Adoption....

Finally, two years later, I have a video for our precious Elliana and Isaiah...Feeling so blessed and honored to be their Mommy.

A Fun, Refreshing, Week of a Wish For Isaiah

The time had finally come for Isaiah's wish to go meet Mickey Mouse at Disney World in Florida.

It was December 28th, with a couple kids in our family finally seeming to come down with the flu we were trying to hard to avoid. So the many prayers, extensive hand washing, masks on the faces for the healthy people, vitamins galore and homeopathic remedies went into full swing, all in the hopes of a short existence for those who were sick and a non-existence for those who were healthy. It was only 3 days until our flight to Orlando.

December 30th came and Toby was still extremely feverish along with Addie. The rest of us were holding out. We went ahead and traveled to the hotel by the airport, in faith that things would turn around by morning.

We were all up bright and early. Toby's and Addie's fevers were both broken. Addie was doing remarkably better, but Toby had a cough. So we kept him in the mask for the entire travel day. We also kept Isaiah in a mask so he would not pick up the virus still.

Onto Orlando we went. We picked up our 15 passenger rental van at the airport and drove to our resort. We arrived in the evening to our amazing resort, Give Kids The World. It is a lovely, little place designed for Make A Wish children and their families. It is staffed by thousands of volunteers. There is a a carousel, train ride, arcade, swimming pool and splash area, mini golf, special visits with Mickey, horse back riding, ice cream to eat all day, and parties every night, all free! We could have spent our entire week just here, but we were also given free passes to Disney World, Sea World and Universal Studies. We hope to return to Give Kids The World as volunteers some day as the younger kids are older.

The weather during our entire week in Florida was beautiful. We even went to the beach one day, which was about an hour drive. I think that was one of the favorite days for all of us. Not only is the beach the most favorite place for many of us in our family to go, but it was just peaceful and relaxing. In spite of the annoying seagulls that kept trying to snatch our food from our bag.

This was Addie's very first time at the beach. She wasn't so sure about the water, but she LOVED the sand.

This was Ellie's second time at the beach and she LOVED the water and the sand!

Isaiah and me on a train ride at Animal Kingdom.

At Animal Kingdom there was a safari jeep ride that was very neat. These rhinos were on a road right next to our jeep.

Our first day to the parks we went to Animal Kingdom. We had a lot of fun there, however Jay stayed back at the hotel with Toby as his cough was wiping him out. Jay kept Ellie by default, as we knew she would have the hardest time in general at the parks, so any day she could get in her nap and hang out would be a bonus for her.

The next day we went to Magic Kingdom, our entire group. There were 13 of us. Our 12 in our family and we also brought along one of our helper young ladies, Charis. She was a huge blessing and we were so thankful to have another pair of hands and eyes to help navigate our crew around.

Magic Kingdom was my favorite park. That was also the day that Isaiah had a special meeting with Mickey Mouse. He was quite apprehensive to be close to Mickey. He looks a lot bigger than on the television. All the other kids did great and gave him hugs and high fives. It was really neat that this Mickey was able to talk to us with a real Mickey voice even.

Fun meeting with Anna

Our family just arrived at Magic Kingdom.

Meeting Donald at Epcot

Epcot was very neat

In front of the famous Castle at Magic Kingdom

We also had the wonderful opportunity to see my father, his wife and my half-brother James. They were taking James to the airport to head back to TX to finish up his tech school for security forces in the Air Force, just like Jay was. Anyway, they haven't ever met any of these children, only Tyler, so this was a privilege all around. They live about 2 hours away from Orlando, so they drove up and had breakfast with us in our villa.

Some of the younger kids had never been on a horse. We got everyone up except for Ellie. She was going to but when she saw the horse she just kept shaking her head "no, no"..No way, was she going to get on that animal!

Isaiah on a horse for the first time, the volunteers were so kind and caring to all of us.

One of our favorite parts of the time in Orlando was going to Sea World. My older kids convinced me to ride something called the Mantaray....Uhm...I like roller coasters for the most part, but this one was what I would call extreme. You sat in the seat that put you face down and your road the roller coaster like you were flying. I could not open my eyes the entire ride and I was laughing and screaming that I did not want to be on it either. I am glad I gave my kids a good laugh. Makenna loves roller coasters and was laughing so hard at me the whole ride. Sorry. never again. When it stopped I asked Eliza, who was sitting right next to me, "What did you think, did you like it?" She just shook her head "No" She had no words....point made.

Anyway, we enjoyed the Killer Whale and dolphin shows, we went on a few fun rides and got to feed the stingray and dolphins. It was a wonderful place. Lots of memories were made that day.

Here are a few photos from our adventures at Give Kids the World. We got to spend 6 nights and 7 days on this wonderful trip. We had a very long travel day home and got home at midnight, which felt like 2 AM to us due to the time difference. We were so blessed and can't thank everyone enough for making this trip possible for our Wish Kid. We are so honored and humbled.

Hugs from Miss Mary.

Ice Cream every night!

Thank you Charis. We love you and so appreciated all your help!

We had a cute little Christmas Tree in our villas.

