If any preemie Mom out there postulates the brilliant idea of setting two doctor/specialist/follow up appointments a day for two weeks to "get them out of the way" I urge you to read and follow the below instructions to the letter:
1. Go into the bathroom and look into the mirror. Gaze deep into your own eyes and silence your mind.
2. Slap yourself as hard as you can.
3. Scream "STUPID STUPID OH MY GOD NO DON'T DO IT YOU IDIOT ARE YOU CRAZY?!!?!!!!"
4. Repeat as necessary until you cancel over half of the appointments.
I would offer as a general rule: Any goals you have planned on any given day, if you accomplish anywhere near to half of them...consider your day a roaring success!
It's not to say the last three weeks were without many highlights, and pictures speak louder than words so I'll share a few of the bounty I've taken amidst the chaos.
The beginning. The peaceful image I pictured stay at home Mom-dom to be.
Reality sets in. The unecessary wardrobe changes to accomodate the piles of cute clothes and picture sessions to make up for lost time are great. The 2-3 episodes of 30-45 minute inoconsolable crying sessions per day due to severe gas pain from G-tube continuous feeds with little ability of vent are...not so much.
Yet despite the difficulty of straddling the line between Mom and Nurse, I think I handle it pretty well and find moments of joy amidst the regimented schedule of care and tasks and rapidly increasing number of doctor appointments. I never feel bitter or deprived of "how it should have been..." We go for our first jaunt in the jogging stroller as the weather is improving, because I am determined that no feeding pump or oxygen tank should make a baby or her mother a prisoner under house arrest. They love the fresh air and her R.A.D. does not react to it! We bought this house for the lake and miles of jogging trails around it after all...
We have a few visits from friends and family.
Agemate Armaan and his wonderful mother Preeti
(Vinnie's cousin) come visit and we bond over
babies now that our individual NICU journeys are
finally over.
Aunt Jan, a lifelong asthmatic herself, helps with one of four daily breathing treatments.
Cousin Amber and her beautiful daughter Naomi with Tara
Cousin Amber, Naomi, and Vivek
Vivek playing with my bestie Erika
It becomes rapidly apparent that my son is a huge flirt. And to make matters worse, when he occasionally gets a glance at the TV when I'm not careful, he is typically trying to get a view of a pretty girl it seems. I'm already worried...
Thankfully we have a great system going now that involves me going to bed early and Daddy staying up later. There is a changing of the guard around 2am and we both wind up getting enough sleep. They sleep through the night, though we have to do a breathing treatement and a feeding bag change, and wake him up for at least one bottle as we have upped his calories and are trying to get more chub on him. She has the G-tube advantage though, so they actually dropped her calories since she is getting so pudgy!
We find occasional nap time is in order....
...especially when on rare occasions our "sleep throught the night system" fails. Thank you again, early teething fairy!
But every morning at 8:00 there is a flurry of activity with Tara's medical needs and Vivek's hungry tummy and piles of diapers and mixing fresh formula in different concentrations for each baby.
Mornings start much earlier than that most of the time because I usually have a Dr. appointment at 9:00am and have to rush to get everything done and packed and get babies loaded up!
Thank God they love car rides and sleep through them. I've gotten packing these babies up down to a science. The stroller all packed up is a monstrosity that defies description, and barely fits in elevators.
But the view on a foggy morning on the greenbelt that surrounds our house as I load up the car with all the gear always gives me a moment of peace.
Meanwhile the babies are noticing each other more and more. They are still too young to interact much. Vivek is in a hair grabbing stage, but fortunately I made it to the playmat just in time so the sibling relationship is still intact.
They are both teething early. Apparently they don't like to do anything in the expected time frame. Teething sucks, especially when your mouth is too small for teething rings and you don't have the coordination to hold one up to it anyway. We are coming up to a month of bad teething symptoms and still no teeth. We had four days were Vivek fought against his bottle, and it took five people to finally get one down him after 9 hours and me nearing panic. Turns out I handle all her problems well, but when my boy throws me for a loop I fall apart. Apparently one baby with health issues is all I can handle, but thank God for family support!
