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??

3 months

3 months old

And 7 pounds (1 oz)!

Rhythm of life

Truth be told...I never wanted kids. I wasn't one of those girls growing up that dreamed of being a mom. I dreamed of being a vet or a doctor or a figure skater (?!)...but not a mom. My, my how times can change...

In all honesty I cannot imagine my life without Owen and Claire. They have changed me in ways that nothing else possibly could. I have come to realize things, both good and bad, that I didn't know about myself before becoming a mom... I'm also pretty confident that I'll never wear a bikini again. ;)

Claire has been home from the NICU for a month now and I've been back to work for two weeks. I think we are beginning to get into a rhythm of sorts... figuring this 'parent of two kids' thing out. I never realized beforehand that going from one child to two is an exponential leap. It sounds so innocent to say 'yes, I have two kids now' but the implications of having two kids under 3 years old is...hmmm... I can't think of a word that truly describes it, but it sure makes having one look easy.

Owen is super cute with Claire and is doing a really good job at being a big brother. The little green eyed monster comes out from time to time but for the most part the addition of Claire to the family has been a pretty good one for him. I have Owen and Claire on Mondays, Wednesdays, and Fridays while Jake works then on Tuesdays, Thursdays, and the weekends I work Jake is Mr. mom.

I'd be lying if I said parenthood didn't have its up's and downs, but I wouldn't change anything.
 

Enough

I think it's pretty safe to say that we've had enough for now. I've had enough of experiencing what my patients have felt and I know poor Claire is ready for a good, long break.

I have worked for 12 years in the O.R's of labor and delivery, and for both of my children's births I experienced the O.R's from the patient perspective. During my many years in labor and delivery I've dealt with numerous patients who've had their babies whisked away through the NICU window, not knowing how their baby will do or if they will ever see them again. Well, I have now experienced the NICU world personally as well. During my two year hiatus from L&D I spent almost a year on the IV team at Primary Children's... And what would you know, I have now had the PCMC ER/numerous IV pokes on poor Claire/inpatient admit experience.  I can now honestly say I've experienced firsthand what so many of my patients have. And now I say... Enough. Poor sweet little Claire has had enough for now.

Home

After 48 days she's home :)

It takes a village

On this eve of Claire's homecoming I can't help but think of all of the people who have been such an instrumental part in helping Claire and Owen (and us) get through the last few months. I have always felt like a pretty independent person, not needing or asking people for help even when I know I need it...but this past few months have been humbling times. It has really made me embrace the fact that it really does take a village to raise children and that everything happens for a reason. Though we might not be able to see it at the time people come in and out of your life at certain times for certain purposes and you just have to embrace it.

First and foremost I have to say that without my dear friend Wendy I don't know what we ever would have done. She has been there time and time again for Owen (and us) for all of the OB visits and tests, for my entire hospitalization, and consistently during Claire's NICU stay so that I have been able to visit multiple times a day. Wendy has become Owen's second (and probably much more fun) mom as well as a constant support for me throughout this roller coaster of emotions that we call Claire.

My sister Deborah and her kids have also been an amazing support and source of entertainment for Owen while I was on bed rest and during the NICU days. Having them just minutes from us instead of two states away is a blessing for all of us.

One constant that I often take for granted but love dearly is my mom. Since the beginning (...like since my birth) she has been my biggest supporter through everything, especially the birth of my children. Age can't slow her down and even at 72 she still gets down on the floor to play cars with Owen or push him around on his bike. She makes meals and brings flowers, sends cards and brings gifts, she is the epitome of mom.

The nurses that cared for me and especially Claire's nurses are a godsend. I am so thankful for Libby and Heather, Claire's primary nurses. They got to know Claire and cared for her like one of their own family. It is an indescribable feeling to leave your newborn child at the hospital while you go to your own home. Saying goodbye day in and day out is a very hard thing -but- knowing that the nurse caring for her is not only clinically competent but also caring makes it a little easier. While I was away they essentially became Claire's substitute mom, making sure that she is well taken care of... and this is a job you can't (and wouldn't want to) trust to just anyone.

