Coming Home

It wasn't easy. It never is. But she is finally home!

Over the weekend before Christmas I enjoyed my time with Vivek, knowing things would be changing a lot soon. We had a lot of fun and he gave his jumper and musical playmat a test run and seemed to enjoy himself, even if he is a little small for it. He is all about moving around and standing up and now jumping up and down and making noises. 

Don't let the blank face fool you. I'm having fun.









We also had a Christmas photo shoot, and I'm including the best selections.

 



Then we joined my husband's family for a wonderful Christmas celebration in Arlington. Dadoo and Dadima were over the moon to have him at their home for the first time, and the babies got a fantastic pile of presents!

 

Thanks to Dadoo and Dadima staying with our son we were able to room in on Christmas Eve, and all through Christmas day and most of the next day. Princess created some drama that delayed her discharge a day. Typical. She wanted to remind everyone who was in charge.

For some reason in my head I expected Vinnie and I to have a magical night bonding with our baby girl again. I think the only thing that was magical was waking up to white Christmas. The rest of it was incredibly stressful. I have been at the hospital a lot. But it wasn't until my husband and I were tasked with all the rigorous schedule of feeding bag formula changeouts, bag replacements, wound care, medication administration, breathing treatments/CPT, and 2-3 bottle feeds crammed in between that it hit me how hard it was going to be. It wasn't so much all the things required for her care that are daunting, but how in the hell I'm going to fit another baby and any sleep into that mix at all and eventually come back to work. I promised myself I would give it a few days to settle in and see how we can make it work.

Princess did well most of the time, but had a few of her epic meltdowns thanks to her temper and a few poopy diapers. This sets off her reactive airway disease and causes her to wheeze, but usually a slightly early breathing treatment and a little time and her lungs settle back down. 30 minutes before the doctor returned to give her final clearance to take her home she had a meltdown and this time her breathing sounded like rice crispies. I already knew before the doctor walked in that she would not be going home that day. But I wasn't upset. I knew we needed a better plan to bring her home, and had been wanting oxygen at home for just such circumstances for over a month. This time the doctor agreed, as it was the first event like this she had seen. She put her on a diuretic and sodium chloride as well as upping her calories to 24 so she will take in less fluid. Hopefully this will keep her lungs from getting all wet from an RAD episode.  She didn't think insurance would approve oxygen initially, but I argued that we were treating it like an all or nothing proposition when her needs are episodic. My father saved the day and had an oxygen concentrator that he had never used from his aortic aneurysm two years ago, so I drove the next morning after working Christmas night through lots of icy roads and brought it to the hospital. The insurance company fight can be postponed.

 


















I finally brought her home the day after Christmas around 3pm. I got to ride in a wheelchair with her in my arms just like all the other Moms when they leave the hospital! Thanks to a gift card from my wonderful friend Madira, she wore her very special pink bunny sweater dress I had purchased months ago on the third day of her hospitalization when I finally started to believe wholeheartedly that she would survive. It was a big turning point, and I've kept that outfit and looked at it often over these months as a promise of the wonderful day that would surely come eventually. It did!  I added to the ensemble a pair of ruffled pink tights that used to cover up my tiny bottom in 1977, and I have a pile of my old baby clothes my Mom saved for her to wear now.

 


















I had barely slept in two days, but was so happy. And I don't think it is just my imagination, but she seems so much happier here too. Just seeing the look of amazement and smiles on her face when she looked at the toy arch above her sleeper bed melted my heart. This is where she belongs.

There has been no time for all the photo sessions I dreamed of, but hopefully soon I can get some post-Christmas photos that make it look like Christmas and some family reunited shots. Right now I'm just lucky to get a shower every few days and a meal every 8 hours.  It is hard. It's really, really hard. I hate when they both cry so hard and I have to pick one, especially when her's is so heart wrenching and causes a wheezing episode. But when he needs a bottle and she just wants to be held, what choice do you have? I'm hoping the Podee bottle I ordered from Amazon arrives any day now and might help with that situation.

My calendar is full of doctor appointments. She has at least one a week, and will follow up with about 5 different specialists. There are tons of calls from medical supply companies shipping us equipment. My living room has an IV pole, oxygen machine, and nebulizer machine in it. I can now disconnect a G-tube and pause a feeding pump while half asleep to go get her diaper changed. Home health nurses came by for one of the twice weekly visits, and within 5 minutes of talking to me they were so impressed with my knowledge, skill, and setup in caring for her that they said "You don't need education and monitoring, you need help!" I told the nurse our entire story over the next two hours and brought her to tears. She promised to do battle with the insurance company to get us a different kind of nursing care during the day to help me sleep, though the nurse can't care for Vivek so I'll still sleep when he sleeps. We'll see what happens. I'm trying to exist day to day...no...hour to hour. It is very hard. But as always, after a few hours sleep (Thanks Vinnie and Subhash and Savita) and a few baby smiles it all feels so very worth it. I know it will get easier as they both age and her medical needs resolve, and I do my best to enjoy every moment until then.

