It "Dozen" Get Much Better Than This

Wednesday was a day of information overload!!!  I got up very early and flew into Portland at 6:30.  We headed straight over to the hospital to start learning!   There were Doctors and Nurses coming and going all day, bringing information, checking him over and asking us questions. 

They still weren't sure what time discharge was going to be, they kind of thought we should spend the night just in case we needed something.  They assumed I was going to drive all 7 hours in one day and didn't want us leaving so late in the afternoon.  I let them know I was planning on only going half way and spending the night in a hotel.  They all felt much better about that, knowing that would be much easier for Zachary to handle.  So once that plan was in place, they got serious about getting us out of there!!

There was so much to learn about his care but the part I was the most nervous about was putting in his feeding tube!  When it came time to do it, I figured I better just jump in and do it since there were plenty of nurses around to help 'just in case'!  It turned out that it wasn't so hard putting it in. It's just making sure it's placed correctly after it's in.

We drove to Pendleton that night, after stopping in The Dalles for a short break.  He did so well the entire way!  We got up the next morning and made it home just after lunch!

It has been a whirlwind the past couple of days, getting home, getting him settled in a routine, we have had visits from the Home Health Nurse (they come once a week), Monday we will go see the Cardiologist and then Tuesday we will see the Pediatrician. 

A baby monitor was the first thing we bought after we got home.  Since his cry is so tiny, we need to be able to hear him at all times.  Plus when he cries, he turns a dusky shade of blue/purple immediately.  His sats levels drop and it's not good for his heart. 

I only have a couple of pics to post so far.....one of him snuggled in his car seat, ready to begin the journey home and one of cute little Jasmine, holding her new brother!!  She was so excited to be the only child home when he got here.  Everyone was else was in school!  :)

I feel like the good news just keeps coming!!!  Today the Cardiologist called and asked me to be there first thing in the morning for a day of 'training'!  I get to learn how to put in his feeding tube, how to then feed him with his feeding tube, change the dressings on his chest where they took out the chest tubes, etc.  Depending on how long it all takes, we will head for home later that day or possibly wait until the next day.

It was a week ago tomorrow that he went in for surgery and here we are, a week later getting ready to go home!  Our God is a God of miracles!!!  This sweet baby has so many people praying for him!  None of the conversations with any of the Doctors or Nurses beforehand mentioned anything about going home so soon.  In fact they all said to expect 2-3 weeks of recovery before being discharged!

And while this is all amazing news, he still has quite a road ahead of him.  The vocal chord test came back that one vocal chord is paralyzed, the hearing test today still shows that he deferred on both ears, treatment for his cleft lip will begin soon.....but after seeing how he has come through major heart surgery, we know that this little angel will pull through each trial with the help of our loving Father in Heaven!  And we are so thankful for His ever watchful eye on sweet baby Zachary!  Please keep praying for him! 

We will take pictures of our journey home and post them as soon as we can!!!

Today has been a busy day for sweet Zachary!  They moved him out of the PICU and into a 'big boy bed' in his own room in the general section of the hospital!  They dressed him in clothes!!!!  They used a drip technique of feeding to see if he was able to suck and swallow....he did just fine! 

They have a check list of 'to-do' items that he needs to pass before they will discharge him.  He has to have another hearing screening, another scan to check his heart, pass the car seat test (to make sure he can handle sitting in a car seat for long periods of time...like an hour), he needs to be given the opportunity to use a Haberman bottle (special bottle for children with cleft lip/palate) and have a vocal chord check (he sounds pretty raspy right now and they want to check it...very common when you have had a breathing tube in!).  Once he checks everything off his list, he will be discharged!  Hoping to knock a few of those off the list tomorrow!!  Here are a couple of pictures that Sabrina sent me today!!  He's dressed in jammies for the first time ever!  Plus, she gets to hold him and cuddle him whenever she wants to now!! 