A Candyland Play ground. One of the daily gifts we received was a Give Kids the World Village Candyland Game.

Isaiah's Special Wish

In 6 days our family is being sent to Disney World for our special, amazing, heroic and sweet Isaiah. 
He has a serious, life-threatening heart condition that qualified him for Make A Wish.
He loves Mickey Mouse and we were blessed with this amazing opportunity. Every one in our home, aside from Makenna (because she is over 18) is being paid for. We will pay for way and we are bringing one of our dear helper girls, Charis.
We can hardly believe the generosity that has been given to us.

I plan to post an update after we return on January 6th.

I will also be doing a big update post soon that will share a little more about how his heart is doing these days.

Isaiah with his Wish Grantors

All of us (aside from Charis) who will be flying on an airplane to FL!!

More Equipment

Isaiah got his ventilator, which is used for a CPAP for him. The FDA has not approved CPAP machines for kids under age 7, so they use this fancy ventilator that has settings including the CPAP. It has a little humidifier attached to it, that heats up the water and then cools it. It is computerized and very fancy. I am on a huge learning curve trying to remember all the details for how it works.
We turned off all the alarms, except for the one for power (it has back up batteries) and when the water is empty. Unfortunately, the water only lasts about 8 hours maybe, at least that is what we found last night. So it will need to be filled up part way in the night so we don't get woken up to a loud beep located by all of our heads.

Children's told us the only way to get him used to this mask and machine was to introduce it slowly and playfully. We tried that a couple of times during the day but while he tolerated it for a few minutes I knew it was going to take a long time and my gut just felt he needed to just try it at night and I felt he would handle it well. So last night was our first night.

We put it on him and right away he became quiet (not like him at bedtime). His pressure is almost as low as it can go right now and the oxygen goes through the machine. He began shutting down in a way, no crying though. This was similat to what he did when we began the oxygen. However, I just encouraged him and asked him if we wanted me to hold him. At first he said "no" but then he allowed me to. I held him until he fell asleep, well actucally we both fell asleep.

About an hour into sleep I moved him onto his bed, which is next to mine. He slept without waking the entire night!! Not even a complaint about the mask. In the morning he woke up pretty cheery too. While this contraption mask is quite cumbersome and awkward, it does seem to help him breath a lot better and get better rest, so far. At nap time again today, he put it on, quieted down quickly and I held him until he went to sleep which was only a few minutes this time and he slept 2 hours without a peep. Now mind you, this is the child that has not had a night like that but maybe a handful of times. Typically he whines, tosses and turns, cries, reaches for me or kicks off his blankets numerous times at least, not to mention the snoring and gasping for air that often happens. None of this has happened since using the CPAP. I pray this continues.

 It is not his favorite thing. However, today when talking about it with the kids he said it was to help his heart. Such a hero of mine. I think I would have such a hard time wearing this mask. I put it just  briefly up to my mouth to see what it felt like and I already felt too confined and like I was choking with it. I always hated it when the put the oxygen masks on me during labor when I wasn't breathing so well. 

Isaiah was also a good sport to pose for these photos. I asked him to get into his bed to take a picture and he climbed right in. I love this little guy.

Change of Direction for Isaiah

Just when you think things will go one way God has other plans LOL. I spoke with the ENT on the phone last night (very nice and thorough doctor). She isn't comfortable that by removing tonsils and adenoids that his sleep issues will be resolved and believes he will still need CPAP for relief.

 

Rather than just putting him in a surgery, with possible complications and risks she would rather we try the CPAP to see if it even gives him any relief first and foremost. 

 

This will be a long on-going process, watching him for a healing of that nerve, and making sure those tonsils/adenoids don't activate and get larger than they are (I guess combined they are not too large of a blockage). So we are comfortable with that.

We have an delivery of CPAP tomorrow evening. Just wanted to give a quick update. Thank you for your prayers for him.

Isaiah Heart and Health Update

Well, the day before Isaiah's cath was scheduled he woke up with a very high fever, which has not  ever happened since we have had him in our lives. It got as high as 103.8 at one point. The cath was cancelled for the following day, as they won't do a cath with the potential of viral illness like that. He had no other symptoms beside fussiness and not wanting to eat, saying his tummy hurt. The following morning his fever was completely gone and he seemed healthy. I was a bit frustrated at first, not sure why God would allow this to be cancelled. I did surrender it to God though, knowing He has Isaiah in His hands and I am not going to be in control of even the timing of his cath, as much as I wanted to be. LOL

We had a sleep study scheduled for him for February 28th, because of his ongoing, terrible sleepless nights. We did ask them to keep us on the "Cancellation List" and on last Friday morning we got a call that they had an opening that night if we wanted it. I jumped on that chance and Isaiah and I were headed down to our Children's Hospital just a few hours later. 

It was a VERY long night for him. The technician was very thorough and kept coming in and trying different things on him to help his pressures. It seems he is hyperventilating from trying to breath and there is definitely severe sleep apnea going on. He had high CO2 levels through out the night that suggests that.

