Thursday, July 8, 2010
On the Charts
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!
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.
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.
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.
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.
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
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!
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.
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.
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.
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.
I know this is a nutshell but I'd rather get to more exciting topics and start posting more current stuff!
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!
Lessons I have Learned
God never fails to give you an opportunity to take ownership and learn from a situation.
He has a way of making you want what you are given.
Everything is a blessing.
Prayer works.
Be thankful.
Love everyone.
Have Faith.
Trust.
Be as generous as you can.
Be compassionate, but also have empathy.
He has a way of making you want what you are given.
Everything is a blessing.
Prayer works.
Be thankful.
Love everyone.
Have Faith.
Trust.
Be as generous as you can.
Be compassionate, but also have empathy.
Saying Goodbye
Well it has been a long time since I've been to this page. A lot has happened since then. The worst has happened since then. Little Liam died on January 22nd. I don't know how else to word that. He was chugging along and we had finally started to really prepare to bring both our boys home, and then it became only one. We had purchased two swings and his crib was ready to go, all the clothes washed and put away, carseats unpacked and we were in a little bit of a panic because all of this was done when we thought we had only a couple days until Owen came home. Both boys had their surgeries scheduled for the 18th of January, we were nervous but excited. Finally after months Liam was going to have an intact intestinal system and a belly button and look whole. But surgery was postponed because of some results on a test. . . . I remember how bummed out both Eric and I were, we just wanted it over with. It was going to be a tough long surgery and we just wanted to get it behind us. Looking back it seemed like everything was getting a little bit worse, but at the time I chalked it up to him just being done with his insides being on the outside . . . who knows. Anyway he had his surgery the next day I think. It was a super long surgery but miraculously he came back extubated which was huge. He was so mad though, and as a side note. . . I challenge anyone who thinks bowel surgery is essentially painless to have their intestines pulled inside out through their belly button and left there for 2 months before shoving it all back in and poking around to make sure everything looks good. . . .okay, back to the task at hand. It quickly became an intense balancing act between controlling his pain and supporting his oxygen needs. But he was "stable" just recovering from a difficult surgery.
We went home late that night and celebrated. We opened champagne and toasted to the fact that both boys surgeries were a success and that they would be coming home soon. Liam had a belly button finally! A few hours later in the middle of the night, my cell phone rang. It was the hospital calling to let us know that for some unknown reason they couldn't get a blood pressure reading on Liam. But we shouldn't be too alarmed. The next morning we called and he was stable. Then a few hours later, they called again, Liam's condition had become quite critical and we should get to the hospital as quickly as we could.
Panic sets in, it was already raining, I just remember speeding as fast as I could as I called Eric and let him know to get there too. He beat me there, and the feeling in the room was grim. We were told that this had literally become minute to minute and that they thought that Liam had become "septic" when and infection gets into the blood and contaminates all of your major organs. The worst case scenario. I can't go into too much of the details of that day except to say that he continued to "code" throughout the morning. They were doing everything humanly possible in hopes that by the most aggresive treatment we could help him turn the corner and fight off the infection. He would be stable for a half hour or so and then crash again, and again, and again. At one point they did emergency surgery to relieve the pressure in his abdomen that may or may not be causing the pressure on his lungs. We just sat there, I couldn't talk or even look at Eric because I knew I would break. Meanwhile Owen was right next to him just being so patient and good. I think after the surgery people were starting to know that this wasn't going to be a happy ending, but I was still clueless and blissfully unaware that this could end so tragically. It wasn't until after shift change that I became painfully aware of outcome. I remember I went to the pumping room, and took out my Preemie book and read the chapter on difficult decisions and loss and I just cried. . . . only a little. . . but I knew. I texted Eric and asked him if we were just torturing him. I pulled myself together and returned to the battlefield. It was just getting worse, you could tell as a lay person that organs were shutting down and that the effect of the lack of oxygen was taking an unforgiving and lasting toll on this tiny little baby. The next two times he crashed I stopped praying for God to get him through it, and started begging God to take him. . . . that I was ready to let go, and to please release him from this pain.
Liam's doctor came to us to let us know that she and the team would keep doing this and trying to save him, but that we would need to make a decision to continue or not to continue, I already knew, but how do you say stop . . . . Eric and I both knew it was time, but we talked and I asked Eric to tell her that next time he crashed that we just wanted to make him comfortable and let him go . . . . give him back to God. The pain is still just as sharp, just as fresh as it was that night. I have no idea if it will ever be just a little duller.
We had him baptized by the Chaplin very quickly and he crashed, they swaddled him up and let me hold him. He was such an Angel . . . . I just remember thinking, My God did I make the right choice, please don't wake up because I don't want to have killed you . . . and he didn't . . . . he was gone before that moment, his little body was so much heavier than the 6 pounds 10 ounces that he weighed, its like when your soul leaves your body you get heavier. I was torn, I didn't want to let him go, but I wanted to run away.