Just as we were headed out the door to church this morning, Sabrina called with an update!  She spoke with the Cardiologist this morning, who reported that Zachary is doing very well post surgery!  She said in fact, tomorrow they will move him out of the PICU and into a room in the regular part of the hospital!  They started feeding him again with his feeding tube and he had just minimal drainage out of his chest tubes.  They will take the remaining two out tomorrow after they confirm that the draining has stopped.  He only has one main pic line in at this point and no other wires or I.V. lines!

I forgot to report on his hearing test earlier.  They tested him before surgery and he deferred on both ears.  That basically means neither ear was responsive to sound.  The specialist said that typically children with a bilateral clefts have some kind of hearing loss due to the fact that fluid builds up in the ear canal.  After he has had surgery to correct his palate, his hearing will not be so much of an issue but that's when language and speech intervention will be important due to him not being able to really hear very well the first year of his life. 

They will teach us how to put his feeding tube in before he's discharged so that we can do it at home.  He will more than likely have that until he's about a year old.

We have a houseful of excited kids that get to start school tomorrow!  We will be sure to post pics!!  :)

I talked to Sabrina on the phone a little bit ago and she gave us great news!!!!  They are taking his breathing tube out today after only 2 days post surgery!!!!!  That is amazing!!!  They already took out his catheter (which they said would probably be there until Monday!!).  They have taken one of his drainage lines out and will take another one out today!!!  Only one left after that!!  We are so humbled at the blessings our Heavenly Father is pouring out on sweet baby Zachary!! 

When Sabrina walked into his room this morning, he was laying there wide awake!!!!  We haven't seen eyes since pre-surgery!  That means he's already off the medication they were using to keep him asleep!  Wow!!  She grabbed a book and read him a story!  She also has a cd player in his room, playing peaceful classical music for him.  How thankful I am that she is there for him!  Such a sacrifice for someone her age to sit in the hospital day after day.  But she does it willingly and we will be forever grateful to her!

I flew back to Oregon on Tuesday so I would be there for Zachary's surgery on Wednesday.  He was stable the entire week with no real problems or concerns.  On Tuesday his sodium levels were low and they caused a bit of concern for a few hours.  Remarkably the next morning before surgery, everything looked good!

It was heart-wrenching watching him go into surgery.  So little, so fragile....it was all I could do to not bawl my eyes out right then and there!  They took him at 7:30 to start putting all his lines in for I.V.'s, etc.  They told us because he's so tiny and already been poked so many times, it might take them 2 hours to get them all in!  Finally at 10:20, I received the first phone call from the nurse.  She said that they had just done the first incision and surgery was underway.  She said she would call every two hours with an update.

At 12:30, she called again and reported that they were still working on placing the patch over the hole in his heart.  She described the process as being very tedious with such a small patient.  She said she was watching on the monitor and was amazed at what a process it really was.  She promised to call again at 2:30.

At 2:20, the phone at the receptionist counter rang.  She asked if we were in the waiting area.  I raised my hand to acknowledge her and she jumped up and whisked us into a conference room, stating the Doctor wanted to see us.

That quite honestly scared me to death!  There was no way they could possibly be done with the operation!  The Surgeon had stated it would take him 5-6 hours!  We waited in the room for about 8-10 minutes.  Finally he showed up with a big smile on his face and asked how we were doing.  I tried to hold it together while he explained that he was done and the surgery had gone remarkably well, better in fact than he had hoped for!  He went on to explain that he was able to patch another smaller hole (he had originally said this hole would most likely close by itself, but decided after seeing it, to just go ahead and stitch it up), complete the interrupted Aortic Arch and then lastly patch the Aortopulmonary window. 

That last one was the one that took the most time, the one he was most worried about and the one that was most crucial in fixing as quickly as possible!  He was so pleased that as tedious as it was, he was able to do an excellent repair job, in fact he believes it won't need another surgery in the future as he thought it might. 

When he finally got done explaining everything and it hit me that it was over and he was going to be ok, my emotions took over and I couldn't hold back the tears if I tried.  Such a relief to have that huge challenge over with.  He still has a long recovery ahead of him but the hard part is done.

