Merry Christmas!

Merry Christmas to all of you!

We are so thankful to have been able to celebrate with our best gift ever - little Lucy London.  She's at a tough age to take pictures, especially since she like to blow "bubbles" all the time.  Here are a few of our favorites from the weekend:

6 Months Old!

Lucy is 6 months old!  We can hardly believe it.  She is at such a perfect size for cuddling - even if she doesn't really like to cuddle!  Snuggling her close when she is falling asleep or waking up is the sweetest thing and the smiles she gives when she sees another human in the morning are too cute.  It's fun to hear her blowing bubbles and playing in her crib when she wakes up before we come to get her up.

We've had 3 very good reports this week at her doctor's visits:

1.  Neurology - the doc thought she was doing great and her shunt is still programmed correctly.  We left with some material about what to look for regarding shunt malfunction and plans for an MRI in a few weeks.

2.  Cardiology - Lucy had an echo (which she slept through, thankfully!) which showed that she still has a small murmur/hole in her heart (VSD), but the doc thought that follow-up in a year is all she needs - Great news!

3.  ENT - Lucy still has stridor, sometimes she is perfectly quiet, other times she is very noisy.  At this point, she doesn't need intervention, so we are hoping that it will gradually improve as she gets older without having to have surgery.

We really liked all of the doctors that we saw and feel very confident in their abilities to recommend the best course of care for Lucy going forward.  They are also very helpful in coordinating her care with other docs so that they can take a "whole person" view of her care, which is great.

She is up to 14 lbs, 7 ounces, and has almost grown to 2 feet tall!  She is rolling both ways now and is close to sitting up by herself.  Feeding cereal and veggies is going better than a bottle, but it is still slow going.  We are very careful to give her thinned out liquids and she does pretty well - only a few occasions of spitting up, gagging and/or inhaling the food instead of swallowing it.  As we have known, the eating thing will definitely be the longest path on her road to recovery (at least physically).

Overall, she's doing great and continues to amaze us with her progress!  Just think, a short two months ago we were just bringing her home.  I can't help but think of all the families with babies in the NICU over the Christmas season and my heart goes out to them - it would be a tough holiday to spend in the hospital.

Lucy meeting her friend Blake for the first time - he's just a couple weeks younger than Lucy!

We hope that you are enjoying the holiday season with friends and family and are grateful that we have been able to be in contact with so many of you - through emails, calls, Christmas cards or visits. 

Winter Wonderland

We are busy preparing for Christmas here in Minnesota!  We had a nice big snow last weekend - over a foot - and took Lucy out to enjoy it.  She wasn't sure what to make of it - but she couldn't really feel much cold through her super puffy snowsuit!

Because of Lucy's history, we are very careful about where we take her and spend most days at home so that her risk of getting sick stays low.  Our household is getting flu shots and vaccinations against whooping cough and her pediatrician has requested Synagis, a vaccine designed to help prevent RSV, but so far our insurance company has denied it. With her airway problems, getting RSV could be really tough on her and cause additional breathing complications.  However, it's a very expensive vaccine and difficult to get insurance to cover.  Speaking of expensive, we finally received Lucy's inpatient hospital bills - not including the costs of doctors, labs, surgeries, etc., we were charged between $10,000 and $15,000 PER DAY just to have her in the NICU!  I could not believe it when we got the final paperwork and am now, more than ever, grateful for health insurance!

In any case, when we do get the opportunity to go out, it's fun to see how much she loves to look at new things and meet new people.  Last weekend we got together with some of my childhood friends - we go way back to Pease elementary school!  Great to see Julie and Trish and their families!

We do get some visitors at the house - one of them from last week was Lucy's great-grandpa and grandma (my dad's parents).  They absolutely love their newest great-grand daughter and are so happy to have her home from the hospital and living closer in Minnesota.

We have 3 doctor's appointments next week, so we'll be busy the week before Christmas.  We are meeting with the cardiologist, neurosurgeon and ENT and are hopeful for positive reports all around.

We hope you are enjoying the holiday season and taking time to sit back and spend time with loved ones.

Lucy's new "team"

We had our first meeting with Lucy's new pediatrician this week - she was great!  Very clearly, she had studied Lucy's file and knew all about her background.  She asked questions that were intelligent and well researched and we left with a boatload of referral forms for us to follow-up on.

Lucy's Stats:


Height - 1 ft, 11 inches (3rd percentile)
Weight - 14 lbs (25th percentile)

She's growing, but still on the small side of the growth chart; however, these percentiles are based on full-term births so don't take into account that she was born 4 weeks early.  Also, if you've ever met her grandma Jeanette or aunt Kitty, you know that there are some short genes on the Jason's side!

Lucy's new Minneapolis-based "team" includes:

 - Pediatrician
 - ENT
 - Gastroenterology
 - Cardiology
 - Urology
 - Spinal
 - Neurology
 - Early Intervention (through the school district)

Hopefully, some of these visits will be one time or annual visits only and some of them will no longer be needed as she continues to grow and heal from her surgeries.  However, it is a bit daunting for Jason and I to schedule time with and meet all these new doctors!

Meanwhile, today we tried cereal for the first time - I'll let you decide if she liked it or not!

Her bottle feeding continues to go slowly; she can definitely do it, but she just doesn't like to.  We successfully feed her about 1/2 oz per feeding by bottle and the rest through her feeding tube.  We're hopeful that she'll like cereal and baby food better and we'll be able to get more of her food in through her mouth if she doesn't have to suck it through a bottle.

In Loving Memory of Great-Grandpa Charley DeVries

When Lucy was born, she was blessed to have 4 great-grandparents and 4 grandparents still living.  Her last living great-grandparent on the Bryant side passed away just a few short months before she was born.  Sadly, another great grandparent passed away last week - my mom's father, Charley DeVries.  He lived a full life to the age of 91 and lived out his passion for farming and family in Wisconsin, where his surviving wife, Lucy's Great-Grandma Sylvia still resides (pictured above).

We are so grateful that many family members were able to attend the funeral, including me, my sisters and Lucy (Special Thanks to my brother-in-law, Tony, for driving us 4 girls and putting up with us all on the long road trip!).  While taking a 5 month old with Lucy's special requirements on a 5 hour road trip to attend a funeral and burial is not the least complicated trip in the world, I knew that if we still lived in Colorado there was no way I would have been able to make the trip with her.  The reason for the spontaneous family reunion was sad, but the end result was happy, as many people that have been praying for and invested in Lucy's life were able to meet her in person.