The doctor who read the study the next morning called us before we even made it home (1 1/4 hour drive home). She was very concerned about what was witnessed all night and asked if that was typical for Isaiah? I told her it was not totally typical but did happen part of the night just about every night and happened as bad as that, once a week on average. She recommended we get him into the ENT asap. He also would need a CPAP machine as well as this type of apnea doesn't usually totally go away even with tonsils/adenoids removed.

Yesterday morning, Jay took Isaiah to see the ENT and Pulmonary Sleep Doctors and get him fitted for a CPAP mask. The ENT doctor scoped him (they went down his nose with a camera which he was very brave about). What they found is that yes, his tonsils and adenoids are contributing to the blockage but only by 25%. The other major issue is that his left vocal chord has been damaged from his open heart surgery. So my knowing that this happened after surgery was right on! When are doctors going to listen better to mothers? Just thankful that he did not have his cath last week. God is so in control of everything and does care about protecting His little ones. What a faith builder this has been for me.

So it was still to be decided if they should remove his tonsils/adenoids or just wait and see if the CPAP does enough. My concern is that if they are causing some airway issues, which he did have that before the surgery just not as severe, and he has many procedures through out his life in his future and while the nerve in his vocal chord theoretically should heal, but may not, then of course they should be removed. Isaiah needs all the help he can have regarding this breathing issue. He has enough issues alone for his pulmonary hypertension. Thankfully, it seems the doctors agreed.

So right now, we are waiting to hear from the ENT to schedule that surgery. Because of his age and airway issues and heart issues he will likely be hospitalized for up to 3 days following this surgery. And they suggest waiting at least a month for him to heal before his heart cath is done, because of intubation and swelling etc. Currently, the Cath was put on the calendar for March 24th.

Not sure if that will work out for that date or not now. Again trusting the Lord to work out those details. He will also need an xray for swallowing to make sure he is not aspirating. He has had that done, but it was before October's heart surgery and all looked good then. He will also need another sleep study after surgery and on CPAP to make sure his pressures are good with the machine set up.

God is good!! Isaiah is so brave and such my hero. How blessed I am to be called "Mommy" by him and so many other precious "babies" of many ages.

Here was the night of the sleep study. It took over 30 minutes for the tech to get all the electrodes and stuff on him. He also had a cannula and a sensor over his lip to make it complete. I was not supposed to have my phone on during the test so after I took this picture I shut it down. 

Just Wanted to Share Some Amazing Smiles

Ellie and Isaiah are doing so well!! 

Some days Ellie has some melt downs, she is very insecure in her attachment to me some days and doesn't want me to leave her side. She also gets frustrated easily because communication is difficult. So add that to her disabilities and her age, and some hours are fitful. However, they are so much less than a few months ago. She is really thriving. She is strong and determined and so very smart. She is slowly sleeping better at night. I might get one or two nights a week now where she doesn't wake up at all.

Isaiah is talking more and more. He has lots of energy and using less oxygen.He has even begun to trot a little bit. He will be having his 3rd catheterization next month, February 12th. He is not sleeping so great. Interestingly, after his open heart surgery in October he has slept worse, not from heart issues but from what appears to be sleep apnea. He tosses and turns at night, snoring half the night through and obviously gasping for air because his airway is blocked. Some nights I don't sleep well listening and worrying about him. Then there are some nights he sleeps better. We have an ENT appointment and Sleep appointment in the schedule as well for him.

I just wanted to share these precious photos of the two of them, that my budding photographer (Moriah) took a week ago. I was so excited to see the joy and love in both of their eyes and smiles. They love each other so much, most of the time.

Heading Home Today!

Isaiah's x-ray is not changed too much but it is for the better at least. So we have the go ahead to leave the hospital!! I am so excited and Isaiah is fussy for home now that I got him all dressed and ready to go. I am just packing up and waiting for the nurse to finish up.

Here are a few photos of his day yesterday. We found out that when we took him out of the room and down to the cafeteria he was more cooperative and excited to eat some food. He still didn't eat much but it was something. 

From the Hospital

I am sorry I didn't post anything sooner about Isaiah and his surgery. Today is day 3 and I am just feeling like I can manage something.

Today I sit here next to a sweet, cuddly, fussy, gentle, little boy who is refusing to eat and barely drinks. He is sad right now as he wants Daddy. All the kids and Daddy came by for a few minutes to say hello and he is sad that Daddy didn't stay. On the same token, Ellie who came with Daddy, is sad to have to leave Mama at the hospital. I will be so glad when this all over and we can all be back home. In the mean time I will do my best to make his stay comfortable and secure.

Surgery was Tuesday October 8th, with a tentative start time of 12:30. It ended up starting at 2:30 instead. He was very out of sorts and not happy in his sweet, quiet way. He didn't begin asking to eat until noon and I just keep telling him, "I am sorry buddy, but you can't eat right now". The saddest part was when I tried to take off his shoes when we first arrived at pre-op at 10:30. He instantly panicked and began begging me, "No, Mama...No Mama" and shaking his head with big tears. After we weighed him in his diaper the nurse said to go ahead and put anything back on that made him feel more secure. I ended up putting on his shirt, socks and shoes. When it was close to surgery time they gave him so Versed to help take off the anxiety and help him forget going into the OR. The interesting thing was that he would still not let me take off his shoes. He panicked each time I tried, so I carried him back to the OR (he was smiling at that point) with his shoes on. They took them off after he was asleep. This picture below was minutes from us taking him back to the OR and I tried to take off his shoes one more time. He is crying and signing "shoes". Poor sweetheart.

