Just Hanging Out

This past Saturday was a pretty good day. The boys slept all night so I was able to sleep for the first time in over a month! I slept in until 8am and I was soo excited!

My mom and I decided we needed to take a trip down the hill to see my Grandpa and to do some shopping.

The weather was so nice! Can you believe it was sunny and over 60degrees? in January? wow!

We went to lunch, had a nice drive down the hill, went to JCPenney's to drop off Heath's wedding ring to be fixed, and then headed off to my Grandpa's house.

My Grandpa is getting older but he loves to watch his grandkids play. They had a lot of fun. I brought my camera along because I intended to take some pictures with the boys and Great Grandpa. However, he wasn't feeling good so I just got some shots of the boys playing :)


A quick stop at Day-O (the boys love it! and its my favorite coffee shop!)

Isaiah amazed by the light overhead

Owen wanted to climb on the coffee table so bad!

But playing under it was the only option :)

Trying to get all of us in one shot hehe

This is the face Owen now gives us when we ask him to smile



Memory Monday - Auntie Stephanie

After Owen's second surgery we got a package in the mail!

It was Aunt Stephanie! hehe

Stephanie is a college friend, my best friend. She is amazing and I love her so much.

 In college, Stephanie and I were a part of a service club, Phi Alpha Sigma. One weekend the Phi Alpha's went on a trip and Stephanie couldn't go. So, I put her face on a stuffed bear and took her with us! I took pictures of her in all the places we visited lol

We were so happy Auntie Stephanie could comfort Owen at all hours of the day and night! And, she was the only one aloud in the NICU when they limited visitors to parents only hehe :)

Stephanie now sits on a shelf in Owen's room. She has lost her sign but she is still there cheering him on!

AND. . . DONE!

Tonight Owen had his last dose of his antibiotic, unasyn! yay! After he went to bed I packed the pump and bag for shipment!

I want it gone, as fast as it can go hehe

This will be my first night of uninterrupted sleep! (hopefully the boys will cooperate)

Bye Bye pump!

. . . and then there were 3

Grandma

Owen loves Grandma!

 and cherrios, but mostly Grandma

They have so much fun together

She spoils him :)

Memory Monday - Surgery #2



Owen's second surgery was Oct 22nd, 2009. It was almost exactly one month after his first surgery. A week before the surgery they were worried because Owen was not pooping. The surgery team came in and checked him out. They found that his bowel had perforated. This means that, due to the surgery he had already been through and the starting of his feeds again, his bowel "burst" (for lack of a better word) and created a hole in his intestine. The surgeons were not surprised given the extreme bowel resection he had been through prior.

The surgeon and the neonatologist wanted to have a meeting with us to discuss options. When you go into a meeting to discuss "options" you never know what to expect. We were certainly not expecting them to say so plainly what they said.

I will never forget it.

The surgeon was late

He came in, sat down, and said

"I can do this surgery but there really is no point. He won't survive long after surgery."

That's it

plain and simple

We were shocked

The reason the surgeon said this:

1. he didn't believe Owen would even survive the first surgery

2. He thought that they would have to remove another larger amount of bowel

The doctor asked us if we would like to do the surgery or not. To us it was no question. If we didn't do the surgery, Owen would definitely die. If we did do the surgery, Owen would probably die. To us it was simple. Do everything in your power to save our child.

So they did

Surgery is always so scary. Sitting in the waiting room waiting for a doctor to come in and tell you everything went great. This surgery was only 2 hours. They came in and said that they only had to remove a few centimeters of bowel. We were so thankful!

Owen recovered quickly from this second surgery, we were blessed!

Sleep Deprivation

Who is blessed by sleep deprivation?

Me!

Am I sleep deprived in the hospital?

sometimes, but not quite as much as I am now

Why am I sleep deprived?

