Day 38: 4 Days and Counting!

Busy day. I felt much better and got an early start after having breakfast with one of the two Irish couples here for attempts at surrogacy. We went on a shopping trip so I could get some gifts for the wonderful women that threw my baby shower. We also stopped by Dr. Hitesh's and made sure a nanny was being secured for the 18th, but would also show up the day before at 11am at the NICU for bottle feeding practice, etc. We had a nice lunch at La Casa Inn at their restaurant La Casita, and it was very yummy and worth a 2nd visit.


Smiley girl




Tara milk coma





















In other news Manju showed up again to say hello to the babies briefly and Mom met her. I think she must have some other business here and this is only a brief stop for her, because she seems to come often. 

The flights for us to Delhi are now booked on the 24th. Woo hoo! 

Vivek's eyes are less swollen today and it is barely noticable, and he is only slightly fussy.

Vivek looking less swollen



Vivek in a liesurely repose





















Now all that is left is waiting. It still sucks. In fact, it sucks even more. I know I'm having abnormal amounts of pent up frustration and emotion, which are normal for this type of situation at this late stage. But it still surprises me when an insane amount of anger brews at a micromanaging nurse who stops me mid-diaper change and takes over. It is all I can do not to shove her aside and yell "THIS IS MY SON! MINE!!! NOT YOURS!!! I can change a diaper just as well as you thank you very much! And don't point at me because the clean one is soiled now because that was your fault, which I did not need your expertise to point out!And CLOSE the top to the wipes container so you don't dry out and waste them every time you change them! NOW BACK OFF!!"  Ahhh...I feel so much better now.

I'm feeling very territorial I guess because I'm sick and tired of everyone else having control over the care of my children, and being largely unable to communicate with them about it. I want them home with me where I can give them so much more love and attention. I've gotten so good at everything the nurses do they don't assist me with anything that they used to, even monitor resets and clearning malfunctions. Except this diaper change for some reason, which made me want to fly off the handle. Instead I just gave her a dirty look and fumed silently for an hour. Mom talked me down off the ledge when we returned to the hotel and told me to keep it together for four more days.

 

Vivek says "Live long and prosper and CHILL OUT Mommy"



Today we have an onslaught of new pictures. For the first time we put the babies together in the same isolette! Reunited and it feels so good! Together again after a month and a half!  They looked adorable and were largely oblivious about it. Either that or Vivek tried to punch her in the eye on purpose. Mom is going to try to work on holding the camera steady so all pictures of me aren't blurry.

 

And for the grand conclusion, tonight's weigh in! Vivek was right at 4lbs but lost a few grams today (this happens every few days but they usually have a big jump the next day). Miss Tara is catching up, but you never know if she'll surpass him. By the time they come to the hotel they'll be 4lbs, around 4 1/2 when we leave for Delhi. They'll easily be 5 1/2 to 6 lbs when we leave for the US.

 

Day 7: Roller coaster of love

Today was a huge roller coaster. It started off on a high. I got my NICU payment done, and then came in earlier than usual to discover it was bath time for babies. They change the sheets and wash the isolettes at the same time. The babies make sounds like they are being tortured during bathtime, but it is quite cute nonetheless. I missed my babies baths, but they were both the most alert I'd ever seen them...especially Tara. It has been easier to bond with Vivek because he has his eyes open more and is more expressive, but little Tara blew me away! I realized it had been harder to bond with her because of how little she opens her eyes.

Then came kangaroo care time. I know that de-satting and bradying is normal, and that my baby girl's desats are well within a normal range for her development and how she pulls herself out of them is a good sign. I also know that with her GERD that the episodes will be worse after eating. I know that stimulation is normal to help bring her out of it. But after kangaroo care for 15 min with me stimulating her non-stop lest she fall into the 70's I couldn't keep it together anymore. The first 10 min I was calm, but the last 5 the emotion overwhelmed me. I was angry at myself for getting emotional again, but every moment was killing me. All I could think was "how can kangaroo care be so good for her if she de-sats constantly when I hold her but in the crib she is so much better?" I finally insisted they move her back and then couldn't stop some tears from coming. A nurse told me not to cry, my daughter was fine. I told her I knew that, but the emotion is so overwhelming and I couldn't seem to shut it down like I normally can. Suvarna returned and asked what happened because she could see how upset I was. I told her my thoughts, and she said okay no kangaroo care for now. I asked if Dr. Kothiala was in her office, and she answered "Yes, Madam is in" and she called to let her know I was coming.

