Germ warfare

Long gone are the times when I can wallow in my own self misery when sick. Welcome to motherhood. Motherhood with 2 children meaning quarantines, splitting up the kids so that the other has a chance of staying well, and hunkering down until the damned virus has vacated (hopefully before everyone goes crazy from the plague procedure). There is a true art to balancing the sanity of all... mom because she's caring for the infected, worrying about each new symptom, hoping that she's containing the spread (and not becoming a new vessel for transmission), and sadness for not being able to kiss or hold the babe (for fear of being contagious before being symptomatic). While mom making hourly runs in and out of quarantine for juice, Popsicles, and medicine, dad is feeding the babe...yet again, hoping that she'll take anything by mouth but inevitably ends up tubing the majority of the meal. Day in and day out while hoping that the illness stays upstairs he keeps on the schedule, crossing fingers at each feed that this one will stay down, that all the effort won't be for nothing and that the nutrition will stay down. In the meantime, flu-boy doesn't understand why he's sick, why he's stuck upstairs and can't play with sister, and when this will all end. And our poor little one is frustrated and upset when she sees mom go back and forth throughout the day yet never getting close enough to touch, kiss, or hold her.....

Oh the joys of the flu.

Getting to the heart of the matter

Sitting in Claire's hospital room, yet again, seems to be the only time I find to write in the blog nowadays...

Strangely enough it started out as a dark and stormy morning. The weather forecast called for freezing rain and snow and it did not disappoint. Because of this Owen stayed with my sister, her kids, and my mom the night before so we didn't have to worry about waking him up early to brave the winter roads. We were to check in at 7:30 am at Primary Children's hospital for Claire's procedure which was to start at 9 am. Luckily we live close and the roads weren't too terrible so we made it safely. We checked in, did the pre-op routine and by 9:30 we were walking down with the anesthesiologist from pre-op to the cardiac cath lab. I was so relieved to see an old co-worker Mary as her nurse. I had worked with her years ago on the IV team and knew that she had worked in the cath lab in the past. It's amazing how different it is when you're the parent on the other side, putting your child's life in the hands of someone else... So knowing and trusting the capabilities of her caregivers was defiantly reassuring. As Mary took Claire from my arms she handed me a pager that would go off when they had finished up with Claire's PDA closure. They told us it would be about 2 hours. Two hours... 

Two hours is a super long time when you know that your baby is under general anesthesia and that her heart is being repaired. So... Jake and I went to the hospital cafeteria (which was our first 'date' in over a month) and did some stress eating. After eating our second breakfast I went up by the NICU to use their pumping/breastfeeding room. Within 10 minutes after finishing pumping the pager went off. I expected to feel relieved but since it had only been just over an hour since leaving Claire I was more worried than relieved...why were they paging us so soon? Was everything ok or did something go terribly wrong? 

We made it down to the cath lab pretty fast and Mary was at the door giving us a thumbs up. All was good. Her dr then showed is images of Claire's heart, the PDA and VSD's and the coil he had put in place to occlude the PDA. We saw Claire roll by all bundled up in blankets on a stretcher, oxygen mask up at her face. As they wheeled her to the PACU her dr told us that once she was awake we could see her in post-op. Whew... Our baby girl was ok.

This morning we are awaiting her discharge. We had known about the 'extra' holes in her heart, the ASD, VSD's and PDA while she was still in the NICU but hoped that they would close on their own as she grew. After a follow-up echo in September and a cardiology visit in early December Claire's doctor said that the murmur was still there and that since they hadn't closed on their own, it was time to get the PDA taken care of. Her PDA, (which is a hole present in all babies in utero that normally closes at birth) in addition to the ASD and VSD's were causing already oxygenated blood to go back to her lungs which increased her metabolism and made her body work much harder to compensate. There is thought (and hope) that closing off her PDA will allow her to put the calories she takes in towards growing rather than just functioning.

These 8 short months of Claire's life have been anything but dull, and I kinda expect things to continue that way.., no more dull moments in the Hickenlooper household...

Gaining perspective

It's amazing what it takes to truly gain perspective on what's important in life. Sitting here, writing this in Claire's hospital room I feel blessed.

I was at a tipping point. I honestly felt like the littlest breeze is all it would take for me to lose it. Flat out lose it. It had been more than a year since I'd had a full nights sleep free of worry. It had been seven months since I hadn't worried hourly about the well being of Claire and whether today would be the day that we need to take her to the hospital for not eating. It had been longer than I could remember since jake and I had felt a relationship other than the constant strain of parents In desperation to get their child to eat. And poor Owen was feeling the brunt of it, despite his chill,happy-go-lucky nature it was apparent that he felt the tension. And I couldn't take it any more... I needed a break from it all.

And then I heard the news. On the day that I had planned to go out for a 'girls night out' to escape from the downward spiral I was feeling I got the news that my co-workers baby (who had the exact same in-utero diagnosis as Claire) had passed away. At 23 weeks pregnant her little baby who had braved the same prognosis as Claire was gone. My heart sank and all of the fear and desperation and agony that I faced for so many months came rushing back to me. So easily this could have been Claire. I had been told time and time again that this fate could have been ours. Only god knows why Claire made it and her baby didn't. I wish I had these answers but I do know that all of a sudden I wasn't so ready to lose it. Claire's feeding problems didn't seem quite so bad now.

She is here. And that's all that matters.

She is always going to be our challenge. That I know. But these are challenges that we can live with.

So as I sit here, now with little miss Claire in my arms I know that we're blessed. Getting a feeding tube is just one more step along this journey of our lives. And this little fighter is going to continue to show us all just how strong she is.

