grace led in life

Our hearts felt pulled to China. As we researched adoption through China, we learned about the many kiddos, waiting to be adopted, that had "special needs" and were in need of loving homes and opportunity to care for their special-ness :) Many of these kiddos' birth families are unable to care for them, financially, medically... We felt fully drawn to these special little ones...not that it was about us...but that God was leading us to just "do". We felt such a pull and excitement about where God was leading us, knowing it would be to our little love! We have been blessed with great medical care and insurance coverage where we live...which was even more a blessing for a little one with medical needs. We didn't know what this would mean...but once we "met" Zeke in an email...we knew! Our little cutie had been born with bilateral cleft lip, cleft palate, and cleft alveolar ridge.
From what history we do have, we learned that Zeke had his lip repaired in China at about 4-5 months old. We are so grateful...the doctors here said the doctors in China did a great job at repairing his lip. His palate and alveolar ridge (gum line) still had two vertical (running from the front of the mouth all the way to the throat) "holes", thus bilateral.
We learned as much as we could about Zeke's cleft while he was still in China (which was basic info). During that time, we were blessed to be consulting with the Adoption Clinic here in Seattle through the University of WA, and they were consulting through Seattle Children's Craniofacial Center for us. Folks, we do not take this lightly...the fact that we had all the of the doctors THIS CLOSE to where we live (25 min away) was such a blessing! This is one of the best cleft teams in the world! Thank you, Lord! We felt so comforted, knowing we had a great team of providers right at our finger tips...right in our "backyard"!
Once we arrived home we made our consult appointments with all necessary doctors and providers for Zeke.
On January 12th, 2015 we went to Seattle Children's Craniofacial Clinic to consult with all these providers.

Keepin' Zeker man occupied in between doctor/provider appointments at Seattle Children's! He was a champ and did great...only cried a couple of times!

(This happens very rarely) Was able to get little man to sleep in my arms for a bit before our last pre-op appointment... loved holding our sleeping baby!

So, after all those consults that day, Zeke was all set for surgery to place ear tubes and have his cleft palate repaired on Friday Feb. 6th 2015

Friday came quickly...we did our errand running and cleaning prep for that day, knowing we needed to set ourselves up for our return home from the hospital. Justin was able to take a "leave" from work so he could be present for pre-ops, surgery day, and home the week after...Folks...huge blessing. God provided financially so he could take this leave. So thankful he was there for his own benefit, for Zeke to have his Daddy by his side, but also for mind and heart! (God knew what He was doing when he blessed me with Justin ;) .

Our little trooper!

We arrived on time for his check-in. They gave J and I badges at the front to be in the hospital. Then, it was the wait to have Zeke's name called to head back...

Happy smiles in exploring the waiting area :)

Once we were called back to set up for surgery it was a course of meeting for a quick minute each with multiple providers - doctors asking if we had questions, nurses asking questions, and Zeke still wondering what was going on!?! He held on to Mama and Dada tight and would shyly wave at anyone else in the room. We had decided to give him some meds to help him relax...he was not crying or upset at this point, but we discussed him being newly adopted in our family, and that we wanted to spare him from as many things to be scared of as possible. So, they gave him those meds, and he soon was very relaxed and VERY happy ;) smiling at all the nurses and doctors...waving...everyone was swooning over him...little charmer!

little loopy, smiley boy!

We had a child life specialist with us in pre-op who advocated for us and helped us communicate our needs with Zeke being newly adopted to our family. Blessing. Because of this, they allowed for me to go back in the operating room with Zeke and be with him until he was fully asleep. This also allowed for one of us (ended up being me) to go into recovery as soon as he was in there so he had one of us with him as soon as possible with waking from surgery. We wanted to be sure Zeke new we were always there with him...to help alleviate some of the fears. Always, will we be there for him.
So...back in pre-op prep...Zeke had all his vitals taken, we answered all the questions they needed, and we decided that I would go back into the operating room with Zeke, so I "suited up" :)

Holding on tight to our little bugga...both Justin and I were having a hard time with this. So difficult to have your child go through a surgery. Love our little blessing so much!

