Thursday, August 26, 2010

Time Keeps on Slippin

Holy cow, I can't believe it has been almost a month since I last updated!  I am going to have to start scheduling time each week to write.

August has been very good to us.  Owen is doing so well, he keeps growing and growing.  Right now he is getting really close to being a mobile baby, and his physical therapist is hinting that he might "graduate" soon!  That is a huge deal and means that he is physically developing normally.  His occupational therapist/feeding therapist feels the same way.  She has been so impressed with both his progress in bottle feeding and spoon feeding.  She wants to stick around to make sure we don't have issues as we move on to different textures and then we will probably go from weekly visits to consultation only!  It is really amazing. 

We are probably averaging around 3 hours of tummy time each day and are also working on sitting unassisted.  When Owen is on his tummy he is working on pivoting around and engaging his legs to help him turn and also reach.  He is also perfecting rolling both ways as he prefers using his right side.  We are putting things just out of reach so that he has to army crawl towards it.  This is new for him and a big challenge, he looks like he is furiously swimming when he can't reach something:-)

During our sitting practice, Owen works on balancing himself and transitioning from a sitting position to his belly WITHOUT arching backwards and slamming himself down!  . . . . this is his preferred method of getting down, he doesn't know that the consequence of doing this without pillows or my body behind him will result in a BAD  headache!  We also put him over my leg in a crawling position so that he can work on feeling his legs underneath him and putting his weight on straight arms.  He is doing so well, I still can't believe all of the progress he has made.  It is still the most amazing things to watch him, I sometimes have trouble engaging in play because I am just stunned into silence and happiness at watching him do things on his own, that seemed so far away just a few weeks ago.

Check out our photo website to see some funny videos from August!

Tuesday, August 3, 2010

Beach Vacation

Oh my gosh, how the time flies. I meant to post this right when we got back from vacation. . . . . . oh well:-) A few weeks ago we went out to Oceanside for a week. We rented a timeshare from one of Eric's colleagues right on the Beach. We had a blast, once again we picked up and drove out to So Cal:-) This time we took so much stuff. . . . who knows for sure what you will need when you go away for a week with a baby!

Every morning we would wake up and eat breakfast outside to the sounds of the waves. While we were there we went to 2 farmer's markets and so the whole week we ate the freshest organic fruits and veggies. . . . it was awesome! We ran outside (can't do that in Phoenix in this heat with a baby right now), we laid at the beach, and we spent time with family and friends. My parents came down with my niece Torii and my sister Lisa and rented a place less than a quarter mile from ours, which was awesome because we got to spend the entire week with them. The first day at the beach was a little windy, and Owen was NOT enjoying it. . . . I was worried that we had made a BIG mistake, but by the afternoon he was more like himself. We set up his beach tent and he enjoyed being in there since it was in the shade, but blocked from the wind and much warmer. After that, every day was PERFECT, sunny, no marine layer or even clouds and warm with a nice breeze. You couldn't ask for better San Diego weather.

We even visted the zoo, which I had never been to, and some of Eric's family was able to come down and join us as well which was great. That zoo is really cool, we will definitley be back when Owen can enjoy the sites even more! It was hot though, even for us desert folk! The BOB was a must at the zoo because of all the hills. Mostly I just pushed an empty stroller around, because Auntie Lisa wanted to hold Owen the whole time, which was great because then I didn't have to worry if he was okay or not . . . he was in great hands.

I can't say thank you enough to my parents for driving down and spending the vacation with us. I love to see Owen with his extended family, and he loved spending time with everyone. Especially Torii, who learned she has to speak up to get to hold him (ha ha. . . . but no really!).

On our last day at the beach we took Owen down to the water and put his toes in the wet sand which he liked, but then the water came up and covered his feet and he started screaming because it was so cold. But we did take him for his first swim at my parents heated pool, which he liked. You would think he was allergic to the sun the way he is covered up . . . but considering his father's skin, I think we better be safe than sorry. Speaking of Eric, like almost every vacation he got a really bad sunburn on the FIRST day, and then had to hibernate for the rest of the vacation:-) He claims it was my fault because I told him to put his sunscreen on once we got down there, and then he forgot to do it, and stood out in the sun, on the beach, for the whole day!

