I only shower every other day now.

As a nanny, I used to be incredibly organized.  I had a bit of an attitude and didn’t understand how parents could stand their house being unorganized and messy.  Yes, you can laugh now.  Things you don’t realize until you are a mom.  Especially a mom who has to adhere to a strict every-three-hour feeding schedule and is exclusively pumping because we are closely monitoring the baby’s intake.  The mess and chaos drives me batty; but when it comes down to it, when faced with the choice of dishes or cuddle time with baby, guess what I will pick every single time.

At three am, when the alarm goes off and I have to wake my sleeping baby boy to eat his bottle, I find myself thinking that if he were just a “normal, healthy” baby:

• I could get more than a couple hours sleep at a time, because he could eat on his schedule instead of the cardiologists’ schedule.
• I wouldn’t have to spend so much time pumping and cleaning bottles, because he could feed directly from the source.
• Diaper changes wouldn’t be such a dance, because I wouldn’t have to be so concerned with keeping his casts clean and cry (Oh yeah – he has full leg casts now, due to his flat feet.  He will be wearing them for the next 4-5 weeks, with weekly changes, and then he will have a brace until he is walking independently.)
• I would feel much more confident in my abilities and wouldn’t always be worrying/second guessing myself/feeling guilty for not doing a better job.

And then I have to quiet my brain.  Because if I had that elusive, “easier” child … I wouldn’t have my Kiran.  I wouldn’t have this amazing, tough little guy who surprised us all by being sent home a week into his life.  The dude who has been able to lift his head for weeks now – who is already strong enough and has figured out how to move his legs easily even with heavy casts.  This boy who loves to have his hands up by his face.  Who, even still, has the sweetest, most precious little cry I have ever heard.

It is hard – the challenges haven’t stopped yet and we are only just over three weeks into this journey – but I wouldn’t trade Kiran for any other baby.  Ever.  The feeding tubes, the leg casts, the pulse oximeter … it is all just part of our life with him.  And if he can have a good attitude about it – he is seriously the most easygoing little man ever – I can work to always steer my brain back to the good.

If only doesn’t do me any good, nor does it do my family any good.  I will take the worries, the challenges, the fears, because I would never trade this baby I love so much.

I do, however, need to figure out how to fit in a daily shower….

Fourteen years ago today, my brother left this world. I miss him often, but I especially miss him during the big moments of life. Bringing Kiran into this world and everything we have experienced so far on his heart journey is one of the biggest moments yet. I wish Aaron was here to witness his nephew’s strength. I wish he was here to provide that perfectly timed comic relief he was so talented at. I know he would have found the whole uncle thing hilarious and cool, and I wish I could have seen him in that role.

Kiran has already heard stories about his uncle, and he will hear many more as he grows older. His middle name came from his uncle, and I want him to know just how special that is. I hope he has the spirit and spunk Aaron had, as I think it will give him the energy and strength he needs to tackle his heart defect.

I had Aaron in my life for seventeen years, and I have now had Kiran Aaron in my life for seventeen days. Both boys have impacted me greatly, and I wouldn’t be who I am if it weren’t for them. I cherish every moment – I never know how many I will get – but I am thankful for the ones I have lived and am living.

We are all still alive.  In a zombie-like state due to a strict every-three-hours eating schedule, but alive. 

The day we were discharged (a week and a day ago – wow!), we got the results for diGeorge syndrome. Kiran does not have it. This was a huge relief, as it had been weighing heavily on my mind. This dude has enough challenges in his life, and we are so thankful this wasn’t added to it. 

We did come home without the NG tube, but we also had to both show we could insert it in case we ended up needing one. We opted to put one in the next day, as he was leaving a few ml behind in every bottle and they were starting to add up. Despite eating every three hours and being sure to get in the full amount, K did lose an ounce and a half from Mon to Wed this week. We have now upped the amount we give him eight times a day. I have some concerns regarding the NG tube – it seems we are moving backwards with our progress. Where he was regularly taking by mouth full bottles at the hospital, we are finding as each day passes, we are having to sometimes put more and more down the tube. He does still sometimes finish bottles, but other times he’s too fussy/gassy/tired and eating becomes too big a chore. Hoping we get some good guidance on this from both cardiology teams today and tomorrow (Iowa City and Des Moines). 

Otherwise, dealing with all the regular new mom worries on top of all the novel heart mom worries. We have a pulse Oximeter we hook him up to a few times a day and let run all night while he is sleeping – this tells us his oxygen saturation levels and heart rate. Once these numbers start creeping downward, he will be telling us it is time to plan for surgery. I am so glad we are continuing to see upper 80s/low 90s regularly – I dread the day these numbers go down. 

I am exhausted and overwhelmed and highly emotional. I am fairly certain I cry every day, at least twice. I am told this is normal and may still be at least partially hormonal. I do not know what I would do without the help of my husband and my parents.  

Despite all the worries and uncertainty, and despite the rigorous feed-change diaper-pump schedule, I try to remember to enjoy this time as much as I can. I know we are in survival mode, and it is HARD. But I also remind myself how lucky we are to be home dealing with this hard, rather than in the hospital, dealing with surgery and recovery hard. Though that hard will come, too, in time. 

