So things were progressing so well and I was making plans that little Tara may really be home for the holidays. But as usual she had a curve ball for us. I got a phone call that I just missed on my phone from the NICU on Tuesday in the late afternoon, with the doctor saying to call back because it was urgent. Not a message you want to hear. I called back and they tell me she has busted her stitches and her intestines are playing peek a boo. They covered it up with saran wrap, which makes a great occlusive sterile dressing, as well as tons of gauze and tape and stuff to hold things in place. She will have to be re-operated on to close the hole, to include general anesthesia and intubation. Again.
Fortunately Dr. Black who assisted on the first surgery was there and ready to go, and they got a new anesthesiologist on her case. I told them I would be there in 45 minutes or so and to pass along the info that she de-satted at the beginning and end of the last surgery according to Dr. Kadesky. I quickly dropped off my son at my Mom's house and a casserole off at a new mother of twins house that I had agreed to bring dinner to for the Mother's of Multiples Club. (Google "Blend of the Bayou Casserole"...it's fabulous!)
I made it to the hospital with a half hour to spare before surgery, running inside right past the anesthesiologist who was stuffing some last minute cookies down his throat in the waiting room. They had given her fentanyl again to keep her comfortable. This time I had a long time to talk to both surgeons and relax me. Everyone was baffled. They say this can happen with older babies after surgery, but is very rare. That's my girl! It could be related to starting feeds sooner, but her bloating from ileus the first few days seems a lot more suspect. Also the steroids can soften the skin and may have contributed. When they went in they found that one side held perfectly. Textbook. The other side was a raggedy mess.
They told me this time they would put in a double row of stitches, and since the surgery wasn't as involved she should recover and get extubated quicker. Dr. Black assured me it will make it like it never happened. Not only will the scar look the same, but for reasons I don't understand incisions after surgery don't really start healing for 5-7 days so it will not disrupt the healing timeline for her and she MIGHT still be home by Christmas. I appreciated very much that the anesthesiologist called Dr. Kadesky at home to ask about the de-sat he had told me about but was not mentioned in the surgery notes. Turns out it was only a 92% desat, but it was helpful to know about and she did repeat that pattern. I very much appreciated his caution and making that phone call!
Miss Tara less swollen, off pain meds, and feeling better. Right before she tore her little tummy!
I waited all alone in a waiting room at 8:00 at night, and the coffee machine was BROKEN! That's just cruel. It took about an hour, and all went well. As expected she came back to the room intubated, but this time it only took about 12 hours to get her extubated. I stayed the night at the hospital sleeping fitfully in the recliner next to her incubator. As of yesterday she is looking more comfortable, but not as happy as she was right before all this happened.
Thanks to my wonderful mother who kept our son overnight and my in-laws who came early the next day to help us get some extra sleep. Nonetheless today some of my hair started falling out in clumps. I didn't think I was that stressed, but apparently I am. Apparently it's not enough that I'm sprouting many grey hairs for the first time after this whole NICU experience...
With all the attention on Tara this week, I haven't taken any photos or videos of the little man. I made up for it today. He was wide awake and having a dance party on the changing table, where he LOVES to hang out. I'm not sure if it is the super cute and colorful wood mobile from my friend Karen or the way he can stretch out and flail his arms and legs around. I just pull up the rocking chair and watch. He is following people with his eyes and head and making more eye contact. He smiles more and I think I heard him laugh twice. I've started reading him books, and he seems to enjoy it. I have to say I'm alarmed at how many baby books are about animals and the noises they make. Isn't the goal to get them to make human noises?
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.
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."
