April 23, 2014

Before bedtime on April 22nd, I went to flush Owen's broviac after changing his broviac dressing. I felt a small squirt of water hit my face. 

Panic. 

I tightened his clave (the blue cap on the end of the line, thinking it might have been loose and allowing the saline to get out). This time the saline slowly leaked out of a very small hole in the broviac. 

I quickly clamped the line below the leak and talked with my mom (who happens to be a RN). She told me that it would be safe to wait until the morning to contact the doctors since we weren't infusing anything into the line. We wrapped the leak with sterile gauze and after scrubbing all the surrounding skin with clora-prep, we covered the whole line with tegaderm so he could sleep through the night. The next day we actually had a GI appointment scheduled. I called the doc early in the morning and they said not to wait but to come early to the appointment. After discussing the options with the doctor (1. repair the line 2. remove the line), we decided to remove the line. We called surgery and there were no available slots for that day so we would have to come back the next day.

So, early morning we drove down to Oakland to have his broviac removed!

Owen slept on the car ride to the hospital 

 walking in . . . 

We waited a while for surgery. I talked with Owen to try to explain that he didn't need his broviac anymore and the doctors were going to remove it. He was soooo upset. It has been a part of his life for so long, he doesn't know what to do without it.We have always been positive about it so he didn't understand why we were so happy to remove it. 

One of Owen's NICU nurses came to wait with us before surgery. Playing with her kept his mind off the surgery.

 The surgery went really well with no complications. Here is Owen in recovery before waking up from anesthesia. 

He woke up smoothly and was a pretty happy boy. He said he wanted water and ice (something he requests whenever he is in the hospital hehe). He wasn't very happy when he realized the broviac was gone though

 Here is a picture with Janie (Owen's NICU nurse) and his recovery room nurse. 

Prematurity and Reflection

Owen was a preemie.

Most people in our life know that. Even those that befriended us after he was home from the hospital. Not because we told them but because the effects of Owen's prematurity are seen. 

Seen right under his shirt

Seen every two hours when I take out a bag of syringes and formula and proceed to hook him up and feed him

Seen in his bedroom where we house a cabinet full of breathing equipment and extra feeding tubes

Seen beside his bed where a pole holding a feeding pump and an IV pump live

Seen in our second bathroom where we have a whole wall dedicated to his IV supplies and an extra refrigerator for all his meds

Seen in our cars where we keep boxes of  emergency supplies in case we are on the road when something happens

There are many more places it's seen

Owen lives a life surrounded daily by the effects of prematurity. Although, we don't really think about prematurity much. 

Owen is a happy 4 year old boy. He knows a life different than most other 4 year olds but he is happy. Most 4 year olds don't know the things he knows. It breaks my heart that he has to know what he knows, but he is happy. He has been through more in his short 4 years of life than most adults have even seen in all their years of life, but he is happy. 

The road given to us is not a road I wish for anyone but it is a road I will gladly take for this precious gift from God. 

I took some time looking through NICU pictures of Owen yesterday. Those 8 months seemed like an eternity when we were going through it. Now, those 8 months are just the beginning of his story.  The last 4 years have been hard but I am excited to see what God accomplishes through Owens amazing story

  

  

  

Wonderful News

Today our lives are changing. 

We have been working toward this day for quite some time.

I am actually in shock that this day is here and I will praise God that we have made it to this point in this journey.

Owen came home from the NICU on full g-tube feeds and that was it. 

It was terrifying. We were so nervous about the ng-tube and charted eveything just like the nurses did in the hospital. He was on many medications multiple times a day so we had to keep track of it all. He came home at 14lbs at 8 months old. 

When Owen was 22 months old, he weighed 16lbs and had been hospitalized many times for "possible bowel obstructions" which really meant his bowel had stopped working because he had caught yet another cold type virus. He would get dehydrated, lose weight, and need IV fluids to keep him stable until he got rid of the virus. After a year of that the doctors decided he would not be able to fight off all these viruses without the proper nutrition and he would need more nutrition to grow and develop properly, so they decided it would be best for him to go back on TPN (he was on it in the NICU as well). It was devastating to us but we knew it was the right choice. Owen gained weight quickly on TPN and even his hair was healthy after a few months. He thrived on TPN, it has saved his life. I am so thankful the doctors made that decision, he has grown into a pretty awesome little boy and we have been able to focus on keeping him healthy while he has the proper nutrition. 