The surgery lasted almost 6 hours. We saw the catheterization doctor after about 2 hours and he said his part went really well. They were able to stent the left pulmonary artery to almost 3.5 cm. He said all looked good and we should plan on another cath in 3-6 months to make sure it doesn't close up and see if they can open it up some more. We had a great surgical nurse, who kept us very informed with personalized visits and phone calls each major step of the surgery. The entire surgery his vitals were good and he was very stable. When they closed him up they did say he lost quite a bit blood, due to previous scar tissue from other surgeries, so they gave him so blood for that.

Isaiah had 5 IVs including the vein in his neck which had several medicines going into it. He was intubated for about 18 hours and had 2 drainage tubes under his incision. It was a blessing to see him stable after surgery but hard to walk away and leave him that night for me as his Mama.

Jay stayed with him the first night. I came in during the day. Jay stayed the second night and I have come in, likely for the remainder. It is so hard to be away from Ellie, Asher, Lenea, Toby, Moriah, and even my big kids. I miss them all so much. I had hopes, as the doctors thought, that he will get to go home by weekend end. However, it seems there is a fluid building up around one lung so they have put him on more diuretics to try and take care of that.  I know he will do so much better at home but we want him to be safe too. He seems a bit depressed and doesn't do well with any transition here.

For instance, he was happily sitting up with me last night, watching a Baby Einstein movie on my lap top. He was even talking and smiling for the first time since being here. Then it was time to graduate from CICU up to a regular hospital room. That is great news for him and it is so much quieter and more restful. But he didn't understand that and began panicking again as we wheeled his bed down the halls. I held his hand the whole time, assuring him it was okay and we were just going to a new room. The look in his eyes told me "Mom, I am scared, what is going to happen next?". So when we got to our room, it took a good 2 hours for him to not be so scared again. Of course, a lot of that included seeing new faces, being poked on a bit, etc. I am trusting that all of this will bring him to lean on me just a little bit more.

I took a few pictures with my camera but I don't know how to get it off right now, so these are all I have to share right now. This was day and half after surgery

Surgery Update for Isaiah

I have been waiting for final confirmation for Isaiah to let you know about his upcoming surgery change and some specific prayer requests.
First off, because one of the doctors who is doing his catheterization  needs to be out of town on the 10th we have been working since last  week to find a new date that is suitable for all of us. Originally
they wanted to wait until Oct 22nd and I said we were not happy with that, if they could see what else they could do. So after much back and forth it seems they "found" a time on the 8th. The issue is that it will be an afternoon surgery starting at 12:30 instead of 7:30 AM. So we will have a crankier little boy. He can have clear juice up  to 2 hours prior to surgery and he tolerates juice okay.
I wanted to give an update on his Cardiac MRI he had last week. He was sedated for over 3 hours. We knew it would be a longer procedure. However, when he was out the nurse told us they had a difficult time finding a vein for his IV. They sedate first then do the IV, which is
very helpful for all involved. When we got home I counted 21 pokes on his hands, arms, legs, feet and even groin. We are told he has fragile veins. We were also told he was dehydrated. This little pip only weights 22 lbs and he definitely takes in enough for his body weight. But he does not eat or drink very much at all. I have to coax him a lot to drink or eat at all. So whether it was just dehydration or weak veins or both, I am not sure.
When he had his cath done in July they had a similar issue. It took an hour then for them to get the IV and the Cath in his veins. So the positive that I am finding in doing an afternoon surgery is that will
give us more time to get fluids into since he is allowed water and juice 2 hours prior to surgery. Maybe it will be a blessing in disguise?
We are planning to stay down near the hospital as a family for the first few nights of his surgery. We live about 90 minutes away when traffic is bad, and lately after the floods it has gotten a bit worse.
Today we were able to book 2 rooms at the nearby base, which has very nice housing quarters with a full size kitchen for $60. Our insurance will reimburse for one room, so it will be doable for the first few nights.  This base is about 15 minutes away from the hospital, so not as close as the Marriott across the street, but pretty good for a better price and rooms.
I spoke with the cardiologist today regarding the results for his Cardiac MRI. Isaiah's right ventricle is only functioning at 22%, when it should be at 60%. The doctor said that while the procedure of
adding a stent to the left pulmonary artery will help take off the pressure, it will likely not improve that RV function too much. The whole point of this surgery is to stop the damage from occurring any
longer saving his heart and lungs altogether. I guess I thought it would do more for him and was understanding it would help it to dilate less, but the doctor was not as optimistic. He said it could take years for that to change. But our Faith is bigger than that and I know that his Creator will heal him. The doctor also said that he will always have lung issues, (pulmonary hypertension) since he has had it his entire life. But he was hopeful that he would still be able to lead a pretty regular life, playing sports even. 