Busting a gut

So things  were progressing so well and I was making plans that little Tara may really be home for the holidays. But as usual she had a curve ball for us. I got a phone call that I just missed on my phone from the NICU on Tuesday in the late afternoon, with the doctor saying to call back because it was urgent. Not a message you want to hear. I called back and they tell me she has busted her stitches and her intestines are playing peek a boo. They covered it up with saran wrap, which makes a great occlusive sterile dressing, as well as tons of gauze and tape and stuff to hold things in place. She will have to be re-operated on to close the hole, to include general anesthesia and intubation. Again.

Fortunately Dr. Black who assisted on the first surgery was there and ready to go, and they got a new anesthesiologist on her case. I told them I would be there in 45 minutes or so and to pass along the info that she de-satted at the beginning and end of the last surgery according to Dr. Kadesky.  I quickly dropped off my son at my Mom's house and a casserole off at a new mother of twins house that I had agreed to bring dinner to for the Mother's of Multiples Club. (Google "Blend of the Bayou Casserole"...it's fabulous!)

I made it to the hospital with a half hour to spare before surgery, running inside right past the anesthesiologist who was stuffing some last minute cookies down his throat in the waiting room. They had given her fentanyl again to keep her comfortable. This time I had a long time to talk to both surgeons and relax me. Everyone was baffled. They say this can happen with older babies after surgery, but is very rare. That's my girl! It could be related to starting feeds sooner, but her bloating from ileus the first few days seems a lot more suspect. Also the steroids can soften the skin and may have contributed. When they went in they found that one side held perfectly. Textbook. The other side was a raggedy mess.

They told me this time they would put in a double row of stitches, and since the surgery wasn't as involved she should recover and get extubated quicker. Dr. Black assured me it will make it like it never happened. Not only will the scar look the same, but for reasons I don't understand incisions after surgery don't really start healing for 5-7 days so it will not disrupt the healing timeline for her and she MIGHT still be home by Christmas. I appreciated very much that the anesthesiologist called Dr. Kadesky at home to ask about the de-sat he had told me about but was not mentioned in the surgery notes. Turns out it was only a 92% desat, but it was helpful to know about and she did repeat that pattern. I very much appreciated his caution and making that phone call!



Miss Tara less swollen, off pain meds, and feeling better. Right before she tore her little tummy!

 I waited all alone in a waiting room at 8:00 at night, and the coffee machine was BROKEN! That's just cruel. It took about an hour, and all went well. As expected she came back to the room intubated, but this time it only took about 12 hours to get her extubated. I stayed the night at the hospital sleeping fitfully in the recliner next to her incubator. As of yesterday she is looking more comfortable, but not as happy as she was right before all this happened.

Thanks to my wonderful mother who kept our son overnight and my in-laws who came early the next day to help us get some extra sleep. Nonetheless today some of my hair started falling out in clumps. I didn't think I was that stressed, but apparently I am. Apparently it's not enough that I'm sprouting many grey hairs for the first time after this whole NICU experience...

With all the attention on Tara this week, I haven't taken any photos or videos of the little man. I made up for it today. He was wide awake and having a dance party on the changing table, where he LOVES to hang out. I'm not sure if it is the super cute and colorful wood mobile from my friend Karen or the way he can stretch out and flail his arms and legs around. I just pull up the rocking chair and watch. He is following people with his eyes and head and making more eye contact. He smiles more and I think I heard him laugh twice. I've started reading him books, and he seems to enjoy it. I have to say I'm alarmed at how many baby books are about animals and the noises they make. Isn't the goal to get them to make human noises?

A Preemie Mother's Oath

Also copied from www.lifeafterNICU.com

Preemie Mother's Oath

I have sat in the NICU and waited.
I have cried and prayed.
I have endured.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.

Whether I parent a preemie with physical challenges or medical issues, I will not be careless with my love.

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.

Yes, I will be a wonderful mother.

- Author Unknown

You Know You're a NICU Parent if...

I copied this from a great site/Facebook page www.lifeafterNICU.com

You would be excited about...

• increased feedings.
• 5 grams of weight gain.
• O2 levels.
• an inch in length.
• seeing the eyes of a 4-week-old for the very first time.
• poopy diapers
• graduating beds.
• going to the intermediate nursery.
• dread walking out of those doors to go home to sleep.
• 10:00pm or 5:00am phone calls to let you know your little one did something good/new.
• going to the hospital (hey, we get to see our kids!).
• CPR classes (they're coming home soon!).
• outgrowing clothes.
• hearing your baby cry for the first time, weeks old and crying just as hard in joy.

You know...