For the last year we have been weaning him from TPN. He was showing us that he can handle the g-tube feeds he needs to thrive. It has been an up and down journey with weaning TPN. Sickness has definitely slowed the process. 

However, today is the day!

Tonight Owen receives his last dose of TPN! 

This is something we have been working toward for so long and I am jumping for joy! Our boy will be thriving on g-tube feedings and his oral intake alone! 

After tonight we will only have to care for his central line. 

No more preparing TPN

No more hooking him up

No more unhooking in the morning

No more weekly blood draws 

We are still unsure of how long he will have the broviac (his central line). One doctor thinks we should take it out after a few months of weight checks to make sure he is taking in enough calories through g-t and oral intake. She said we could put in a port later if he ended up needing to be accessed more often than we are expecting. The other doctor thinks we should leave it in through a full winter to make sure he can handle sicknesses without needing the extra nutrition support. 

I am unsure of which opinion I side with. I don't think I will push for either decision. I will pray that God lead the doctors decision and be content with that. 

We are just so thankful to be able to make this next step in Owen's journey together!

Hospital Holiday

December started with Owen in the hospital. We were disappointed but so thankful it wasn't anything serious. Owen just had a fever and a few doctors who dh never met me and never met Owen which made them follow protocol completely. We were soon home to enjoy the first snow of the season. We had some good times getting ready for christmas the first couple weeks. The boys got to meet Santa (multiple times), we made cookies, gingerbread houses, salt dough ornaments, paper chain countdowns, we had a candy advent calendar, etc. it was a blast watching the kids admire the tree each morning as they begged me to turn the tree on (although Owen was disappointed we never did buy a red star for the top).

December 23rd was my moms birthday. The morning started out like many others. Heath and I needed to clean out the backyard from tree cuttings so we got the boys to help. We loaded up my moms truck with branches and leaves and the boys helped the whole time. We went in to feed the kids lunch. As I made lunch, the boys sat down to watch a tv show. At one point I glanced over at Owen and immediately saw it. I asked Heath to take his temperature. He just didn't look right to me. I told Heath something was wrong (I can just tell when he has an infection, it's a look he gets in his eye I think.) his temp was normal but he still looked horrible. Heath decided to hold him. A few minutes later Heath said, "oh man, honey he's burning up. Bring the thermometer." Sure enough, fever of 103. It only took a matter of minutes. So, I rushed him to the ER as Heath packed a suitcase for me. 

The ER was the usual - temp checks, chest X-ray, urine sample, peripheral and central line blood cultures, and waiting. Lots of waiting. 

Below is Owen watching some netflix while a cold wash cloth attempts to lower his fever. Meds and cold wash cloths weren't getting it down.

The doctor in the ER happened to be the same doctor from when we were there on Black Friday. Black Friday I was sure it wasn't an infection. This time I was sure it was. I was intense and trying to get them to rush things. I told him we would need to go to Oakland for sure (where as last time I was considering going home against doctors wishes.) he asked me, "what's different about this time compared to last time?" I said, "I know him. He has a line infection this time." Although no tests were positive and white count was normal, I knew. The way he responded to Tylenol/Motrin, the way he looked at home, it was a line infection. Since his temp was unstable and he was getting antibiotics, they thought it would be best to take him by ambulance. 

Here he is. . . He perked up in the ambulance since it was about 20minutes after his antibiotics were given through his line (which is another sign that it's a line infection.)

We got to Oakland ER and they had to place a peripheral IV because they didn't want to use his central line for TPN if it was an infection, that would be feeding the bacteria. Owen was not happy since he already got a poke at the other hospital. 

After 12 hours the blood culture turned positive. Owen's fever was still present which was a sign that his infection was still there, despite the antibiotics. Owen had fevers until mid-day the 24th. 

By that night, he was acting like himself again! We were able to watch christmas movies together and had a good time.

On Christmas Eve night, some volunteers brought over a toy, a joy jar, and a stocking full of small toys. It was so sweet to see Owen get excited about all these gifts. It was nice to have so many surprises since we had to spend this time in the hospital. 