Today I would just be  happy if Isaiah had the energy to run around like a normal 3 year old and drink more than a couple sips or  take a few bites of a toddler size meal at a time, without fatiguing and pushing it away. The doctor said he will continue to need oxygen for some time, but whether it
would be months or years we will just have to observe and follow him closely. He will also be more susceptible to lung infections. Which is a big reason why we wanted this surgery done before viral and flu season ahead.

I am asking for prayer as we prepare for his surgery.

1. That he would stay healthy before surgery and during recovery. We
keep having some tiny little colds going through our kiddos. I am
always having the children wash their hands and take vitamins. Isaiah
is taking his Vit C, Vit D and garlic. I have just added probiotics
too. But I am about to put a "no touch Isaiah rule" around the house
for those that are sickly.

2. I also want prayer that the morning of surgery he will not be too
agitated with not being able to eat. That is a long time for him to
wait.

3. Last request is that his veins would cooperate. I am trying to give
extra Vit C which is also supposed to help make veins stronger.

I plan to post at least after the surgery when he is still sleeping an update.

Finally, A Date

Two days ago, after much pestering our Children's hospital that we still did not have a date for Isaiah's surgery, we were able to get an answer.....First he will still be needing a Cardiac MRI to measure and see how much scarring has taken place in his heart from it being sick. They want a starting point before his surgeries and to see if anything more serious is going on (as if it isn't serious enough?) Thankfully, they were able to schedule it at the same exact time that Elliana is having her MRI on September 17th. The things that doctors can pull. It took us 6 weeks prior to get that early time for her and they were able to find a place for him in less than 2 weeks. That is okay, I am not complaining. So Jay will stay with Isaiah and I will stay with Elliana. It should be interesting. Then, because Jay doesn't have much sick or vacation on the books he will go back to work and I will drive the two littles home. I do plan to bring a teen helper though.

Then for surgery, he will have a big pre-op day on October 9th, which includes at least lab work, xrays, social worker visits, tour of where he will be, and a meeting with the doctors. Then the following morning early on October 10th, we have a 6 AM show time for a 7:30 AM scheduled surgery. The surgery is scheduled for about 6 hours, although that is just a guesstimate. It could be less or it could be longer.

He will have the catheterization done first, in the operating room. They will balloon and stent that left pulmonary artery that is too narrow. They said they will likely have to do this in stages, so this is the first stage. Not sure how many or how far apart that will have to take place, but I imagine he will be monitored closely for a long time.

Following the cath, they will do the open heart surgery to replace the leaky valve. That too will require multiple replacements as he grows, since it does not grow with his heart.

They said we should be prepared for him to be in the hospital for about a week. We are still trying to decide all the logistics in how our family is going to manage that. Jay and I will both be there for surgery day. I will stay the first night, at least. Then we will somehow decide how to take turns. A lot is going to depend on the needs of the other children, especially little Mama's girl, Miss Ellie. Mama's heart wants and needs to be in two places. However, with that impossibility, something is going to have to give. I know God will lead us through those steps. I am praying too that he stays only 5 days which was suggested might be a possibility. 

We are also talking through the possibility of getting two hotels rooms by across the street from the hospital. Our insurance will cover one room, Jay has a free night for another one at least, through bonus points. Just not sure if we can swing several more nights in a hotel. But if we did this, we could all be closer, which would make for easier switches at the hospital. (The hospital is about 75-90 minute drive, depending on traffic times, which can be bad.) Isaiah could see all his siblings and them him. We also thought Jay could take the kids to do some interesting and fun things around the city instead of staying home, which will make the time go faster for them and a more enjoyable, memorable time.

So that is the way it looks as of now. Isaiah has a slight cold and cough this week. It is obvious his heart/lungs are struggling a bit more, but he is holding up. Our desire was to have this surgery done with him completely healed before viral and flu season hits. I am not sure that will be the case for this date, but God knows. I am praying against him getting sick, especially at surgery, as they will postpone the surgery if he isn't well.  Please also pray for Isaiah to be free from extreme fear. He has been opening up so much to all of us, even a bit around strangers. His language is exploding and I so don't want this to set him back too much. I know it might and I am okay with that, but he is in this type of thing for the long haul, poor precious boy. Thank you for keeping him in your prayers.

My Sweet Babies

Three months ago we were in Hong Kong, getting some extra sleep from our very long day of travel (it was about 40 hours) and preparing to meet our two new children. I was excited and nervous at the same time. Not knowing what our lives would be like by adding two new children to the mix, ones with significant delays and medical issues and who were older than Asher was when we adopted him. But I was confident that the Lord had brought us to the journey and wanted us to be the new parents and family of these precious children.

Jay and I parted ways to save a week of travel time. It was so hard for both of us not to be at each child's "Gotcha Day". We believed that 5 days would not be detrimental to the attachment that God would be making between us and both of our new children.