We are sad that Lucy never go to meet her Great-Grandpa, as we know he would have loved to hold her and tease her when she got older.  However, we rest assured that Grandpa was singing the words to the song we sang at his funeral (My Jesus, I Love Thee) and that they will meet each other one day in Heaven:

 

I'll love thee in life, I will love thee in death,
and praise thee as long as thou lendest me breath,
and say when the deathdew lies cold on my brow:
If ever I loved thee, my Jesus, 'tis now

 

Happy Thanksgiving!

We have much to be thankful for this year and top of our list, not surprisingly, is little Lucy London.  She is such a joy to us and we are just so THANKFUL to have her home for the holidays.  We are also thankful for each and every one of you that read this blog and keep Lucy and our family in your thoughts and prayers.  So from us, to you, Happy Thanksgiving! 

We have successfully made the move to Minnesota.  Lucy did great on the trip!  We left Denver around 6:30 on Sunday night and drove to Lincoln, NE, where we stopped around 3 am until 10 am.  We then headed the rest of the way to Princeton, MN - Lucy slept 90% of the ride, except for short breaks for lunch and diaper change and for a good hour when she cried through Minneapolis rush hour traffic (we didn't much enjoy that stretch, either!)

We've enjoyed the week at my parents so far, where Lucy got to meet all her her cousins on my side of the family and a good portion of the extended family as well. 

Other than that, we are getting settled, getting used to COLD weather - waking up to sub-zero temperatures in November takes a little getting used to - and finding our new routine before we start doctors visits in a few weeks.

Lucy continues to grow and learn new tricks to show off to all the new people she meets - like blowing bubbles and letting out squeals when she is excited!

Getting ready to move to Minnesota!

For those of you who were wondering, that last blog was written by Jason.  If it is 1:20 in the morning, you can bet that I am sleeping!  To his credit, he has been awesome and taking on daddy duty by himself as I finished up in the office this week and spent some time out saying goodbye to Colorado friends.  He even ventured out with the Baby Bjorn and black and pink diaper bag to take her to a doctor's appointment by himself - her's a picture...feel free to giggle - it's definitely NOT what he thought he'd be doing 5 years ago!

Tomorrow, we are moving to Minnesota!  I can't believe that it's finally here!  We've been talking about it and planning for it for such a long time - we thought it would happen a couple of months ago, but alas, Lucy had her own time in mind!  Jason and I are both ready to move on from this one-bedroom apartment and have a little more space to spread out.  Although, this place worked out great for us this past month as we shuttled Lucy to her appointments.  We are busy packing the temporary stuff that we moved and eating the random food left in the cupboards - pretty sure out last meal will be mayo, prunes and tortillas!

Lucy continues to thrive at home.  She's up to 13 lbs, 8 oz (that is a two pound gain since we brought her home 4 weeks ago!).  And...she passed her swallow study on Wednesday!  That means that we can start to try to bottle feed her.  It is very slow going...she is great a sucking from a bottle, but when she gets liquid in her mouth, she doesn't really know what to do with it so starts to cry.  Our instructions are to try once or twice a day and the thought is that she will eventually get used to sucking, swallowing and breathing at the same time.  We are so excited to be moving her forward with this next skill.  She is also able to roll from her stomach to her back (since she still hates tummy time!) and loves to sit up and look around at the world.  We visited some of our old NICU friends this week and everyone seemed surprised by how well she is doing holding her head up and how big she's gotten.

Just think...our next blog will be from MN!

What do you do at 1:20 a.m.?

If you asked me what I was doing at 1:20 a.m. about five years ago, I'm sure the answer would be much different than what I'm doing at this very moment at 1:20 a.m.

Five years ago, I was living in Lancaster, Pa., and had absolutely no revelation that I'd be getting married anytime soon. It would be a Monday night/Tuesday morning and this time of year, it would be dart league.

When I moved to Pennsylvania, my buddy Nate (one of my groomsmen) talked me into shooting darts. We played a lot at the little haunt we'd frequent for wings, games and other things, but right about now, I think you know I'd probably still be awake. In the summer, it was English darts - the kind you see everywhere. In the winter, it was American darts, a very different game with steel-tipped wood darts and the game was called "baseball." We were the Quality Inn Monday Knights. We even had our own mascot, Monday Knight Skiles, one of our friends who shot with us. I will have an American dart board in my mancave when the time comes.

Now, as I sit at my computer, talking to some people on Facebook (brother-in-law Barry included), I've just warmed up Lucy's food. She's still on continuous feeds and that means either Abby or I have to wake up and fill up the pump. This usually occurs at 1 a.m. and around 5 a.m. I say usually because I'm more apt to get up (or still be up) at the 1 a.m. refill.

We're about a week away from leaving Colorado fully. As mentioned in previous posts, Abby's dad and I drove our stuff out to Minnesota a few weeks back.

Now, all we have here is clothes and some personal things like computers, phones and mail.

So I'm now wide awake and instead of doing any work for the magazine, which I've put in a lot of time into, mainly because we also have a bustling web presence, I figured I'd do a super secret update. I don't think Abby knows I post one of these until one of her friends or parents comments on it. So basically, that's the opening you guys need to narc on me for writing at such a wee hour (especially if you're in the Eastern Time Zone, where it's well after 3 a.m.).

One thing about this apartment we're at is you have a sense of cabin fever at times. No, I'm not about to break into an episode of The Shining (although we did see the infamous hotel inspiration up in Estes Park two years ago), but we don't have much space. I'm usually glued to this kitchen table working during the day. Sometimes Abby has to prod at me just a bit to unglue my rear from the indentation that used to be a cushion.

Being a father scares me.

I think every parent is scared when it comes to raising their kids at one time or another, if not all the time. I worry about how I'm holding her right. I'm hopeful she'll just speak up and say "I need to be changed," or "I want to sit in the boppy."

At four-and-a-half months old, she's not about to break into prose. By the time some of you read this, I will either be on baby duty while Abby does some things at the office or would have just survived baby duty trying to keep Lucy from crying until mommy gets home.

Last time was an adventure. She cried for about an hour straight. Just cranky. There is no such thing as an effective manual to keep a crying infant from well, crying.

I try picking her up, walking her around, checking her diaper, sitting her in the bassonett, on the boppy, under her mat thing that has the toys dangling from above. I try sitting her on my lap ... you just don't know sometimes.

One of my biggest worries is holding her properly. With her g-tube, it has to be an unpleasant feeling for Lucy to be held the wrong way. I'm almost too slow and too meticulous trying to avoid a mistake. Abby has said I'm pretty much not able to do anything when I'm holding Lucy, that's more for fear of screwing something up than it is being lazy. At least that's what I'd like her to believe (insert snickering emoticon here).

