How Preemie Moms are Chosen

I'm not someone who believes things always happen for a reason or that "God won't give you more than you can handle" or that there is predestination involved in picking preemie Moms. I just think sometimes bad stuff happens to good people, but with God's help we can find our own reasons. The most beautiful example I've heard of lately is at http://teenytears.blogspot.com/2011/07/welcome-to-teeny-tears.html  These amazing women have lost babies due to stillbirth and late miscarriage, and have channeled their grief into making tiny diapers so that parents may dress their tiny angels in size appropriate darling diapers and bereavement blankets.

That being said, I was moved by some of the things I read in this Erma Bombeck piece.

 

How Preemie Moms are Chosen

By Erma Bombeck


Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. 

As he observes, he instructs his angels to take notes in a giant ledger. 

"Beth Armstrong, son. Patron Saint, Matthew. 

Marjorie Forrest, daughter.Patron Saint, Celia. 

Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity. 

"Finally, he passes a name to an angel and smiles. "Give her a preemie. 

"The angel is curious. "Why this one, God? She's so happy." 

"Exactly," smiles God. 

"Could I give a premature baby a mother who knows no laughter? That would be cruel." 

"But does she have the patience?" asks the angel. 

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. 

I watched her today. She has that sense of self and independence so rare and so necessary in a mother. 

You see, the child I'm going to give her has a world of its own. 

She has to make it live in her world, and that's not going to be easy." 

"But Lord, I don't think she even believes in you." 

God smiles. "No matter, I can fix that. 
This one is perfect.She has just the right amount of selfishness. 

"The angel gasps, "Selfishness?! Is that a virtue?" 

God nods. "If she can't separate herself from the child occasionally, she will never survive. 
Yes, here is a woman whom I will bless with a child less than perfect. 

She doesn't know it yet, but she is to be envied. 

She will never take for granted a spoken word. 

She will never consider a step ordinary. 

When her child says 'mama' for the first time, she will be witness to a miracle and know it. 

I will permit her to see clearly the things I see ignorance, cruelty, prejudice and allow her to rise above them. 

She will never be alone. 

I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." 

"And what about her Patron Saint?" asks the angel, his pen poised in the air. 

God smiles. "A mirror will suffice."

A Preemie Mother's Oath

Also copied from www.lifeafterNICU.com

Preemie Mother's Oath

I have sat in the NICU and waited.
I have cried and prayed.
I have endured.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.

Whether I parent a preemie with physical challenges or medical issues, I will not be careless with my love.

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.

Yes, I will be a wonderful mother.

- Author Unknown

You Know You're a NICU Parent if...

I copied this from a great site/Facebook page www.lifeafterNICU.com

You would be excited about...

• increased feedings.
• 5 grams of weight gain.
• O2 levels.
• an inch in length.
• seeing the eyes of a 4-week-old for the very first time.
• poopy diapers
• graduating beds.
• going to the intermediate nursery.
• dread walking out of those doors to go home to sleep.
• 10:00pm or 5:00am phone calls to let you know your little one did something good/new.
• going to the hospital (hey, we get to see our kids!).
• CPR classes (they're coming home soon!).
• outgrowing clothes.
• hearing your baby cry for the first time, weeks old and crying just as hard in joy.

You know...

• the fear of seeing your child for the first time.
• that Brady's are not referring to the Brady Bunch.
• what CPAP means.
• the pain of not holding your child for days
• the workings of an isolette.
• what each beep means.
• how important kangaroo care is (to baby and mom/dad).
• that a parent's job is to fix whatever hurts their child - and know the pain of realizing you can't.
• what a PICC Line is.
• just how important surfactant is, and what it is for that matter.
• and understands the realism of adjusted ages.
• what it feels like to cry the first time you see your baby in a crib.
• the agony over sending birth announcements. 
• how amazing tiny fingers feel clenched to your hand.
• the pain of hearing a woman in her third trimester complaining about her pregnancy, and wondering that that would be like.
• and finally understands the metric system.
• there are no choices in the NICU - you have to be strong. 
• cracked and bleeding hands from washing them so much and coating them constantly with hand sanitizer.
• how hard it is to trust 100+ people you have never met before care for the child for whom you have waited a lifetime.
• what it's like to argue with each other over who changes the diaper - because you both want to - its a chance to touch your baby.
• every inch of their NICU, what walls they cried against, what nurseries they 'lived in', what shifts each doctor, nurse, therapist, and staff member works.
• that you will be a germaphobe for at least the next 2 years, people will think you are weird, and you will know you are literally saving your child's life.
• 50 nurses by name, and their kids' names.
• can give better directions to the cafeteria, gift shop and parking lot than the employees.
• that every day in the NICU makes you one of the lucky ones.
• just how important each new day is and how much significance a new day holds. Sure, every day to a parent of a healthy, full term baby means a lot, but we go in not knowing... and that is scary.