The first few days were great, but hard too. Elliana would only let me hold her and do anything for her. And then Isaiah would only let Jay do the same for him. It did get better for Isaiah but we didn't push the issue for Ellie in China. 

She is still quite the Mama's girl, mostly when I have to leave the house for a couple hours. I typically take her with me places I go, shopping and such. But sometimes there are appointments or special times with other children and she does have a meltdown when I have to leave. But Jay is so great and patient with her and reminds me "You go, she will stop crying in 10 minutes and will get to see you return to her. All of that will help her believe you will always come back." It breaks my heart though, poor little thing when I leave. It is pitiful and hard not to shed a tear myself. 

Isaiah often believes when Ellie screams when I leave that he must too, but not always. He is becoming quite a Mama's boy too, which has been good. I was a little worried those first few days when he screamed when I held him and Daddy left. I kept trying to earn his trust and prove to him that I was safe, and fun (maybe not as fun as Daddy though), and would take care of him too. I think today he is believing that. I give the glory to God for answering our prayers.

Asher is doing well. He is getting so big, especially compared to the other two, 3 year olds in the house. He is head taller than Isaiah and 10 lbs heavier. ( And Isaiah is the same weight as Ellie now She has gained 5 lbs in 3 months, Isaiah maybe 1/2 lb and he is 4 inches taller than her. ) Asher's language has exploded. His vocabulary is amazing and his speech is moving right along. Asher is so full of joy and courage and vivacity. He is also very stubborn and likes things to be just "so" or he gets upset. We are working on reminding him that he is safe and it is okay for things to be different. Bringing Ellie and Isaiah into his world has rocked him quite a bit. However, I know it is for his betterment. It is not good for him to believe all the world revolves around him forever. It is good for him to learn to share, as he never had to do that before. It is good for him to learn to be gentle, again never doing that before. He is a sweet boy and thankfully we have good therapists that are teaching us ways to help him be all that God means for him to be. He needs consistency in his day, which we have a lot of the time. It is also good for him to have some days that challenge him so he can learn that not all things or days go the way we anticipate and he will still be safe. He loves to hug his little brother and sister. He is just such a big boy compared to them that we have to be right there guiding his body, so he doesn't accidentally push them over. The funny thing is that even though Ellie is pint size compared to Asher and can't move about or talk like he does it does not stop her from communicating to him she is not happy with him or even give him a swift hit. We are working on gentleness.

Elliana is one busy and strong little girl. She isn't walking on her own just yet, but we are working on getting a little walker for her to use. Right now we are borrowing one from the therapist, but it is a bit big for her. It was such a joy to see her use it for the first time. She lit up the room with her smile and excitement as she was learning to maneuver it around. She will also be getting some little orthotics to give her some stability in her ankles, which will help her use the walker better too. Her speech is slowly yet surely coming. She can only say a very few words and you would have to know her to understand what she was trying to communicate. But she is attempting. She is also still signing words. She has no issues letting us know what she wants. 

It is a blessing to see her world open up. I thank God every day for allowing us to adopt her and bring her out the darkness of the orphanage life. She might have had loving nannies take care of her, which we have no reason to doubt. However, the frustration she must have felt not being "heard", not being held often but sitting in a crib, not being able to get enough food, not having someone to call "Mama", all must have been hopeless.  God is a God of hope...I am blessed to share that hope with her and I am blessed to be a part of the hope she gives us all. She is a fighter, that is what helped her to survive. All odds were against her, but she kept on. Sometimes she is trying to tell me she wants to eat or wants her milk. Both of those words she signs well.. But while I am holding her, doing something else for another child, she will grab my face and make me look into her eyes and do her sign again. Sometimes I have to make her a wait a little longer, but I try to not make her wait long. Parenting adopted children is different than biological children. We have to earn their trust. We have to show them time and time again, often through food as that is huge on the bonding scale, that we are there for them and will meet their basic needs always! It is a process that we will always be adjusting and considering the root of the child's needs and how that will affect our relationship with them. But today when she signs her "milk" with her little grunt and forcing me to look into her sweet brown eyes I "hear" that she is begging me to take care of her, to love her like a mother should. 

Isaiah is our small, sweet, quiet but not as quiet as before, almost 3 year old. His birthday is in three days! He has opened up so much the last month. It has been a huge transformation. He was quiet, reserved, serious and whiny a lot of the time the first few weeks and even 2 months he was with us. Something has changed though. We are finally seeing that amazing personality that we could "see" in the photos we got while we were waiting to meet him. He is talking, talking and more talking. He  is bossy, telling his siblings "No" and copying things I say. For example, Ellie is standing up on the couch and I say "Sit down, Ellie" and he copies my exact words right after me. He is sleeping so much better. I think the oxygen is contributing to that too, but he doesn't wake up crying with us not able to pull him out of it for a while. He is often smiling or giggling with his siblings.

 His biggest issue is his heart. He has some days that are harder for him than others. And sickness is the biggest culprit. When he is sick it just wipes him out. He is not very active anyway, but when he doesn't feel good he just lies around and wants to be held. 