Owen is on antibiotics that need to be given every six hours. 12am, 6am, 12pm, and 6pm. Not only do I have to be up at all of those times, but an hour after each of those times to unhook him from the antibiotic. On top of that, during the 12am dose and the 6am dose I have to stop his lipids (because they are not compatible with the antibiotic), flush the line to make sure the lipids are clear from the line, hook up the antibiotic and start it. Then when the antibiotic is done, I have to flush again and hook the lipids back up. This might not sound like much but keep in mind, I am a tired mommy going into a room with 2 sleeping babies. I have to make sure my hands are clean and that I keep the line clean while trying to keep Owen from waking up. I also have to make sure the lines don't get tangled because he could roll over or something and create an even bigger mess. On top of all the medical confusion, I also have a 1 year old that has missed me and wakes up every couple hours just to make sure I will come in the room to help him back to sleep.

This all creates a sleep deprived mommy

So why am I blessed?

I am blessed because we are home, all of us. It might sound little to many people. Those people have never been in a hospital room with their little one. Being home, even with all these extra tasks for me to do, is the best thing in the entire world. I am able to watch Owen walk around, play, laugh, and bring joy to our whole family. I get to be here with Isaiah as he grows and learns each day (way too fast I might add). I soak in every moment with them. even the crazy, busy, want-to-pull-your-hair-out-moments, because you never know what could happen tomorrow. We have learned that, at any moment, our world could be turned upside down. Owen's life constantly reminds me of how blessed we are with just one more day, one more minute.

I am not saying we don't struggle. Do we get frustrated? Yes! Do we sometimes think we are never going to move forward in our lives? Yes! But, again, Owen always reminds us to take a step back and be thankful for all we are blessed with.

Our Blessings

A Little Love

Another hospital visit = special time on the phone with Daddy and Grandma :)

He loves talking on the phone when he's at the hospital!

He didn't want the conversation to end

Looking out the window

Just another day in the hospital

Hopefully he will be discharged tomorrow!

visit: jan 11th - jan 18th

Memory Monday - EEG

I thought, given Owen's recent health status, that these pictures would be appropriate.

For those of you that don't know, Owen is currently in the hospital. Last wednesday, the 11th, we noticed that Owen had a fever. Because of his central line, we knew we had to go to the hospital to be admitted. When we got to the hospital he was fine but soon after his temp rose and he had a febrile seizure in my arms.

This situation brought me right back to January 2010. My grandmother's funeral was that morning. We went home and received a phone call that scared us to death. Owen had RSV and the nurse called to tell us that he had a seizure and that he was having heart arythmias. We rushed to the hospital and were greeted by two of his primary nurses (even though their shift was over, they stayed to be there with us when we got there).

These pictures were taken when Owen started to recover from RSV. He was off the ventilator and was stable enough to look into the seizure. He only had one seizure. They did an MRI and an EEG and could not find any reason for him to have had a seizure. They decided that it must have happened due to RSV. We were so relieved.



Steps forward?

Owen had another GI appointment today. Although I was pretty nervous about this appointment, it went pretty well overall.

The points we went over:

1. Owen's weight: This is always the scariest part of Owen's appointments. A mom might say, what's so scary about a weight check? It's a normal doctor appointment routine right? Yes and no. It is something that they do everytime we go to the ER, to the pediatricians office, GI office, pulminology office, surgeon's office, ect. However, each time they tell me to undress Owen and place him on a scale, I get a big lump in my throat. A part of me wants to cry. How stupid. I know it sounds pretty dramatic but that's exactly what goes through my head every time a scale is placed in front of Owen's walk through life. So, I undress him, hold my place him on the scale, and hold my breath. To the nurse it is just another baby, just another weight to chart. To us, it is a question of whether what we are doing with Owen's feeds/tpn mix is working. The scale reads . . . "11.92 kilos. yes! Yes! YES!!!!!! Are you kidding? Pure excitement runs through me! Last time he was 11.4 kilos . . . he gained! great news :)

A great way to start an appointment

2. Owen's poop: What a weird topic, right? Well, it is a huge topic up for discussion each and every GI appointment. What else would a gastroenterologist be interested in? hehe

Owen's poop has not been his "normal" ( I say "normal" because Owen's normal is nobody's normal. It is diarrhea that doesn't leave the diaper if we are lucky lol).  I have been a little worried because his poop seems to be burning his diaper area. He is even starting to bleed. I have used every different ointment we usually use when a yeast infection gets this bad but they don't seem to be working. The doctor told me that, because Owen got multiple antibiotics in a short amount of time the past month, it's not surprising that the burning has lasted this long. She told me to give it another few weeks and she gave us a prescription for a new cream to try. I am picking up the cream tomorrow and I sure hope it works. The poor little guy is being such a trooper dealing with his horrible rash.