I'm happy to get back to Minnesota. One of my friends on the wrestling message boards joked me the other day about willingly going back to Minnesota to be closer to my in-laws. Most of those in-law jokes don't apply here. I only spent 18 months in Minnesota the last time I was there and despite the bone-chilling cold, the black chunks of ice caked to your wheel wells and the mosquitoes, Minnesota is the best place I've ever lived.

I think my stress level will be reduced, as will the travel, and I too have friends nearby. We won't be on an island anymore. Having Lucy around friends and family is something important to me. I want Lucy to have the things Abby had growing up. I had some of it, but in large, there is very little in common between our family dynamics. That's not a shot by any means, it was just vastly different.

I remember complaining to my mom about going to my grandparents house because I didn't want beets and crabcakes for lunch. My grandma Eugina (mom's side) would pretty much have the same spread each time we went up. My grandma Eva (dad's side) would have a more normal spread. But even though I didn't like the hour ride up there, I enjoyed my time when I was there and I want Lucy to know her grandparents, aunts, uncles and cousins. My family was mostly spread out from Connecticut to Louisiana when I was a kid.

I've been on two family vacations with the Los-Bryant-Braun clan and it's been great. I didn't have many family vacations and I might have only seen my aunts and uncles anywhere from once to four times a year. Even with the issues Lucy has gone through already in her young life, having that support system close by helps relieve the uneasiness I feel. I don't want to be an inadequate father.

Sure, I'll be working a lot and I feel a lot of responsibility resting on my shoulders to bring the wrestling magazine back to relevance and prominence. But ultimately, being able to work in a field I enjoy and have the rest of my nuclear family in a happier place will make everything work out.

Plus, The Busch Family (they're like a family of my own) have a sweet cabin down in Wabasha.

So that's what I'm doing at 1:40 in the morning in 2012 ... rather than sleeping on my couch in a one-bedroom apartment in Lancaster.

I wonder how old Lucy will be when she finally asks why her name is tattooed on my leg?

November

We have a Vikings Fan!  Thanks Auntie Jenny for the team-themed hat!

We can't believe it's November already in our house!  Excluding today, the weather in Denver has been gorgeous - 70's and sunny - perfect for taking walks in the neighborhood and enjoying the last few days before winter sets in.  Especially since we'll be in Minnesota just in time to brave the frozen tundra for the winter!

Lucy has had follow-up appointments with the pediatrician, neurosurgeon and pediatric surgery units since our last post.  All gave her a great report - we are so glad that we live close enough to walk to her appointments now so we're not spending 3 hours on the road for a 10 minute appointment!  She got a new G-Tube last week - it's still leaking intermittently and a big pain.  I can't wait until she can eat orally instead of having to be fed through her G-Tube.  We have a follow-up swallow study scheduled for Wednesday of this week, so we are hoping that shows her airway is being blocked off when she swallows and that we'll be able to slowly introduce oral feedings.

In addition to doctor's appointments, I went into the office one afternoon this week - leaving Jason on baby duty by himself!  They did great - and I even managed to only text a few times to check up on them!  We've been spending the rest of our time reading, napping and discovering our fun toys.  Overall we are feeling good about where she is developmentally - although she hates tummy time (it can't be too comfortable with a G-Tube and we have to schedule it when she's not eating!).  After a short bump in the road after daylight savings time, Lucy's been doing a great job of sleeping through the night and we're starting to figure out her daily nap schedule.

First week home!

I can hardly believe that Lucy has been home with us for a whole week.  It is such a treat to be able to spend all day, every day with her.  We've had a busy week - doctor's appointments, packing, moving, grandparents, walks in the gorgeous Colorado fall weather, Halloween parties...A HUGE thank you to my parents for helping us out - we couldn't have done it without them!

We are officially moved from Colorado Springs to our temporary digs in Denver, where we'll be for the next few weeks as we wrap up Lucy's doctor's appointments, and my work here in Colorado.  Today we took Lucy on her first non-doctor excursion to a Halloween party that my work hosts every year for kids of employees.  She did great!  She's so serious as she takes in her surroundings and all the new people.

We've had several pediatrician visits, a home nurse visit and G-tube surgery follow-up.  All her docs think she is doing great - she's up to 12 lbs!  We are planning to schedule a swallow study in the next few weeks to find out if she is ready to take any food orally instead of through her G-Tube.  In addition, we are still working on finding her doctors in Minnesota.

Lucy is doing great - getting used to be home all day and starting to get into a routine with sleeping and awake time.  Enjoy the pictures of Lucy on Halloween (I figure that a tutu qualifies as a Halloween costume for a 4 month old, right?)

Looking at Grandma

Loves playing with her hands - best toy ever!

 

 

 

Lucy's Home!

Many of you already probably know that Lucy is home, sweet home!  We commemorated the event with "I Love Lucy" shirts, much to the delight of the NICU staff (thanks to Jason for the idea!) We are overjoyed to have her here with us and not to have to leave her at the end of every night.  We cannot thank you enough for the constant prayers, encouragement and hope that you have sent our way over the past 4 months that we've spent in the NICU.  Jason and I actually feel like real parents for the first time.  We can relax on the couch and let Lucy sleep on our laps for hours at a time and we can go across the hall and comfort her when she cries at night.  We are finally able to cuddle her first thing in the morning when she is sleepy-eyed and smiley and we can have dinner as a family (ok, so she just sits in her bouncy seats and looks at us, but at least we are together as a family unit!)

She (and we!) are adjusting well, spending lots of time sleeping, reading and just hanging out.  She's had her first car ride (liked it), stroller ride (too bright outside for our little NICU baby!) and has slept in her own crib (loves that her mobile moved with her!).

We have to feed her through her G-Tube, so took home a feeding pump and IV pole and have lots of follow-up appointments over the next few weeks and are starting to find care givers in Minnesota.  Oh, and we're moving to Denver this weekend (temporarily) and my parents are coming into town to help us for a few days...never a dull moment!

We plan to keep up Lucy's blog so that you can follow-up on her progress with swallowing, dealing with hydrocephalus and all other thing Lucy-related, so we hope you'll continue to follow along!

Untethered

You may not recognize the baby at the top of this post as Lucy because she doesn't have any tubes attached to her precious little face!  That's right...she is officially untethered and no longer connected to oxygen or a suctioning tube.  She couldn't be happier and neither could we.  We got to take her on a family field trip to the parent room in the NICU, where she took a nap and Jason and I watched some educational videos in preparation to go home.