And with Owen's dinner, came this cute card 

Christmas morning came and we woke up to a wrapped present and a tiny stocking with a gift card in it. Owen was excited to open the present. It was actually a toy he really wanted for Christmas! He immediately wanted to open it and play with it. When his GI doctor came to see him, she brought a wrapped present for Owen and Isaiah. It was so sweet of her! She felt so bad that we were spending another holiday in the hospital. 

Later that day, we got visitors! Mimi, Daddy, and Isaiah came to spend Christmas with us. Since our boys are still young, we decided to not tell them it was Christmas Day. We figured we could give them a special day and hold off on all the presents and Santa until we were back home. The boys had a great day!

Owen sure was missing everyone and was so happy to have everyone visit him!

Owen was doing pretty good so we decided to take the boys down to the cafeteria for lunch. These two cars just happened to be parked outside of our room :) the pink one even came with a pole so we didn't have to push a pole behind Owen! Yay!

After lunch in the cafeteria, we came back up to the room to let the boys open a few presents that Dasdy brought from home. We just picked a few we thought would be good for Owen to play with while he was in the hospital. They sure had fun opening their presents.

Our family Christmas Day picture :) tried to get hospital stuff out of the background :) luckily enough, we didn't have a roommate. 

Once everyone left, Owen and I spent the rest of the day playing with all his new toys. Mostly play dough. So thankful for play dough in the hospital, although little pieces get everywhere!

Owen was in the hospital from December 23rd to December 30th. We got home late that night. Heath and I decided, since Heath was off for New Year's Day, it would make sense to make New Year's Day our Christmas Day. So, New Year's Eve came around and we were gearing up for Santa to come! The boys were so excited! We spent the night in Christmas pjs drinking hot (or warm) chocolate and watching christmas movies like The Polar Express! 

After making Santa cookies, we just had to try a few to make sure they would be good enough for Santa!

Earlier in the day we decorated our own plates for Santa!

After we got the boys to sleep, Heath and I set up for christmas morning as we watched Elf! Below is a picture of the filled stockings and the Santa presents under the tree.

When all was done, it was just before midnight. We turned on the TV to watch the ball drop! Thankfully missing the Miley Cyrus show - YUCK! 

Happy New Year! 

We took a picture at midnight :)

The kids slept in until 8 on our Christmas morning. When they got up, I went out into the living room to video their first reactions to Santa coming! They were so cute! We let them play with their Santa presents for a while before tackling stockings and all the presents they got from us as well. Here are just a few pictures from the morning.

Here is another Christmas family picture!

We had a great day playing with all their new toys! At the end of the day I was able to read a few stories with the boys in their room before they went to bed. It was a great way to end such a fun family day.

Sadly,the next day, Owen once again had a fever. He was on antibiotics from his infection from the last hospitalization so his elevated white blood count and low oxygen saturation level was concerning. The doctors thought he could have a fungal infection in his line because of the antibiotics. They took him by ambulance to Oakland Chikdren's once again. He gave us quite a scare that day and night. However, by the next day he was perking up and acting like himself again. We soon found by the viral panel they did that he had rhino virus (a type of cold). Once his oxygen saturation levels were stable, he was able to go back home. 

We sure had an eventful holiday season :)

Swimsuit!

We are so blessed to have such wonderful people in our lives! In the week that I made it known how sad I was for Owen to not be able to be in the water this summer, we had THREE offers from people who wanted to help buy the expensive swimsuit Owen would need to be in the water. I cannot say how thankful I am to have these wonderful people in our lives. Owen is having such a wonderful time in the water! 

The swimsuit itself

Now lets be honest, this thing is ugly. But, to me, it is the most beautiful swimsuit I have ever seen! It means so much to be able to give my son this wonderful gift. Swimming has been a big part of my life and I always envisioned my children as water babies who learn to swim before they learn to walk lol. I saw myself spending the whole summer by the pool with my kids. Unfortunately, that's not how things worked out. I have had to keep them away from water and that was not easy. Owen is drawn to the water and has been for a long time. Keeping him away was getting rough as it is such a passion of mine. With this new suit he is free. Free, once again, to be a kid. You should see him with his swim lesson class. It is truly amazing to watch the joy on his face. Joy, I think, that can only come from knowing that he couldn't always swim in the past. His joy showed that he knew this was special. His attitude, joy, outlook on life inspires me and shows me the thankfulness we all should have each day as we tackle challenges or are given opportunities.