3. Owen's TPN/Lipids: This is the part that was a little scary to hear (even though I know it can be fixed and hopefully will be soon). The doctor said that Owen's liver numbers were shown to be elivated last week in his labwork. This means that his liver is showing the effects TPN/Lipids can have on the liver. Owen has been blessed with a pretty good liver. Some kids can show elivated numbers within days of being on TPN/Lipids. Owen was on them for about 7months in the NICU and only started having elivated numbers in the last 2 months. He has been on TPN/Lipids for 7months now and is just starting to have elivated numbers. The doctor said that they were going to lower his Lipids to only 5 days a week because lipids are mostly what causes the elivated numbers. Hopefully this will prevent the numbers from continuing to climb.

4. Owen's g-tube feeds: Owen is currently taking a formula called neocate infant at 27calories per ounce. His feeding rate is 55mls per hour/ 24hours a day. For almost 2 years we have been trying to get him to 30 calories per ounce. It has taken us almost 2 years to go from 22 calories per ounce to 27 calories per ounce. We have to move him up slowely to make sure he can absorb all the nutrition he needs. Since being on TPN Owen has been able to move up with his feeding rate/calories quicker. I am so excited because the doctor has finally approved him to move on to neocate JUNIOR! at 30 calories per ounce! This is huge because we have heard great things about neocate junior. Some doctors say that babies do better on neocate junior because it has a prebiotic in it that promotes healthy bacteria growth.

5. Continuous Feeding: Owen has been continuously fed through a tube since he was 3 weeks old. We don't know any different. He wears his backpack all day every day and its haning right by his bed on an IV pole at night. It is what kept him alive and continues to keep him alive. Today we discussed the possibility of weaning continuous feeds! This is huge! In a month or two we might be able to have 2 hours off a day of tube feeding! He will be without his backpack for 2 whole hours each day. Now, to be honest, Owen has been off his feedings that long before. However, this will be every day! I am very excited! This step is exciting to me because of the road it leads to. If Owen can handle condensing his feeds to 22hours a day, soon it could be 21 hours, 20, 19, 18 . . . someday maybe even . . . dare I say it?  . . . Bollus feedings!!! ahhh, that would be wonderful! I know, I know, I'm getting ahead of myself. A mom can dream can't she? hehe - I love that I can pretend to look into the future :) this is why I don't like goals. They get my hopes up. Yes, hopes are good but they also can bring big let downs if you think about them too much. I will try to continue to look at each day and be thankful for where Owen is.

Memory Monday - Great, Great Grandma

This picture is extremely important to me. I found it important to share because the anniversary of my Grandma's death is approaching. I have been thinking about her a lot lately. I miss her so much. This picture was taken in the beginning of September 2009. Owen was still at Doctor's Medical Center. At that time, the doctor was telling us that Owen would not be coming home until December. My Grandma's doctors were telling her she only had a  couple more months, as she was battling cancer for the second time and her body couldn't handle it.

Because of this information and the fact that nobody was aloud into the NICU except for the parents, we were sure my Grandma would never get to meet little Owen. Heath talked to the doctors and they agreed to let her into the NICU for a short period of time. This was so special to me. She was able to come in and touch him and sing to him (what she does best. . . she is a wonderful singer). I have a video of her talking to him and singing to him.

This was the only time my Grandma ever got to spend with Owen. She passed away in January of 2010. Owen was diagnosed with RSV and put on the oscillator the day my Grandma died. It was a very sad time during our NICU stay. The night after my Grandma's funeral, Owen started having seizures and heart arrhythmia's. We were beside ourselves with grief and had a lot on our plates. I was so worried about Owen and so focused on him (as I should have been) that I didn't really go through the grieving process for my Grandma.