Yes, you read that right...we are actually talking about bringing her home soon!  Our doctor is back tomorrow and assuming that things go well over the next few days, we should be able to take her home by next week.  As always, we are cautiously optimistic that things will go well.

As we shared on our last post, she has had a variety of tests over the past few days to follow-up on a variety of issues:

 - She had another echo, which showed that her VSD is very slowly getting smaller, so we will continue to follow-up on it every 6 months or so.


 - She had a renal ultrasound, which showed a small amount of reflux into her kidneys - again, nothing is needed at this time, but we will continue to monitor

 - She had a scope study by an ENT doc which showed at least partial vocal chord paralysis.  We haven't gotten the official results yet, so we will know more tomorrow what long-term problems that might mean for Lucy and the extent of the damage.  Typically, this is monitored by serial studies to see if the vocal chords heal on their own.  This is likely a result of the many times she had tubes down her throat - mainly the ventilator.  Vocal chord paralysis also often brings swallowing problems along with it, which we know Lucy has.  This one is scary for us because we weren't expecting it and we don't know what the long-term outcome will be.  We have read a fair amount about it and are hopeful that this will resolve itself with time.  The good news is that the paralysis is not complete - she can definitely cry!

Lucy continues to be awake more and when she is, she loves to interact with people and toys - she's been a big fan of her little stuffed animals - Eleanor the Elephant and Larry the Lion, pictured here.

As always, thank you for your support - we can't wait to share the news of her coming home with you!

Play Dates

Lucy has had a very busy week:

 - On Tuesday, she had her swallow study.  She looked like such a big girl during the study - dressed in her little pediatric hospital gown and sitting in a highchair to try her first bottle.  While a therapist fed Lucy milk of varying consistency, we watched an x-ray image of her esophagus/trachea to see where the liquid would go.  Unfortunately, the study results showed that she is not ready for oral feeding yet. The first few consistencies went right down her trachea, but she didn't even cough or gag, which they called a "Silent Aspiration" - not good because we wouldn't be able to tell by her body reactions when it happens.  When the liquid was thickened enough, she was able to get some into her stomach, but there was still a small amount leaking down her trachea.  On a positve note, she has great oral skills and does not have any aversions to sucking/swallowing, which some TEF babies have problems with.  The plan is to wean her off her oxygen, let her trachea/esophagus heal from surgery and ventilators and to re-assess in 3 weeks.  Meanwhile; she will continue to be fed through her G-tube into her stomach directly.

 - On Wednesday, she graduated back to the Graduate NICU!  We are so excited that she has so much more space, and roommates that are more stable and a ginormous crib that she can move around in and have all of her toys around her to play with.

 - Today, she had her first play date!  Carly is another baby in the Graduate NICU who is 2 1/2 months old.  Today, she came to Lucy's crib-area and we had tummy time together and practiced rolling over.  It was so fun to meet another baby up close (we had lots of doctors, interns and nurses visiting us to see what those two babies where doing on the floor of the NICU - too cute!)

 - We also had a visit from an old friend from MN today - Bonnie Olson was visiting her sister Kathy in Westminster (a suburb of Denver).  They were kind enough to stop by and meet baby Lucy and bring well wishes from all of her Prayer Warriors back in MN.

Over the next few weeks, Lucy will be weaned off of oxygen to test her stridor to determine if an ENT consult is needed.  She is currently down from 2 to 1.5 liters.  She will also have a follow-up echo-cardiogram to see how her VSD is doing and she will have another renal ultrasound to see if she still had reflux from her bladder into her kidneys.  We are definitely on the home stretch and are hopeful that our time in the NICU is down to weeks instead of months.  Please keep us in your prayers as we transition from our home in Colorado Springs to a temporary apartment in Denver and prepare to bring Lucy home and then move to MN in the near future.

Thank You all for your thoughts, prayers, gifts, cards and kind words.  We so appreciate the support and can't wait to be closer to so many of you when we move back to MN.  I have been especially touched by the little kids that remember Lucy in their prayers.  It's encouraging to hear about the next generation being raised up with Christian values.  My friend Ann sent me the below picture of her daughter's prayer book - you can clearly see "Baby Lucy" is included - melted my heart!

 

Recovery Update

It is definitely great to see that the recovery from Lucy's shunt surgery is much quicker than her esophagus surgery in September.  Aside from a little hiccup last night, when Lucy was throwing up (unknown reasons, but likely due to gagging reflex from ventilator tube, causing extra air in her tummy), she is doing great.  She was taken off the ventilator this morning and is back to 2 liters of high flow air to keep pressure on her airways.  I was also able to give her a shampoo with the help of our nurse, Brooke.  Lucy's hair was very matted and covered with an iodine/surgical goo so she was looking pretty rough.

You can definitely see and feel her shunt on the right side of her little head and she has two pretty impressive surgical scars - one on her head and another on her torso, where the shunt tubing was placed for drainage.  Did we mention that her shunt was manufactured by my old company?  Yep, Lucy has a Medtronic shunt inside of her, courtesy of their neurosurgery division.

We still have 2 issues left to tackle before Lucy can come home, but our list is definitely getting shorter!

1.  She will have a swallow study, hopefully later this week, in order to see what happens when she swallows, to see if her airway is being properly closed off.  Once we see what happens, we will be able to make a plan for oral feeds, versus continuing her G-tube, straight into her stomach.

2.  Her Stridor is still around - although it has quieted in the past weeks.  She will be gradually weaned off of the high flow air and we will see how she does with it.  If she is incapable of handling room air only, another procedure may be needed to ensure her airway is not restricted.

In the meantime, we are so happy to be able to interact with her and comfort her when she cries, instead of standing by her bed and holding her hands while she silently cries.  Those days immediately after surgery are grueling on her, but they are also rough on us, as we feel so helpless.

Peaks and Valleys

Lucy had her surgery today. This is her third in her first 107 days of life on this earth. Even as she got wheeled over to the OR today, I couldn't help but get choked up.

It's so hard for me to sit there and see all 10 pounds of her go through test after test, surgery after surgery and we just ask her to keep fighting. Sometimes it's overwhelming. Sometimes I just don't know how to deal with it.

I'm sitting in Colorado Springs as I write my first entry in quite a while. Abby is up at the St. Christopher's Inn in Denver. We've been apart several times this week. Some in distance, some in just a few rooms. I had my wisdom teeth extracted on Friday, so six days later, I'm still battling with the after effects. Both my bottom teeth sockets are infected, which means I get to add an antibiotic to the list of stiff drugs I'm on to combat the pain.