They constantly nom on their hands now, and one of these days I think Vik may get his entire fist in there. He has also discovered his hand and loves to stare at it, but only his left one. I'm waiting for him to figure out that there is one on the other side. He has now learned to place his hand gently on the bottle instead of forcefully grabbing it and knocking it out of his mouth then angrily screaming at me like it is my fault. And unfortunately she has also gotten defter at being grabby and handsy, in the sense that she can now play with and push away the mask and tube during her breathing treatments!
Tara is all about sucking on her index finger constantly, and lost interest in the pacifier. She likes to wring her little hands together. Lately she is all about lifting up her dress with one hand and sucking on the finger of the other. My usual view of her as she sleeps pictured below:
Unfortunately things fell apart during Vivek's days of bottle refusal, and suddenly Miss Tara has develped a bad oral aversion out of nowhere. I don't know if she has just figured out that it is work and the G-tube is easier, or if her finger now satisfies her craving to suck. That has me more frustrated than anything, so now we have total bottle refusal and upping feeds in a few weeks will now involve a therapy team and feeding clinic. Sigh. I'm a little down about that development, because she aced her swallow study (as shown below) and her feeding clinic eval by the speech therapist was glowing, even though she was having a bad RAD day and was pretty tachypneic. She was cleared to use no thickener and up feeds as soon as her G-tube feeds are weaned down to bolus in the coming weeks. We have started that process, but it came a little too late so here's hoping she learns to love the bottle again soon! The speech therapist comes on Monday, and until then we are trying to remove all negative associations and "play" with the bottle and nipple.
Miss Tara had 7 professionals gathered around waiting on her, but she had some gas and they started to call it off. A few toots later we were back on and everyone rushed around to re-prepare the test. It is rather funny to see so many folks all waiting on the whim of a baby!
I manage a mini-photo session on one of the few days we had only one appointement.
"Oh...hey there other baby!" Have you been here all this time?"
They can both sit up now with a little more support, so they are able to get some time in the Bumbos now, though she gets tired sooner. Tummy time is still a battle, despite trying every iota of advice from friends and all the developmental specialists who have finally had a chance to assess them both. Getting 25 minutes a day is so hard when she would rather socialize than exercise and 30 sec-2 min increments are all we can manage before she hits meltdown mode.
Her fine motor and expressiveness is slightly behind, but is all explainable from her hospitalization and not a developmental defecit from her prematurity. I was told that it is more like she is starting at month 1 from the date of hospital release, so not to worry. She qualifies for ECI (Early Childhood Intervention State services), but he tested at or above age level in all areas and doesn't even qualify for the program! We are relieved and optimistic about the future. But Miss Tara is so interested in people and not toys and isn't the natural wiggle worm that he is, so getting her to participate in her exercises is a little tougher and involves different tactics. She is finally rolling to her side, and he can roll from tummy to back!
They finally went to their first pediatrician appointment together with both Mommy and Daddy present, because before that it has always been just one of the twins. I had done one surgeon follow up with her and Vivek by myself, and vowed never again to go to the doctor with both babies without a 2nd person if I could avoid it. They both had waiting room meltdowns. I got many looks of pity and lots of help from strangers! I thought surely with both parents at the pediatrician appointment we were good to go. I'll admit I was a little judgy when I saw that my brother and sister-in-law brought their nanny to the pediatrician with their twins. Now I am just pissed that I didn't think of it first and don't have a nanny to bring! All is well until the Doc comes in and they then both start screaming and messing up diapers the entire 30 minutes we are trying to communicate vital medical information and juggle paperwork. But before the screamfest I did get a cute pic and video of them showing off their super-toned baby physiques!
