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!