So Dr. Treen calls me up in my usually groggy mid-afternoon state where I can't think of any good questions to ask and can't remember everything she said. It wasn't until that night that a nurse realized she was offering me the option of taking Tara home sooner with an NG tube (naso-gastric feeding tube) and continuing the bottle feeding re-training at home. I realized I'd missed my cue to show her our enthusiasm and dedication to that option, so the next morning I was determined to let them know we were all aboard and full steam ahead. I spent hours at the hospital with the doctor, the nurse, the social worker, and the respiratory therapist working on plans and getting the training I will need in breathing treatments every 6 hrs and CPT (pounding on her chest to drain mucus buildup) and NG tube usage. Fortunately the tube only needs to be changed once a month, and with a little luck she may not need it that long. Dr. Treen feels she could benefit from more consistent care, because a dozen nurses all learning her idosyncracies and bottle feeding the exact same optimum way is too tall of an order, thus her success seems to vary with each nurse.
She has completely kicked her nasty oxygen habit and is now a group leader at weekly Oxygen Anonymous meetings. She just got her one week sobriety chip. Now she just has to kick steroids, which was her downfall last time, before she can go home. Her last dose was today. We'll see how it goes. She also got her immunizations finally, and that can cause a small setback. But if both of those don't interfere too much we are on target to go home early next week after we finish all the plans and do a car seat study and "room in" overnight at the hospital.
Her pompadour of hair gets higher daily!
One of my favorite faces!
Thank God for all the support in the American medical system. The social worker does all the legwork with the insurance company getting the approvals and orders for the feeding pump (fingers crossed so that we won't have to rely soley on gravity to make the milk go down), the breathing treatment compressor and parts, and the NG tube and other accessories. She is also working to see if Home Health visits can be approved for nurses to come by our home and provide advice and coaching, and possibly even a Feeding Clinic at a local hospital that can work with us in overcoming her feeding issues. It is amazing!
Check out mah chins!
Occupational Therapists will come to our home and review the usage of all the machines with me in the beginning. The social worker also got our referral to the ECI (Early Childhood Intervention) state program to help them get developmentally on track, so physical and occupational therapists will come to our home for assessments and follow up and what I'm told is a ton of paperwork. Dr. Treen asked me to call my pediatrician and make sure she was onboard with the NG tube plan, since she will be monitoring us probably on a weekly basis. Fortunately she was comfortable with it. Add to that we will be making regular pulmonologist appointments as well. It will be busy. And we are planning to get my son circumsized during this time since I'll be taking two more unpaid weeks off work to get all this routine set up. Whew!
I have decided in some shots that my baby girl looks like Mo'Nique!
The nurse helped me mix up her formula with the Beechnut rice cereal as a thickener, and explained that we have to mix it in portions of 30ml or less. The nurses had discovered her success finishing her bottle in the 20 minute time limit depended on how fresh the mix was because the rice cereal gets thicker over time. I suggested we mix it further in advance with less rice cereal until it reaches maximum consistency so that we could avoid stopping the bottle feeds 1-2 times to re-mix more. However over time it breaks down and then becomes thin, so that won't work. Fortunately we have twice the number of small bottles as we do large ones, which we weren't using other than for med mixing since they only fit 60 ml comfortably and they eat more than that each feed. I'll just use two of them for every bottle feed for her and have the rice cereal ready to go in medicine cups. I'll just mix and move the nipple over to the next one lickety split. This means we still can sterilize every other day! Woo hoo!
Recognition and treatment of feeding issues was India's main failure, and I realize now they taught us how to bottle feed the exact wrong way. I'd been warned of this by a friend whose baby by Dr. Patel was also premature and stayed with Dr. Kothiala but was readmitted in the States, but not having had extensive coaching in alternative methods meant I wasn't sure how to modify what we were doing to prevent aspirations.We are making major modifications now to the way we bottle feed her not only because of reflux and aspiration issues, but because it is the correct way. We are mixing some of the Beechnut rice cereal with Vivek's bottles too and that has helped his bottle feeds go better and seems to keep the milk down with less vomiting. Things we are doing to bottle feed them better:
Feeding in an almost completely upright position. I sit her little butt on my leg, and it is an easy transition to burping position.