• the fear of seeing your child for the first time.
• that Brady's are not referring to the Brady Bunch.
• what CPAP means.
• the pain of not holding your child for days
• the workings of an isolette.
• what each beep means.
• how important kangaroo care is (to baby and mom/dad).
• that a parent's job is to fix whatever hurts their child - and know the pain of realizing you can't.
• what a PICC Line is.
• just how important surfactant is, and what it is for that matter.
• and understands the realism of adjusted ages.
• what it feels like to cry the first time you see your baby in a crib.
• the agony over sending birth announcements. 
• how amazing tiny fingers feel clenched to your hand.
• the pain of hearing a woman in her third trimester complaining about her pregnancy, and wondering that that would be like.
• and finally understands the metric system.
• there are no choices in the NICU - you have to be strong. 
• cracked and bleeding hands from washing them so much and coating them constantly with hand sanitizer.
• how hard it is to trust 100+ people you have never met before care for the child for whom you have waited a lifetime.
• what it's like to argue with each other over who changes the diaper - because you both want to - its a chance to touch your baby.
• every inch of their NICU, what walls they cried against, what nurseries they 'lived in', what shifts each doctor, nurse, therapist, and staff member works.
• that you will be a germaphobe for at least the next 2 years, people will think you are weird, and you will know you are literally saving your child's life.
• 50 nurses by name, and their kids' names.
• can give better directions to the cafeteria, gift shop and parking lot than the employees.
• that every day in the NICU makes you one of the lucky ones.
• just how important each new day is and how much significance a new day holds. Sure, every day to a parent of a healthy, full term baby means a lot, but we go in not knowing... and that is scary.

Preemie Parenting is Different

I apologize in advance for the long post, but there are a lot of musings bouncing around in my brain that I want to share with the interwebs. Most of my readers outside of family looking for baby pics and updates are probably folks in the surrogacy community or looking to join. I hope that my blog is in some way helpful to you. Now that I've been kicked out of the Infertiles Club (though I did keep my gold 8-year membership card) this blog is transitioning into one of the oh so numerous Parenting Blogs. There are many out there that are far more informative and waaaaay funnier. Like, laugh out loud and try not to wet your pants funny. See www.jennepper.com . But this one is mine so my point is that those other blogs can suck it.

No really. My point is that I am going to blog not just about my babies and post pics of them, but also about my thoughts on parenting now. Perhaps some folks out there will find it interesting. I'll admit it will probably amount more to a cathartic exercise for me, but either way I enjoy putting it out there.

So. That being said...

I am tired of washing my hands all the time. As soon as I admit that to myself the newly acquired little voice in my head that shouts out "BAD MOMMY! BAD MOMMY!" goes into overdrive. I am not a germaphobic sort of gal, though my husband is slightly. I have finally been successful now in keeping my house clean and it does not cause me the same anxiety as it did in the past. But there is a difference between normal clean and sterile. It is a difference most people don't think about. But as a preemie parent it is something that you think about constantly.

My husband told me this morning he will find himself washing his hands realizing it is probably excessive, but not really able to stop himself. I find myself doing the same thing. It is a constant question of do you deal with the anxiety of thinking that in the last 30 minutes your pinkie may have accidentally brushed against your shoe when your legs were crossed and now you are about to pass on a resistant strain of e. coli that will put your baby back in the NICU, or do you just suck it up and go wash your hands AGAIN. The latter is a lot less stressful, but it does result in going through enough paper towels to destroy a forest, kill the ozone layer, and keep Costco in business. Don't let me get started on the whole "...but did I wash them long enough?" thoughts that now invade my brain. Add to all this the average person touches their face 15.7 times per hour. I am now aware of when I touch my nose or mouth and 15.7 times per hour I ask myself "Should I wash my hands or use hand sanitizer?" Welcome to my slippery slope.

Before this I was a person that followed the 5 second rule religiously. I invented that rule. There may have even been a time or two in my life where I neglected to wash my hands before leaving the restroom. *COLLECTIVE GASP* Now I am a person who by the end of the year may not have any fingerprints left and OCD is not to blame. I am now a person that sees every surface in the house as a petri dish breeding ground of death and Lysol antibacterial wipes are my salvation.

As a parent I would have to say I am pretty relaxed. I do worry about some things like a new parent does, but I think I am on the low end of the scale. I'm determined to finally get my chance to enjoy this parenting thing and am not going to be a controlling worrywart about every little thing. I've seen those kind of parents and am determined not to be a helicoptor pilot. However I'm sure people won't see me that way because of the germ factor. The key is it that it's not paranoia if your fear is rational. And with immuno-compromised twins it is rational.

I'm not one of those folks who gave birth to a 1 pound 24 or 25 weeker that try to set up their house like a NICU and don't allow the grandparents to hold them the first year. There are those folks out there, though I wonder if they actually gown and glove like I have to right now at the NICU. Frankly I wouldn't be surprised and I don't judge them for it knowing what I know now. I also am no longer judgy about people that put their kids on leashes by the way.