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.

And the NICU roller coaster hits a a new low...

So Sunday night I go in for a bottle feed after seeing two separate wheezing/aborted bottle feeds/crying episodes that had caused some of my anxiety in my previous post. I had a message on my phone that earlier in the day her airway had seemed "more reactive" and they were considering putting her back on steriods. When I walk in the room I see she is back on oxygen. And not the low flow kind either.

I lost it. It had been building for a few days, and I could no longer clamp it down. The nurse must have thought I was usually like this. It embarasses me to get so emotional, but I guess I should be proud that I kept it together for over a month of this mess. I almost had to call my work and ask for more time to come back from my lunch break because I couldn't pull it together.

So the next day I am armed with a dozen questions about RAD that all boil down to "what the hell is happening to my daughter!?"  I wait at the hospital 2 1/2 hrs in the morning in vain, because the doctor was too busy to talk to me. I go home to relieve my husband so he can go to work, and I'm unable to sleep. I exhaust my poor mother on the phone pouring out my frustration and fears.

But then the doctor calls me and has exciting news. He thinks she may not have RAD at all and have a "floppy" upper airway that is the cause. It could have gotten irritated by us upping her bottle feeds, so tomorrow he is having an ENT (ear/nose/throat) doctor do a bronchoscopy to examine her upper airway for any problems. He also thinks her reaction to her meds is not as typical as it should be if she really has RAD.

I realize that if she has one of these problems it could me an a G-tube, but at this point I'll take it if it means she can breathe better without all this reactive airway mess. I'm actually excited that something may be wrong with her upper airway, believe it or not. But the ramifications were less scary by far, so I had my fingers crossed for the next morning. I did six hours of research and was armed with the following list of questions, of which I was well educated on each and ready to expand upon if needed:

1. Did the ENT find trachomalacia/laryngeomalacia/pharyngomalacia or subglottic stenosis?

2. Would you classify it as mild, moderate, or severe?

3.  Is it congenital due to her prematurity, or aquired from the pneumonia/RAD? Perhaps a mix of both?

4. What would be the most conservative to the most aggressive treatments, and what are you recommending? (I had extensively researched each of the following treatment options)

• Growth/time to allow her to grow out of it. That would mean a G-tube.
• Aortoplexy. If you do an aortoplexy do you also do a concomitant intraoperative bronchoscopy to verify placement?
• Stents: If I am understanding correctly this is a temporary measure for a few weeks and not a viable solution.
• Slide tracheoplasty. Probably a more extreme option not necessary for her issue.
• Supraglottoplasty

So I am ready the next morning. The doctor finally calls, and to my dismay tells me the ENT found nothing. Dr. Treen wants to do a G-tube with a Nissen fundoplication. http://www.pedsurgwmi.com/resources/8704-Nissen-feeding-tube-bro.pdf

My heart sinks, but I had a list of questions for that possibility too, because while I am onboard the G-tube bandwagon I have reservations about the Nissen.

1. If she is likely to outgrow reflux, isn't a Nissen a permanent solution to a temporary problem? I don't see that a reversal/take down procedure is ever done, and I don't understand how babies can "outgrow" and the Nissen can "relax" physiologically. I didn't really get this one answered directly because she expanded upon the answer and I got overwhelmed.
2. Aren't fundos done in the first year often redone due to failures? Yes, but does it matter if she really needs it?
3. Has she seen a GI specialist to confirm the necessity of this and rule out other issues?   What about a PH or impedence probe study, upper GI series, manometry to rule out motility issues? She answered no, that she sees no need to based on what we already know.
4. Do you do one without the other often? (In the past they were always done together, but new research has them being done less and less in conjuction and dependent on the individual child's issues.) Dr. Treen confirmed she has done her research by telling me she does them together less and less, but is certain that in Tara's case she needs both.