Burping in the middle of every feed and after. We didn't always burp Vivek as consistenly on his bad reflux days because it only seemed to result in a stream of vomit, but burping mid-feed may alleviate that somewhat.
Chin support. Putting a finger at the base of the chin with very gentle pressure to remind them what they are doing and maintain good suction seems to help.
Swaddling and limiting talking. During bottle feeding time you want to limit distractions and keep the focus on the bottle during her 20 minute time limit.
Recognizing that any coughing means an aspiration has already occurred and we have probably done something wrong. The main culprite is the twisting and tapping we were taught in India to keep them awake through a bottle to get a full feeding down. Verbal stimulus is better to keep them awake, but at a certain point pushing too hard transitions into force feeding and makes an aspiration more likely. On the same note, pushing the bottle out with the tongue, opening the eyes wide, pushing away with the hand are all signs that there is too much milk in the mouth or an aspiration might be occurring. Though to some degree when a bottle is re-inserted into his mouth he sometimes pushes it around with his tongue for less than 30 seconds before he decides to suck on it some more. When he has been refluxing badly sometimes he needs more encouragement to start sucking because it gives him a momentary oral aversion, but recognizing when you are crossing the line into force feeding is important.
Tara is currently eating 4 bottles a day and most of the time can get most or all of it down in her time limit. I think if I make sure her breathing treatments are scheduled after her bottle feeds at home I'll have more success, because she cries through them and it tires her out for the feed. Once she consistently finishes 4 then we can move to 6. Once we get 6 we can move to 8. Once she gets 8 consistently it is bye-bye NG tube! I do see it going this way rather than resorting to a more extreme G-tube (gastric tube directly to her stomach) but it will just take time.
Regarding my concerns about her tachypnea being a more long term issue, they did tell me that even though 60 bpm is the high limit for respiratory rates,the fact that hers is often at 80 is not something that we or the doctors India needed to be so concerned with. This is because it is more about how labored the breathing is and the oxygenation. She can breathe at 80bpm without working too hard.
I've noticed her head is getting a little flatter on one side, so I've asked them to flip her around the opposite direction in the crib. She always is looking out to where the people are, so this should help even it out before it gets too bad, even though the location of the wires and tubes makes this position a little less convenient. Dr. Treen told me that there is nothing to be worried about this early on and it can reshape itself soon, and we aren't necessarily looking at foam helmets and neurology appointments in our future.
It is not asthma, but shares some similarities. Asthma cannot be diagnosed until she is older and can participate in a breathing test, but she is at around a 30% higher risk for true asthma because of this. RAD along with BPD (bronchio pulmonary dysplasia) means she will have some breathing issues and tire out quicker during her youth. We have to be on the lookout for wheezing and tachypnea always. Some retractions are normal I've finally realized, partly because the chest is so malleable at this age. But I can clearly tell when the denting in of her chest becomes more extreme and her breathing is more labored than usual. Grunting during breathing is a bad sign as well. But ultimately the pulse-ox monitors Vinnie bought will be our guide before she gets to that point hopefully. Dr. Treen said that if she drops below 92% oxygenation consistently to call our pediatrician and take her to be evaluated. We also have to avoid all airborne irritants, to include colognes and perfumes, aerosol sprays, incense, and smoke. I plan on having a ceremonial fire in the fireplace this weekend before she comes home as a last hurrah. Being around smokers is bad for preemies, but super bad for Tara. Any smokers in the family will need to be freshly showered with freshly washed clothing and not have smoked before seeing her, and we may want to limit contact a bit.
Thanksgiving was a collosal Fail. Because of my nephew's fever and sore throat my in-law's celebration was cancelled. My Mom and I tried to salvage some of the holiday by eating what she had prepared with my Stepdad the next day. Our Thanksgiving feast consisted of way too much turkey for 3 people, gravy, sweet potatoes, and stuffing. But something about the stuffing was just WRONG. It tasted like something had gone bad and we had to throw the entire vat o'stuffing in the garbage. We tried to figure it out but were unsuccessful, but I personally think it was the giblets. The turkey had cancer of the giblet. But at least there was pie.
