Day 26: Back in the saddle

I am twice as confident today bottle feeding as I was yesterday. Both Tara and Vivek desatted and bradied hard during bottle feeds today, but I handled it much better. I was decisive of when to give breaks and burps. I did learn a new trick...  Tara was sucking well and staying well oxygenated, which was odd because she isn't that good yet. It seemed like no milk was moving. Sure enough the tip was clogged. Now I know to watch for milk movement, bubbles coming up to show displacement, and milk eeking out the sides of the babies mouth to be sure it is flowing...otherwise you need to smoosh the tip between your fingers to clear it then tip it upside down to make sure droplets are coming out.

I have been captivated by the adorable crown my son has right at the front right of his forehead hairline. This will give him an adorable "Superman" curl for life and probably only give him one option for how he parts his hair.

I finally got to talk to my Mom tonight for two hours, right after I talked to my wonderful in-laws. I'm so excited about my mother-in-law coming I can hardly stand the wait! I enjoyed talking to both my Mom's tonight so much... I really needed it. I am very sad and disappointed though to learn that my mother cannot come to India anymore due to health concerns about how the trip could affect her by her doctor, as well as developments with my Stepdad's Alzheimer's. But she is going to help board our little dog Ralphie instead, make some of the finishing touches on getting my home ready, and arrange for the welcome wagon at the airport upon our return. I've been envisioning and planning for almost a year about what it would be like with my mother here, so trying to let go of that and re-envision how things will go is difficult. But I'm glad I had that to keep me going this whole time, because whether I show it or not it is really hard being here doing this by myself right now. With just my husband and my mother-in-law and myself it will be much more difficult to handle 2 babies on a 2 hr feeding schedule, so depending on how things go I may reconsider hiring a nanny for $10 a day.

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.

Day 5: 18 days old!

My babies are 18 days old!

I am quite proud that I withstood over 3 hours today in “the chair” doing and hour and a half each of kangaroo care with my babies. After this is over I vow never ever to purchase, own, or sit in one of those white plastic lawn chairs ever again.

Vivek is still gaining slowly and is at 1025, which is under his birthweight. Tara is gaining faster, but has more de-sats (about one an hour that is not that bad only to the upper 70’s and usually self corrects) but has GERD. This is essentially reflux, and I expected both to have it since it is fairly common among preemies. I think I’ve only seen Vivek de-sat once. I’m trying not to obsess about weight, but given all other factors that appear stable it is the one significant sign of progress I can focus on.

They are both as adorable as can be, and today are both wearing hats I brought. Of course they had to tape them over themselves to fit, but they’ll grow into them sooner or later. When feeding time comes every two hours they start to coo and throw their arms around and clench their hands, and make darling little sucking motions with their mouths.

The cardiologist only comes once every 30 days to check on them unless needed, and hasn’t been here yet. I asked today if he had been by because I wanted to know if either of them had a small hole in their hearts. This is common for preemies and the hole tends to close on it’s own without a problem. Dr. Kothiala said from what she can see it doesn’t look like they do, but when the cardiologist comes he can confirm that.

Since I’ve been here I’ve collected a variety of opinions on the NICU here. Some are positive, some more negative. My impression so far is positive, but I also have babies that are faring pretty well and I am taking a laid-back and trusting approach to this in order to stay positive and sane. When you walk into the NICU, there is the sense that the forces of fear and faith are at constant war inside your head. To one or the other you must surrender.  My friend who is here is a doctor and speaks some of the language, and I trust her opinion that the care here is comparable to a U.S. NICU even if the facility lacks the poshness of more modern facilities. Ya’ know…posh things like real chairs that don’t inflict pain upon the person sitting in them.  Something about being a parent makes you worry more than you know you should, and all you have to do to find something to worry about is be awake and have your eyes open. I try my best to stay in a relaxed and positive state for the entire time I’m holding them, but that can be hard to do for long stretches of time…especially in the middle of a de-sat.

The power went out today several times at the hotel, and then twice while I was at the NICU. As I expected, the essential machines were all on a uninterruptible power system run by generator backup, and the only reaction by the nurses was to hurriedly reset all the machines when the power came back on.  I did see a nurse run into the other room once today, but I couldn’t decipher why because I didn’t detect any noises beforehand. I am curious, but I do try to mind my own business about other people’s babies for the most part because I’m trying to be a fly on the wall and stay on everyone’s good side. I have only said something a few times to get a nurse to attend to a baby while I did kangaroo care because a baby had thrashed themselves over to the side of the isolette and had a face smashed against the plastic side and an alarm had not gone off yet, or they had twisted their hat around and it was covering their mouth and nose. I had no idea such premature babies could move and shake so much…and with most of them sleeping on an incline because of reflux, gravity plays a supporting role in getting them all discombobulated in their isolettes.

I finally got to video chat with my husband today, and it gave me the huge boost I needed. I wish I had a faster feed because I got a blurry shot of his face every 20 sec or so. My in-laws also called and it was nice to talk to them too. I feel a little less alone now, and as much as I want them to relax and not worry…knowing that my husband and father-in-law are not sleeping so great helps me to know I’m not the only one feeling the emotional upheaval.  It does hit you at a certain point in a situation like this that you have to be the strong one. Everyone is leaning on you for strength and leadership in this tough situation, and you will not be able to lean on them more than they will lean on you. I am strong enough to do this, but I find myself so worn out emotionally that it seems to translate into physical exhaustion as well. Though my husband did point out that trying to stay motionless in “the chair” for 3 hours for my babies does take some physical fortitude.

Once again today I took a ‘nap’ and got my schedule off and neglected to pump. It is frustrating, but at some point I’ll establish a routine of NICU visitation, pumping, sleeping, and the anything else here of life in Anand.