We really feel all the prayers and thoughts have done wonders for our family. Please keep them coming. I am also so thankful for all of you who have reached out with encouragement and love. Please keep that coming too!  

Kiran Aaron Valji is one week old today!!!  And…we are being discharged today!  More updates later – maybe next week – can’t wait to enjoy a long weekend at home with our baby boy 💙

On Saturday, Kiran was stable enough that we could hold him as much as we wanted.  I think he was passed around between mommy, daddy, and Nana J (Papa Joe had a touch of a sore throat, and, though it killed him, refused to chance it) from about 11:00 am to 4:30 pm!  We couldn’t get enough!  Saturday was also the day they were able to take his lines out and go down to just basic monitoring with an IV placement in case – we haven’t had to use it yet!

Our big goal has been focusing on eating.  He is still having trouble with the suck, swallow, BREATHE business – he forgets to breathe and needs a reminder.  He has been consistently taking around half of his feeding amount by mouth, though, so we will take it.  The initial placement of the NG tube (feeding tube that gets inserted into his nose and goes down to his stomach) was incredibly traumatizing – the nurse had trouble placing it and ultimately opted for a smaller size.  I was completely overwhelmed (and still am) thinking about having to place it myself at home.  As the days have passed, I am getting a little less worried about it, though I am still hopeful he will get this eating business figured out and we will go home without a feeding tube.

Yesterday, Papa Joe was able to hold him…between him and Nana J fighting for their time, I barely held him all day.  However, I was encouraged to leave the hospital and walk to a nearby place for lunch with Arif, and I did get a daytime nap in…grandparents are godsends!

Kiran is becoming more and more alert, especially around 3 am.  I am still not tired of hearing his cry, though I am tired….

The surgeon, Dr. Turek, came by this morning and confirmed what the cardiology team has been telling us: Kiran gets to gain weight before he needs his first surgery!  We are so thrilled to receive this news – the bigger, the better!  We will be moving down to the regular cardiac floor this afternoon, which is one step closer to taking him home.  Our biggest goal is working on the feeding issues, and we will also finally be receiving some of the newborn training we haven’t yet received.  And, of course, we will have to learn how to use all the monitoring devices we will be sent home with…and how to place the NG tube if he needs it….

Still waiting on genetic testing results – still nervous with what we may find.  But, all in all, this has gone so much better than we anticipated.  Kiran is a fighter and just quite the little guy.  We love him so much and are so thankful we may be able to take him home soon!

I cannot believe how well our little Kiran is doing!  He is surprising us.

He was originally going in to the cath lab yesterday to get a better picture of his heart as a road map for the surgeons. However, they couldn’t get an anesthesiology team, so they did a CAT scan to see if they could get the information they needed from that.

What they saw is that the vessels he has taking blood to the lungs are not dependent on the in-utero duct remaining open. They were able to take him off the prostaglandin yesterday, and his oxygen saturation levels have stayed in a good range for him. This looks like it means we will be able to wait for him to grow before he needs his first heart surgery!!!!  We did not anticipate such good news, and we are hopeful his saturation stays in a good range!!

Also – he passed his breathing ‘test’ and was able to be extubated yesterday afternoon!  It was so good to see his face again and to have him be more alert. 

Most exciting of all, both Arif and I got to hold him last night!  

   
 
We both took a couple turns and snuggled him for a good long while. And, throughout the night, he has been practicing taking a little milk from a bottle. He’s been quite the trooper so far and has figured out how to take in a little bit. We both had the opportunity to hold and feed him – and it was so, so good to hear his precious cries throughout the night. 

One piece of more difficult news that is still waiting on a test confirmation: Kiran does have some physical characteristics of a genetic disorder called diGeorge syndrome.  This could be the reason for the heart defect, if the genetic test confirms the diagnosis. We may get the results for the test by Monday, but not before and possibly later. We are trying to not focus or worry about this until we have an official diagnosis, but I do know the implications of this syndrome vary greatly from individual to individual. 

Overall, good news. Kiran is a fighter and a trooper. We are so blessed with him and so lucky he is ours. If things continue to go well (though we understand we may still experience roller coaster-style ups and downs), we will keep moving forward and doing the work it will take to get him home. 

Kiran means ray of light. Aaron is for his uncle Aaron, my brother, who we said goodbye to in 2001.

I plan to try to write out a medical update later tonight when we know a little bit more. I did swindle an early discharge for myself today, so I have been able to be with Kiran most of the day.

  

Jalebi was moved from the NICU to the PICU this morning, mainly because the NICU needed his room – since the PICU is where he would be after surgery anyway, it’s been nice getting to know some faces there. 

He had to be intubated later this morning – he was forgetting to breathe on his own. It is a common occurrence for heart babies – they had actually commented they were amazed he was breathing so well on his own. He kept it up for about 12 hours, but he needed some help. It was our first huge dose of reality. A very scary experience and very emotional. It is hard to see him like this, and he has had to be sedated so he is not uncomfortable with the tube. 

I am spending as much time with him as possible while (barely) taking the time to recover myself from the long day yesterday. About to head back up there so his daddy and I can make the final decision on his name. 💙

   
 

Born October 21, 2015 at 11:06 pm. 5 lbs, 9.4 oz