But I am someone who is now constantly conscious of surfaces and behaviors that could spread germs that were never even on my radar before. I am more grateful now than ever that my pediatrician spent a year specializing in infectious diseases, because I trust her explicitly to help me navigate this new world of preemie parenting and know whether I am making a rational compromise or going way overboard.

To some degree when you become a parent you become a self professed expert on all things parenting. You have joined the dark side and are now qualified to spew advice. Whether it is wanted or not... I'm sure by my behaviors, especially concerning my daughter, I'll be seen as THAT MOM that is germaphobic/OCD/paranoid. They will laugh to themselves about first time parents as they pick up a pacifier off the floor, blow on it, and then jam it into their baby's mouth.

Parents, even first time parents, have a lot of luxuries they take for granted. They may worry about their children, but their worry does not go as in depth as a preemie parent who has risk factors they have never had to consider. There are so many things they have the luxury of not thinking about. When you child is immuno-compromised and has BPD and feeding issues and almost died things that would be innocuous with a full term baby take on a whole new meaning. If she coughs or grunts during a bottle feeding it is not a cough or a grunt. It is a potential aspiration that could cause a viral infection and now you have to watch her even closer than you did before for those oh so subtle signs that occur before they turn on a dime and OMG you are back in the NICU. If they breathe fast for a little while it could be tachypnea signaling a reflux aspiration or another infection. With a full term baby it would likely be dismissed as being excited or hungry.

My son was up crying way more than usual last night with gas and perhaps our introduction to the wonderful world of colic. He slept like a rock all day and only ate 3/4 of his usual bottle for 4 feedings because "I'm full enough now thank you and wanna sleep so I'm spitting this mouthful at you to drive that point home." Being really tired makes a lot of sense. But listlessness and a few hours of feeding disinterest was the only identifiable symptom before I had to give CPR to my daughter. In an adult to identify the priority symptom of decreased level of consciousness you simply nudge and tell them to communicate with you what day it is or other info that tells you they have normal mental status. An infant sleeps so much and responds in such a subtle way that it's almost as if a decreased level of consciousness is a normal state and it makes it harder to detect a problem.

So even though I know Vivek is probably just tired from making my poor husband pull an all nighter, I'm studying and counting his breathing and picking him up unnecessarily to make sure he is not limp and messing with him a bit to make sure he seems appropriately annoyed. My point is there are so many things that babies do that in a full term baby can be easily dismissed but in a preemie become potential symptoms with a high penalty for failure if your decision is wrong.

That is why I cried this morning from gratitude that I lucked out by marrying a man that turns out to be such an incredible father and husband. More than I ever knew he would be. He searched for hours on the internet for affordable pulse ox monitors that were approved for neonates and they arrived yesterday to my suprise. I realized that helps to eliminate this "am I being paranoid?" guessing game that we have to do with our babies. I won't have any doubt now that it is time to call a doctor or take them to an ER. An apnea alarm is great, but cannot detect an irregular breathing pattern that is resulting in hypoxia for an extended time. A pulse ox monitor will let us know if her breathing is being compromised long before the point where symptoms are more readily identifiable.

It's the same reason I was overjoyed to find a brand new $60 digital baby scale at a thrift store for $5. Worried they aren't gaining enough weight and the routine doctor appointment is in 3 weeks? No worries. Just pop them on the scale and breathe easy.

I've had some folks be judgmental towards us about the scale and the monitors and make some comments I did not appreciate. I think it is because they need to judge me as overcautious because otherwise to them it would mean they are not being cautious enough. I don't judge folks for not going to the same lengths we are at all. Everyone has different experiences, and we have additional risks and have seen things go really, really wrong so we have good reason for our cautious approach. And keep in mind that for 12 years I have worked at 911. I work at "Bad Things Happen to Good People" Central Station. What some people see as being overcautious is me managing risks based on over a decade of information on what actually happens to people everday that most folks don't hear about. Some of the worst stuff happens to great parents who never thought anything like that could happen to them.

I guess what I'm realizing about this parenting thing is that just like most things in life, you have to do what you know is the right thing and not worry so much about what other folks think of you. I would give anything if my babies could have been born full term without having their health compromised and so that I could exist in blissful ignorance of such complications. But this is my reality, and I have to accept that we share more risks and there are certain things we cannot do. So I guess that means no pictures of my babies on Santa's lap screaming in terror this year. Maybe next year I can traumatize them.

Preemie parenting is different.