Dr. Kothiala agreed that perhaps something about the positioning is not good for Tara right now, and we will hold off with kangaroo care for a few days and only do Vivek. She explained that with her GERD right now they are doing a balancing act trying to treat it best, and they are waiting for her to get older and the sphincter will mature and function better that causes the reflux. She had to back off on the volume of the feeds to prevent the reflux, but doesn't want to do so to the point that she doesn't gain weight. They also raised her to a higher incline in her isolette. She said that if this doesn't work they will go to hourly feedings instead of a 2 hour schedule. The fact that she had a reasonable sounding plan helped me feel better. I asked about Prilosec, and she said she avoids using it and has only used it once. She does not like acid inhibitors for babies so small because they do not produce much in the first place and it has side effects. She is being given Domperidone (Motillium) to help the food pass through her system more effectively, which is the same med I am on to induce lactation.

I needed to relax after that so I went to the hotel and pumped, and hatched a plan for a long walk after sorted out payments with Dr. Hitesh and found the state bank ATM. Dr. Hitesh could not locate my file right away and several other people came to his office, so we agreed to do it tomorrow. I got better directions and a map this time to the state bank ATM and after about 20 min of backtracking I finally found it and my card worked. I hatched a plan to go on a long walk to eat at my friend's favorite restaurant, and bring them something from it since they brought their twins back to Rama from the NICU yesterday. I would also stop by the Black Beauty children's clothing shop and buy something for my husband's cousin who is expecting a son soon and asked me to bring her something.

The walk is long, and I wander through the poorer districts and it really gets to you. You recognize how fortunate you are and how much you take it for granted when you see how so many others live. But it is still a life even if it is lack for so many luxuries we often consider to be necessities. The entire walk schoolchildren stare at my pale foreign-ness and often giggle as soon as they are past me. I am funny looking I guess.

I am theory walking based on streets that don't acually connect on the map. Yet after about 40 minutes and my feet aching in a way they never have from walking on uneven ground in firm sandals, I reach the Laksh hotel in triumph. I go up to the Noon 2 Night care with the great view and have some water and a chocolate milkshake. Then I walk to Alpha and have by far what is the best meal I've had here. Then I go to Black Beauty and get an adorable outfit, then take a Tuk Tuk home. All in all a very productive and succesful day, one I sorely needed.

I visit my friend and learn how to set up a room at Rama with two babies, and take some tips for later. I realize a sterilizer and hot water pot that plug in, as well as cute mosquito net cribs as well as carriers can be bought at Seven Eleven.  It is uplifting to see two healthy twins, and I retreat to my room again.

Sadly I only make it to 7:30pm before I crash out, exhausted and sore. Once again I feel badly for only visiting my children once today. It was so emotionally trying, and I can't let that scare me off. Tomorrow is another day, of which I will have many here. I hope to come near bathtime tomorrow. I have watched the video of my little girl a dozen times today so I can see her lovely eyes.

Friends in far away places

So someone I met on the interwebs who is also having twins just arrived in Anand, and ever so graciously checked on my babies for me and fulfilled my request to email me some pictures of them! I just about fell out of bed and was yelling at my phone to load faster! It is so good to have a friend along this journey!

I have yet to see my baby boy not crying. My little girl is chilling in all 3 pics I have of her. All reports from the nurse Suvarna are good and it really emphasized that breathing without assistance at this point is very, very good.