We also were lucky enough to spend some time with some of our very good friends. My Matron of Honor who now has a 4 yr old and a 2 yr old who are SOOOOOOOO cute, the way they play together is THE BEST, and we also saw one of my BEST friends from college Jaymie who also now has a 4 yr old, a 2 yr old, and a baby baking in her oven!!!!! How times change, right? Getting to see them was icing on a very very good cake. I love my life in Phoenix, but I MISS those girls.

We also were able to connect with one of Eric's best friends from high school Angie and her family. They have two beautiful daughters. I don't know her very well, but through her newsletters at Christmas time, but they really are an amazing family. Our stories are very different, and also tragically similar in that we both lost a baby, and have the aftermath of taking care of our other children with varying degrees of medical conditions based on prematurity or other circumstances. It was very refreshing to talk to someone who knows what its like to have been down that road. Angie and Tim's story is very different from ours, but I think when you go through something like what we have been through you join an unfortunate sorority of very strong women and it can be very comforting to have sisters like that.

Okay, this has become a book:-)  Here are some pictures to go along with the stories:





Thursday, July 8, 2010

On the Charts

A huge milestone today.  When I took Owen into the doctor (because I thought he might be sick . . . he wasn't), he weighed in at a whopping 16 pounds 14 ounces and measured 26 inches.  This puts him in the 10th percentile for weight and 5th percentile for length.  He is now for the first time on the curve for his chronological age. . . a long way from 1 pound 6 ounces and 12.5 inches!

Tuesday, July 6, 2010

Babycook you are the BEST!

I have only used this wonderful contraption twice now, but I can't sing its praise enough.  I know that my Mother thinks it is a frivolous piece of equipment (and it is), but it is AWESOME.  Let me tell you how cool it is:


1.  All I have to do is look up the item that I am cooking and see what level water I need and then put that in the reservoir.

2. Then I put the veggies in the steam basket and lock it into place and switch it on.

3.  When its done it turns off and I dump the veggies back into the bowl and switch it to blend.



Its that easy, I love it!  So far I have made carrots and peas!

Independance Day

This past weekend we drove up to Eagar, Arizona up in the White Mountains for a getaway from the heat and so we could enjoy the outdoors in some much cooler weather.  It was about a 4 hour drive up through Payson (just another beautiful Arizona drive).  We are very lucky to have friends (Robert and Marci Haws) who live up there and extended their hospitality and Robert's Grandmother's house for the weekend.  If you haven't been up to Eagar, it is one of the prettiest places in Arizona.  All sorts of trees and farms and animals.  On Saturday there was a town parade down Main Street that was a lot of fun to watch, then we had lunch at a really cute cafe before lounging around and barbequing for the rest of the afternoon.  That evening we watched the fireworks from Robert's parents house.  We were far enough away that it wasn't super loud and Owen stayed up and watched the fireworks show, never taking his eyes off the horizon.  He loved it! 

It is so much fun to get out and take Owen around to our friends who have prayed for us during this last year and haven't yet gotten to meet him.  For me it is way to say thank you for your prayers and thoughts and living tangible proof that it worked.

And an update on his feeding:  Over the last week we again started really struggling and Owen's intake began to drop. . . .well while we were up in Eagar I began to wonder if his suck had gotten so strong that maybe he was collapsing his level 2 nipple and not getting any milk, and unfortunatley we would have to wait to get back into Phoenix because the town is very small and didn't sell our brand of bottles:-(  But thankfully Target was still open when we rolled into town Sunday night and we were able to purchase the level 3 nipples and the look on poor Owen's face when he began to eat that night was priceless, it was like getting milk for the first time, he was so happy!  Thank goodness it was that easy of a fix and not something more serious. 

