.html 

 

Aside from the malrotation and switching to open surgery, the operation was not without complications. She did desat badly at the beginning and at the end of the surgery and made the anesthesiologist work for his $300,000 a year. Because the surgery was more involved her recovery will be longer, so I am of course pretty disappointed that she won't be home for Christmas. But I could see some crying mothers in the waiting room getting worse news and having more major surgeries holding empty baby carriers, so I'm still counting my blessings. The pediatric cardiac surgery waiting room was separate and had closed doors, and I'm so grateful I was not in that private waiting area because her PDA has long since closed and her left parasternal hole in her heart is insignificant and should close up on it's own.

I decided to leave the Christmas tree up for most of the month of January so she can fully enjoy the twinkly lights when she comes home. I did put up a lovely pink Christmas tree in her hospital room that she got to enjoy for a day before they made me take it away due to fire hazard concerns. They don't let you plug ANYTHING in. Not even a phone charger. Nor the electric kettle I brought so they could have hot water, but they finally brought in bottle warmers so it is only tepid baths that are still a problem right now. Anyway, she has a lovely fiber optic tree to enjoy when she gets home, as well as our rainbow Christmas tree and 3 mini trees AND the silver retro tree in the kitchen. I knew the pink tree was a risk, but the nurses didn't warn me when I mentioned it and it was worth it even for only a day. I can't wait to hit the after Christmas sales and get some more decorative items to go around the house and a wreath for the front door. Maybe next year we'll put some lights up on the outside of the house, but for now I'll just go all Clark Griswold on the Christmas trees.



This pic sums up my life right now pretty well



Since they messed with her intestines they are not moving much gas so her belly got pretty distended and they put in an orogastric tube as well as vented through her G-tube to ease the pressure. That seemed to work. This will also delay putting formula in her G-tube as well as ventilator weaning. However her lungs scans and Xrays look good, even though she is secreting a little bit of white sputum reacting to the vent tube. They got my consent  for a PICC line so that putting in TPN nutrition for a few extra days won't risk blowing out the 2 smaller veins they have IV's in now. But yesterday they tried 4 times and couldn't get a PICC in. If they try again 4 times today and can't get it I'm considering withdrawing consent. My daughter is not a human pincushion so they better get their best person on it and we can re-evaluate if a vein blows.

After the surgery my mother and I decided to go out to lunch at Red Lobster while they got her re-situated back in her room. Thanks to the wonderful friends at work who got us the gift card that paid for a nice and very appreciated lunch. I spent the rest of the day in the chair in Tara's room keeping watch, and getting some sleep in the reclining chair. I couldn't do anything but be there, which for now will have to do. I long for the day I can hold her again and have her look into my eyes for hours like she used to!

Meanwhile our little man is holding down the fort and we have adjusted him to a 4 hour schedule since he seems to heavily prefer it and fights us at the 3 hour mark. He is gaining well and outgrowing clothes, so all seems to be well. I got a great pic of him sleeping with his pacifier halfway out of his mouth...adorable!

I find it funny that he and Tara have switched their personalities when it comes to diaper changes. Tara doesn't need oxygen right now except when she poops her diaper and freaks out and has a screaming fit before, during, and after the changing.  She used to sit for hours in a dirty diaper whilst our son would complain loudly the instant his was soiled. Now that has reversed entirely. And he no longer cries through the entire diaper change and only occasionally protests mildly. He seems to be grasping the routine around the place, and when he is hungry and the bottle is not quite ready he calms down as soon as the diaper change/bottle prep ritual begins.

I hope by the midpoint of next week she'll be weaned off the ventilator and her pain is lessened enough so that she can be held, but as the anesthesiologist told me before the surgery "Tara is in charge of what happens next."

Nissens are Fundo! G I have a Tubie!

So I had an excellent conversation with the doctor today and got all my questions answered. It really pays to do your research. All the pieces finally came together and we reviewed her symptomology and are in total agreement that she already has severe reflux with atypical presentation of almost exclusively respiratory symptoms. You just don't hear of babies with severe reflux that never throw up, but my baby girl loves to be unique! That is what has made it so puzzling and idiopathic this entire time, and hard for me to research too.

What? You thought I was coming home Wednesday?
I wasn't gonna let you off that easy!
I still haven't hit your insurance cap yet...