Lucy, on the other hand, is on harder stuff than I am to help her deal with the pain of surgery. She had her shunt "installed" (for lack of a better words) today. She's irritable and grouchy, much like I was after my surgery. But my teeth pale in comparison to her two invasive surgeries and a third in her head.

Friday is also a bit monumental of sorts, it will be my last day at USA Wrestling. As much as I've enjoyed my job and being part of the Olympic movement, Lucy and Abby are more important to me than any job. We'll be moving back to Minnesota sometime either in late October or November, depending on when Lucy is discharged from the hospital.

In the last three years, I've made some great friends and had great relationships with many co-workers and colleagues with the USA Wrestling family. I've been to Turkey, Russia, Thailand, England and countless states with this job.

It was a good run, but ultimately moving back to Minnesota is the best for Abby, Lucy and I. While my extended family weren't strangers when I grew up, Abby's family has been a big part of her life and that's something I want Lucy (and any future children) to be a part of. Being in Minnesota will provide us with a solid support structure and with the employment I have lined up, I can work from home more often than not, meaning I can have a job, pull my weight as a functional member of the household AND get to spend more time with my adorable daughter .... and Abby, she's pretty cute too.

It was a tough decision and it was hard for me to tell my superiors at USA Wrestling, but as great of a place Colorado is to live, we're on an island out here, which makes the traveling part of my job that much more difficult for Abby and Lucy to have to deal with.

Long story short, I'm going to miss Colorado Springs and the people and friends, but ultimately, Lucy and Abby are my responsibility and I have to make sure they are in an environment which will make us stronger and healthier as a family.

That's the short version for now.

JB

Shunt Surgery Day

Lucy's shunt surgery is scheduled for tomorrow (Thursday, 10/4). Please keep her, us and the neurosurgical team in your prayers. Coincidentally, this surgery is exactly a month after her last surgery, but the recovery should much easier. We will keep you updated on how it goes!

100 Days in the NICU...

Well, we have officially passed the 100 day mark.  Yikes, that is a long time in the NICU!  And yes, we are definitely sick of it and more than ready to bring our baby home.  Here are some updates:

 - Lucy is scheduled for shunt surgery on Thursday.  We don't know too much about the procedure or recovery yet, but will learn more about it this week.  Recently, she has been having trouble regulating her temperature, which doesn't seem to be related to an infection, as all of her lab work came back OK.  The docs are wondering if some of the fluid in her brain is putting pressure on the part of her brain that regulates her body temperature.  In the meantime, we are keeping her bundled up and in a hat so she can stay toasty.

 - She is very slowing being weaned off her high-flow air, down from 5 liters to 3.  The doctors are very encouraged by how well she is doing with this and we are hopeful that her stridor is something that she will grow out of instead of requiring intervention.

 - She still loves her pacifier - after surgery we will be able to see if that love translates into the ability to bottle feed.  It's never too far away from her - as you can tell by this picture:

 - Lucy is getting BIG!  She has outgrown all of her Newborn clothes and now wears 0 - 3 months.  Last night, she weighed in at 10 lbs, 7 oz. Here's a picture of her posing with daddy:

 - She still loves being read to.  We always keep a couple of books by her crib and if she is especially fussy at night, the nurses will read to her - they tell us she calms right down!

 - I have 2 patients to take care of this weekend - Jason just had 4 wisdom teeth removed...Ouch!

Dealing with the Hydro (finally!)

It's been a rough couple of days as we have been reminded of why this blog was originally started.  Lucy had a follow-up ultrasound on Friday to take a look at her brain structure and fluid levels inside her skull.  Her last ultrasound was on June 22, the day after she was born.  The ultrasound definitely showed that her fluid levels had increased since then, leading the doctors and neurological team to recommend a shunt.  However, the atypical part of Lucy's test results are that her head size is not growing at an abnormally fast rate.  The surgeon ordered a follow-up MRI for Monday to get a better look at the brain structure, which showed much of the same.

Typically, in kids with hydrocephalus, their fluid levels increase to the point that it is putting pressure on their brains, causing their heads to grow at a faster rate than the rest of them.  However, that is not the case for Lucy which is a bit of a mystery to the doctors.  It is worrisome, because it looks like her brain may not be growing and developing at a normal rate, causing the extra space to be filled up with fluid.  Unlike her other problems up to this point, this diagnosis has long-term impacts related to her learning and development as she grows up and many of the scared, uncertain and overwhelmed feelings have come flooding back to us as we struggle to understand what to expect long-term.

We do know that in the short-term she will have surgery to have a shunt put in, tentatively scheduled for next week.

In the meantime, she continues to do well overall, charming the nurses and entertaining her dad and I with her adorable facial expressions and alertness - we are still debating which college team will be her favorite!

Baby Steps Forward

Lucy's surgery follow-up showed no leaks - Yay!  This means that the surgical spot has healed, although there is still some healing that has to take place as the esophagus is bulging at the top, no leaking is great news.  Her suction tube, which she has had since birth has been removed and so has her chest tube, which was the main prevention from us being able to hold/interact with her.  She was even able to spend some time in the swing today - so much better than being confined to a crib!  Next steps for Lucy are to slowly start to introduce feeds into her G-Tube in her stomach so that her IV can be removed.  After that, her remaining 3 issues will be addressed:

1.  Hydrocephalus - she is scheduled for a head ultrasound tomorrow (9/21) to take a look at her ventricle size and fluid amount on her brain.

2.  VSD (hole in her heart) - at this point, doctors still do not believe we need to do anything with this at this time, so it will be monitored

3.  Airway Issues - this one is more serious and a bit of a mystery because we are not sure what is causing the problems.  Currently, she is on a high air flow in the hopes that it will keep her airway/lungs open.  This is preventing us from bottle-feeding her because the high air flow would likely cause her to aspirate.  Since the doctors are not sure what is causing the problems and it is very close to her last surgical site, they are very hesitant to do anything about it right now.  We have been told to expect a study in the next "several" weeks to take a look with a scope to see if they can determine what is causing her stridor and her airway to close off.  Once they know what the issue is, we will make a plan of action to correct it.  It could range from something that she will grow out of to something that requires another surgery.

So...we are back to the waiting game (again!), but have been told to expect a minimum of another month in the hospital.  Ugh...that's a long time.

Everybody loves Lucy...