Here are a couple of pictures of the parade.  That Abe Lincoln actually stands up!  It was really cool, and accounts for why his arms are so long.
Owen basically fell asleep as soon as we got to the parade and slept like a rock right through sirens and fireworks!  At least he saw the actual firework show that night.


Me, Kat, Owen and Baby Will (inside Kat's belly)

Friday, June 25, 2010

My Jelly Bean, Father's Day, and Wedding Road Trip

We celebrated Father's Day this year in two places, first at home before we left for Maggie and Ian's wedding in Clovis and then at the BBQ after the wedding. I was so stressed out on what to do for Eric I had no idea what would express to him how I felt about being lucky enough to be the Mother of his baby and how incredible a father I think he is. . . . . . so I bought him some much needed casual clothes and framed some pictures for his office and then wrote him a letter in his card, trying to express my feelings. . . . it seems like when I really want to say something, I get writer's block. But he enjoyed it none the less.  In Clovis, Maggie had emailed all of the girls and asked us for pictures of the Dads with their kids, and then she and Ian put together a really moving slide show of all the Dads present, it was really really cool and a lot of hard work for two people planning a wedding and honeymoon!


From the letter, "Whoever would have imagined in their wildest dreams or nightmares that we would bury one son and bring another home all in a short week." To Eric, you are my rock, and at the same time a soft place that I can cuddle into when I need someone stronger, you are the love of my life, my best friend, and a leading example of greatness. I love you.

Father and Son, dressed alike.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Someday, Owen will catch up in size and I won't get the suprise and confusion when I tell people his age, and then have to launch into his whole life story to try and explain why he is "so tiny"! I'm not mad about it, I am proud of him for being such a fighter, I feel like I am bragging when I tell his harrowing story of survival. Everyday he is getting bigger and stronger. His progress is truly astonishing to someone as humbly normal as me. I love to watch him grab at things or process in his mind how he is going to get what he wants. He is so determined. True to his gender, you can read every emotion in split seconds as they dance across his face.  I love it.  I cannot wait until he gets a little more mobile and has even more emotional development. 

On June 19th Ian Adair (Eric's cousin on his Mother's side) married Maggie Peterson.  It was a beautiful Catholic wedding.  Everything was amazing, I was really impressed with all of the details.  It was really nice to get to spend some time with them after the wedding as well.  Here are a few pictures.  You can't see very well, but Owen has on a tuxedo onsie, because "He's formal, but he's here to party."

The Bride and Groom

The Thing is . . . .

I'm still grieving.  I miss Liam everyday all day.  He is in every one of my thoughts.  About a week ago, I noticed that I wasn't crying myself to sleep anymore, and I was happy and sad at the same time.  Happy that I wasn't feeling that pain, but frightened that I might be forgetting important memories. 

I told Eric that we shouldn't think of us moving or growing away from him as time goes on, but moving closer to our eternal reunion.  In that sense, I am happy that some of the sharpness is fading on my memories of his death, but at the same time especially now that we are traveling and seeing family and friends, I start to feel like because no one even speaks his name its as if everyone is trying to bury something painful and forget him.  We were at a cousins wedding this past weekend and Liam's name was in the "those who could not be with us" page.  I started crying.  Sometimes it just slams me out of the blue like that when I'm not looking, that being said, I was grateful and touched that my son was included in those names.  Someone besides Eric and I saying his name. . . . in print.  It felt really good.  I know that people probably don't mention him out of respect for Eric, Owen and I for our loss and our pain, and I do appreciate that.  I miss you buddy, I love you, I will see you someday.