His nurses, took out all his I.V.'s and bundled him up just like a newborn and let me hold him, and I did, until his little face felt cool, and then I gave him back, it was the most painful thing that I have ever done. It felt like someone reached in and clawed out every piece of my insides and just left me there to keep living.
Eric and I went to the parent room and just cried for what seems like an eternity, the nurses would come to check on us and they had the unfortunate task of having us sign things like body release papers and autopsy papers. . . . God bless NICU nurses, I can't imagine a harder task. Eric called our parents to let them know that Liam was gone. We woke up a few hours later and wanted to go home, but I wanted to see Owen first, so we went back to the same room where we had just said goodbye hours ago to our baby to hold our other son. I just wanted to feel him breathe a little before going home.
I know that it is God's will, and I believe that this is how it was always meant to be, but that doesn't take away the searing hot pain I feel at our loss. Liam has gained eternal life, and all of the things that go along with being in heaven, but I have just lost a son. So its true he is in a better place, but selfishly I want that place to be here with me.
This is how I say goodbye, by telling his story. I love you Liam, I will see you someday.
We went home late that night and celebrated. We opened champagne and toasted to the fact that both boys surgeries were a success and that they would be coming home soon. Liam had a belly button finally! A few hours later in the middle of the night, my cell phone rang. It was the hospital calling to let us know that for some unknown reason they couldn't get a blood pressure reading on Liam. But we shouldn't be too alarmed. The next morning we called and he was stable. Then a few hours later, they called again, Liam's condition had become quite critical and we should get to the hospital as quickly as we could.
Panic sets in, it was already raining, I just remember speeding as fast as I could as I called Eric and let him know to get there too. He beat me there, and the feeling in the room was grim. We were told that this had literally become minute to minute and that they thought that Liam had become "septic" when and infection gets into the blood and contaminates all of your major organs. The worst case scenario. I can't go into too much of the details of that day except to say that he continued to "code" throughout the morning. They were doing everything humanly possible in hopes that by the most aggresive treatment we could help him turn the corner and fight off the infection. He would be stable for a half hour or so and then crash again, and again, and again. At one point they did emergency surgery to relieve the pressure in his abdomen that may or may not be causing the pressure on his lungs. We just sat there, I couldn't talk or even look at Eric because I knew I would break. Meanwhile Owen was right next to him just being so patient and good. I think after the surgery people were starting to know that this wasn't going to be a happy ending, but I was still clueless and blissfully unaware that this could end so tragically. It wasn't until after shift change that I became painfully aware of outcome. I remember I went to the pumping room, and took out my Preemie book and read the chapter on difficult decisions and loss and I just cried. . . . only a little. . . but I knew. I texted Eric and asked him if we were just torturing him. I pulled myself together and returned to the battlefield. It was just getting worse, you could tell as a lay person that organs were shutting down and that the effect of the lack of oxygen was taking an unforgiving and lasting toll on this tiny little baby. The next two times he crashed I stopped praying for God to get him through it, and started begging God to take him. . . . that I was ready to let go, and to please release him from this pain.
Liam's doctor came to us to let us know that she and the team would keep doing this and trying to save him, but that we would need to make a decision to continue or not to continue, I already knew, but how do you say stop . . . . Eric and I both knew it was time, but we talked and I asked Eric to tell her that next time he crashed that we just wanted to make him comfortable and let him go . . . . give him back to God. The pain is still just as sharp, just as fresh as it was that night. I have no idea if it will ever be just a little duller.
We had him baptized by the Chaplin very quickly and he crashed, they swaddled him up and let me hold him. He was such an Angel . . . . I just remember thinking, My God did I make the right choice, please don't wake up because I don't want to have killed you . . . and he didn't . . . . he was gone before that moment, his little body was so much heavier than the 6 pounds 10 ounces that he weighed, its like when your soul leaves your body you get heavier. I was torn, I didn't want to let him go, but I wanted to run away.
His nurses, took out all his I.V.'s and bundled him up just like a newborn and let me hold him, and I did, until his little face felt cool, and then I gave him back, it was the most painful thing that I have ever done. It felt like someone reached in and clawed out every piece of my insides and just left me there to keep living.
Eric and I went to the parent room and just cried for what seems like an eternity, the nurses would come to check on us and they had the unfortunate task of having us sign things like body release papers and autopsy papers. . . . God bless NICU nurses, I can't imagine a harder task. Eric called our parents to let them know that Liam was gone. We woke up a few hours later and wanted to go home, but I wanted to see Owen first, so we went back to the same room where we had just said goodbye hours ago to our baby to hold our other son. I just wanted to feel him breathe a little before going home.
I know that it is God's will, and I believe that this is how it was always meant to be, but that doesn't take away the searing hot pain I feel at our loss. Liam has gained eternal life, and all of the things that go along with being in heaven, but I have just lost a son. So its true he is in a better place, but selfishly I want that place to be here with me.
This is how I say goodbye, by telling his story. I love you Liam, I will see you someday.
Wednesday, December 23, 2009
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