Vivek got to meet his Uncle Matt!
I was asked over the Holiday "Are you ready for her to come home?" My answer was not so much in the affirmative as it was "We can adapt to whatever comes up." In that sense we are ready. With all that is coming with her return home, especailly now with the NG tube, I don't think it is possible to be fully prepared for what is to come. Instead I think you rise to the occasion and instead of being ready and prepared you rapidly compensate for anything you didn't expect to happen. I think Vinnie and I have done a bang up job of that, and more and more I'm realizing that parenting is half preparation and half adaptation on the fly.
I have realized that our dog sees himself in competition on the social strata with our son, and it will only get worse as our daughter comes home. It is only a problem when Vinnie or I seem available to him for affection, so in true Cesar Milan style we can no longer give him affection with the babies around. He will try to place himself physically between us and the baby to assert himself and disrupt affection to the baby. I experienced this when I put Vivek on a floor mat for the first time. When I tried to push Ralph away he growled at me like I have never seen before. I pushed him away more assertively and growled and barked right back and that seemed to give him a clear message, and he kept a wide berth and waited for permission to approach after that. Treating the baby like a posession that he cannot touch is also another way to think about it, rather than the complexity of asserting the baby as "Alpha." But from now on my affection to Ralphie will be when the baby is not nearby.
Nobody loves me anymore. I think I'll just eat worms and sleep in the laundry basket.
Dadoo & Dadima have been amazing helping out as much as they have, making it possible for me to go to the hospital. It is wonderful to see how much they love our babies, and when I show them videos of Tara they laugh and talk to the camera like she is right there in front of them! I'm hoping once she is home we can develop a routine where we are not needing as much help, but right now it is essential to help us get through this difficult stage.
So I walked in tonight all bummed out, prepared to wait out another week of watching her agitated and in discomfort and not able to hold her. Instead I walked in to find out she had been extubated an hour and a
half previous! No more ventilator!
It seems like every time someone seems to put a limit on Tara she tries to show them up. I'm so proud of her. She is such a little fighter and the strongest little girl I've ever met.
Dr. Schwendeman said that after he told me yesterday about the one week wait he realized that we were performing this balancing act between controlling her breathing but suffering the consequences of the secretions the breathing tube creates and the sedation required due to her agitation. He decided to do an extubation trial soon before I arrived, and she did well and had her best blood gasses yet! She is on full feeds and they are discontinuing TPN IV nutrition.
The doctor asked me if she eats like she sucks on a pacifier. I asked what he meant, and he asked if she gulped. I told him YES YES YES. It has always been a problem but in India they did nothing to help us, and I let her pace herself because even though she gulped she seemed to catch up breathe before her pulse ox would dip significantly. After the 2nd Delhi hospitalization on my own I decided to pull out the bottle at set intervals to pace her, but they told me not to use rice cereal I had brought as a thickener just in case. He said that since that is the case he is not at all surprised that she wound up back in the hospital twice. He assured me that the occupational and physical therapists will help ensure that we have a way to deal with it, and when I questioned the charge nurse about it she told me a swallow study may be in order and they can use the rice cereal and special nipples to help.
This is one more thing that they did not do sufficiently in India, even though I know they had the capability to do a swallow study and had asked about it but was dismissed because they didn't think it was serious enough. I'm more mad that they never took a sputum culture, because I suspect the E. Coli had been present for some time.
Would I still have our babies in India? Of course...how can I say otherwise when I have to mostly healthy babies and my dreams have come true. Are you taking a certain level of risk if your children are born very premature and very low birthweight? Yes. Everyone hopes they are not the ones whose children suffer that fate, but you have no control over that outcome. Especially with surrogacy. Don't get me wrong...they can do a pretty good job. But I see now more than ever the differences between US and Indian NICU's and at the highest level of care India cannot compare.