I thought I was prepared, but the doctor's answers made my head swim a bit and I was more than a little upset that my daughter may now need a major surgery. She was so certain that Tara needed it. But her explanation left me a little confused, and it wasn't until hours of thinking and research later I could understand why and how to rephrase my questioning. It seemed that folks who have Nissen's done only sing the praises when their kids had severe reflux with the typical vomiting symptoms that it cured. And they typically get them at 1-2 years old after other medical management has been tried and failed. My daughter doesn't have the typical GERD symptoms, but I suspect and have not had the doctors confirm that her respiratory issues are very GERD related. If so then I am on the Nissen bandwagon. But if not, it seems like maybe too major of a step based on a possibility and not an inevitability. The diagram below trees the expression of GERD, and I can checkoff next to nothing on the left side but at least 6 on the right side in my amateur assessment.

The doctor seemed to be saying that because a G-tube increases the risk of reflux due to the balloon decreasing stomach size and the swallow study showed that thin liquids (i.e. formula in her g-tube diluted by gastric juices then refluxed) cause her to aspirate, then we should do a Nissen  fundo to prevent that from being a concern. But in my mind if she is not currently having silent aspirations and severe reflux issues, it may be a little too prophyalactic.  But then again is the risk of a major aspiration and repeat hospitalizations for aspiration pneumonia to high of a penalty for failure in this decision?

So here is my new list of questions. I am trying to not be "that mother" that asks idiotic questions based off Google and doesn't listen to an experienced and well educated doctor. I just want to make an informed decision and understand it well, and Dr. Treen seems to recognize that when I asked for some time to discuss it further with my husband. She assured me it is a decision she does not take lightly. I'm sure the answers to some of the first questions will answer the latter, but I'm having trouble wrapping my head around it enough to make it less redundant.

Questions for the Doctor:

Bottom Line; If her respiratory symptoms are already significantly affected by GERD then we are on board with the Nissen Fundoplication:

1.    Did swallow study confirm GERD and not just aspirations during feeding or has that diagnosis been confirmed here due to respiratory symptoms? Would you object to an impedence probe test before we go ahead with Nissen?

2.    How controlled do you think her reflux currently is on Prevacid and positioning? Do we think that silent/secondary/reflux aspirations are strongly related to her RAD symptoms or solely aspiration during longer/more frequent feeds we did recently?

3.    Trying to understand why bottle feeds create the exacerbation…..what is the RAD reacting to exactly if ENT says upper airway is normal and no reflux irritation? Can you confirm that the respiratory exacerbation we were seeing the past few days was upper respiratory and not lower? Do you deduce it was reflux related?

4.    It seems like we are doing this prophalactically for what could occur, and not based on confirmation that she has already been having silent/secondary/reflux aspirations. Is that incorrect?

5.    Have we ruled out a motility problem/pyloric stenosis by symptoms? If not don’t we need to do a gastric emptying study, so that we’ll know if a pyloroplasty is in order along with the Nissen?

6.    Why do you think a GJ tube is a bad alternative to the Nissen in her case?

7.    How experienced is the surgeon that will be doing the Nissen/G-tube? Can we meet them? We would like to discuss the AMT Mini-One button option as an alternative to the Mic-Key and whether laparoscopy is possible because of her respiratory status.

8.    How will we know if Nissen was successful? Since she has atypical reflux symptoms, will it just be lack of repeat hospitalizations for aspiration pneumonia? (Most people singing the praises of fundiplication are those with typical vomiting behaviors that are seen to reduce, which she doesn’t really seem to have)

9.    How exactly does a Nissen “relax” and a baby “outgrow” it? What happens physiologically?

10.  With RAD, is it adversely indicated if I even take her for a short walk in the stroller outdoors with no people contact? Should we never leave the house except for Dr. appts?

11.  Why are the doctors and nurses so much less alarmed than I am at how low her oxygen dips during crying fits/wheezing? Do I need to drop everything with my son and spend however long calming her down every time?

Some of the research I did came up with these two tidbits that made me think she already has reflux respiratory issues that are signifcant, and even if that is not the case she could be at high risk from her RAD treatment meds and tachypnea episodes.

·         Many of the modes of pharmacotherapy for a reactive airway, including beta adrenergic agonists and xanthines, can lower LES tone, thereby increasing the propensity for reflux. Also the increased negative intrathoracic pressure from coughing and wheezing and the increased negative intrathoracic pressure from hiccups and stridor can exacerbate reflux.  Winter HS Gastroesophogeal Reflux. Comprehensive Therapy 1989; 15 (2) :  6-10

·         45% of coughing reflux episodes were non-acid reflux. I wonder now how much of her coughing is because of reflux instead of RAD. And non-acid reflux will be missed on a PH probe test but the newer Impedence probe test will capture it.