And of course Jake has been an amazing partner in this journey. From the beginning when we didn't know if Claire would ever be.... well, Claire he has been there 100%. He was my drill sargent while on bed rest and Mr mom while I was away in the NICU with Claire. He stood (well, he actually sat) by my side in the middle of the night during those first days helping me pump when I didn't have the strength and he made it to all of Claire's cares so I could rest. He has also gotten Owen to bed every night so that I can be with Claire in the evenings (to hopefully expedite her coming home).

There have been countless other friends and family who have watched Owen, brought in meals, hoped and prayed for the health of Claire, and just been there for us. It truly is amazing. Although when all of this first started I thought I could never get through it... I have been able to because of all of you.  Thank you.

Life in the NICU

As day 38 comes to a close I figure its time to describe the life and times of Claire in the NICU, though since I'm not there 24/7 it will have to be my version of it.

Now that Claire has proven herself to be medically stable our days start and end pretty much the same. I wake up to pump, then get ready for the day, usually with the assistance of sweet little Owen, always the early morning riser. Then it's off to the hospital for Claire's 8 am cares. After scrubbing in I head back to room 6 to see whether she is waking up yet. Then it's time to take a temperature and change her diaper. Claire is pretty consistent in this area, she almost always waits for a clean diaper to poop in (why not???). At this point her nurse does a quick assessment then it's time to start breastfeeding. This is the time when all bets are off... No one but Claire knows how this next bit will go.

And then it starts all over again.

There are so many milestones that newborns reach, each of them fully amazing to us as parents but NICU milestones are different. Not needing assistance breathing or oxygen was (thankfully) a quick one for Claire, maintaining her temp and graduating to a crib came soon after. Moving from the high acuity room 1 to a feeder/grower room was definatly reasurring. The absence of an IV when we came in one morning was a great relief and not needing her glowing 'bili' blanket made life much easier (although she did lose the cute glow worm effect). Increasing her feeds, milliliter by milliliter is an ongoing one, as is learning the ropes of breast and bottle feeding. One of the final milestones we are looking forward to before her discharge from the NICU is the lack of need for her NG tube.

Close to home

The emotions that arose earlier today when I was told that Claire might be gong home this weekend were intense to say the least.

The past couple of weeks have been a roller coaster in regards to her feedings- will she be awake? Will she be interested? Will she have the stamina to nurse for long enough? Will she ever go home??? So on Friday her nurse Libby thought that trying her feedings ad lib, on her own schedule, might be what she needs to get this feeding piece down. A new neonatologist started on Monday and he, along with the nurse practitioner over Claire, agreed with the plan so we cut off her NG feedings. I didn't feel that things were going all that great since she was just barely meeting her minimum intake (half of what she was taking before) and her weight was down several ounces, but after rounds the Dr and NP told me that if things kept going the way they were we would be taking her home this weekend. Shit. Really? This weekend, as in 2 days away??? Claire, you've got some eating to do!

Scrunchy face

The first month

It's almost impossible to imagine that Claire has been in our lives for a month already, though in all honesty the first week was such a blur that I think that I feel a little cheated.

The first 2-3 days consisted of me pumping in my hospital room in-between visitors and nursing assessments, then trying to make it to the NICU for Claire's every 4 hour 'cares' (which at that time consisted of a diaper change and temperature). Initially she was in an isolette to help her with temperature regulation, but because of her being the fighter she is, she was in a big girl crib within just about a week after being born.

Our biggest concern (after knowing that she was more stable than expected) was whether there was a perforation or other issue with her bowels. We wouldn't know this until she started taking oral feeds and since breast milk (colostrum specifically) is the absolute best the doctors wanted to wait until my milk came into feed her. No pressure there... I kept pumping and doing manual expression day and night but things seemed to be very slow going-especially since it seemed everyone was watching and waiting... Finally at day 4-5 I was able to get colostrum for miss Claire and they didn't see any initial signs of a problem but they wouldn't know for sure until she worked up to taking a full feed. At this point a NG tube was placed so they could give her the breast milk. Prior to the NG tube she was receiving all of her nutrition from an IV which started out in her hand, then she had two in her poor head. Luckily (and thankfully) after the second head IV went bad she was taking enough through the NG tube that an IV was no longer needed.