6 months and 10 pounds later...

I am actually being presumptive saying 10 pounds because Claire hasn't officially hit the 10 lb mark -yet- but she should any moment. She has reached the 6 month milestone though... A half a year old already! It is really quite amazing to see how far our little peanut has come in these past few months, never ceasing to show us what a fighter she is and how the world pretty much does revolve around her.  This post is a celebration of how far we've all come over these past months but it's also my way of getting out some fears and frustrations because despite how far we've come, the journey will never be over.

 I honestly thought that life would be easier at this point... Easier than the multiple daily visits to the NICU, easier than the worried months of pregnancy or the first days home without 24/7 support.

But it isn't.

 Each day is still really hard in its own little way, but amazing as well. Our daily (hourly??) struggle at this point revolves around eating and weight gain. Despite never having made it onto the growth charts, either in utero or after birth, Claire has maintained her own growth curve for the most part. Since we have a scale at home and are weighing her weekly (sometimes more frequently depending on our level of concern/paranoia) we know that she averages a growth rate of 4 ounces a week. For a couple weeks last month and now just the past week she has only put on an ounce a week... Which is concerning to us and her pediatrician (who up to this point has been fairly lax, sitting back to see what she does).

The aspect that makes things super hard for me is that there is absolutely no consistency or any real answer as to why. Why she doesn't get hungry like most babies, why she eats so little when we can get her to eat, why she eats so much better for her dad (sometimes), and whether there is something else going on that we just don't know about. I guess that is what I really fear is that there really is something else going on that just hasn't been found yet. 

We have seen a nutritionist and occupational therapist and are scheduled to see an inter-disciplinary team at Primary Children's hospital in December about Claire's feeding and weight issues. It seems like most weeks have turned into the game of 'two steps forward, one step back', but I guess as long as we continue to move forward... 

****this post took a couple weeks to finish- as of today Claire is 10 lbs 4 oz***

Settling down

We have had quite an eventful year up to this point. From not knowing whether Claire would make it or not... to spending a month and a half in the NICU with her...then to having her home with us, healthy and keeping us on our toes every day. We've also watched Owen grow so much these past months, he has gone from being the baby to becoming a big brother who can be the sweetest and the sneakiest little man. We just bought our first house together and although still in the unpacking stages of moving in, have begun to truly feel at home. It seems like with all that has happened over these past months, the dust is finally starting to settle.

Miss Claire is now 4 1/2 months old and weighing in at 8 lbs 12 oz today. She had her third echocardiogram last week which showed she still has a ASD, VSD's, and a PDA... but she is still asymptomatic so no surgery is needed at this time. We took her up to the family cabin last weekend and I was a bit worried about how she would do with the altitude gain (from 4500 ft in SLC to 8200 ft) but she seemed to be fine. We still feel like it's a daily struggle to get the calories in her that she needs, but she continues to maintain a steady growth rate.

Jake and I are still alternating our work days so that we can avoid daycare. It seems harder this time around since it oftentimes feels like we're single parents during the day, then just see each other for a couple hours at night during the dinner/get ready for bed and collapse time. I guess this is how it goes for a lot of families...

We haven't given up the dream of owing our own land and having a little farm. We're hoping that buying a house will be a step in that direction since it will give us experience with our yard (urban gardening??) and hopefully a little equity. Till then we just keep taking things a day at a time.

Finally get it

So... I think I finally get it. For some reason it took having a second child to fully appreciate mommy-hood. I used to laugh at and get annoyed by moms who are (self-admittedly) absent minded and frazzled, with juice cups hidden around the house, and consistently late. Well... I have become that mom.

There is this certain time warp that occurs once you become a parent. I guess it actually starts during the nine long (yet strangely short) months of pregnancy leading up to the birth of parenthood. Then once baby comes life becomes a beautiful blur. The days (and nights) can seem long but the weeks fly by. There is a definite irony to the first few months of of a new baby, you want to treasure every moment of your new babe, but the pure exhaustion and adjustment to this new little person seem to make this almost impossible... and make time almost dreamlike... Perhaps because you are half asleep most moments of the day...

And then it happens. Somewhere, sometime over the past few months during diaper changes, middle of the night feedings, and wiping 'boogers' from your 2-year olds face... You have become that mom. 

Over the past few months I have found myself on autopilot more than I'd like to be. Silly things like eating, fastening my bra after nursing, and showering regularly (yep...sorry) seem to slip my mind often. On the plus side I get quite a bit accomplished during my pumping sessions of the day, (like write a blog post).

I guess in the end, the point I'm trying to make with all of my rambling is that despite the insanity of it all I get why people do it. I get the 'new parent' stereotypes you see in the movies and the look that veteran parents give to the parents of little ones. Despite the craziness and sheer loss of control I feel on most days... I love it.  :)

Putting down roots

We have been back and forth soooo much when it comes to where we are going to settle down. Back in the days of free-spirited farming we decided that we wouldn't move back to Utah...but we did. Then when we moved back to Utah we decided that we weren't going to stay...but we did. And now we are buying a house... in Utah. Our long term goal is still to move out of Utah but at this point in time I think that this is where we need to be.

After looking endlessly online at homes, both in and out of Salt Lake we found one to look at back in November of last year. After starting the mortgage process and meeting with a mortgage consultant we discovered that paying off your debt may feel good but it leaves you with no credit score...which makes it impossible to get a home loan. So six months, one (awesome) baby, and thousands of dollars later we now have credit scores and have found a house. Woohoo... but just for a few years...we're not staying in Utah permanently, right??