We gave lots of kisses and loves to Dada and made our way back to the operating room.
At this point...I just have to say...I am SO thankful for all the health issues/surgeries I have been through - as much as I was full of nerves having my baby go back into surgery...the hospital, operating room, many, many people in the room talking all sorts of medical talk did not scare me. I was as calm as can be taking him back there...which couldn't have been better for Zeke! He did not need to feel like his Mama was freaking out ;) We got into the operating room and thanks to those relaxing meds and the cutie pie that Zeke is...everyone was smiling and loved Zeke :)
A sweet nurse then escorted me out of the operating room and back with J in the waiting area for families...at this point some tears flowed...concerned for our baby and wishing more than ever that I could go through it for him. Poor J was waiting for me to come out and had nerves of his own. He brought up how he felt the same way he did through all of my procedures and surgeries...bless his heart...this guy is amazing y'all. What a rock, support, blessing. Love him. Zeke has a great Dada!
So, Zeke was now in surgery! We were given a pager for when updates were coming in. We knew that the first update would come quickly since the first procedure was the ear tubes with The ENT doc. Sure enough, about 20 min. in he we were already paged to meet with the doctor. He said all went well. Zeke had a lot more fluid build up than he initially thought and now we hope he will drain that liquid better through the tubes and be able to hear so much better too. This doctor was so sweet and again, so amazing he took time out of his "academic day" of research to come in just for Zeke!
(We have Zeke's post op for his hearing coming up in April...so we are unaware of results so far)

We knew then that it was cleft palate repair time. The average time for a repair is about 3-4 hours, so we knew it would be a bit before we had an update. J and I headed to the coffee/cafeteria area to eat something and wait. Honestly...so hard to wait!!!!!!
We received a few updates...all saying that Zeke was doing well, and the surgery was going well too.
when it got close to the 3-4 hour mark...we received an update saying the surgery was a little more difficult than expected...so it would be at least a couple more hours. nothing was going wrong, just intricate and little Zeke has a little mouth, so it was a bit difficult for the doctor to easily do everything that needed to be done. We were so incredibly blessed to be seeing Dr. Tse...to have him doing Zeke's surgery. We heard nothing but the best compliments given about him, and even some friends from church, whose cutie pie daughter had cleft repair surgery as well, had it done with Dr. Tse! Always comforting knowing someone who has been through it!
At this point, J and I were so tired and worried about little Zeke. The waiting room "couches" are not too comfortable and were filled to the brim with other patients and families...so we decided to go to our car and try to get some rest, eat some gluten free lunch I had packed, and just relax in quiet while we waited. (For ease of mind...the pagers worked in the parking garage :)
We finally got the final ring of the pager and we about jumped out of our car...couldn't get in the doors of the hospital fast enough to hear if the docs were done with surgery. We spoke with the nurse and she let us know they had finished, Zeke was doing well, and we would be meeting with Dr. Tse soon. All in all, the surgery was about 6 hours.
We had our meeting with the doctor. He explained the intricacy of the surgery. How he had to "rob peter to pay paul" in taking from other areas of the mouth to create his palate under his nose, the soft palate, and the hard palate of his mouth. Dr. explained how he had to dissect the muscles of the mouth under a microscope and realign them properly so they would heal correctly, so that Zeke would have more of a chance of better speech. We did not realize until he explained it...with cleft palate, the muscles in the roof of the mouth are running from the back of the mouth to the front (vertically). The doc needed to dissect those and re-place them horizontally so they would heal properly in order to help with speech. A person born with a full palate already has these muscles horizontally meshed together. The doctor was able to do everything he had planned. He said, again, how small Zeke's mouth was...so it took a lot for him to get through all of the surgery, but that all went well. BLESSING!