I got to hold her for almost two hours. I sang to her and for about 45 minutes she stared at me wide eyed waving her arms around. I finally felt like I could comfort her. She is still agitated at times ad gets worked up, but it is easier to calm her. It was far more healing for me than her I'm sure, because the cavern inside me filled in just a bit and my hope of having her home soon lit up more brightly.
So Tara is back in the NICU, but this time we think we have a correct diagnosis that identifies the source of the bigger problem. Her breathing has been too fast ever since she got to Delhi, and the infection/bronchitis that brought her to the NICU the first time may have been related to this problem and not the virus I had tried so hard not to pass onto her. We think now the issue is "micro aspirations " related to her GERD (gastro-esophogeal reflux disease common in preemies). During gestational week 37 the week before last when we got to Delhi we discontinued the domperidone that treats GERD as Dr. Kothiala had recommended. Dr. Saluja asked if they were still throwing up after eating in regards to this decision, and soon after Vivek was so we put him back on it.
But Tara wasn't throwing up. Not fully anyway. After and perhaps during feedings she was throwing up a little but it never made it out her mouth and instead was going into her lungs a little at a time. It was very imperceptible, and perhaps we didn't realize it because in comparison to Vivek who is a grunty loud eater her feeding seemed peaceful and a cough or two seemed normal because he would typically cough once per feeding and need to be slowed down too. Then last night during the car ride to the ROP doctor she must have aspirated a larger amount because that is when the wheezing began along with a cough. It worsened overnight with each feeding and Vinnie and I spent the most worried night of our lives. It was partially worsening because she was so hungry from her previous stay at the NICU that she was always crying for more food, so we gave it to her and it exacerbated the problem because a full tummy made the reflux worse.
In the morning I was nearing panic, and while desperate to take her elsewhere other than Sir Ganga Ram NICU we realized there wasn't much choice and the situation was too urgent. I recognized she was in severe respiratory distress and I walked as fast as I could after Manu drove us quickly there. I blew past two custodians and security at the NICU doors and walked up to all the nurses and held out my baby girl to them and said "Tara!" Then Tara gave a wet cough and one nurse snapped into action and grabbed her from me. The nurse moved fast and they put her under an oxygen tent, and I went and sat down because I knew now she would be okay. Her oxygenation was in the 70's so we got there just in time.
Tests confirmed there is no fever or infection, and it is not technically aspiration pneumonia so she is being moved out of the "infection room" and into a normal room tonight. She will probably be there a few days, and upon her release first stop is the FRRO to apply for the VISAS to get the hell out of here. I plan to discuss the possibility of using the rice cereal I brought as a thickener for her feeds to help her reflux, which I'd brought because they did that as an option for my brother's twins in their NICU. Simply Thick is used for this purpose and is essentially xantham gum additives, but I'm told you can't use that until they are older. From now on she can be treated by more frequent smaller feeds, domperidone, and maintaining a more upright position at all times. I have no clue how I'll managed to keep her tilted during diaper changes, but I'll figure it out. Tonight when I visited her she was resting peacefully on her tummy, and has a nasal cannula of oxygen and is tube feeding to help her rest and recover. They said they could use CPAP if needed and sedate her because she was so hungry the crying was interfering with her breathing, but it looks like neither of those more extreme measures were necessary.
Vinnie and I put together all the documents we need and tomorrow we will fill out and print the application and make some copies of all of the passports. After the 11:30 counseling session with Tara's doctors we'll have a goodbye lunch with family for him. I've packed a bag of less essential baby gear for him to take home, and with all I'm leaving here or used up (diapers/wipes/formula) I should be able to travel home with minimal luggage. The end is in sight but I know I'm probably looking to fly out the week of the 22nd. It will be so much harder without Vinnie, but my mother-in-law is the rock that is keeping me sane because no way we could do this without her.
