Thursday, November 29, 2012

Countdown to D-Day

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.

Dr. Treen also gave us a new diagnosis of RAD, or Reactive Airway Disease.  http://emedicine.medsca
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.

1 comment:

  1. Your have an amazing kids! Thank you for this blog. It's so inspiring! I'm so happy for you! We should always fight for our dreams and goals no matter what. I also can't carry a baby by myself. I was born without an uterus. There is no chance for me to get pregnant and feel my baby pushing into my stomach. Still I'm grateful there are places and people who can help us with our problem. At the same time this is really hard to find good agency or clinic. There are so many scammers, who want to become rich, using poor people like us. There are even women, who pretend they want to be surrogates and then they get money and dissapear. Unfortunately our family faced such woman. Three years ago my dh and I decided to find sm by ourselves. We thought the procedure will be cheaper in this way. We met with her and discussed everything. She seemed so kind and lovely person. After our first payment she was gone. She didn't answer our phone calls or mails. It was so hard to get back to search of another place to go. I was seeing deception and a dirty tricks everywhere. After our experience we decided not to contact agencies and especially search sm by ourselves. We were looking for reliable clinic with professional doctors and high rate of successful treatments. We decided to concentrate mostly on Europe. As India was closed, we were choosing between Russia and Ukraine. Ultimately we chose Ukrainian clinic biotexcom. Reviews were mostly positive and this clinic has high success rates. Though we had some doubts about their medicine, we decided to go there and check everything. Our concerns faded away when we talk to our doctor and program coordinator. We saw fashionable design of the clinic and modern equipment. And the most important we saw so many couples there! People all over the world came to this clinic for surrogacy and de ivf programs. We have no regrets! We are so lucky we went straight to this clinic. Our daughter Kristine was born in May last year. We celebrated her first birthday 2 weeks ago. Dear, I wish you and your wonderful family all the best!