Monday, June 14, 2010

The Joys and Woes of Mealtime, Teething, and Pink Eye

Lately we have been having some difficulty again with Owen's eating.  Starting with the last day of our trip out in California a week and a half ago and continuing until this weekend he almost stopped eating all together. . . . well I guess that is an exaggeration:-)  But he did continue to eat less and less (although his night time sleep was not being inturrupted)  One thing that I knew was bothering him was the continuation and escalation of teething. . . . I think he is getting much closer to cutting those first two teeth up front, and I think it has been uncomfortable to eat (poor baby).  And then when I talked to his therapist at his visit, she also mentioned that the way babies tongues work during sucking changes between six and nine months (the things you learn), and that he may be transistioning and it is probably frustrating to him as he learns again how to use his tongue.  So for about a week we pulled him off his solids to focus again on getting enough milk and the last two days we have slipped nicely back into our schedule, and tonight we tried cereal again and to our delight he loved it and remembered what to do:-)  Time for mom to break out the Babycook and get crackin!

As to the teething, my cousin Tara reccomended some tablets that really work for him, and he has been really enjoying his "Sophie" in addition to his "Bugs in a Jar" and cool teething rings. . . . it is bittersweet for me.  I want the teeth to come for the excitement and also to relieve his discomfort, but then my gummy baby smile will be gone forever. . .

And my poor baby woke up from his late afternoon nap on Saturday with pink eye:-(  Poor baby was really uncomfortable.  Luckily we recognized it right away . . . . he woke up from his nap and his right eye was bloodshot with tons of boogers, so we called our pediatricians office and since he was over 4 months old the called the drops in and we didn't have to go to the hospital . . . . . they and we try to avoid that at all costs because of his immune system, and after the first round of drops he was much better. So he will be on the drops until Friday.

Kiera Shannon's Baptism

We recently had the honor of being asked to be Godparents to Kiera Shannon Yerton (Nick and Tory Yerton's daughter).  Being a Godparent is such a serious responsibility, and we are thrilled to be in that roll for Kiera, I hope she is able to get the same fullfillment from her faith as Eric and I have in our own. 

We drove out to L.A. for the event where she was baptized in the same church that Nick and Tory were married in.  It was such a beautiful ceremony and you would have thought it was a wedding with as many friends and family that came to the service. . . I love it.  Here are a few pics of the day.




Tuesday, June 1, 2010

Pictures of the first cereal


A Lot of Firsts

Whew, where does the time go!  Well we successfully pulled off one of the best suprises ever:-)  Last weekend we drove from Phoenix up to the bay area over the course of two days (our first road trip) to attend my mom's suprise retirement party.  It was very hard to keep a secret, but totally worth it to see the shock on her face when she walked in the door and saw all of her friends and her whole family including her own brothers!  It was a lot of fun.  My father got to hold Owen for the first time, which was really great to see, and also to be able to let others hold him (like a *real* baby)(tongue in cheek)  It is just so nice to be able to be a lot less on edge about his health now that we are out of flu and RSV season and Owen is THRIVING.  Both on the way out to my parents and on our way home, we were also able to spend some time with Eric's family which was really fun too.  Owen had never met his cousins Carter and Emma and it was fun to do the first of *many* photo shoots among the three of them. 

Owen did amazing on the trip.  Shortly before we headed out to California, his eating had been deteriorating to less than 3 ounces each time coupled with lots of distress and crying:-(  Then two days before we left, he woke up a lot more congested than normal.  So we took him into the doctor to ensure that he wasn't becoming ill, and also to talk again about his reflux.  Our doctor decided to switch up his medication to a different acid blocker and assured us that he was well, just a little normal baby congestion.  Well within 24 hours of the new medication, Owen's meals were a total turn around.  Instead of eating 2 or 3 ounces at a time he was consistently eating 5 ounces and sometimes wanting more.  He still has some disorganization during eating so we try to eat in a quiet location with dim lighting and no distractions which helps (he also likes me to sing . . . his favorites are Amazing Grace, anything from The Sound of Music, Aretha Franklin's Natural Woman, The Star Spangled Banner and Taps:-))  It is so awesome to have him not be in pain while he is eating! 