Meanwhile I am pulling myself back together now that the appointments have finally slowed down. Many of them at the tail end were for Vivek to re-test his vision and hearing to satisfy my pediatrician, since that was all done in India where the records leave a lot to be desired. The bulk of the appointments from now one will be once a week for him. He has been recommended to get a helmet to correct his head shape. Unfortunately due to his position in the womb as a twin, his prematurity, his positioning due to reflux (unable to be flat on his back with head able to go side to side), and getting held less since she is home and requires so much care and attention due to her medical needs....it was unavoidable. I still manage to feel guilty despite the reassurances from the great folks at Cranial Technologies. But seeing nothing but twins in the waiting room though did help drive the point home that there was nothing I could have done to prevent it. I still find his mishapen head adorable in the pics they sent me from the headscan and cranial evaluation. He has moderate brachycephaly and plagiocephaly and it should be entirely correctable in 2-3 months of wearing the helmet. I have some cute plans on how to decorate it!
I am trying to take better care of myself now that the appointments have slowed down, and taking small steps to move forward in my career soon. Hopefully more on that front soon. Meanwhile Daddy is working overtime every week for over a month, so I'm usually by myself. I've realized the only way I'll get pics with the babies is if I take more "selfies" so here is one.
It is a whole lot easier to take photos of adorable babies when most days I've turned into a no-makeup, sweatpant-wearing stereotype. I'm starting my P90X again and daily food tracking on my Livestrong Daily Plate app, and if it stops raining we'll go out in the jogging stroller more. Mommy needs to take better care of herself!
Mommy...you should probably take a shower. Soon!
In other news, the final medical bills for Miss Tara finally came in. I take everything bad I ever said about United Healthcare back. (For the most part!) Our portion of the hospital bill was $13.32, out of a total of over one and a quarter million for two months in the NICU!!! We pay a larger portion of the bill to the neonatologists group, but that still barely totals over $3500. The last bill to come in was for the AMR ambulance transport, but it stated that insurance didn't cover it. Since the AMR rep called me twice about billing issues and sounded like a nincompoop beforehand, I anticipated there would be a problem. After an hour on the phone to my insurance company and AMR we determined they used an incorrect billing code. Turns out they deny "maternity benefits" when you code a 3 month old baby as a pregnant woman! That is being resubmitted as we speak. I also got a call from a collections agent about the ER bill, which I was still waiting on. turns out the jerks had our address wrong and made no other attempt to contact us despite having our info to call us or our insurance company. i did lose my temper on that phone call so that got fixed pronto! So by the time she is 1 year old if you total up the cost of surrogacy and India NICU care and all the specialists she now sees, with the portion paid by our insurance she will surely be the $2 million dollar baby! Below you can see what $1,265,822.12 in American healthcare looks like, and I think you'll agree she is worth every penny!!!
The last thing I'd like to share is that I'm very angry and very relieved to learn about the "decompression tube." I had been told with a G-tube by other experienced preemie parents online to vent, vent, vent! But with continous feeds that is hard to do. Before her NICU discharge I had been concerned about their haphazard education on how to do G-tube care. They thought it was odd that I asked if they had a checklist or lesson plan to go over with me to make sure we covered everything. They were unfamiliar with the BARDs ince it was the first one they had seen. I was given a big booklet of generic information not specific to the BARD. During a late night call to home health nursing about the problem, I was told how to use a giant syringe in a cumbersome procedure to pull out everything from her tummy, remove the air, and put it back in. Doing that every few hours and constantly sterilizing the syringe was not very workable, and seemed to upset her more. Instead I just pulled the plug end often and popped it back in, hoping the "pfffft" of air I heard would offer some relief. But the gas pains continued. I had talked to multiple doctors and nurses about the gas problems she is having daily over the past two months. What I had not been told by anyone was that there is a one way valve in the BARD button and there is a special decompression tube designed to vent the tummy. It turns out we already had one in the sealed BARD replacement kit we were given in case it somehow came out and we had to go to the hospital for an emergency repair. After talking to all the doctors and nurses abou the problem, it was the developmental specialist at that insisted that even if it wasn't a Mic-Key button there is probably a one way valve and there should be some kind of decompression tube provided. Thank you!!!! The first time I tried it I was shocked at how much air came shooting out! No wonder she was in pain!!! Here is hoping that instead of multiple daily screaming fits with no way to comfort her, this will be more of what we see in the future!
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.