I do have an update on his heart. We sent in three different requests to top hospitals about a second opinion. We finally got all three recommendations the earlier part of last week. Two of the facilities concurred, for the most part, with our hospital here. However, the top surgeon at Stanford did not agree with their treatment plan here .He felt a different approach was needed, in fact, even stated in his letter the other would likely not work. His approach would be a lot more aggressive but likely very proactive for the future of his lungs and heart. So we very much considered his plan and were beginning to prepare our minds for travel to Palo Alto, CA, which is very close to where Jay and I grew up and lived up until our 3rd year of marriage. 

The entire time we were in contact with Isaiah's cardiologist keeping him in the loop. After we let him know we were considering this other approach he took the information to the team here.We quickly heard back from him that they still agree with doing the less evasive way first, would be best for Isaiah. If the other surgery failed we would be left with little options for helping his heart. He said that they did reevaluate if his valve needing replacing now or later and they felt now would be best, which is what all three other hospitals suggested and our team was not ready to do yet. So we are thankful that the listened to us and were patient with us as we considering other alternatives for Isaiah.

I had been feeling while we waiting for the doctor to let us know that maybe going to Stanford would not be best for now. At first, I was very much thinking that way but I kept asking God to reveal the right path and give Jay wisdom and us unity on the decision. It was then that God began reminding me He was in control and I needed to have more faith in His healing of Isaiah and not just the doctors. If we were to have Stanford perform the more aggressive option we weren't leaving as much room for God to show His hand in it all. If the less evasive surgery was to be done and still not be enough for Isaiah God will work his miracle and be shown sovereign. That same day that I was hearing God remind me of his power, we asked one the of the other hospitals to look again at Isaiah's record and look at the Stanford surgeon's recommendation for us, giving us another second opinion. (This would be Boston, the #1 heart hospital in the Nation) They still concluded that would not be what they would do. It was all coming together, the peace  that we were to say here and take our cardiologist's advice for Isaiah at this time. Jay and I were in unity on the decision, which we always wanted to have.

So in the coming weeks, still no date planned, he will be having a cardiac MRI and lung scan and  a heart catheterization for a balloon and stent procedure on that left pulmonary artery. The intent is to take off the pressure from the very enlarged and sick Right Ventricle. He will also have his valve replaced which was his original birth defect. They will closely follow him after that surgery with more caths, ballooning and stenting to help that artery become larger and work more efficiently in the coming months, years. We so appreciate your prayers for him. It is going to be a long road. He will also be looking at more valve replacements with open heart surgeries, as the valve doesn't grow with him. 

My prayer is that he will not have fears and that he will not lose his sweet spirit from all of this medical trauma that has taken and will take place in his little life. Isaiah too is a fighter. We know that the nannies that so loved him did not realize how sick he really was and we are ever so grateful that the Lord brought him home to us in the timing that He did. Isaiah would not have gotten help in China until it was maybe too late. Today, here in our family, we are able to closely monitor his health with our excellent doctors and above our Isaiah's Creator and Healer.

I will post when I have a date scheduled for his surgeries. God is good, all the time. All the time, God is good.

Wordless Wednesday....Mama Bonding Time

Isaiah's Catheterization and Next Steps for His Heart

Last Thursday June 11th, we left our house before the sun was up and drove the 90 minutes to our Children's Hospital. It was Jay, Eliza, Ellie, Isaiah and me. We took two cars knowing that Isaiah would likely stay the night (which he did).

After we checked in with insurance and wrist bands, we went upstairs and nobody was at the desk for the Heart Center. We were told to go to the intercom to ask for entrance into the pre-op room. Uh...where was that? Thankfully, after walking around a few minutes we found someone else going in there and we walked in and said "not sure if we are in the right place?"...they already knew who we were, didn't even ask our name and just took us to his room.

I had written up a Care Plan for doctors and nurses to read and follow for Isaiah, knowing that medical anything was traumatic to him and attempting to be his "voice". The nurse right off the get go said she had read it and would give him as much space as needed. I think she did pretty well, until following the cath when he was waking up and I had explicitly said that I was to only feed him..she gave him a bottle.. but I politely took it out of her hand and that didn't happen again.

All the doctors and nurses came into to examine him, which I think was the worst part. It is a training hospital so it was at least 5 people who did this, which I feel was not necessary and may push for that not to happen next time. By the 4th person he was in tears. I don't think the Fellow AND Nurse Practitioner need to listen to his heart, when the Anesthesiologist, Nurse and Cardiologist all MUST.

They took him back to the cath lab, Jay got to carry him until he was asleep. They were very good at updating us every hour, very promptly too. The first hour we were told took all that time just to get the IV in and into the arteries. They said his veins were very "spidery" and that is normal with heart kids. Poor guy had 9 attempts on the left side.

 The 3rd hour we were told they were ballooning the left pulmonary artery, not once but twice to see what they could do. Then just 30 minutes later they said they finished up. I had a gut feeling that they weren't able to complete the procedure since it ended so quickly, but hoped I was wrong. The doctor soon came out with many pictures and explanations. He explained each photo step by step and answered our questions as we went along.