Now the only problem left to solve is that Vivek is getting too big for preemie clothes. I deply regret my decision to tell Vinnie not to bring newborn size clothes with him, because I figured they wouldn't get big enough to grow out of them before we got home based on their growth rate. Big mistake. Vinnie's solution was to cut off the bottoms of the onesies where it snaps, and cut the feet off of the sleepers to make room. I told him I wasn't ready to cut up all their baby clothes, so we have a few outfits left that are washed constantly that make up his small rotation of outfits. I have no idea why in the biggest city in India you can't find newborn clothes but only toddler sized, but I can only assume that it is because they just used diapers and blankets until the kiddo can walk.
So tonight when I'm making my 2nd visit to my daughter and singing The Rainbow Connection into her ear and pondering how I'm singing a song about faith when I have so little at the moment, the doctor walks up to me and tells me they are moving her out of the sick room of infected babies. I tell her that makes me happy, but why? She avoids the question. I ask why again. She then tells me they now think the blood culture was contaminated because they are all coming back completely clean now, and so she probably only had a viral infection in the first place. It was probably all a false positive.
You know that famous photo of the Navy sailor in the ticker tape parade who is so happy he grabs the nurse walking down the street and bends her backwards and plants a huge kiss on her lips? I swear I almost did it myself.
This means that under the original "viral infection" diagnosis she should be discharged very soon rather than 10-14 days! I'll get it confirmed with our primary doctor tomorrow at 11:30 counseling session, but they have to be pretty sure that her diagnosis was wrong to move her back into the regular NICU rooms right?!
Tara hanging out with her Daddy on the bed before her hospitalization
This begs the question....should we argue the charges for the dangerous and painful spinal tap procedure and the antibiotics that she never needed in the first place? I now understand why people sue for pain and suffering because I know for the past 2 days I've been suffering tremendously, as has the entire family. Manu had sage advice to wait until she is discharged and in my arms before we argue anything, but he or Shalini will be there with us to fight the charges. It is not unheard of for medical records to get doctored here after the fact for shady purposes, so we will definitely take his advice.
I chatted with a nurse tonight about bathing Tara because a ring of greyish skin that sloughs off is around her neck, and she said she is bathed every morning but she will be more careful and work on that spot and it make take a few days to get it looking normal again. She also told me they change the diapers every four hours, which suprised me because I change at every feeding at 2 1/2 hours and it is always wet or soiled. She did say if they smell a dirty diaper they go ahead and change it thank goodness! Can't wait until she is at home and can get the royal treatment instead of her supposed VIP status.
I would love to tell you that Vivek shows some sign of missing his sister, but frankly I think he is just basking in all the extra attention and loving every minute.
He is quite the drama king, and howls in agony before he passes gas. Tara simply scrunches up her face and turns to the right (always the right side for some reason) and toots then moves on like nothing happened. She will sit around in a dirty diaper for two hours without comment, but if his is more than a little moist he will let you know about it. Worse yet, he won't stop fussing until the diaper change is almost over and you are fastening the last snaps on his outfit.
Geeta gave us all the giggles today and came rushing in the room holding Vivek saying "Hairdo! Hairdo!" She placed him in my arms and I burst out laughing when I saw she had shaped his hair into a mohawk. She has been comforting me and trying to make me smile and laugh for days now, and I could see she was thrilled to finally suceed after cooking me special meals and offering soothing words and gestures even if I couldn't understand them all.
Mitlesh Auntie says she wants us to leave India with good memories from here. I told her we will...it's just we've been through so much for two months now and we are so homesick. I explained that when you come as a tourist it is a very different experience. You spend your time in search of entertaining things, and have fun with everyday experiences. Let's say you need something from the store. As a tourist in India that could turn into a several hour interesting adventure seeking something, taking in the sights and experiences and working through the challenges along the way. It's the sort of thing you laugh about and tell stories about later. When you have twin babies to take care of and need something and are most definitely not here to be a tourist, it simply a giant pain in the ass. Like the other day when it took Vinnie four hours to mail a letter. But I'll leave you with something cute I saw when walking home from the hospital tonight that struck me as a touristy moment. Next to the dumpsters were three cows sleeping with a small calf. But one of these things was not like the other. There was a stray dog that apparently thought it was a cow and was cuddled up next to the calf, and none of the cows seemed to mind.