Gassy with a paci

My daughter is seriously addicted to the pacifier. The NICU nurses tell me everything is okay until that pacifier comes out of her mouth. She wears the rubber down on those thingies then spits it out and screams for another. She LOVES her paci. I'm thinking it is a sign of the trauma she has been through that she has developed some sort of oral fixation. She has impressed me with a trick: when the pacifier comes out she turns her head the direction it fell out and tries to suck it back up. I thought object permanence took a while, but when it comes to her pacifier she is determined to find out where it could have gone. As far as my son is concerned it is gone and never ever coming back and it is time to wail to the heavens in misery at the horrible hand fate has dealt. Woe! Woe I tell you!

Please take note of the lovely baby blankets in the pic above and below lovingly knitted by my fabulous friend Marga!

In other news the nurses tell me my daughter cries after she toots and not before. They tell me my daughter is so gassy it is unbelievable, and they stink to high heaven. They will smell it from the doorway and glove and gown to go in and change her diaper, only to find it is clean as a whistle. A whistle that toots a lot.

They brought in a bouncy chair and I missed her first time in one, but I'll still be the one who gets to introduce her to the baby Bjorn (Thanks Todd!) and the swings. She seems to enjoy it. I have to say it is wierd to walk in the hospital room and see her down so low to the ground instead of in her crib.

I did freak all the nurses out the other day because I walked up to the room entrance and saw no baby in the crib, and asked where she was. The nurse was absent too. Several nurses were scrambling to figure out where she was. I tried to calm myself by assuming she had to go somewhere for a lung scan perhaps. Then our nurse shows up and says "What do you mean? She's right there." I look closer and I'll be darn it there was a baby after all. She was camouflaged by a a perfectly flat wrapped top sheet that matched the other sheet. I swear it isn't until you got 3 feet away at the perfect angle you could see there was a tiny lump of baby poking out the top. In my defense a nurse had walked up to the door too and not seen her. I felt bad for freaking everybody out.

Vinnie and I have been doing a great job at this parent thing if I do say so myself. It has been tough going back to work and he and I doing the sleep deprivation thing, but we are getting into a manageable routine. I am getting more used to sleeping during the day when he sleeps, so that is making my nights more survivable. My coworkers are alarmed by just how much caffeine I have ingested in one sitting but I promptly combat their judginess by politely responding "Shut up I have twins." Catching up on sleep over the weekend is marvelous, and I have never been so happy to curl up into my bed full of happy thoughts of how blessed I am. I still can't believe I got two babies, and a sainted husband who offers to take my son to the pediatrician on four hours of sleep so I can get four hours of sleep. I received a compliment today (I think) that I didn't look like nearly as much of a zombie as expected. Let me just say I did not know it was possible to be this happy and this tired at the same time. It turns out that makes it so much easier to bear. Every other time in my life I was sleep deprived I was just bitter and bitchy.


Vivek salutes in his sleep those who served our country this Veteran's Day

It's still hard getting to see her only 2 hours a day on average, and I worry she is forgetting me. (Sniff sniff) But fortunately she is getting lots of attention, and she has gotten several grandparent visits and another weekly visit from her Daddy. Weaning her off oxygen and steroids and breathing treatments has been very successful but the last few steps are taking a while. The rhinovirus is officially gone and she can possibly go home this week, but will likely be on oxygen for a bit and we'll have to administer breathing treatments.  I am okay with that as long as I am home or Vinnie is awake because he sleeps too deeply for a pulse ox alarm to wake him up if her nasal cannula comes out. That means as long as she is home on oxygen I'll need to take off of work, so that is the next thing to discuss with our doctor to figure out our immediate future. It also looks like my attempts to get the doctors to approve a swallow study has been successful despite one stick in the mud doctor who felt it was unecessary. Because there are so many doctors that rotate I just play Mommy against Daddy and convince another doctor of my argument. I'm madly Googling terms like "silent reflux" and "microaspiration" so that I am educated enough to advocate for my daughter and can recognize any subtle signs of illness upon her final return home (we hope). I am gonna burn that $10 per call 24-hr Nurse line my pediatrician has up if she so much as looks at me funny.



Vivek had another weight check since we switched him over to 24 calories instead of 22, and he gained the desired poundage and impressed the Doc. He did not vomit all over the entire place this time either, so I'm sure that helped the numbers a tad. He got to meet his Papa for the second time also and hang out for about an hour. I was a sucky hostess because I almost fell asleep sitting up at the table mid sentence during his visit.

Another huge thank you to my friends from church who have continued bringing me meals, and my work friends who purchased a ton of food gift certificates. That is seriously what is making it possible to keep up this crazy schedule. For the first time since I got home from India 3 weeks ago I did manage to carve out 30 minutes to go to the grocery store and get some milk, but if it hadn't been for all the help from friends I'm pretty sure I would have starved to death or broken into my son's Similac Neosure stash to stay alive.

