One Week

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 💙

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Update

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!

Our Champion

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 Aaron Valji

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.


  

2 More Pictures and Brief Story

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. 💙

   
 

Bust

And now we are on the road again – back home to West Des Moines.  My blood pressure was normal, baby looked good, all my labs came back normal, and exam was normal. No preeclampsia. 

Both doctors who came in and spoke with me recommended we go ahead and go home. I am thankful – we have a long stay ahead of us in Iowa City as it is. At least I keep getting definitive answers!

So – ultimately – practice run. Now we know what we need to get done at home and what we need to organize in our bags for the next trip. 

Unless anything changes between now and then, we will be heading to Iowa City Tuesday afternoon for an 8 pm induction. 

Iowa City or Bust

I was hoping the doctor’s appointment this morning would be definitive, and it was, but not necessarily in the way I was hoping.

We just got on the freeway, and we are headed to Iowa City. 

What I know: Jalebi’s movement is good, amniotic fluid levels are good, blood flow through the umbilical cord is good, and I am measuring one week behind (normal). I am only dilated to one cm.  However, Jalebi is measuring small – he only weighs around 5 lbs, 10 or 11 oz (They could be as much as a half pound off on this).  And my blood pressure was high today. (Granted, they took it right after I found out my baby boy is measuring small – we really want him to be big – so yeah, I was a little frazzled at the time).

Still, my Ob in town contacted Iowa city, and they decided they want to evaluate me today. It doesn’t necessarily mean I will be admitted or induced today, but I will be checking in to Labor and Delivery for more tests. 

So – here we go. The next chapter begins. Thoughts, prayers, vibes, encouragement all appreciated.