Once we met with Dr. Tse after surgery, Zeke was being taken into recovery. Justin and I decided as soon as they would allow, I would go back in the recovery room and be with Zeke so he knew we were there. Not all staff was ok with this, but thankfully we had some great people helping us out! :)
It was so tough to see how our little guy felt after surgery...he was so uncomfortable. Sure enough, like they told us, he already had those mitts on his little hands/arms. Thanking the Lord for keeping me calm during those moments after surgery. When I got back to Zeke, he had two nurses helping him out...they were so kind. They had given him all the pain meds they could, but he still was quietly crying and uncomfortable. I leaned in and was rubbing his back and started quietly singing to him...he opened his eyes and looked right at me...my boy saw me <3 and he responded to the song too. Even with being in pain and being out of it from anesthesia, he did some little "bopping" to the song. It was so cute and so precious! Of course no one else would know it...but this Mama saw a glimpse of her little son recognizing her and recognizing his songs we sing to him. Poor little boy just cried and cried for two hours in recovery...the nurses and I tried to keep him as calm as we could, finally they allowed me to hold him..that helped so much. How could such an awful time for him be also such a bonding time for he and Mama? We praise the Lord for the beautiful for Zeke amongst the pain and hardship. We will always be there for him...how blessed are we!
My heart was so full to hold him, so thankful we were on the other side of this surgery...but the road of recovery ahead was going to be rough. We struggled to see him struggling so much. We wanted to take away that pain for Zeke. I just held him and sang to him over and over. After a little over two hours it was time to move little Mr. brave to his hospital room. I was able to hold him and walk him to the room instead of wheeling him in the hospital bed. We (hospital staff  with Zeke and I) walked to our room, found the reclining chair in there, and just settled in for the many, many tough hours ahead.

Poor baby...so worn out. I wanted to cry...You feel so terrible to put your child through pain ever... no matter how beneficial it is. Just kept praying for him.

Finally after about another 30 minutes since we got to Zeke's hospital room, Justin was brought to our in the room. So good for Dada to see his boy! I felt so bad for Justin...he has done so much waiting and wondering in waiting rooms with me in the past...he had to have been so nervous for his boy! Thank the Lord we were on the other side of this surgery with our boy...able to hold him and care for him. Zeke would settle and calm when it was just Justin and I with him, but as soon as a nurse would come in to check vitals or give meds, he would just scream :( poor baby. He hated when the nurses would look at his foot/ankle for his medical bracelet (that is where his IV was) and boy...did he scream. it didn't take long and his IV fell out of his foot. finally the nurse told me she had a note that they had trouble getting an IV in him :( poor baby!!! Once we got home I counted 12 IV spots on his feet. No wonder he would just scream if anyone even looked at his foot:( I felt so bad! We had quite the rough night in the hospital (that is an understatement).

Our hearts loved to see him be able to relax enough to sleep. the sleep was few and far between during that first night... but so wonderful when it would happen.

Anytime the door of our room would open, Zeke would start crying. He was so scared. He didn't let himself fully sleep either. I hadn't left that recliner in hours and just held him...I think you get the picture of how the night went...little sleep and a screaming boy :(
We were so grateful for our sweet fam bringing us Chipotle dinner and coming to love on Zeke.


Sweet cousins checking on Zeke <3

After dinner we hunkered down for the LONG ROUGH night that was ahead. Zeke kept over-heating so thus not having a gown on or being clothed.

Our little love...lots of kisses on his sweet head while he tried to relax.

The next morning about 6am Zeke seemed a bit hungry so we offered him some oatmeal I brought from home...he ate it! HUGE BLESSING!

Proud Mama & Dada moment...my little super hero eating the morning after a rough mouth surgery. He was amazing us! We were praising the Lord for his strength! (Zeke's name meaning...God will strengthen <3)

Zeke also drank plenty of fluids and ate some yogurt and applesauce too...what in the world! Praise the Lord! They were not going to even entertain the idea of going home until he ate or drank. Folks...you have to know, it takes what feels like a stadium filled with cheers to get Zeke to even take a sip of water each day...so for him to drink so much was seriously a miracle! As a few more hours passed...we recognized in Zeke that he needed to go home. He had not had his IV since the night before because it fell out and to think of trying for another was not an option any of the nurses wanted to put him through (his feet were so swollen from the other IV tries) We were so grateful he had been taking all meds orally. I felt we could handle what we were doing there, at home. The nurses and doctor evaluated him and decided they were ok with us going home too. YAY! We knew it would be rough, but could tell it was worse for Zeke to be at the hospital. He needed to go to where he was comfortable and felt safe and secure.
Zeke was a little excited when we were packing up our bags, as though he knew we were packing to leave for home ;)

chubby cheek smiles <3 We LOVED to see those!