I have developed a slight case of occipital neuralgia. Or at least that's what I think it is. What? I'm qualified to diagnose myself. I have my Google M.D. Occipital neuralgia is strong stabbing pains at the base of your skull intermittently, caused by pinching a nerve from repetitive neck strain. In my case it is caused by turning my neck down and to the left constantly to stare at my babies while I hold and feed them. I have also gotten my first grey hairs on the top of my head, as discovered by my mother. I am absolutely 100% certain that this NICU experience has given them to me. I wear them with pride. Until my next dye job anyway...

We'll conclude this post with my husband's video of the amazing Vivek and his new tricks. Cause everything he does is like...so absolutely AMAZING! So freaking cute and surely nothing that any baby in the history of the world has ever done before...

Back to work

So I went back to work Sunday. The work is easy enough because even if I'm tired and adjusting my body still, somehow my hands and mouth somehow seem to remember what to do even when my brain hasn't caught up yet. Thank God for caffeine. I like working on a lower stress slower shift given the major life changes we've gone through, and it helps me keep my focus first on my family as I envisioned. The hard part is sleeping. I have enough opportunity during the day when Vivek is sleeping, but my body is still fighting it. It will get a bit easier after a week I'm sure, and after Tara is home then I'll have even more time to sleep or get stuff done since I won't be carving out several hours of outside care for him and travel to the hospital to see her. Vinnie is doing a great job and working out a schedule that works for him. Unfortunately Vivek seems to be fussy and gassy for a few hours late at night so that makes it tougher on him, but I help him catch up on sleep in the morning. I'm so proud of the job he is doing and we are making it work. It makes you love your husband so much more to see him being such a good father.

Sunday afternoon Vinnie took care of my stepdad and Vivek so I could bring my mother to see Tara finally. It was long overdue since her last memories of her were less than pleasant two weeks ago. She managed to hold back tears and held her for an hour.

Tara is doing fantastic. She is now down to 1L of oxygen on the nasal cannula! Only slightly more than room air, and on a low flow rather than fast flow. She got her last dose of steroids, and they moved the orogastric tube to her nose to prep her for bottlefeeding. That made her very happy because she hates tubes down her throat. When I saw her last night for the first time she seemed comfortable and like her old self, happy and adorable. She was not getting upset or agitated to get messed with and when she coughed she did not go into a coughing fit. She stared at me for an hour making cute little faces, and I'm pretty sure Maleka is her favorite nurse. The doctor called today and left me a message while I was sleeping, and said the occupational therapists gave her the first bottle feed. She did gulp as expected and they had to work on pacing her. We'll see where we go from here, but the residual effects of the pneumonia are abating.

Meanwhile Vivek decided to be a candy striper for the day and we visited my husband's cousin Preeti in the hospital. I had been to her baby shower the previous day, which had been moved to the Presbyterian Hospital of Plano cafeteria due to her medical issues in her pregnancy. Her baby is 3.4lbs and she is 32 weeks along, so I assured her she is in a great place and not to worry. I know how much it helps to see a baby that was as small or smaller than yours big and healthy, so glad I was able to do for her what my brother and sister-in-law did for me. Vivek showed off his 8lb frame and was a perfect angel as she held him. It lifted hers and her husband's spirits I'm sure as they wait the 1-4 weeks until their early delivery, and it was nice to donate most of his old preemie clothes to a good cause.

Keep calm and carry on

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!

Happy Halloween

Only one day has passed that I didn't get to the hospital to see Tara. Halloween. Halloween was like something out of a horror movie. I was working on one of many home projects and noticed a red welt on my foot. Then there were two more and they were spreading. I thought this was another one of my allergic reactions to an as of yet undiagnosed substance, so lest I have to use my Epipen and call an ambulance and go the the hospital I quickly down enough benedryl to take down a small elephant and then swallow some steroids. Vivek is fast asleep in the swing he absolutely loves in the living room, and I wander into the kitchen to sit down. I notice some flies near the ceiling fixture and am annoyed, and decide to by some fly strips tomorrow.

Then I realized they are not flies.

They are wasps. 6 of them. Yellowjackets. I never felt any stings on my feet, but Occam's razor tells me that is probably the reason for the welts 10 minutes previous. I fortunately had some wasp/hornet spray in the garage that I don't remember buying but am infinitely grateful I had. I begin spraying the bastards one by one and they instantly drop dead to the floor. Good stuff. Unfortunately this also means I am spraying poison over every sterilized surface that I prepare my babies formula and bottles on. I later had to spend hours scrubbing the entire kitchen from top to bottom and re-sterilize every bottle and nipple and object in the kitchen.

I realize two things. They are coming in from somewhere and I have to stop them. I also have to get my son out of here so he doesn't get stung when I run out of spray, or exposed to the poison I am spraying, or to the poison the exterminator will use once I find one in a jiffy.

I worry they are coming from my attic or an air duct, but then I open up my kitchen window curtains to look in the backyard. There are hundreds upon hundreds of them swarming all over my backyard and porch. They are coming in through the dog door and a spot where I need to replace the weather stripping on the French doors. I tape off the door seams and close off the dog door, and then kill the 6 more wasps that have gotten inside.