They said he had bled quite a bit (as expected) but that it had slowed down enough that he was able to stitch him up afterwards.  He had warned us that more than likely they would not be able to sew him up for a few days after surgery due to swelling of the heart and tissues in the area.  So again, such a relief that they were able to stitch him right up.  It just means his recovery can start that much sooner.

We are hoping he will be able to get off the ventilator this weekend and that they will be able to remove the drainage tubes that are coming out from inside of him.  They stated that those are very painful and would like them out as soon as possible.  They also talked about starting him back on feeds in the next few days, which is wonderful news!

We were not able to take any pictures of him in the PICU (Pediatric Intensive Care Unit) because phones have to be turned off and that was the only camera we had.  He has tubes coming out all over him!  His stitches down his chest actually looked a ton better today than yesterday, which kind of surprised me!  I didn't think they would look that good so fast!

We appreciate all the love and prayers in his behalf!  He is truly our little miracle and our Father in Heaven has blessed him up to this point and for that we are eternally grateful! 

The only pictures I have to post are of Sabrina and I making key chains and bracelets in the waiting area, courtesy of the OHSU Volunteer that brought her jewelery making supplies!  She gave us something to take our mind off of everything while we sat in the waiting area.  We were there 13 hours that day and came home exhausted but thankful!

Whew, what a whirlwind this has been!  Just a quick update....

Sabrina and I drove to Oregon last Wednesday.  We spent our days hanging out at the hospital with Zachary!  The caseworker was able to get us into the Ronald McDonald house to stay as long as we needed. too.  Turns out our very dear friends in Hillsboro said we were able to stay in their guest house as long we we needed!  Even though the Ronald McDonald house was right there by the hospital, we felt like staying in Hillsboro was the right thing to do. That would free up our spot for someone else to stay there that didn't have any place else to go.  We had options.  We were so blessed to have others offer their homes and even their car for Sabrina to use after I came home! 

Zachary arrived in Portland after being flown in from Boise, on Tuesday. On Wednesday, they were able to remove his breathing tube and he has continued to tolerate room air without any problems.  They use a medication to keep the valve open in his heart that normally closes after birth.  That's what is currently keeping him alive.  If that valve were to close, he would lose the ability to have blood flow to his lower extremities.  He arrived with an infection in his umbilical cord that has responded well with antibiotics and is no longer an issue. 

The genetic specialist came to see us shortly after we arrived.  They would be doing  lots of testing to see what they could find., The Cardiologist Surgeon came and discussed the plan for surgery.  It was very enlightening but also very humbling to know that baby Zachary's life, rested in this man's hands.

Once they had removed his breathing tube, we were able to hold him for the first time! He felt like a miracle straight from heaven in my arms.  The overwhelming feeling of love and joy I felt for this tiny little bundle brought tears to my eyes that continued to flow for several minutes. I can't even begin to describe the gratitude I felt at being chosen to be his mother.

As the days went by, we worked into a schedule of holding, feeding, changing his diaper, taking his temperature and just gazing at his beautiful face to pass the time.  He loves to be held and snuggled right in when the nurse placed him in our arms. 

The finally diagnosed him with something entirely different than what they originally thought.  He has a very rare Chromosome disorder called  6p22.3 deletion......yeah, I'm guessing you haven't heard of that!  Either had we!  Basically, what it means is that there is the potential for him to be diagnosed with any or all of the following:  Anomalies of the brain, kidney conditions, heart conditions, cleft lip and or palate, hearing impairment as well as developmental delay and some learning difficulty.

Some of those have already been identified, others may come later or not at all.  Time will tell.  Some people have asked if that diagnosis is better than the Dandy Walker Variant that he was originally diagnosed with...and we would have to say, not better...just different.