The baby shower was yesterday, and I am overwhelmed with how many wonderful and and generous friends I have. Unfortunately I couldn't figure out how to work my new camera that my father-in-law gifted us, so I'll have to wait for my mother to email me her shots to post here. I had a wonderful time, and got some beautiful gifts. Most especially I got two little hand-knitted baby blankets with the alphabet on them, and two tiny knitted outfits with adorable fringed hats! Can't wait to dress them up for photos. My father bought us the Snuza Halo monitors so that I can have peace of mind.  I just was reading some Amazon reviews and there were several life saves reported, so this should help me to be a more relaxed Mom and sleep a bit deeper. As someone who has heard the screams of parents whose babies have died of SIDS...it changes you to the point you have to take every precaution because you know bad things can happen to good parents.

I got mandated to come in early on my last day of work before I leave, but fortunately they flexed me out and someone else took overtime so I can still work just 8 hours. I may get the nursery painted tonight after all...we'll see! The to do list for tonight is daunting, but I can sleep on the plane. I'm frustrated because I have a very small stack of items to take that I can't seem to fit in the suitcases. 4 of them are books, which I really don't want to sacrifice. The breast pump is really the problem because it is taking up so much space. I'll figure it out. I'll figure all this out. I can't wait to see my babies!!!!

Crash Course in NICU

So a lot has happened. Most significantly, I went down to Austin and visited my nieces for the first time. They are adorable!!!  I can't say just how incredibly helpful it was to me personally for so many reasons. There were several things it did for me aside from just the pure joy of being around two beautiful little babies and allowing my mother another day with her grandchildren:

1. I relaxed significantly with every passing hour. Seeing twins that are perfectly healthy and normal that were born at 28 weeks is very, very reassuring.

2. Baby care basics. I've been reading many books, a lot of the same ones my brother and sister in law did. But some of the concepts sound so much more complicated when you read them. However applying them seems much simpler. I relaxed about how to do parent directed "scheduled" feedings and logging everything, and getting them on the same schedule is not as complex as I thought. I was able to change diapers for really the first time, interpret their cues and crying without panicking, and for several periods of almost an hour handle two babies at once. Feeding time is more difficult though, but one person alone with two babies can be done. It's hard, but it is possible.

3. My breast pump. There is no goal of pressure/level to achieve. Do what works, and don't turn up the dial so high it hurts.

4. House setup. I realized my Eddie Bauer bassinet is just taking up space and will be relatively useless. I have a one story house and enough contraptions to hold babies in every room that this item that will hold two babies for a month or two tops is worthless. Out to the curb it went to someone who I'm sure was thrilled to have it. It was reassuring to see that though their house is much bigger and nicer, my setup will work just fine and is similar enough. I decided to do a system like they have on my kitchen counter tops with several plastic tubs to hold bottles and nipples and pacifiers in various stages of sterilization.

5. NICU advice. Hours and hours of it. They are sleep deprived parents of twins yet they stayed up until past 1am intensively coaching me on everything any of us could think of to prepare me for what to expect. This is after answering my almose ceaseless Q&A all day long! There is simply too much they told me to list here, but hopefully over the course of the blog I'll include most of it. Most of it was when they will be able to do what, such as kangaroo care or bottle feeding. They helped me understand that scary things will happen, but that eventually my baby stopping breathing or heart slowing down will be normal to me and I'll slap this tiny thing on the back rather hard to get it going again like it is no big deal. One step forward, two steps back will be the norm every time they try to wean them off oxygen or push them forward a stage. My existence will be a marathon of waiting and watching the heart rate, respiration rate, oxygen saturation, and blood pressure monitors. The pattern of these 4 numbers will be what my new world will revolve around. The babies will tell us when they are ready to do what. I figured that out fast enough to tell my father in law to back of off booking any plane tickets aside a one way ticket to India for me. A round trip ticket is just plain silly at this point.