They think that her RAD is very reactive, but to the micro-aspirations and silent reflux and not necessarily other triggers. This has me more relaxed now that she won't be under house arrest after all, though we will of course be taking plenty of precautions.

So as you can deduce, we are going ahead with the Nissen Fundoplication surgery as well as the G-tube. The fundo will eliminate or at least significantly reduce the reflux she has now. The G-tube will reduce stomach size and exacerbate the reflux so it makes the fundo even more necessary. Not to mention her RAD breathing treatments also aggravate reflux! I am fully confident that we are making the right decision. That is especially important because with her atypical GERD presentation we won't really have much of anything to confirm that we did the right thing. Hopefully her RAD will be less problematic and we won't have aspiration pneumonia, but aside from that we won't see a reduction in severe vomiting and pain and all the other typical GERD symptoms that lead most parents to this surgery far later in the game.

I've discussed the surgery with Tara who is all for it, mostly because she hates tubes in her mouth and nose and tape on her face. She is full of the cute every time I see her and has every nurse wrapped around her finger. She is the biggest baby in the NICU and the oldest, so she interacts and sleeps less and the LOVE her! Little Miss Popular.

It is good to finally nail down what I have suspected since her 2nd Delhi hospitalization. And if it took this long to finally confirm it in the US, I'm not going to fault them in India for not confirming it sooner but only failure to follow up diagnostically and treat it properly once Dr. Saluja suggested it as a possibility. I don't even know if they can do an Impedence probe test in Delhi, though surely they do Nissen's and G-tubes. They certainly couldn't do viral testing.

It is also a relief to know that it wasn't anything I did wrong or could have prevented from happening this entire time. It is so hard as a Mom not to second guess yourself about what you could have done differently to prevent it when you see your child suffer from something. Whether she was on a plane and caught a rhinovirus or not, she was doomed to wind up in a hospital with pneumonia soon anyway.


Swaddling. It does a baby good.



Vivek in the "straightjacket" swaddler Mommy
reserves for fits of the most epic proportions.

As a side note, Dr. Treen also reassured me that the reason the nurses and doctors don't react so much to her O2 dips during crying is that the monitor is not reliable during a crying episode and it is not anywhere near where it is reported to be. So I don't have to drop everything with my son to comfort her until she calms down unless she starts wheezing very badly. Good to know!

We know that the Nissen can have some complications, and it is not a cure all. It can be too tight where they have swallowing difficulty and it will set us back in bottle feeding and create an oral aversion along with gas bloat pain and venting issues. It can be too loose and she could still burp and throw up and reflux. The three little Nissens. This one is too tight. This one is too loose. Hopefully ours will be just right, though they loosen over time. It is the mose common surgery they do in the NICU, and this is a big and busy and well reputed hospital with very experienced surgeons so I have high hopes that hers will go well. It does loosen as they grow, especially in the first year, so if that happens before she outgrows her feeding issues/reflux then it may need to be redone/tightened.



Daddy and your brother seriously need some more estrogen to balance out the power in this household! Come home soon!



For those of you reading this with similar issues, I found search terms of "silent reflux" and "microaspiration" to be the best place to start, but had trouble finding anything written by someone who had a Nissen done on an infant with these specific and exclusive respiratory symptoms. I'm sure it happens, but the people who write about their Nissen experience are your typical refluxers who have been knee deep in vomit for a year or two with issues like failure to thrive and oral aversions and they are making desperate posts online. I take all anecdotal evidence I find on forums with a grain of salt, because it is not truly evidence and scientific articles are of the most value. Keep in mind that there are many Nissen horror stories out there, but the people who have had problems are a population that:

     1. Typically have more medically complex children where other things can be affecting their outcomes

     2. Are the people who are most motivated to follow forums and write about it. The folks that had things go great often move on with their life and abandon the interweb oversharing. :)

Dr. Treen assured me that they routinely do an upper GI series/manometry to rule out motility issues before they do any Nissen so they will know if a pyloroplasty or intestinal repositioning is in order. That was done this afternoon, and while I don't know results yet I'm sure they are negative. We already agreed she doesn't have any symtoms of motility issues, but I feel better that we are ruling it out for certain to avoid extra surgeries.