I Google my city and the word "exterminator" and call Abbott Exterminators because they start with the letter "A" and came up first. Very luckily they seem to grasp the urgency in my voice and have a guy that can come right away and lives close. He is a little condescending on the phone telling me to stay calm and they won't attack me, but he doesn't seem to understand that I have to kill the ones in my house and can't let them fly free because of my son. I'm sure he also told me to calm down because the string of obscenities coming out of my mouth while I killed the buggers would make a sailor blush.

I call my Mom who quickly grasps the urgency of the situation and races over barefooted in 5 minutes. We run out to the car and I throw in a hastily prepared bag of necessities, then stick his car seat in her front seat without a base and tell her to drive the two blocks to her house very carefully. I find out later she had to call a neighbor to help her figure out how to unbuckle the seat to get him out!

It turns out we had 4 nests up in our backyard tree and one on the side of the house. In 8 years of living here we have never had a wasp problem, but this summer they decided our house was Las Vegas. A bird or something must have stirred them up and made them swarm during the evening forage. The exterminator had some backpack that looked like it belonged in Ghostbusters with a snowblower nozzle, and he sprayed and fogged my entire backyard and all the trees and bushes and the side of the house. He said the poison is strong enough that if they even land on any surface or return to a nest then they will die instantly. I also noted he did all of this without a mask on. That can't be healthy.

On the bright side, finding a regular exterminator was on my list of to do's so he told me he would handle the wasps for free if I signed up for a quarterly service. I told him it might be the truckload of benedryl talking but it sounded like a great deal to me, so I signed something I didn't even read. Fortunately my mother volunteered to take Vivek for the entire evening so I could slip into unconsciousness. On the bright side of that it primed me to stay up all night and switch my body over to night shift.

So for the next two days as an extra safety measure we kept the dog door shut off to make sure they horde died off and to keep our dog safe from any residual chemicals. We have a seriously dumb dog. When we take him on the leash out front to go to the bathroom, he gets all excited and tries to bound off on a walk but won't go to the bathroom. Vinnie finally gave up and walked him into the backyard just past the gate and he finally pooed and peed what he had been holding in during his front yard excursion.

I did manage to purchase some cute Halloween outfits and pumpkins the day before for some photo ops, though I could not find anything truly sized for a newborn after searching 3 superstores and was stuck with cutsie oversized theme outfits and not proper costumes. Maybe next year. I really really reallly wanted to take them to a pumpkin patch for their first Halloween for some cute photos, but I just couldn't risk exposing them and for Tara it was not meant to be. Maybe next year. However I devised my own plan for some cute Halloween photos with a hastily carved pumpkin and a little bit of patience.

I haven't allowed myself to feel sorry for myself for more than a few minutes that things aren't the way I want them to be right now. But when I missed seeing Tara and taking her Halloween photo because of the whole wasp/benedryl fiasco I was truly upset. Fortunately a wonderful nurse at the NICU the next day promised me that if I left my camera she would put her in the outfit and place the tiny pumpkins around her and grab some photos for me when she was in a less agitated state, because when I saw her she had just had a major bronchospasm and needed to rest and not be handled. Thank you nurse Danica and hairy armed guy holding in the pacifier!

Day 74: Coming home!

It was a miracle. My husband's amazing cousin Manu shook hands, sweet talked, cajoled and got us two exit VISAS in two hours at the FRRO yesterday! Then we bought plane tickets for late tonight at 2:20am!!! 

I couldn't believe it. Manu had the guys smiling and laughing at jokes. With his lease to prove residency and a copy of her hospital discharge paperwork showing medical issues that  made extra travel problematic, suddenly the road block of the birth state was no more! They actually didn't even bring it up, and Manu said they were very nice men. However the reception guy claimed that because my paperwork wasn't simplified in perfect order and I had extra documents in the stack and some originals instead of copies, that was the reason he had not put me through...which he did not say the previous day at all.  Not very honest, but I've been told to expect as much.

It only took one of the four men we dealt with to provide a roadblock, but with Manu's magic they helped us quickly. They wanted proof of a plane ticket already purchased, but we couldn't do that until the next day when Manu was on a business trip, and we wanted to get it done while he was still there to be a facilitator. However the guy wrote in "ticket confirmed" even when we had no proof!  Manu says this is how Indian Government is, and when you grow up with it you know how to deal with folks to get stuff done. I think if your surrogacy case has any complications like ours did that paying for a facilitator is well worth it, but fortunately we didn't have to because we are related to the miracle man.

This is one hell of a hard way to have a family, but well worth it.