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."
Mornings start much earlier than that most of the time because I usually have a Dr. appointment at 9:00am and have to rush to get everything done and packed and get babies loaded up! 
Meanwhile the babies are noticing each other more and more. They are still too young to interact much. Vivek is in a hair grabbing stage, but fortunately I made it to the playmat just in time so the sibling relationship is still intact. 
Unfortunately things fell apart during Vivek's days of bottle refusal, and suddenly Miss Tara has develped a bad oral aversion out of nowhere. I don't know if she has just figured out that it is work and the G-tube is easier, or if her finger now satisfies her craving to suck. That has me more frustrated than anything, so now we have total bottle refusal and upping feeds in a few weeks will now involve a therapy team and feeding clinic. Sigh. I'm a little down about that development, because she aced her swallow study (as shown below) and her feeding clinic eval by the speech therapist was glowing, even though she was having a bad RAD day and was pretty tachypneic. She was cleared to use no thickener and up feeds as soon as her G-tube feeds are weaned down to bolus in the coming weeks. We have started that process, but it came a little too late so here's hoping she learns to love the bottle again soon! The speech therapist comes on Monday, and until then we are trying to remove all negative associations and "play" with the bottle and nipple.
They can both sit up now with a little more support, so they are able to get some time in the Bumbos now, though she gets tired sooner. Tummy time is still a battle, despite trying every iota of advice from friends and all the developmental specialists who have finally had a chance to assess them both. Getting 25 minutes a day is so hard when she would rather socialize than exercise and 30 sec-2 min increments are all we can manage before she hits meltdown mode. 
Her fine motor and expressiveness is slightly behind, but is all explainable from her hospitalization and not a developmental defecit from her prematurity. I was told that it is more like she is starting at month 1 from the date of hospital release, so not to worry. She qualifies for ECI (Early Childhood Intervention State services), but he tested at or above age level in all areas and doesn't even qualify for the program! We are relieved and optimistic about the future. But Miss Tara is so interested in people and not toys and isn't the natural wiggle worm that he is, so getting her to participate in her exercises is a little tougher and involves different tactics. She is finally rolling to her side, and he can roll from tummy to back!
It is a whole lot easier to take photos of adorable babies when most days I've turned into a no-makeup, sweatpant-wearing stereotype. I'm starting my P90X again and daily food tracking on my Livestrong Daily Plate app, and if it stops raining we'll go out in the jogging stroller more. Mommy needs to take better care of herself!
The last thing I'd like to share is that I'm very angry and very relieved to learn about the "decompression tube." I had been told with a G-tube by other experienced preemie parents online to vent, vent, vent! But with continous feeds that is hard to do. Before her NICU discharge I had been concerned about their haphazard education on how to do G-tube care. They thought it was odd that I asked if they had a checklist or lesson plan to go over with me to make sure we covered everything. They were unfamiliar with the BARDs ince it was the first one they had seen. I was given a big booklet of generic information not specific to the BARD. During a late night call to home health nursing about the problem, I was told how to use a giant syringe in a cumbersome procedure to pull out everything from her tummy, remove the air, and put it back in. Doing that every few hours and constantly sterilizing the syringe was not very workable, and seemed to upset her more. Instead I just pulled the plug end often and popped it back in, hoping the "pfffft" of air I heard would offer some relief. But the gas pains continued. I had talked to multiple doctors and nurses about the gas problems she is having daily over the past two months. What I had not been told by anyone was that there is a one way valve in the BARD button and there is a special decompression tube designed to vent the tummy. It turns out we already had one in the sealed BARD replacement kit we were given in case it somehow came out and we had to go to the hospital for an emergency repair. After talking to all the doctors and nurses abou the problem, it was the developmental specialist at that insisted that even if it wasn't a Mic-Key button there is probably a one way valve and there should be some kind of decompression tube provided. Thank you!!!! The first time I tried it I was shocked at how much air came shooting out! No wonder she was in pain!!! Here is hoping that instead of multiple daily screaming fits with no way to comfort her, this will be more of what we see in the future!
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. 