I told the doctor that I am accepting she won't be home by Christmas, but she told me that depending on whether we could get lucky and have an availability in the next few days it might still be possible. It depends on a lot of things. Laparascopy has faster recovery times and is safer, but if the surgeon decides that it is too risky because filling her tummy up with gas will put too much pressure on her diaphragm we'll do it as an open surgery with a longer recovery and more cool scars for her to show off. Mommy and Daddy have both had abdominal laparoscopy so here's hoping we will all have matching scars! It also depends on her breathing after surgery, because it is quite possibly she could go back on the ventilator for a few days. But then again she might not need it at all. As usual, Tara is in charge and running the show here and I'll just have to see whether she decides to celebrate the holidays at home or not. We'll find a way to celebrate no matter what! As for Vivek he will be content just to stare at the Christmas lights.



I'm hoping for a button style to be put in right away, but it is very common that  PEG tube is put in first and once the stoma heals a 3 months or so later they replace it with a Mic-Key button or Mini One button. Picture of the PEG below:

As you can see, the PEG is temporary for a reason. It is a big bulky pain in the ass and difficult to hide under clothing and super easy for your grabby little baby to pull out with their tiny flailing fists. But whether we start with a PEG or not, I'm going to fight as hard as I can for the Mini-One button by AMT because due to the low profile and failure rates alone it seems far better than the standard Mic-Key button.

	Mic-Key® Balloon	Mini ONE® Balloon
Time to First Balloon Failure	62 hours	500 hours
Time to Last Balloon Failure	185 hours	2038 hours
Average Balloon Lifespan	98 hours	1187 hours

It seems like the Mic-Key winds up needing replacement due to ballon or other failure every 3 months or so. Here is a video that showed me what replacing it is like, and it is less scary than I thought. The baby certainly doesn't seem to be in pain.

Once we find out availability we will meet and consult with the GI surgeon who will do both procedures at once. I'm hoping for a real asshole. I believe that all the best surgeons are assholes. Bad bedside manner but an excellent mechanic. Those docs with a good bedside manner can compensate for not being as good, but a real jerk is still in the business for a good reason. :)

We will still be bottle feeding and use her G tube to finish off. She has a new time limit of 15 minutes to help reduce the risk of aspirations during swallowing, but when she wants to she can suck down a full 45mL during that time frame out of her 75. I'm hoping we can slowly increase bottle feeds and keep her very oral, but I have no idea how long it will be until she can be fully bottle fed. I do know they typically keep a G-tube in for 6 months after last usage before removal. The stoma heals up pretty quickly by most reports.

Today I decided to spur on my newfound positive state of mind by purchasing some G-tube covers off of Etsy. Here are the ones I ordered: http://www.etsy.com/shop/MakeLemonaid  I like these ones with covers better for grabby little hands at http://www.feedingessentials.com/#!shop-online, but I'm going to see if a crafty friend can help me make some more. Here is a link to a great website with every G-tube cover you can buy.

http://www.feedingtubeawareness.org/Gtube-Pads.html  And there are also belts to hold tubing secure on this website, which are especially necessary if your child has a GJ and/or is continuously fed or fed at night and could get tangled up.

I’m trying to learn what the best fabrics I can buy are and how to avoid edges and lots of stitching especially near the center. Stomach liquid leaking can absorb and dry and then stick, and you want absorption but not sticking. Absorption is important because the stomach acid can leak out the edges and cause irritation, infection, and some raised red skin called granulomas. The G tube covers serve the same purpose as gauze or makeup sponges folks use for that purpose, but are way more fashionable! My princess needs her tube to look FABULOUS!

I plan on emptying the hat/shoe/sock drawer in the high boy and making that the G-tube supply drawer. I have a new shopping list so that we'll have everything we could possibly need when she comes home and can experiment and see what works best. The following website helped me get some ideas:

http://hydranencephaly.com/Care/tipsandtricks.htm

My personal favorites are meat tenderizer and flat coca cola for breaking down protein to clean out tubes, and clear nail polish to paint over syringe markings so the lines and numbers don't rub off after constant usage and sterilization. There is a lot more that I have yet to learn, but I have a good start. And despite impending surgery, I'm feeling positive and relaxed about the future.