It is 3 a.m. It has been a long night. Kiran had his two month appointment yesterday and got his first round of vaccines. Largely, he’s been doing ok. He had a very low fever – not even really considered a fever, even, but a little high for him – and he has definitely been a little fussy. Nothing snuggles won’t fix. 

He is actually sleeping very well and seemingly comfortably tonight, but his pulse Oximeter alarm keeps going off. I keep jumping up to check on him, and he has no symptoms. His coloring is fine, and his breathing is not labored.  I’m not sure what is going on, but we see the cardiologist this afternoon (thankfully, an already scheduled appointment). 

The worrying and what ifs are keeping me up, and when I do finally drift off, the alarm sounds again. I have finally given up on the concept of sleep at all – not to say I won’t still lay down – I just surrender this night’s sleep. 

I am sure it is the first of many sleepless nights, with hospital stays and normal childhood illnesses in my future. I don’t even really mind the not sleeping, other than the one side effect: when I am tired, the tears flow much more easily. 

Kiran passed his hearing test last week!  It was good news I desperately needed. We will have to keep up on checking it, however, as babies that spend time in the hospital are more susceptible to hearing loss. But for now – he hears well!

He didn’t gain much weight last week between Tuesday and Friday – only one ounce – so our home health nurse (who we absolutely love!) set a goal for tomorrow. He seems to understand the implications of this, because he has decided to take more 85 ml bottles and a couple 90s thrown in at night when he goes a little longer in between feedings. We went ahead and bought a scale – we haven’t compared it to the nurse’s yet – but it looks like we should meet our weight goal tomorrow!  He weighed in on our scale at 8 lbs 10 oz this morning, which means he is officially 3 lbs over his birth weight in less than two months!  We will take it. 

I don’t even notice his growth since I am with him every day, but he has also officially grown out of his newborn clothes. Crazy. I am so glad we got so much use out of them; I know many aren’t as lucky!

My big boy:

   
   

In the last few years, when I was seriously dreaming about starting a family, I often thought to myself that I could never handle a child with special needs.  I am not sure I understood exactly why I felt that way, but I think I understand now.  It has nothing to do with not being able to love them or not dealing well with them being behind or “abnormal” – it has to do with my anxiety and stress level.

You see, I am a worrier.  I always have been, and, despite trying many strategies over the years to change this, I think it might just be too deeply embedded in my DNA.

This morning, I had a very normal Mom moment.  I cut my poor baby’s finger while trying to trim his fingernails.  I knew this would happen – I was warned by my pediatrician it happens to almost every mom at some point – so I wasn’t too worried – at first.  But then it wouldn’t stop bleeding.  Ten minutes went by.  Ten minutes is a long time.  I broke down and called the pediatrician’s office and talked to the nurse.  She assured me it should stop bleeding; some babies just take longer than others.  If it didn’t, I was to bring him in.  Thirty minutes later (I kid you not), it finally stopped bleeding.  There were moments during that time I was convinced this would be what he would die from – blood loss from his mom’s failed attempt at trimming his nails.  Yes, my mind went there.

So you can only imagine how I handle some of the harder stuff.  Last week was especially hard.  I went into the week knowing it would be a busy week.  Monday morning, my incessant worrying about his coughing got the best of me, and I went to see the pediatrician with fears of aspiration.  No signs existed to indicate he was taking food into his airway, but she ordered a swallow study to be done anyway.  With a heart baby, it’s better to be safe.  I went home with that worry lodged into my brain, and every bottle was a possible landmine for the rest of the day.  I worried with every cough – every cry – I was home alone with him all day (due to our internet being down, Arif was working at my parent’s house)  and all evening (Arif plays pool on Monday nights)…He was crying so hard at one point Monday night, I was panicking – were his lips turning blue?  I couldn’t tell.  Maybe they were.  Should I call 911?  I had lost all confidence in my ability to notice if something was wrong with my baby boy.  I am still not convinced I will catch everything – I am so afraid I will miss something vital to his well-being.

And that was just Monday.  The week pretty much continued on like that.  The home health nurse put my mind at ease about some of it on Tuesday – for a little while – and Wednesday was a bit better.  The worries were still there but quieter.

Thursday morning, we had the swallow study.  Lo and behold, though they didn’t see aspiration, they did see pooling in that direction.  Recommendation: Go back to the preemie nipple and feed him side-lying.  It was good to know I wasn’t crazy with my worries, but this has been a difficult transition.  Kiran was taking bottles in 15-20 minutes, and now it takes him a full half hour…Although today, he has taken two bottles in just over 20 minutes, so maybe we are making progress on this.

And Friday, we went to Iowa City.  Casts came off; brace went on.  I had some worries about that, too, of course – I already called – twice- to speak with the orthopedic nurses about his feet this week.  At least I am learning to call and ask questions – to get help – instead of just stewing in my worries.

But the biggest worry, threading in and out of all these other worries, is in the last week, we have noticed Kiran’s oxygen saturation levels start to go down.  We were seeing him firmly in the low 90s/upper 80s, and now he seems to be dwelling in the mid 80s most of the time.  It is hard to see this change, as I know it means surgery is drawing closer.  I have had to continue to remind myself that surgery is still going to happen – sometimes, because things have been going so well (for the most part, all my other worrying aside), I forget this reality of ours.