I'm packed and well rested, but have a headache from stressing out about everything that could go wrong and am trying to relax. The final flight home had weighed on my mind from the very first trimester, and I hope that it has been a lot of worry that is mostly unfounded. I wish we had Vinnie with us, but it is just Mom and me working as a team. I may not sleep at all for the next 24-48 hours. But I think about how strong I've been from the years of painful infertility, the year of the police academy while working full time at a stressful job, the trips to Anand and initial failure, then the months of stressful waiting, then finally the scary premature birth and months of NICU and the final journey to Delhi. I'm strong enough to do this one last leg of the journey to bring them home.

Let's hope we get the bassinet seats, so we'll arrive four hours early to the airport. Let's also hope British Airways has the superior customer service to help us through this. I've got to not be so worried about how the babies potential crying will affect other passengers, because there is only so much I can do to prevent it. I'm more worried about their exposure to germs, but the same holds true.

I can't wait to see the joy on the faces of my family meeting their grandchildren for the first time, whom they each played a unique role in helping bring into this world and bring safely home. But most of all I just can't wait to walk in my front door and place them in their beds and take a deep breath and say a prayer of gratitude. I have a son. I have a daughter. I am a mother. I have a family. The biggest dream I ever had for my life has come true, and sharing it with those that I love makes the picture complete.

Day 63: Part Deux-Deus Ex Machina

So tonight when I'm making my 2nd visit to my daughter and singing The Rainbow Connection into her ear and pondering how I'm singing a song about faith when I have so little at the moment, the doctor walks up to me and tells me they are moving her out of the sick room of infected babies. I tell her that makes me happy, but why? She avoids the question. I ask why again. She then tells me they now think the blood culture was contaminated because they are all coming back completely clean now, and so she probably only had a viral infection in the first place.  It was probably all a false positive.

You know that famous photo of the Navy sailor in the ticker tape parade who is so happy he grabs the nurse walking down the street and bends her backwards and plants a huge kiss on her lips? I swear I almost did it myself.

This means that under the original "viral infection" diagnosis she should be discharged very soon rather than 10-14 days!  I'll get it confirmed with our primary doctor tomorrow at 11:30 counseling session, but they have to be pretty sure that her diagnosis was wrong to move her back into the regular NICU rooms right?! 

Tara hanging out with her Daddy on the bed before her hospitalization

This begs the question....should we argue the charges for the dangerous and painful spinal tap procedure and the antibiotics that she never needed in the first place? I now understand why people sue for pain and suffering because I know for the past 2 days I've been suffering tremendously, as has the entire family. Manu had sage advice to wait until she is discharged and in my arms before we argue anything, but he or Shalini will be there with us to fight the charges. It is not unheard of for medical records to get doctored here after the fact for shady purposes, so we will definitely take his advice.

I chatted with a nurse tonight about bathing Tara because a ring of greyish skin that sloughs off is around her neck, and she said she is bathed every morning but she will be more careful and work on that spot and it make take a few days to get it looking normal again. She also told me they change the diapers every four hours, which suprised me because I change at every feeding at 2 1/2 hours and it is always wet or soiled. She did say if they smell a dirty diaper they go ahead and change it thank goodness! Can't wait until she is at home and can get the royal treatment instead of her supposed VIP status.

I would love to tell you that Vivek shows some sign of missing his sister, but frankly I think he is just basking in all the extra attention and loving every minute.

He is quite the drama king, and howls in agony before he passes gas. Tara simply scrunches up her face and turns to the right (always the right side for some reason) and toots then moves on like nothing happened. She will sit around in a dirty diaper for two hours without comment, but if his is more than a little moist he will let you know about it. Worse yet, he won't stop fussing until the diaper change is almost over and you are fastening the last snaps on his outfit.

Geeta gave us all the giggles today and came rushing in the room holding Vivek saying "Hairdo! Hairdo!"  She placed him in my arms and I burst out laughing when I saw she had shaped his hair into a mohawk. She has been comforting me and trying to make me smile and laugh for days now, and I could see she was thrilled to finally suceed after cooking me special meals and offering soothing words and gestures even if I couldn't understand them all.

Mitlesh Auntie says she wants us to leave India with good memories from here. I told her we will...it's just we've been through so much for two months now and we are so homesick. I explained that when you come as a tourist it is a very different experience. You spend your time in search of entertaining things, and have fun with everyday experiences. Let's say you need something from the store. As a tourist in India that could turn into a several hour interesting adventure seeking something, taking in the sights and experiences and working through the challenges along the way. It's the sort of thing you laugh about and tell stories about later. When you have twin babies to take care of and need something and are most definitely not here to be a tourist, it simply a giant pain in the ass. Like the other day when it took Vinnie four hours to mail a letter. But I'll leave you with something cute I saw when walking home from the hospital tonight that struck me as a touristy moment.  Next to the dumpsters were three cows sleeping with a small calf. But one of these things was not like the other. There was a stray dog that apparently thought it was a cow and was cuddled up next to the calf, and none of the cows seemed to mind.