While in the hospital it was relatively easy to go back and forth between the NICU and my hospital room but on day 5 I was discharged and we now had to figure out when and how (who would watch Owen) to get to Claire's cares which were now every 3 hours. We were (and still are) extremely blessed to have AMAZING support from family (moms,  Deborah, Jeannie) and my friend Wendy so that we were able to make regular visits during the first couple weeks while Jake was off work.

From the very beginning Claire showed us that just in case we were wondering, yes- she was the fighter we thought she was while in utero. She has showed us every day that she is running the show... Feisty yet sensitive, and a bit of a princess too :)

Today, on her one month birthday, she was diagnosed with a VSD (ventricular septal defect) which basically means  there are several little holes between the 2 ventricles in her heart. Claire,being the the tough little girl that she is, has no major symptoms (other than being tired) and her body seems to be compensating well. The cardiologists have said that most likely she won't need surgery and we will just need to follow up with them in a month.

I think it's safe to say that our little Claire has been and will continue to be full of surprises...

Best Mothers Day ever

An amazing 2 year old, a healthy little 3 pound girl, a supportive husband and ice cream... What else could a mom want? (Sleep excluded)

The littlest peanut (AKA Claire is born!)

After weeks... well, months really, the waiting finally came to a close. It is amazing that after each and every time of going in for a non-stress test, cord dopplers, or ultrasounds wondering whether 'today would be the day' when the day finally did come it seemed too soon.

I had been on bedrest for 3 weeks for mild pre-eclampsia, so at my 36 week OB visit my doctor said that it was time to schedule me for a c-section. This was a Thursday and I was scheduled for the following Wednesday. After leaving the doctor appointment I couldn't believe that it was finally time to have this little baby. I still had one more NST to go the Monday before my scheduled c-section and true to the course of this entire pregnancy, the unexpected happened...my blood pressure had spiked and the protein in my urine had doubled since the previous week. Luckily my doctor was on-call for that entire week so she came over to the triage and said the words I had already been hearing in my head... it's time.

I was admitted to labor and delivery around 10:30 on Monday the 22nd of April. Jake, my mom, Wendy, and Owen made it up to the hospital within an hour after my admission. My nurses Nikole and Kalli started me on magnesium and began prepping me for my c-section. Since it was a very busy day in L&D (and I had eaten breakfast around 6:30) I was told we would go back to the operating room around 2 or 3 in the afternoon. Around 1:30 Dr Edmunds came into the room and said that we were up...it was time to have a baby. My emotions were all over the place at this time, and in addition to the weird feeling from being on magnesium was near losing it. I was teary to say goodbye to my little man Owen, knowing that within minutes he wasn't going to be an only child anymore. I feared for the worst in the delivery, knowing that there were no guarantees of how our little girl would do, whether she would even make it. I felt some sort of control, keeping her safe and alive as long as she was inside of me, but once on the outside I had no control of what happened.

I walked back to the OR, got my spinal anesthesia, and the surgery started quickly. Jake was by my side, anxiously awaiting the delivery of our little girl...probably feeling many of the same emotions that I was... and at 2:02 PM she arrived. She came out opening her eyes, looking at this world she was coming into:

The nurse brought her over to us before passing her through the window to the NICU where they were waiting for her. She looked tiny, but good. Within a short time the NICU let us know that she was doing well, weighing 3 pounds 6 ounces with apgars of 6 and 8.

Welcome to the world little miss Claire!!

36 Weeks, the second time around

They say every pregnancy is different. Well, they couldn't be more right.

36 Weeks

At this point in my pregnancy the first time around I was still working full time- going strong- and not really even thinking about delivering anytime soon. My biggest worries then aren't even fleeting thoughts now. 

I'll hit the 3 week mark of bedrest tomorrow, and as super thankful as I am for everyone who is helping out, bedrest sucks. I know it's for a REALLY important reason that I'm staying down but this is the point in pregnancy when you're in a mad rush to get all the last minute stuff done...and nest!! Oh, well...

This is what else has been going on during my down time.

Always fun to try mom's shoes!