As stated several times before, we are overwhelmed by the outpouring of support we have gotten - from friends, family and strangers alike!  Maybe it's like this for all babies, but I have to say that everybody really loves Lucy!  Her nurse today said Lucy just stole her heart this morning and she spent a good portion of her morning just chatting with Lucy 1:1 and her respiratory therapist yesterday (a young-ish, single guy, by the way), spent part of his morning helping her get a sponge bath and doing her hair!  We have received cards from church groups that we have never met, and bedtime story books from old co-workers and hugs from case workers and nurses that we've only talked with briefly.  My friend's grandmother, who recently had a stroke, remembers Lucy and asks about her, even though talking is still really difficult for her.  Whether it is her story, or her patient little personality, or her quizzical look when she furrows her brow at a new face or simply her great hair, people just can't resist her!  I have a feeling that she will always pull people in and I can't wait to see her personality mature and develop.

Her recovery continues to go slowly.  She is now off the ventilator again and on room air (no extra oxygen), but she has a high flow of air blowing into her, with the thought that it will help keep her airway open.  Her most recent chest x-ray shows much less fluid on her lungs and no extra air pockets, so those are both great signs.  She will have her surgical follow-up tomorrow to determine if there are any leaks at the surgical site on her esophagus.  If not, her chest tube will come out and we'll be able to hold her again!

Thank You for your prayers and encouragement after our last post...we hope to have good news for you all tomorrow!  In the meantime, here's a picture of Lucy with her stylish bow...which is the only girlie thing she gets to wear for a little while.

The long road to recovery

We posted last week that Lucy would have a Contrast Study today to see if there were any leaks at her surgical site. Unfortunately, that wasn't able to happen, as she has had a rough 24 hours. Up until yesterday, she had been doing very well - she continued on low ventilator settings and had minimal output from her chest tube and suction tube. In preparation for her contrast study, she was taken off the ventilator yesterday (Monday) morning. She started on room air, so no oxygen, but gradually was struggling to keep her blood oxygen levels up, so was given more and more oxygen throughout the day and her respiratory rate was elevated, to 80 - 100 breaths per minute (BPM).

Overnight, she continued to have difficulty maintaining oxygen levels and her stridor had returned. In addition, she developed a pocket of air around her chest tube that had all of the doctors puzzled. Somewhere in her little body, everything was not sealed off as it should be, causing her air to escape to places that it shouldn't have. Therefore, she was put back on the ventilator (intubated). When there is a major change with a patient like this, the doctors typically call the parents, so Jason and I were woken up at 3 am by a call from the doctor - not the way I ever want to wake up.

When I visited her at 6 am and when Jason visited at 9 am, she was agitated, but seemed more comfortable than she had been. Unfortunately, all of the drama of the previous night meant that her Contrast Study had to be postponed until next week. When I returned later in the day, she was receiving a blood transfusion, due to decreasing hemoglobin levels. She also had a brady episode similar to what used to happen several weeks ago and her blood oxygen levels would not increase to over 50 (95 to 100 is expected). In this case she was unable to come out of it on her own and had to be "bagged," to deliver air directly into her lungs. Her ventilator was removed and re-inserted at that time, as they determined that something about her breathing tube was in the incorrect place, causing her to not be able to properly breath.

It is pretty apparent to the doctors that she has a leak at her surgical site, causing her secretions to leak into her chest and lungs and restricting her breathing to some level. In addition to the concern that they may have to re-open her up to repair the site, a lung infection is a distinct possibility. So, they started her on 3 different types of antibiotics in the hopes of combating any infections before they onset. Also, it seems apparent that something else is bothering her trachea, leading the stridor and rapid breathing that she has demonstrated over the past several weeks. This will have to be addressed after her esophagus is healed, likely by a surgical team, or ENT specialists.

As you can imagine, it has been a stressful and scary 24 hours for not only Lucy, but for Jason and I. I was very grateful for the kind-hearted nurses who provided Kleenex, a shoulder to cry on and the privacy I needed to pull myself together. We were so focused on getting her to her surgery date, that I don't think we mentally prepared for the aftermath. We were so hopeful that she would have a speedy recovery, but that will not be the case. Above all, we struggle to understand why this sweet, patient baby can't seem to catch a break and remember that doctors do not have all of the answers that we seek. It is heartbreaking to see her look up at us with those trusting eyes and know that we can't do anything to ease her pain - not even hold her. Please keep us in our prayers as we get re-filled with patience, strength and faith.

"...So that your faith might not rest on men's wisdom, but on God's power." - I Corinthians 2

Recovery Update

Lucy's recovery from surgery is going very well. For the first 2 1/2 days, she pretty much slept the days away in a morphine-induced sleep. The goal of her doctors is to keep her as quiet as possible until Tuesday, when we will do a Contrast Study to see if her surgical site is leaking at all. So, she is back on a ventilator, has a chest tube in at her surgical site and a central line into her neck, for easy blood draws and to get her IV fluids. She is on straight IV's (no food) and is still quite puffy from the surgery and all of the fluids that she is getting.

This morning was the first time she really woke up and was alert. Although she can't make any sounds or move very much at the moment, her little eyes are alert and follow us around her bedside and she seemed pretty comfortable while she was awake. It is tough to see her in this state, as she was just beginning to interact and coo when we talked to her before the surgery She's had a number of visitors from the Graduate NICU - nurses who took care of her want to check in on her progress. Her surgical team all came by today to check on her before the weekend and all were very pleased with her progress and the success of the surgery. Although they haven't told us these, I suspect that her gap was one of the longer ones that they have successfully connected at this hospital.

So, until Tuesday, we are planning to keep her quiet and comfortable and not cause anymore trauma to her surgical site. The surgeons said that if she had a major leak in her esophagus, it would already be apparent in her chest tube output, so we do not anticipate that. The outcome of Tuesday will either be that she is healed and can start to have some tubes removed and gradually begin to eat or that the ends have not grown together yet and she will need more time to heal. We are obviously praying for the first outcome.

THANK YOU for your kind words after her surgery. We are so grateful to have the support system that we have.

Successful Surgery!

Lucy's surgery today was a success! Her esophagus and stomach are officially connected and she no longer has a double aortic arch. We could not be happier and more thankful for such a wonderful outcome.

As you know, Jason is in Thailand, so my mom and dad were here to keep me company and wait with me. We headed over to the hospital at 7:45 am, right when the NICU opened, so that we could spend some time with Lucy before they took her to surgery. The transport team came around 8:15 to move Lucy to the Pediatric surgery unit, which I accompanied them to. I talked to the surgeons and nurses for a few minutes and comforted Lucy to the best of my ability while she was in her transport isolette. I held it together fairly well while talking through the possible outcomes until the surgeon said, "...although the likelihood is very small, I have to tell you that a possible outcome is death." While I conceptually knew that is always a risk of surgery, to hear it out loud was awful.