As I look back on that time and miss my Grandma, I am comforted by this picture and the video I have to cherish.

I often wish my Grandma was here to hug and kiss my babies. She loved her family, and especially the babies, more than anything in this world. She put the Lord first and taught her family to do the same. She was an amazing person and the most wonderful Grandma. She had a very sick baby as well. My aunt Robin was born without an esophagus and, at that time, they had no idea how to help her. She went through countless surgeries and many experimental procedures. On my hard days, I want so badly to talk to my Grandma, how did she do it? I know she would have many words of wisdom and turn to her Bible to help comfort me.

p.s. I am sorry for being MIA for a week. Our family had a pretty rough week and I, personally, had a very hard week emotionally.

A Look At 2011

January



January was the start of our long stretches in the hospital with Owen. When the year began we had no idea how much our lives would be consumed by Owen's health and just getting through each day. We started off the month with family pictures! The boys were so little and cute! The day the pictures were taken, Owen was acting a little strange. We saw faces on that day that we had never seen before. I thought it was just because he was uncomfortable taking pictures. However, it turned out that he wasn't able to poop and later that night began throwing up his poop. He followed that day with several weeks in the hospital. His hospital stay moved right into february. Isaiah grew and grew while Owen and I were away.

February

Owen spent the beginning of February in the hospital fighting brochialitis. There were several days where he needed oxygen. And, whenever he got a bug his gut motility would slow to the point of needing IV fluids for hydration. The rest of February was pretty great! A couple really exciting things happened in February. Number 1: Isaiah learned to sit on his own! Number 2: We bought Owen's first backpack! This was huge because it meant that I had my freedom again. Before Owen's backpack, I spent my days chasing after him while pushing his pole all day. He was on continuous feeds and no backpack. I had a tiny baby to take care of and was having to follow my 1 year old around so that he didn't yank his tube out of his tummy. The backpack was a wonderful blessing!

March

March brought many tearful moments and joyous moments. Isaiah learned to crawl and got his first tooth! Owen began to eat by mouth! He started with cheerios and was soon on to many other solids! 

 What we remember most about the month of March is that Heath's dad, Howard, passed away in the beginning of the month. He was battling cancer. Our family still misses him daily. He was taken much too soon. We have had many moments of picking up the phone and realizing we won't be able to call and tell him what we wanted to. He was an amazing man who was always caring about others first. A true man of God.

April

With April comes Easter and . . . standing children! They both learned how to pull themselves to a standing position this month! April 23rd marked the one year home mark for Owen! We were so excited to realize that Owen had come so far and was growing into a beautiful little boy. To honor his 1 year anniversary, our non-profit, Owen's Miracle, delivered our first set of NICU gift bags! 40 gift bags went to families struggling with their babies in Oakland Children's Hospital NICU.

 May

May brought much more hospital time for Owen. During this hospitalization the doctors were closely monitoring Owen's weight. We had been discussing his weight in months prior but it was starting to concern everyone. When he left the NICU he was a 14lb baby boy. In May, more than a year later, he was just over 17lbs. Gaining 3lbs in one year is not ideal. Especially when you start discussing his physical and brain development. Gaining weight and good nutrition is key to developing properly. The doctors started to discuss the possibility of TPN at home to help support his healthy growth and development. The doctors went back and forth on this decision and they didn't all agree. In the end they decided against it. Owen was in the hospital most of the month of May. Unfortunately that means that I don't have many pictures of Isaiah during this time :( I often feel bad for Isaiah and I get teary eyed when I think of all the time I missed with him in his first year of life.

