As usual Miss Tara had some surprises up her sleeve.
Things were really not changing and she was in significant pain and her lungs were starting to have some fluid on the X-ray, and frankly I was not going to be suprised if it took her a week to get extubated.
But Tara always likes fly in the face of limitations, so she was extubated today and has improved dramatically since then. The more she fought and the longer she was on the ventilator the more fluid her lungs would produce due to their reactivity. Then the more sedation she would need and then that would make her need more respiratory support because of the sedation. It is a downward cycle, so they tried extubation to see how it went and she responded very well!
She is in a lot less pain and clearly much happier and resting better, so they are already weaning her off pain meds of Fentanyl and Versed too. Her intestines weren't really moving anything ("ileus" because of surgery recovery) but then today they kicked in and she had a poo and then a BIG poo after they gave her a suppository and is is tooting up a storm. The doctor calls it "passing flatus." :)
They tried 4 times yesterday to insert a PICC line into a bigger vein and failed, but the doctor called me late today to tell me they were going to start formula slowly into her Gtube rather than turn her into a human pincushion. Good thing, because if they kept trying today and failed I was going to revoke consent! She is tolerating the formula well so far, and if that continues tomorrow the Doc said she is out of danger.
She is doing so well now the possibility of her being home by Christmas could be back on the table. But either way I've been reminded is that it is family that makes a holiday and not a time or place, so we'll make the holiday magic happen somehow.
I did find out that my son is no more likely to have a malrotation than any other baby, and it is not related to prematurity.
I found a great blog of a 23 weeker preemie at www.lifewithjack.com and she wrote a beautiful piece "Don't Wish it Away" here: http://www.lifewithjack.com/2012/12/dont-wish-it-away.htmlIt is a MUST READ for anyone going through the NICU experience. She says what I have been thinking so much more eloquently than I could ever put it. She has been though so much more and has had to face down major fears that for me are mostly only small risk factors. I'm going to try to relax and enjoy every moment more. Cuddle more. Take more pictures. Try not to worry as much as possible. After all, it's like paying interest on a loan you may not even owe.
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 things have been moving along. I'm trying to enjoy being a Mom but it is hard to enjoy it fully when my beautiful daughter is missing from the daily picture. But I'm forcing myself to take pictures again and try to celebrate the little moments. It is funny to see how much he loves the glider and the swing. He seems confused yet somewhat pleased by the motions they make.
Today I got a lot done and sorted through some clothes donations for the princess so that she may wear pink and not just the very few gender neutral items I had or be stuck in boy clothes (Thank you Cristina!). I actually risked taking a bath today and by some miracle he slept through it. I also finished unpacking from India FINALLY, and figured out how to use our stroller. That means that Vivek and Ralph and I all went for our first walk together up to the duck pond next to our house for a 15 minute jaunt. It was nice having him out in the sun and fresh air for the first time, and though he slept through it I'm pretty sure he enjoyed himself.
Ralph didn't pull on the leash for the first time I've ever seen, and I hope it is because he seems to be getting the picture that the stroller is in the lead and the baby boy is the new Alpha in this family. He is giving the baby a wide berth and waiting for permission to approach. He at times seems to be guarding the baby, and gets very concerned and seems distressed when he cries. The only issue we have so far is him pulling off the blankets and burp cloths to the ground on occasion, but I'm pretty sure it is because he smells the formula/vomit and that equals food to him. Our dog is a little piglet and will eat anything that remotely smells like food. After many failed attempts at discovering a bounty of dog treats hidden inside a burp cloth, this seems to be abating. They seemed to be getting along during Vivek's first time on the playmat.
I spend at least two hours a day with Tara, but it feels like just a drop in the bucket and it kills me everytime I leave her. If I didn't have to care for Vivek I would spend all day there everyday. Especially now, because I can work miracles to calm her when the nurses can't so holding her is of great benefit to her health. She still gets agitated easily, and then she cries. When she cries she coughs. When she coughs she can't stop coughing. Then she starts gagging out her feeding tube and bronchospasming and can't breathe.
They put her back on steroids to help decrease the imflammation in her lungs. She is making progress daily despite the insult to her lungs still being obvious in her breathing and behavior. They weaned her from 6ml oxygen on the nasal cannula down to 3mL in 3 days, which are huge strides forward. She has to be a .3ml to begin bottle feeding again. Given that we were told she would still be on a ventilator at this point this is stupendous progress!
I am so incredibly grateful for the meals that are being brought by my friends at church, the Metrocrest Mothers of Multiples club, and work friends. It is the thing that is making this marathon possible and giving me enough time to sleep and take care of Vivek and see Tara. Time and money are running out so I decided the best thing was to go back to work Sunday, and will take another week off when Tara is finally discharged. It is a little daunting but we have a plan that will get us both enough sleep and family is helping out four days a week so that I can see Tara 3 hours a day. Again, having the meals ready to go is saving a tremedous amount of time and preserving my sanity and I am so deeply appreciative. Thank you!
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.
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. 