So Tara is back in the NICU with a viral infection and on CPAP. It goes like this...
The last few days have been full of baby care and waiting and intense homesickness...so nothing really to comment on other than our growing worry about Tara. It started when we saw the neonatologist on Tuesday he asked us if she always breathed so deeply. It was the first time I'd noticed it...and I wasn't sure. But after that point it was all I noticed, to the point I started to think I was paranoid. Then on Thursday evening I thought it seemed worse. We even thought she felt hot like she had a temperature, but the earscan thermometer said she didn't have a fever. I now think the earscan thermometer is a piece of crap even though the instructions were written for babies and plan on taking a rectal temperature from here on out. Anyway, Friday morning Geeta and Vinnie both said they thought her breathing was more labored as well and I decided I wasn't crazy and said we should take her back to the doctor, so we made a doctor appointment for 6pm that evening.
Dr. Satish Saluja told us that she was breathing too labored and was exhausted doing so and wasn't comfortable. He felt like she probably had a viral infection, and her pulse oximetry needed to be monitored. I gulped. I knew there was only one place that can happen....back in the NICU. He wanted her hemoglobin checked and blood gasses as well as a chest X-ray and perhaps some other tests. We rushed home and packed diapers and wipes and changes of clothes and then went swiftly to Sir Ganga Ram Hospital which is a 10 minute walk from the house but a 2 minute drive.
The waiting room is not a fun place because Indians believe that someone should never be left alone in the hospital. This means someone is camped out in the waiting room 24-7, complete with luggage and folks taking up entire benches sleeping. Everything was "claimed" and the only semi-unoccupied looking seats were off in the corner. Vinnie and I handed over our daughter, and I tried hard not to cry when the nurse took her out of my arms. The doctor said he was busy with another baby but when done would look over ours and evaluate her, then call us into his office for 10-20 minutes to discuss her case.
The wait was awful, but it wasn't too long. Dr. Sandeep told us that she was in mild respiratory distress, likely do to a viral infection. Her O2 sats were running 86-89 instead of the desired 90th percentile. He ran through the tests they would be running and assured us that she looked like she would be fine it would just take a few days of giving her supportive measures for breathing while she recovered. They gave her orogastric feedings again to save her all the effort of bottlefeeding. He started to explain some basics and diagram the lungs on a piece of paper but I swiftly told him that I was a NICU veteran and he stopped, as he realized this was not my first rodeo and I understood what he was talking about. As soon as he reassured me that mothers were allowed unlimited access to the NICU I relaxed immensely and could not stop a few tears from sliding down. Fathers are only allowed brief visits with special permission from the doctor. I think at that moment I realized that our roles had to shift and that I had to trust Vinnie and my mother-in-law to care for Vivek that night and day while I slept at night and camped out at the hospital during the day. He alleviated my fears that I had somehow caused her more harm by possibly missing a fever, and said that this kind of viral infection is common in all preemies and difficult to prevent. He mentioned the remote possibility that it could worsen and she could be put on a ventilator and I'm sure I turned purple at the thought in spite of myself.
I was issued a gown and foot covers and escorted to see her. I was relieved, and could see that this NICU was very good and had much better equipment than Dr. Kothiala's but the care was comparable. It looks a lot more like a NICU in the US. Dr. Sandeep was very friendly and reassuring, and pointed out to me how her chest retracted and that it worried him because it showed she was having more problems with inspiration than expiration. While the blow by oxygen tent at 5mL flow was giving her 100% oxygenation, he felt that putting her on CPAP would benefit her because her blood gasses came back and showed some mild acidosis. He asked if I knew what that was and I assured him I did, and agreed the positive pressure would be good to help her breathe easier with less effort for now. The chest X-ray came back while we were discussing her care, and I was intensely relieved to learn that it was clear and showed no pneumonia.