June 

June brought a couple very exciting things in our lives! #1: The boys got to take swim lessons for the first time! This was both of their first times in a big pool. I couldn't really take Owen last year because he still had his NG tube and I wanted to make it easy and just keep him in his baby pool. The boys were naturals in the water! I was so excited to get to take them to the pool. I worked as a lifeguard at that pool for many years. I even became a manager and taught swim lessons for many many children. It was great to be able to have my kids in the water! I hope they grow up to love it! Unfortunately, Owen only got 4 days of swim lessons before getting sick and ending up in the hospital again. This hospital stay was extremely scary. He ended up with a gram-negative rod blood infection. These infections usually are only seen with people who have central lines. The fact that he got this infection without a line in place was a very scary thing. This infection caused him to be hypothermic. His temperature was in the low 80s and his heart rate was going through the roof. On top of everything, the particular bacteria growing in Owen was a drug-resistent bacteria. It took the doctors several days to pinpoint which drug would be able to fight off the bacteria. Thankfully, he got through it. This is the hospitalization where they realized that he would need a central line and would need to start a TPN home regimen. They placed a picc line in his left arm the day he was found to be negative for the bacteria. It was a relief because his IVs were not lasting long. He got a new IV almost everyday and it was becoming increasingly difficult to get an IV at all. At one point they had to poke him 18 times before finally getting a good IV.  #2: Isaiah began to walk!! He started walking June 30th! Owen was still in the hospital when he began to walk but many people sent me videos so I could watch right along with them. Isaiah was growing up so fast and I missed so much of it. Way to go big boy!

July

July was an adjustment period for us. It began in the hospital. Owen was discharged and sent home with TPN and a picc line. We were so nervous but we had to learn fast. We went from being comfortable with his g-tube feeds to a much more difficult routine. We accepted the challenge and got organized! My mom graciously offered up the back bathroom so we turned the extra bathroom into a medical supply room. All the supplies and equipment soon became second nature. We were doing Picc Line dressing changes weekly along with weekly lab draws. It was a little tricky because where we live the hospital does not usually take care of children with a central line at home. Most doctors here have never seen a short gut baby. It also required us to drive to Oakland weekly (a 3-4hour drive) for Picc Line maintenance.

July brought many new things into our lives. Our most exciting development was . . . July 25th . . . Owen started WALKING! We were so happy for him! Because of all his hospital stays (not to mention his ever-changing weight of his backpack), Owen was struggling with balance and strength. With a lot of work with physical therapy Owen finally did it! It is so exciting to watch your 23month old finally walking! Now we had two mobile children!

August

August meant birthdays! Heath's birthday on the 17th, Owen's birthday on the 28th, and Isaiah's birthday on the 29th! All my boys in one month :) Sadly Owen had to be admitted into the hospital on Isaiah's birthday. But, he was found to not have an infection and was out just in time for his birthday party. It was a small party with just family and close friends. However, it was a wonderful party with Thing 1 and Thing 2!

September

In September we went on our first Family Vacation! It was lengthened when Owen ended up with a Picc Line infection. He was mostly healthy but did have a fever of 105 one night. Other than that, he just got to spend some extra time with family and friends. My brother, who lives in Vancouver, watched Isaiah while I was in the hospital with Owen and Heath took a bus back to Sonora to go back to work. Doernbecker Children's Hospital took very good care of Owen. I was so happy to see such a wonderful hospital was available in our favorite place to visit, Portland.

October

We were excited for October because it meant we were going to celebrate Halloween at home for the first time since Owen was born! Owen was in the NICU for his first Halloween and was in the hospital last year so this year was the first time we actually dressed both of them up! Don't they make cute Crayons?

November

November was very low key. We were working on talking and verbal language with both of the boys. They were both sick most of this month so we chose to stay home for Thanksgiving, just the four of us. We had a lunch/dinner that I made. It was not very good because I am not a very good cook, but I will learn :) This month we also realized that Isaiah badly needed a hair cut :)

December

December was one crazy month in 2011!

It started off great! We bought our newest Christmas ornament for the family, we watched Elf nightly, and sang Christmas songs all day long! Heath and I celebrated our 2year anniversary on Dec 6th! We went away for a whole weekend for the first time since Owen came home from the NICU in 2010. We were so nervous to leave Owen but knew my Mom, a nurse, could handle his care just fine. It was a much needed restful, fun weekend. After these fun events, it got a little crazy. Owen spent a couple weeks in the hospital. However, in between those weeks he came home for Christmas eve and Christmas! We were so happy to have our family all together for Christmas :)

Our family had a crazy 2011

We pray that 2012 brings health most of all! and happiness always