 I've probably been to 10 times the links I'm including below, but these are some easier to understand articles and anecdotal stories that were helpful:

http://www.jaoa.org/content/100/12_suppl/11S.full.pdf

http://www.ipeg.org/education/guidelines/gerd.html 

http://www.feedingtubeawareness.org/Nissen-Fundoplication.html

http://articles.complexchild.com/july2011/00304.html

http://www.articles.complexchild.com/00009.html

 http://www.our-sma-angels.com/elizabeth/gtube_nissen_opinions.htm

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851633/

 I think Google should give me an honorary doctorate.

The Most Important Thing to Remember about the NICU....

The most important thing to remember about the NICU is that it will one day be over. I had been told that and it has been a mantra that has kept me going on some of my toughest days.

But this week as her possible discharge on Wednesday loomed, I found myself facing the reality that while her time in the NICU is hopefully coming to a close a lot more of the NICU is coming home with her than I expected.

There would be feeding pumps, NG tubes, breathing treatments, and multiple medications as well as weekly visits from home health nurses.  And if after a few months she did not progress her bottle feeding then there could be a G-tube placement.

It didn't seem as intimidating a week ago and all I wanted was my baby back so I wouldn't miss out on her life, but then as it loomed closer the reality of it is a bit more unverving. Thanks to http://www.feedingtubeawareness.com/index.html I was starting to see the possibility of a g-tube in our future as a more positive and temporary thing. Initially I saw it as a slippery slope to long term feeding issues that was only for "really sick babies." And I was certain my baby was not one of "them." But I'm beginning to accept that while it could be worse, RAD along with BPD and GERD are serious diagnosis that can cause some longer term issues that will complicate all of our lives. It sucks.

It's a mixed bag but it could be so much worse because I know of babies that go home on trachs and have much more complex issues. I tried to keep that in mind, but still felt down because my baby is going to have more struggles than I had hoped for. It still baffles me a bit that these issues were always present, but the initial NICU ride seemed so smooth and how she was 5 lbs ago did not seem to indicate what would come to pass.

I expected linear progress in bottlefeeding, but now I realize I was in denial and being a bit naive. I had seen her bottle feed like a pro, so once the formula was thickened to prevent aspiration issues she was having problem solved right?! Not exactly. Enter Reactive Airway Disease. I'm told that if her breathing was just fine she would probably be bottle feeding without a problem, but being the way it is it makes bottle feeding so much work that she is either incapable or uninterested for the majority of her bottle feeds. I was beginning to fear oral aversion and g-tube as more real possibilities. But then again, for at least two of her bottle feeds per day she sucked down all 75ml no problem. There is no way to predict the future and only our little Tara (who just hit 9lbs) holds the key to what happens next. Those of you that know me know I don't exactly thrive on  uncertainty.

I had a rough bottle feed the Friday night that did scare me, and I got to see her get worked up for no good reason and be difficult to calm down. The next morning it got worse and she began wheezing and I called off the bottle feed. The nurse concurred with my assessment, which helped me trust my judgement. But it just shows me that I'll be having to make some judgement calls with no nurse to guide me about whether to continue a bottle feed or not in the future. I wanted to push her just enough to progress her oral feedings and she doesn't become "lazy" and progressively resort to NG feeds, but not push her too much that I compromise her breathing significantly.

I thought the scariest part was that when she cries and gets worked up it causes respiratory compromise, so there is urgency in getting her calmed down. Her oxygen dips into the 40's and she sometimes stops crying just due to the exhaustion that causes. I"m trying to figure out why the nurses aren't as alarmed by it as I am. With my son I can reassure myself that he is okay and can go ahead and get the bottle ready knowing he is fine and will stop crying in a minute when I bring it to him. With her I have to respond immediately and there is no such thing as "crying it out" with her due to her respiratory issues. That is a freaking ton of extra pressure. Did I mention I have TWINS! My little man is going to have to cope on his own more than I wish he did, because if they are both crying for attention she will have to be the one that gets it for medical reasons.

I think I'm also mourning the loss of freedom. I'm trying to understand the "reactive" part of RAD and if by simply stepping out my front door I'm putting her in danger. Do I really only take them outdoors for doctor appointments only? For how long? Am I being irresponsible if I put them in a stroller and take an evening walk alone with no people nearby in April? What if I take them to a relatives house?

I was hoping to regain my excitement about her finally coming home, but  in the days before her discharge I was only feeling anxious and have so many unanswered questions about what the future holds and all the implications of her diagnoses. But then Sunday happened. Then Monday and Tuesday. And now it is Wednesday and in case you hadn't noticed there is no celebratory post that my baby is finally home.

The NICU journey is now far from over. Update to follow.