By 9 am, Lucy had been taken to surgery and I was in the waiting area with mom and dad. The surgery took about 4 1/2 hours...possibly the longest 4 1/2 hours of my life. At around 1:30 pm, the surgeon came out with a smile on her face giving us the thumbs up and came over to tell us that it went great - better than she had anticipated. They found a spot in her double aortic arch that did not have any blood flow, so used that as the location to sever it and took care of that first. While her gap was quite long, the surgeon said that the tissue was flexible and stretchy enough to be joined together. She did note that there is a lot of tension on the tissue, so the risk of a leak is quite high.

Lucy was taken to the level I NICU for post-op and I got to visit her for a few minutes around 3 pm. She was just waking up from her anesthesia, but was still very sleepy. The goal for the next few days is to keep her very calm and on a ventilator so that her lungs, trachea and esophagus can recover. She will hopefully be taken of the ventilator in the next few days and re-introduced to food through her feeding tube as well. Overall, her recovery is going very well so far and she seems very peaceful.



THANK YOU for all of your prayers and encouragement. We know that they were heard and that God was blessing the hands of her surgical team today. Lucy is a fighter for sure!

Surgery Day!

Lucy is schedule for surgery tomorrow (Tuesday, 9/4) at 9 am.

Please keep her in your prayers today!

September is Hydrocephalus Awareness Month!

Did you know that September is Hydrocephalus Awareness Month? While this has not been the recent focus of Lucy's blog, or a major concern during the first 2 months of her life, it is still a condition that she has and one that will need to be monitored for life.

Interestingly enough, one of Lucy's new roommates has Hydrocephalus and had a shunt put in shortly after he was born. He is doing great! We are so grateful that Lucy has not had to undergo that surgery yet!

For more information on hydrocephalus and to see stories of other living with the condition, visit http://www.facebook.com/HydroAssoc.

A bump in the Road...

Last Sunday, the doctor on staff suggested that Lucy be taken off of fortified Breast Milk and put on a special weight gain formula in preparation for her upcoming surgery. While that sounds good in theory, the transition did not go well. By Monday afternoon, Lucy was unable to keep any food in her - it was just going right through her to her diapers. She got extremely dehydrated, to the point that she had to have an IV put in (to her head - poor baby!). Her suction tube typically has between 20 and 33 ccs in it by the end of a 12-hour shift, but it was running between 1 and 5 ccs while she was dehydrated. We were initially concerned that she had caught something, but all of her blood work and labs came back fine and it seemed pretty obvious that it was the switch to new food.

So, she was on an IV for 2 days and now has gradually worked her way up to full feeds again - straight breast milk, no fortifiers! During that time, she also developed something called stridor, which is essentially noisy breathing. It sounds like she is wheezing all of the time. So far, her oxygen levels do not seem to be impacted, so doctors have recommended waiting to have it looked at until after her surgery. It is possible it will go away on its own and that it is not related to her recent setback, but the timing of it is curious.

It was extremely frustrating for Jason and I, as we trust the doctors to make the right decisions for Lucy, this was clearly not the right decision and we are still struggling to understand why they wanted to make such a drastic change in the first place, especially when it was ordered by a doctor that was not her regular doctor. We are praying that this bump in the road will not impact her surgery on Tuesday. Final blood work with be drawn and evaluated on Monday to ensure that she is OK for surgery.

As a side note, Jason's mom and his aunt came to visit this week. Although their NICU visits were limited because of her condition this week, they both loved meeting her and we loved having them visit - especially the home cooked meals to come home to at night, and fellowship we shared over a competitive game of Phase 10 (I won, by the way!) Thanks for coming, Grandma and Aunt Geneva!

Jason is on his way to Thailand - he left this morning, so it will be a long 10 days while he is so far away. Please pray for both of us as we deal with the emotions of Lucy's surgery so far apart from each other. Also, pray for baby Lucy, that she may be ready for surgery and that it is successful! We need to bring this baby home!

We have a (tentative) surgery date!

As you know, Lucy's 2nd Gap Study was yesterday. Both Jason and I were able to attend, and her surgeon was there as well. After a LONG walk through the hospital to the Children's radiology area, we finally arrived and put on our X-Ray proof clothing. This time, the procedure was done without contrast, so no dye was involved. The techs and surgeon looked at her suctioning tube location and followed it while they moved it and tried to see how far down it would actually go.

Lucy's gap is basically the same as it was 4 weeks ago - just under 2 cm. So, the doctors do not think that they will gain anything by waiting for her to grow any bigger. They have penciled us in on their schedules for Tuesday, September 4th. While we are super excited for her to be moving forward towards coming home, it is a disappointment that Jason will be out of the country (in Thailand) when she has her surgery. While the date has not been officially confirmed, we have been told to plan for September 4th unless we hear differently.

Please keep little Lucy in your prayers over the next week and a half as her body continues to grow and get stronger and be ready for surgery.

Since her feeding tube was off, we took the opportunity to take some pictures before the procedure...enjoy!

Follow-up Gap Study scheduled for tomorrow (Thursday)

Lucy's Gap Study has been scheduled for tomorrow (Thursday) at 1:30 pm. We are cautiously optimistic and so hopeful that the results will be favorable and show that she is ready to have surgery.

We have so appreciated the support of her doctors and nurses, many who have stopped by this week to wish us well, as they would lover to see her ready for surgery as well.

Thank You in advance for your thoughts and prayers over the next 24 hours as we prepare for the results.

Happy Birthday, Daddy!

It was Jason's 33rd birthday on Monday and Lucy's 2-month birthday on Tuesday! I cannot believe that she is 2 months old already (and that she has been in the hospital for her entire life.) :(

Despite the unusual beginning to her life, she continues to do very well in the NICU. She always has a variety of nurses that come by to visit her and comment on how great her hair is. She is just a few ounces away from being 8 pounds. She has been able to stay off oxygen except for a brief period on Saturday night when her suction tube wasn't getting all of her secretions out and she had some breathing issues. After a quick x-ray, her suction tube was re-positioned and she has been tolerating her secretions much better ever since.

Her G-tube continues to leak occasionally which is highly frustrating, as there does not seem to be a rhyme or reason for when it happens. So, she continues with multiple dressing changes a day and continuous feeds so that her stomach does not expand too quickly.