Folks...we took one step out the hospital doors, I told Zeke we were going home to see Mao Mao (Taylor our cat...he loves her) and he got a smile on his swollen face and started kicking his legs with excitement!!! We got in the car...he seemed SO relieved to even be in our car. We arrived home and got Zeke in the door and he became a different kid! HE WAS SO HAPPY!!!

So, he doesn't look happy in this photo...but smiles were rough with those swollen cheeks. He grabbed his stuffed animals and hugged them tightly <3

We breathed a huge sigh of relief just knowing he felt safe and happy at home.
The next hours and days were downright awful with pain, no sleep, mitt issues, confusion for Zeke, you name it...it was a battle. We were up about 15+ times a night with Zeker, so we averaged 1-2 hours of sleep a night...all of us. Zeke was used to holding a blankie (little washcloth from the orphanage) and putting his index finger up in his cleft as he slept. So, to not be able to do that due to having mitts on was literally torture to him. Zeke does not easily give in when uncomfortable or with change...so he fought sleep so much with being upset. Let's be honest...this little guy had and has been through so  much change in the last few months...such a trooper.We felt so bad that we could not explain to him what was happening.

We tried to keep his spirits up...so we took many walks to the park nearby to feed the ducks :)

We felt like we finally saw our little Zeke's personality starting to come back about two weeks after surgery. He started to giggle more, say more of his famous "oooo's", honk more, and want to play and explore more...Each day is a step closer to healing. At two and a half weeks the 'gloves came off'!!!

This was the car ride home from the post op. appointment that gave permission to take the mitts off! Zeke was just a little excited ;)

The days were still really rough...but we were counting each little blessing a victory! It seemed like life felt a bit more normal after 3-4 weeks. We already hear a difference in the sounds he makes as well...so cute to watch him try to form words! This week, week 6 after surgery, Zeke can say "hi", "how", "wow", and he tries so hard with other words, which I am sure will happen sooner than we think! So proud of our boy!
The bonding that has taken place has been amazing. He WANTS to be touched, held, and loved on.

We cherish these moments <3

Along with the good, has come some regression in behavior and emotions for Zeke. It is so much for him to go through...so much change and transition like I had blogged prior about. We are taking cues from him and taking each day as it comes. We recognize the need for "normalcy" for Zeke for his comfort. We recognize the need for stability and predictability for him...so he knows what is coming and is not fearful of what is next. It is such a journey...but we are here for him and want to help him through it. It has been one of the toughest times for all of us, but most of all for Zeke.
We cannot imagine what he was feeling. Moving to an entirely different country and home with new smells and sights, with a "Mama and Dada" that he didn't know yet aside from a picture, everything sounds different here, we talk different...and within 6 weeks of being home he has a major surgery and has to recover from it without his little hands to comfort him like he normally uses. Our hearts broke for him. This was one of those..."it is best for him" decisions we had to make as parents, but it broke our hearts for him too. We are so thankful at how God orchestrated all of this...and how He gave us peace amidst the rough, and comfort and endurance for us and for Zeke.

 
As most of you remember...China had contacted us through our agency saying they were going to do surgery this past Fall. We felt so uncomfortable with it but just prayed that God would protect our little guy.  We kept waiting for news from his orphanage, letting us know if he had had the surgery and how he was doing...Well, the surgery fell through and we found out while in China that they planned to do the surgery for Zeke at this time...like right now...like the same time we did it here. Our adoption of Zeke was sped up for reasons we could not understand (it's a God thing!) We left early December to go adopt Zeke, when we kept being told the EARLIEST would be maybe mid or later January. What a huge blessing, and answer to prayer, that we could go adopt our son and have him home for this surgery...to be there for him and have such a wonderful team working for his benefit.

So future? We give his palate a year to fully heal and will go from there...time will tell what more Zeke will have to have done...so we just take it for what it is right now and will face the rest as it comes! Proud of our little guy...what a smile he has!