I just don’t know, sometimes, if my heart can take it.  I don’t know if I was cut out for this – any of it.  The flat foot with casting and braces would have been enough to worry me immensely.  The feeding issues we have experienced would have been enough to stress me out.  But these things are the least of it, and that is why I’m not sure I can handle having a child with special needs.

But I do.  And I have something else to worry about today.  We are going in for his third hearing screening – he failed his first two.  And as I look at him sleeping in his crib next to me as I write this, I can only hope one thing: that he doesn’t inherit my anxiety.

 

Kiran got his last set of leg casts on yesterday to correct his flat feet. We get to have them taken off next Friday and will then get his brace. Cast graduation and the start of the next adventure!  We are so thankful this could be corrected without surgery. 

The little man continues to take his bottles completely by mouth. This has been such a wonderful time!  It is so great to see him finally getting hungry and wanting food and to be able to follow his lead – since last week, he has gone from 65 ml bottles all the way up to mostly 80 ml bottles!  And he was up six ounces yesterday – an ounce a day – so he is gaining like he is supposed to!  No more NG tube for now. Counting our blessings!

I’m not going to sugar coat this. 

Today, I feel like I’m stuck in the movie Groundhog’s Day. I feed Kiran a bottle, I pump, I change his diaper, I try to keep up on laundry (I can get it washed and dried fairly easily, but the guest bed ends up with a mountain of unfolded clothes on it), I unload and load the dishwasher (This I do keep up on daily, because 6 of the 2,387 bottles we go through every day can go in my handy dandy bottle dishwasher thing)…I feed Kiran a bottle….the cycle continues. 

I don’t fold clothes neatly anymore. I don’t even organize my clothes when I put them away. They just all get shoved in a single pile on a shelf in my closet. I have no idea what even fits me or what clothes I even own. I tend to wear exercise/pajama pants and zip up hoodies, and that’s about it. 

I put away wet dishes. If the dishwasher is clean but not quite yet dry…I don’t have time for that. A piece of me dies every time I put a bowl with water droplets in it in the cupboard, but something has to give. 

I jumped at the opportunity to have Arif finish a bottle with Kiran so I could take the dog out for a walk this afternoon. It broke up the monotony and reminded me I am more than just a mom/housewife. 

Not that I’m not living the dream. I am. Truly. It’s not even tongue in cheek. It’s just that the day-to-day reality of this lifelong held dream of mine is really difficult at the moment. It’s worth it too – every time Kiran grasps my finger tightly in his little hand or lifts his head up to reveal his scrunchy old man face…he really does make up for peeing in the middle of every single diaper change today. 

I knew it would be hard, and I know our situation has several more challenges involved, but it is really true that nothing prepares you for this. I don’t know how working moms do it all – I don’t know how single parents do it all – I don’t know how people with no family nearby do it all – I am in awe of every single mom who has ever survived the newborn stage with her sanity somewhat intact. 

And I am thankful I have a husband who senses when my sanity is slipping and encourages me to take a shower and take some time to pump (and write – I’m multitasking)…and I am thankful I have parents who check in daily to see if we need help. I am thankful for Help-a-Heart and all the amazing heart moms tackling their own busy lives that have taken the time to reach out and encourage me. And I am thankful for every one of you who takes the time to read my thoughts, because this blog is another thing that keeps my separate self intact. 

My dad is driving Kiran and me to Iowa City for his second round of legs casts.  Things are feeling a lot more calm today than last week. 

It’s comical now (kinda), but about an hour into our drive to Iowa City last week (this was with my hubby), I realized I had left the bottles I had carefully prepared for the day…in the fridge at home. (Bad Mom!  I need sleep….). I could not shake the feelings of guilt and panic until we stopped at hyvee and bought bottles and formula – and until I was able to find a pump and feed him. Despite the grace I would provide anyone else in this situation, I am still not able to provide myself with it. I think about it now and still feel like a failure. 

In my brain, I get it. I was tired, I had a lot to remember, it was our maiden voyage with him to Iowa City for appointments since being discharged after birth…. But a mama’s heart carries a lot of expectation and guilt (and this mama has always been that way anyway). 

Speaking of feeding my baby, it feels like my days revolve around just that. If I am not physically giving him a bottle, I am pumping to make milk for him or changing a diaper because he’s been fed. It is all about food nowadays at my house. It can get overwhelming – especially the constant pumping – but I am determined to stick with it as long as physically possible. One year feels like a lofty goal now, but I hope to at least make it to the six month mark. Trying to set my expectations so I don’t feel like a failure later on….

Also speaking of feeding, we seem to have had a breakthrough!  Kiran decided to start consistently taking his bottles by mouth. The last time we used the NG tube was Friday at his 9 pm feeding. On Sunday night, he managed to pull his tube out, so we left it out. So far, so good. He continues to take plenty by mouth and even seems more hungry now that the tube is gone. We have to see if he is able to keep gaining weight this way, because it takes a lot of energy to eat…but it’s certainly a nice break right now. So nice to be able to follow his cues more and see him more hungry and happy. 

My hungry, happy hunk:

   
   

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!