I would like to give a shout out to three very special babies - Keely and Alma, who were among Lucy's first roommates in the Graduate NICU and had both been there for several months before going home this week. We wish their families well as they adjust to life with their babies at home and know that they are so thankful for their miracle babies who arrived at less than 2 pounds apiece and have both had several surgeries already. We can't wait until it's our turn to take Lucy home. Also, we'd like to welcome Blake David to the world. He was born to one of my very dearest friends and it was so fun to be pregnant at the same time and have babies so close in age. We can't wait for Blake and Lucy's first play date!

We are anxiously anticipating her follow-up Gap Study this week and are hopeful for positive results.

Echo results

Lucy has had a busy week! On Tuesday, one of the surgeons came to look at her G-tube, which continues to be troublesome and leaks occasionally. She had some tissue building up around it, so that has been cleaned up and she is on continuous feeds for a couple of days in the hopes that avoiding filling her tummy with large amounts at a time will help the site heal. In the meantime, she loves spending time in her Boppy and looking at her mobile (you can see the turtle from her mobile in the top left of the picture below. She has graduated to a larger Blood Pressure cuff and size 1 diapers!


She also had an Echo test on Tuesday to look at the holes in her heart - ASD and VSD. It looks like her ASD has pretty much closed on its own and is no longer considered a problem and that her VSD is small enough that there is no action needed at this point. We will plan a follow-up in 6 months to re-look at it. Great news for us as it is one less thing we have to be concerned about.

Since she is officially off oxygen, her sunctioning tube has been moved from her mouth to her nose, like it was a few weeks ago. She's not sure that she likes it there yet, but it has given her a break from always having something in her mouth and she is less likely to yank it out since it is off to the side a little bit. It has also given her a renewed interest in her pacifier, which is great, since she will need those skills when she is ready to start eating on her own after surgery. I finally admitted, now that I can see more of her face, that she looks like her daddy...alot!



Jason is back home and can't believe how big our little girl is. Interesting side note, Jason and I gave one of the Olympic bronze medalists a ride from the airport once!

G-tube woes, visitors and growing up

Lucy is over 7 weeks old and weighed 7lbs, 8 oz tonight! She is definitely growing up and has had a few busy days. Last week, we met a developmental therapist who showed us some fun exercises to do with Lucy to make sure that she keeps up with her developmental while she is in the hospital. For premature babies, their development is still measured based on their expected due date, she she is measured as if she were between 3 and 4 weeks old. She is doing great with hand coordination, eye contact and moving her arms and legs.

She was briefly off of oxygen before coming up to the Graduate NICU, but had been back on a low flow until this weekend. She is now oxygen free and doing great with it!

Her G-tube (the feeding tube that goes directly into her stomach) has been giving us a lot of problems, lately. It has been leaking after nearly every feeding - losing precious calories and soaking all of her clothes and blankets. On Saturday, the nurse practitioner put in a new top, in the hopes that the balloon would be work better and we tried a new, foam dressing to build it up a little and lessen the gap. However, it continues to have a small leak in it which so far, the staff has been unable to figure out.

Lucy has also had lots of visitors to keep mama company while dad is in London for the Olympics. Sara and Lindsay, who were our usherettes at our wedding came to visit this weekend with Lindsay's adorable little boy, Aaron. Since they are both nurses, they were both very comfortable around the NICU and understand the medical terms and recognize the products that are used in Lucy's NICU. Today, my friend Ann came to visit after work and was kind enough to bring a gift bag for me and keep me company while I was trying to comfort a very irritable baby who was only happy if I stood to hold her. We love having visitors and I know that they love being able to meet this little girl in person, who they have praying for over such a long time. I am typically a very planful, decisive person. However over the past few months, I have found that I am sometimes too overwhelmed to be able to make decisions or plan the way that I would like. I so appreciate these 3 girls telling me that they were coming to visit and making it happen without needing a lot from me.

We have heard through the grapevine that another Gap study will be scheduled for next week (how can it have been 4 weeks already?!?!) and that the surgeon would like to attend so she can see what is going on instead of just reviewing the results. Prayers appreciated that the extra 4 weeks gave Lucy what she needed in order to tolerate surgery and lessen the gap.

And most exciting for this week - Jason comes home tomorrow! I think 2 weeks was a few too many days for him to be away from me and I can't wait to have him back for the love and support he provide us with...I have turned often to this verse as I work to keep up this schedule day in and day out:

"But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."

- Isaiah 40:31

Gratitude

After a our recent disappointment related to Lucy's surgery dates, I have found such wonderful comfort in friends, families, nurses and strangers in the past 2 weeks. I find myself thinking back to that day in the doctor's office when we were asked if we wanted to terminate the pregnancy and I cannot imagine never meeting this little baby who is Lucy!

As I talk with more moms in the NICU and at the Ronald McDonald House, I have met many women who were faced with that same decision - some who have perfectly healthy (albeit premature) babies and others who do not. Just like many other life situations that draw people together when they would never had met otherwise, there is an instant sense of community between the parents - especially the moms - that are in the NICU with us. I was especially impacted by a VERY young couple who have a baby born with hydrocephalus, just like Lucy. She had a shunt put in shortly after birth and has experienced some major issues with infection and other birth defects, including Spina Bifida. But, she is doing great now and they are ready to take her home this week, at just over 2 months of age. I know that they will have many difficult days over the life of their baby.

Lucy continues to thrive in the NICU - she is up to 73 ml of food, with the additional 27 calories of formula to fortify and help her gain weight. As of tonight, she was up to 7 lbs, 2 1/2 oz! She is starting to develop chub on her arms and legs and is staying awake for longer periods of time. Jason won't recognize her when he gets back from London next week! She is also hanging out in her Boppy every once in a while (thanks, Nate, Emily and Nolan!) instead of just laying in bed or being held. The doctor told me today that we can take her off oxygen for short periods of time while she is awake and alert and we are interacting with her. Her hair is growing like crazy! She loves looking around the room and at her brightly colored books and has some pretty cute facial expressions - my favorite is when she is very obviously awake in her crib and looking around and one of us come up to her and say hello and she slams her little eyes closed - like she was sleeping the whole time. :)

We have been blessed to have a variety of visitors, most recently my sister, Melisa, who took the photo at the top of this blog. Also, thanks to my sister, Jenny, for making the adorable headband Lucy is wearing. We are looking forward to some of my friends from Minnesota and some of Jason's family coming in the next few weeks. With Jason's travel schedule, it has been so nice for me to have out-of-town visitors to keep me company.

As always, thanks for the support - we are overwhelmed with gratitude towards all of you!