I flew home on Sunday since Levi started school today.  I felt it was important for me to be here for him.  Sabrina stayed with her brother.  I will fly back to Portland tomorrow so that I am there when he goes in for surgery first thing Wednesday morning.  His estimated recovery time will be anywhere from 7-14 days and only Zachary will know when he's ready to go home.  The doctors tell us that they will not be flying him back to Idaho so only when he is totally ready to be released from the hospital will they release him.

We are so blessed that Sabrina is available to stay with her brother.  She put her life on hold to be there for him and we are truly thankful.  Here are some pics of our sweet new baby!

We have been blessed with a little piece of heaven!  We are so excited!!!  A new baby boy will be joining our family and we couldn't be happier!!!  He was born Friday night, weighing in at 5 lbs. 13 oz and 18" long!  Due to some complications with his mama, she needed to be induced 3 weeks early.  We knew there would be some health challenges (cleft lip, cleft palate, Dandy Walker Variant) but after he was born, it was discovered he also had a few patches on his heart that needed repaired.

At this point, we believe he will be flown to OHSU in Portland tomorrow.  We are hoping to join him there for his surgery in a couple of days.  We will stay with him as long as we can (school starts in a week for some of our kids) and then hopefully he will be home in 2-3 weeks!

This whole process has been nothing short of a miracle.  We were not looking to adopt but when we read the post that they were looking for a family for a very special baby boy right here in Boise, our hearts were touched in a way that we knew we could not ignore.  I will write more about the process later. but for now I just wanted to update what was going on in our lives!

Everyone is so excited and can hardly wait for him to come home so they can love him and cuddle him!!!! 

I totally forgot to post this picture with Jasmine's birthday post.....I love it!!!!  Levi was sitting at the table, helping Jasmine braid her pony's tail.  The cute thing was that he was sitting there, totally willing to help her with her cute little ponies, the amazing thing was.....he was really good at braiding!!!!  :)

Sorry, the pic is not the best.  We didn't want him to know we were taking a picture of him!  ;)

We were so excited to find out there was a rodeo in town.....and not just any rodeo....The Snake River Stampede!!!  We all got our cowboy gear on, tried to get whatever was stuck on the bottom of our boots, off and headed into town!

Papa and Grandma joined in the fun!  We all had a blast!!!  What's not to like about a rodeo?????

Little Miss Jasmine Belle turned 4 this week!!!!  I know, I know I can't believe it either!!!!!  We love looking at her baby book and remembering just how tiny she was when we brought her home!  It's so crazy!  Such a little ball of fire now!  Her whole face lights up when she smiles!  Her eyes crinkle and light just seems to pour our of her!  She is a joy!

She is at such a fun age.  She didn't really know what she wanted for her birthday which means I couldn't really go wrong with whatever we got her!  Perfect age!

She enjoyed getting birthday phone calls from her big sisters, who are not at home.  She could hardly wait for her cake and presents!  Everything at this age is just so exciting!

How blessed we are to have her in our family!  I can't imagine my life without her!  Happy Birthday Princess Jasmine!

Levi turned 15 last week!  I tried posting about his special day a few days ago and just as I was almost done, my computer freaked out and I lost everything.  Whenever that happens, it takes me a few days to want to start over......

Levi is such a joy!  He has done some growing up the past year and when that happens, he becomes even more of a joy to parent!  :) 

His life revolves around basketball at this point in his life!  He lives, sleeps, breathes and eats basketball!  The only thing he wanted for his birthday was "basketball stuff".  That translates to "Nike gear"!  Thankfully, we have a Nike Factory Store in the area, otherwise we would have had to make a special trip to Oregon!

The look on his face as he opened his gifts was priceless.  Ear to ear grin that stayed in place the entire time!  And when he said 'thank you' after opening his gifts, it was heartfelt....truly from the heart!  Haha, I had to laugh.  The way to that boy's heart is through a pair of Nike Elite socks!!

Here are some pics so you can see for yourself what I'm talking about! 


We love you Levi!!!  Thank you for bringing so much laughter and joy into our lives!  Our lives would be so boring without you!!