This all took several hours, and in the meantime Vinnie was doing battle with the folks at admissions and billing or waiting miserably in the exterior waiting room. I did call him once and go out and talk to him once to fill him in. All my waiting was done in the "Mother Feeding Room" where there was a bunch of other mothers, some who spoke English and were very nice to me. I don't have the free reign that I did in Dr. Kothiala's NICU for sure, and as far as I can tell protocol is that while your access is unrestricted you are expected to go in and see your baby for a few minutes and can even sit in one or two spare chairs for a while, but then you go back and wait in the Mother Feeding Room. They also kick you out at random if they need to do a procedure or if you are there too long I guess. I got kicked out twice, but eventually realized no one was going to tell me it was okay to come back it. It is completely stupid, but not as stupid as what Vinnie was dealing with at the time. They expected him to pay $1100/60,000 rupees up front. They expected him to just be carrying that sort of money around in cash. Crazy! They were rude to him and they actually called Dr. Saluja to "vouch" for him. It is a strange process and we got some wierd ticket that we must show that we have paid in order for her to be released to us. Vinnie had to repeatedly reassure them we would have the money by tomorrow. So today he can only withdraw 20,000 rupees (10,000 from each account) to add to the 20,000 we happened to have on us at the time, and will borrow from the family until we can go to the ATM the next day to pay them back. Don't you just love ATM daily limits?!
As we walked out to go home I told him I'd rather take a bicycle rickshaw to help calm me down in the cool air, which Vinnie agreed was an excellent idea as he hugged me tightly. Back at home I went straight to the kitchen and ate, since I had only eaten a small meal that afternoon and now it was late at night. Vinnie handled the barrage of questions. I took two sleeping pills and went to sleep as fast as I could while he stayed up with Vivek and then in the early AM traded off feeding responsibilities with Mom.
I awoke at 8am this morning after having an anxiety dream about blowing auditions for a musical in high school. I ate quickly, loved on my son for a minute, then took a bicycle rickshaw to the hospital. I memorized the way this time so that I could walk next time. I figured out how to get a new gown and that I am supposed keep in a bag with my name on it. Then I went to see Tara and insisted on seeing the doctor to get an update. Seeing her on CPAP wasn't fun, but I knew it was for her benefit and temporary. He told me that the blood gasses now showed her Ph more normal without acidosis, so the treatment is working. The bacterial culture is clear, so that confirms it is a viral infection and antibiotics won't be helpful. He said this will run its course in likely 3-4 days and she can be discharged, and he make take her off CPAP in the evening. But the most reassuring thing was to see her chest rise more normally and how easy she was breathing compared to how she was. I memorized it so I will forever know exactly what her breathing is supposed to look like so next time I will recognize very early when it is labored and can get her help sooner.
My new motto is "Do unto yourself as you would have your children do unto themselves." I am working hard not to pass on my perfectionistic tendencies to my children because I know they aren't healthy. I have been racked with guilt since yesterday, examining every moment trying to reinvent the past and think of what I could have done to prevent this or recognize it sooner. I mostly come to the conclusion that I could only have been a radical tyrant and locked them in a room with me alone and refused any contact with the family that we have relied upon heavily to help us in setting things up to live here. It just isn't reasonable or practical, but it doesn't seem to stop me from feeling guilty that I could have changed this somehow. But then I ask myself if I would want my daughter to be so hard on herself for her mistakes or be filled with unreasonable guilt. I tell myself I need to move forward and learn from my mistakes, but not dwell on the past and beat myself up and place unreasonable expectations because that is what I would want my daughter to do. I have to lead by example so that I can cause as little psychological damage in raising them as possible. With any luck, they may turn out normal.
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. 