Back to the trip.  He did awesome in the car, sleeping and playing on his own the whole time, minus very minimal stops for eating and stretching.  His schedule really didn't hit any hiccups at all as far as nighttime sleep only one night did he wake at 4 instead of his normal 8 or 8:30.  Naps during the day were pretty much a loss, since we had so many relatives to see it was just too exciting!  Lots of little dozes instead of real naps!  By the end of the trip, he was more "fussy" than normal (I hate that word), but I was really impressed. 

When we came back to Arizona we had our first feeding therapy in two weeks, and our therapist was so impressed with how well Owen was doing she suggested that we could try some solids since his feeding problem was resolved as being a result of pain and not a neurological disability. 

So two nights ago we had our first solid meal!  Rice cereal, Owen did great.  Very interested and accepting of the spoon.  I am hopeful that this will continue to be a positive experience for us both!

All the Ze Cousins


Grandpa, Dad and Owen
 Grandma and Owen


The Damko Cousins

Carter, Owen and Emma
Emma and Owen

Sunday, May 16, 2010

Out and About

This week we went on probably our last hike of the season as the weather out here in Phoenix is getting hotter and hotter!  I love summer and I love the heat, but I will miss being able to get outside and hike and run.  I think I still have a few more weeks of running before I have to turn to the treadmill until fall.  Owen stayed awake the whole way up to the top of North Mountain just enjoying the view so we got him out at the top to take a few pictures!  We saw a little squirrel family it was so cute.

On Saturday afternoon we packed up and headed to our friends The Gage's in north Scottsdale for our first outing with other children.  They have three girls, the oldest is four and a half, and the youngest is 7 months (born 6 days before Owen)  I think Owen liked seeing all of the young faces and the girls just loved him.  My favorite parts (besides getting to see and visit with Ang) was when the older girls wanted to help me wake Owen from his nap. . . . I think he was a little overwhelmed:-), and then Owen and Ava sitting for pictures (see below).  RSV season is over and we are looking forward to some travel and visits with all our friends and family soon.





















Last week when we saw our feeding specialist, she suggested that Owen is becoming very overwhelmed during his feeding and that may be what is leading to all of the frantic disorganization and inability to feet more than a couple of ounces at a time.  I do think that the zantac has helped, but I think the memory of the acid could also be a cause of his trouble . . . as if he is still expecting to be in pain. . . . so now we are swaddling him EXTRA tight and feeding him in a dark room as a form of sensory deprivation so that he doesn't have to focus on anything but eating.  I think that this has made a great difference as he is more consistently eating closer to 5 or even 6 ounces at each meal and sometimes he stays very calm throughout the whole feed.  However regardless of his troubles getting the food in, he continues to thrive, I took him to the doctor to be sure and he is now almost 15 pounds and still gaining at a rate of 1 ounce per day!  So the goal for right now is to get him consistently eating closer to a "full feeding" so that he can eat less times per day and to keep each experience a positive one so that soon we can advance onto some solid foods.


Sunday, May 9, 2010

Mother's Day

We had a wonderful Mother's Day.  First Owen slept in until 8AM!  My sister Remie spent the night, and we all went up to North Mountain for Owen's first hike.  It was a hard workout, but really fun.  I didn't realize how heavy the weight of Owen and the stroller would feel while pushing up hill, but it felt good.  I made Eric take the stroller down, because I was scared I would trip and let go of it. 

It was such a beautiful day here in Phoenix, we couldn't help but want to be outside.   My sister gave me a wonderful cupcake decorating book and I am really looking forward to experimenting with them in the next few weeks.  The big present was a B.O.B. revolution jogging stroller that I have had the pleasure of using for the past couple of weeks.  I am so glad to be out running again even if it is only for a few more weeks until the weather becomes a little less forgiving.

Happy Mother's Day everyone!

Here are some pictures of our day.

Friday, May 7, 2010

First Photo Shoot

About a month ago, we were so lucky to have a professional photographer come to our house to take some "newborn" photos of Owen.  Her name is Cherise Kiel and she is amazing.  The session was a gift from one of our nurses who went to high school with her. 