The first major issue we saw was the size of his right chamber. It is approximately 4 times larger than it should be, which seems to be a secondary issue due to 2 other major problems...the pulmonary valve leakage (from his original birth defect of Tetraology of Fallot) and a very narrow left pulmonary artery. It was less than 1 mm wide when it's counter part is 8 mm wide, to give you an idea of what it should be. 

Back to the hypertension on the right chamber: It is so large that the "pump" is not pumping well at all. The doctor called it stiff and sloshy. They put die into the heart with the procedure and you can see on the photo that it just pooled into the bottom, as the heart could barely pump it out. 

The valve that takes the blood out of the right chamber has already been "repaired" in China. I say this as it really can't be repaired, it needs to be replaced. But the doctors have figured out a way to make the heart work, it seems, without replacing it, until the child is much older, finished growing and can have a valve replacement. This is what we originally thought his condition would be like. All of that should be successful in Tetralogy children, but only when the other aspects of the heart are doing well. Isaiah has a very narrow pulmonary artery going to the left lung. Like I said before, it was less than 1 mm when it needed to be close to 8. So they ballooned it up to 4 mm and had originally planned to put a stent into that artery to get the blood flowing to both lungs and take some pressure off that right chamber. Upon going in there and seeing how sick his little heart was and just not functioning properly at all, they realized it was not just an easy fix. In fact, the doctor said it was heart failure. Huh...Did I just hear that? Yep, "heart Failure!".. What that means is that simply his heart is not pumping like it should and it is in a dangerous situation. So there was no stent put in, there was a small biggering of the artery..it was up to 2 mm after the procedure. 

So now I know why my instinct kept telling me, even from our first nights with him when he was breathing heavily, coughing, whining and restless, that it really was due to his heart. I didn't listen at first, just "thinking" it was adjustment, grieving, fears etc. But as time went on, I did start to ask the doctors about it. I was told by our pediatrician and cardiologist that it was not because of his heart. I trust our doctors and have a wonderful relationship with our ped. But they were both wrong. I have a good friend who let us borrow her son's pulseox for a couple of days. That is when I monitored his sleep, because of a very minor cold was putting him into screaming a lot through out the night and he just hadn't done that before. I really felt the nudging that it was more serious than just fears or grief. His O2 levels dipped down into the 70s and mostly hung out at low 80 and 81. So now, the doctors agreed he needs to be on O2 at night and as tolerated during the day. 

So as far as we know now we have two options:

They can go back in through the cath and do what they originally planned, putting in a stent. Or they go straight to open heart surgery and replace the pulmonary valve so it works properly, not leaking, which in theory should make the blood flow more easily out of the chamber and into both arteries, even forcing the small one to open up more and in the end taking the stress off the heart and not causing hyper tension on that right chamber. There are risks with both, probably the valve being the most risky. If his heart wasn't so large with little proper function on that right side, it would be an easier surgery. But that raises the risks greatly. Once he has the new valve, it will need to be replaced as he grows. For that we are not sure how often either. But from what I understood, if they choose to do the balloon and stent, it very well might close off, stunting the growth of the artery altogether or it might not take the pressure off the right chamber and he will end up with surgery replacing the valve anyway. 

We needs lots of wisdom as to what God wants us to do. We might seek a second opinion. We are "supposed" to hear something next week. The cardiologist has been great about answering my emails. He just said this week he was talking to several people about what is best for Isaiah. But it sounded as if he was thinking the replacing of the valve needed to be soon and was our only option.

Last week I had some mother fears. I am processing them with the Lord's help and prayers of others. I don't want our little, precious boy to go through this anymore!! I know God has called us to this and called us to walk alongside him as he faces this challenge. Many times as a parent we forget it is our children who are the ones who are really brave and have the courage. They are the ones walking through their tragedy. This little boy, abandoned at 6 months of age, has been through so much in his short life already. I don't want to figure out God's reasoning, I just know I trust His sovereignty. Who am I to complain in my heart at all that I am walking this path?. No, I am thankful today for each breath he has and heart beat his heart makes. I am realizing more today that life is a gift and we should treasure it all the more. If the Lord allows us the privilege of walking along this journey with our new son,  into the world of multiple open heart surgeries, daily oxygen, etc..so be it. I am so ever thankful that I get to be mother holding his hand, wiping his tears and teaching him to seek the Lord through it all.

 Pre-cath...just waiting and getting examined...again and again and again...

 Not the greatest picture quality, but here is my corny husband all geared up to take Isaiah back to the cath lab. Isaiah was given Versed at this time to help him relax. And he was laughing at his Daddy quite a bit.

 Ellie being treated like Royalty and practicing her little wave from the wagon rides with Daddy, while we waited the 3 1/2 hours for Isaiah to be done.

 Isaiah upon waking up for the cath..He had to lay flat for 4 hours.. he drank 2 bottles of water and one bottle of apple juice. Poor guy was so thirsty, but we were being careful for him not to throw it up.

 Sweet Isaiah today, with smiles even wearing his O2. He knows it makes him feel better.