6. Equipment. I was about to pack a half a suitcase with stuff I didn't need. The 4 oz Playtex drop ins....fuggedaboutit! The two bags of tiny slender 60ml mini-bottles they gave me will be plenty until we get them home and can use the larger ones. They gave me bags of rings and rubber nipples that were pre-sterilized tear-open bags. I got the same tear-open pacifiers and rubber nasal aspirators, as well as some medicine syringes and thermometers and hand and nail sterile sponge washers.  I likely won't need to bring newborn size clothes, so I bought up a bunch of preemie clothes instead. If they get bigger I'll have my mother bring in reinforcments the last 2 weeks. I even took advice from my hairdresser and went to the Build A Bear and bought doll clothes that I'm told will fit perfectly. 7 onesies per baby per week is plenty, by the way. Okay, okay....so I got more than that. Sue me. The clothes are friggin adorable!

7. Be grateful. Be really fucking grateful. 28 weeks and a 2 lb girl and almost 2 1/2lb boy is pretty damn good despite the risks and expenses involved.  My brother told me a story about a really bad day he had where he thought he was taking one baby girl home the next day only to have an episode while sitting in his lap that made sure she would spend a lot longer in NICU. In the elevator ride home he bumped into two people who each had twins in the NICU, but only one of each set had survived. The two parents were still grateful. So keep it in perspective and don't feel sorry for yourself. I've waited 8 long years and gone through so much pain for this, that I can't let myself forget that for a moment.

8. It's not about you. It's about them. You are not working hard. The nurses aren't the ones working so hard. Your little babies are the ones fighting hard to survive. They should still be in the womb, and our artificial one just isn't up to par. So remember whatever you are going through, they are going through so much more. They simply need a warm dark place to rest and grow with as little disruption as possible until they reach full term. So your need to hold them and touch them and see them without wires is irrelevant. For this reason initially a diaper change will be lightening fast to avoid any extra stimulation or heat loss.

9. You will look at parents of singletons born full term and laugh at them when they talk about how hard it is. You will be an old hand by the time your babies are out of NICU, and what overwhelms them will seem like nothing to you.

10. Not much will be different as far as NICU care. In the 1970's my babies would have roughly a 50/50 chance of survival. Now it is above 90%. But the thought lingers that these studies are based in U.S. based NICU's. What about India? We discussed that really the same things are done and are relatively simple to do. The same treatment protocols and medications. The level of hygeine and the newness of the equipment may be what differs the most. It is my hope that the NICU will be clean enough, and the appearance of less hygeine will relate more to how things look "old" but my hope is that I will find it is kept perfectly clean. We'll see. A tight level of control over sterilization and visitors and hand washing by the nurses may be the deciding factor. As far as equipment goes, older telemetry equipment make only differ by taking the same measurements every 15 seconds as opposed to every 5 seconds. We'll see what happens...

But for now we call Dr. Anita almost every night. Well every night that our washing machine drain hose doens't disconnect and spill 10 gallons of water all over our floor that is. Sigh. The conversations are always short. They are doing well. They are stable. They are being given surfactant therapy for their lungs (standard). Heart rates around 150 (normal).  She can't remember all the vitals and I'm vaguely familiar with the ranges but I should probably just wait until I get there to start getting these kinds of details.

By the miracle of the internet and thanks to this blog and the online forum for Dr. Patel's patients, I will not be alone. I have two new friends who will be in Anand with me. The first is a gal who talked to me about going to Anand, and is there now at Madhuban resort doing an IVF attempt. The second is someone I've been corresponding with for months beforehand and is also expecting twins. We were thinking we would miss each other, but now she will be there a few days before me. Since her twins will likely need a short NICU stay, I've asked and am crossing my fingers and praying she is able to send me pictures when she arrives on the 3rd. I won't get there until the 8th so here is hoping!

Until then I have so much on my to do list and have ran so many errands it is ridiculous! But my best friend is coming to town to throw the shower and will be a day early and can help. I'm also paying someone to come in and help clean, which will be well worth it. Hopefully I'll remember to post some pics of my finished Shangrila in my rush to leave!