It was so much fun, Owen was wild and awake the whole time.  He managed to pee on EVERYTHING and poop on Mom!  But he was a trooper, and Cherise managed to make the whole thing look serene!

Here are a couple of the proofs.

What Owen is Doing and What We're Working On

Okay, since we've been home Owen has really struggled with eating.  Sucking for an infant is instinct only for the first few weeks of life, then eating becomes a learned behavior.  Owen suffers a little from GERD (we think) and also because of his prematurity eating is just hard work.  He eats still like a newborn only little meals 3 to 4 ounces at a time every 2 to 3 hours. . . . . .before you say "he's snacking" . . . . I assure you he is not!  He is now taking zantac twice a day to help cut back on excess stomach acid. . . . it has been almost a week and I don't know yet if I see a difference.    We now finally have an in home feeding specialist occupational therapist who is going to be coming weekly to help monitor and guide us!  Yea!!

He is however mostly sleeping through the night about 7-8 hours so that is awesome.

He is getting great head control and able to push up on his arms in tummy time and stay there for extended periods of time.  You can tell he wants to crawl, but his heavy belly keeps him down!

He loves playing with his rings and his crinkly peacock those are his favorite toys.  He is passing things back and forth, using both hands and sucking and chewing on everything . . . I think he is getting ready to put some teeth through.

He can sit up very well supported and enjoys the view.

His favorite thing still is face time he chuckles when he gets you to smile or stick your lower lip out at him and wants to pull on your nose and lips.

He is very very close to rolling over, another couple of weeks I think.

He has really started to explore with his voice and loves "talking" which sounds very much like a baby gorilla.  He enjoys a good screech.

He rarely rarely cries.  I have to keep the monitor turned up loud because when he wakes up he just grunts and wiggles and tries to eat his hands or just hangs out and will do that until someone comes to get him.  Usually if he cries it is something to do with feeding!  But even that is not very common.  I would say I'm lucky. . . . but to be honest, I think I've earned at least this.

We continue to work back, side, and belly time with lots of flexing into a curled or fetal position.  We are teaching him about his feet and that he can grab them and roll from side to side.  We work on bringing our hands to center or midline instead of flailing about like a person falling backward off a bridge!  He is a hard worker and you can tell he wants to advance. . . . he amazes me with how far he has come.

Its easy to get frustrated with feeding and because I just want to help him "catch up", but babies are amazing.  I look back on the things we have accomplished and I know that what seemed impossible a week ago, is mastered today.  They just keep going, and going, and going and growing!

Bringing Owen Home

Finally after 109 days in the hospital and only one false start we brought Owen home!  A last minute echocardiogram showed signs of pulmonary hypertension so he was sent home on supplemental oxygen and a pulse-oximeter.  After the anxiety over having the O2 in the house diminished I was so excited.  And terrified.  I had gotten used to seeing a doctor at anytime 24 hours a day and having expert nurses to care for not only my baby but for me, and I was leaving all of that behind.  We got him all strapped into his carseat and walked out the door to the NICU only to have him desat steps away from the door, so we rushed back in . . . . . turns out we didn't have his oxygen open all the way!  Okay, take two we made it home.

For the first few days we basically played hospital keeping him on the same schedule, purell flying everywhere. . . .then things relaxed a little and I let him pick his schedule. 

Even though we were on house arrest we were driving all over town for his various follow up and therapy appointments. . . . I think we averaged 3 a week for the first few weeks and then 2 a week and now it is about 2 or 3 a month . . .hopefully with DDD which is Division of Developmental Delays (Owen qualifies for this federal program because of his gestational age at birth and his low birthweight . . . he is "at risk") we will have in home occupational and physical therapy set up soon.

You can see a little smile on Owie's face!

I know this is a nutshell but I'd rather get to more exciting topics and start posting more current stuff!