Saturday, October 13, 2012

Day 69: One step forward, two steps back...

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.


  1. Emily, I don't mean to scare you, but you should know domperidone was taken of the market in US in 1998.

    Google says-
    Domperidone: This medicine was removed from the United States market in 1998 because it may cause serious adverse effects, including irregular heartbeat, stopping of the heart or sudden death. These dangers could convey to the nursing baby of breast-feeding women, who may be using domperidone to try increase milk production, which is not an approved use.

    We didn't let Dr. Anita give it to our daughter when we discovered this..

  2. Hope the little one gets better soon i enjoy reading your messages it gives hope. I to will be going to Dr.Patel clinic on Oct 2,2012 and hope everything go's well this is my last hope. God bless your family.