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.

Medical Update

The last few weeks have been big in adjustment, but really going well. God has been gracious, patient and merciful to me as I learn to mother 2 new, sweet, needy children. It has really been physically and emotionally exhausting some days, but I KNOW with prayers of others God has given me an extra measure of strength. I am so thankful for that, and it keeps a joy in my heart. 

I knew parenting these 2 babies was going to be hard work. The first few days Jay went back to work, I thought, "I don't know if I am cut out for this task. This is hard!" However, the Lord reminded me that He called me to it and He picked me to be their mother through adoption. And my strength was renewed and I got back up to my task of just doing what I knew to do as a mother to many babies before. Yes, it was double and triple hard some days, (still is). I just can't explain the wisdom, patience and love He has given me through out most of my days, but just tell you that,  "It IS from the Lord! and I CAN do all things through CHRIST, who strengthens me!"

Well, onto Isaiah and Ellie's medical stuff. 

Last week we had 2 important appointments. Ellie saw the orthopedic surgeon and Isaiah saw the cardiologist. Ellie went in last Monday and then had xrays taken. We finally heard the findings last night. She has a deformed right fibula, hip dysplasia and mild scoliosis. Her right leg is significantly shorter (although I forgot to ask by how much).

We are still not sure what the future holds for all of these. For now it is "wait, watch and further investigate" strategy. Because the doctor thinks that none of these should keep her from walking and from the other issues of her delays and inability to use her body, we have an appointment scheduled at our Children's Hospital in 3 weeks in Neurology. Then we will look at the whole picture. My mother gut tells me something is not right. She is cognitively smart, but can't seem to make her body do what she wants it to, and it is not completely orphanage delay. She started physical therapy last week, will start occupational next week and will start speech in 2 more weeks as well. More therapy..therapy..therapy..We do believe God has her in His hands and we trust that He will heal her.

Isaiah saw the cardiologist last Tuesday. Poor little guy obviously traumatized from previous medical procedures in China. Who knows all that was done, but we know at least two open heart surgeries before the age of 2. We had many quiet and loud tears at that appointment, but he was a trooper and with a snack and in Daddy's arms we had him smiling at the end of the visit.

Unfortunately, his results on the echo cardiogram were not favorable. I had been concerned, as at night time he is often restless, heavy breathing, whiny and coughing. Not all night, but it is clear he is uncomfortable. His echo showed that his pulmonary valve, which was repaired because of his Tetrology of Fallot birth defect, is still not functioning properly. There is some back flow of blood. Then the exiting blood to the lungs is also not going through the proper pathway, the pulmonary artery of one of the sides. In fact, the doctor couldn't even see it on the echo. He suspects it is too small or blocked. It is my minimal understanding that the body will still make pathways to get blood to the lungs and that is why he is still alive and breathing. All of this is causing hypertension on the right side of his heart, which is supposed to be 1/5 of the blood pressure compared to when we take it on an arm or leg. His about equal right now which is obviously too high. His Saturation % during the day at both doctor visits he had was still in low 90s. So the cardiologist advised us to have him go through a heart catheterization before a month's time. 

The day after we left Isaiah came down with a minor cold. No fever, just a little mucus drainage and small cough. That immediately increased his restlessness and coughing at night. We had been told by the nannies that since his 2nd surgery he was doing well, "except when he gets sick, it was harder for him to get over it". So I had mildly been prepared for this. But I was suspecting asthma. 

However, a thought had come to me to check his O2 levels more regularly and just see what is going on. By the 4th day of this minor cold (which was still minor) he was just not very happy and extra tired. He even took a morning nap with Ellie which he had never done before. A friend of mine has a son with a heart condition that requires lots of monitoring and I thought she might be able to help. She has a Pulse/Ox monitor that she graciously loaned to us for a couple of days. I used it when they brought it over and his O2 was at 89. I put him down for nap, just a couple hours later and in about 10 minutes into sleep it had dropped to 83. I knew I needed to monitor him at night. I put it on his foot that night and watched as best I could while sleeping myself. What I saw was a dramatic decrease in O2. It begins somewhat okay (88-90 when first laying down awake) but then it dropped as low as 75 that I witnessed while sleeping. The average number was 80-82 through out the night. When he woke up it quickly went up to 90. The doctor wants him to be over 88. So this definitely explains why he is having trouble when sleeping. I emailed the doctor who said they want him in next week and not to wait for his cath longer that that. I was so not ready for this and I know Isaiah isn't either. I trust that the Lord knows as He knew this was coming so I am resting in that.

So please pray for next Thursday at 8 AM Mountain Standard Time when Isaiah has his procedure. Jay, Ellie, Eliza and I will all go down with him for the day and I "think" the plan is for Jay to bring Ellie and Eliza home and I will stay with him if they keep him overnight. It was a hard decision as I really wanted to be with him. He is really beginning to bond with me but it is obvious he doesn't trust easily. I also don't know want to leave Elliana. Jay and her are attaching well, but she is slightly more a Mama's girl which is good and I don't want to lose that. It is important that these babies attach with Mama just a bit more, like a newborn would. They didn't get 9 months in the womb with me, and 12 months nursing. So I have to work for it, for the trust, for their love. Jay does too, but research shows if they have a strong attachment with Mama the other relationships will be healthy and secure too. Again, I cried out to the Lord today, surrendering that to Him alone. He knows what it takes to heal my babies and to make a strong attachment with their Mama and Daddy. He will do it in His way, not mine and I give Him that too!

So all your prayers are appreciated about all of the above. Truly it has been those prayers that are evident through this entire adoption journey with Elliana and Isaiah. Thank you!!