Noon Update - Tue.

I just talked to the doctor who had originally told me Kate would be here for many weeks. He said that he is very encouraged by her sudden drop in fluid output but that some patients level off and drain 50cc's a day for weeks and weeks. So, he warned that although it is encouraging to see the fluid output slow down, it doesn't necessarily mean that she will go home soon.

So...we will just take one day at a time and see what God has planned for Kate!

Perspective

Kate is sleeping, so I wanted to check in again because I am tired of watching "What Not to Wear." :) I'll have to keep it short because my power cord is on the fritz and the only way I can get juice to my battery is to squeeze the wires together until it burns a hole in my finger. Jeff ordered me a new one this morning. I don't care if my finger is smoking, because I need this connection to the outside world. :)

Anyhoo... Just some thoughts from me as I have walked the halls of this amazing hospital. I am just reminded again and again that I am so blessed. There are so many sad situations here. They lost a five month old baby a few days ago in PICU. There are children with cancer and Mama's living in fear. We, on the other hand, will be going home as soon as Kate's tubes quit draining and she has a great life to look forward to. We know her heart will eventually wear out--but we have hope that by the time that happens, medical technology will have figured out something to help her.

We are blessed with family and friends who are praying and offering support for our physical needs. What a gift all of you are!! We do not take you for granted. We are deeply grateful for all of your prayers and encouragement.

God is holding us tightly in His arms and it is completely true when He says, 'My yoke is easy and my burden is light." He wired us for this purpose and we are privileged to walk this road with Him. Thank you for being willing to walk beside us. We know you could choose differently.

So cool! :)))

Kate's nurse today is one she had last week. She just told me that she cannot BELIEVE the change in her. She said, "Last week I couldn't keep up with the fluid replacement. She was dumping it so fast and was so sick. I thought she was going to be here for a LONG time. I can't believe how much better she looks!"

Yay, God!! :)

I told her that lots of people are praying for Kate and I'm sure that is why her chest tube output has slowed so dramatically.

8:40 AM Update - Tue.

Kate is busting out of PICU today. She is getting a test tube removed around 10AM and then will be moved to the regular floor. She is skipping the step-down unit because there weren't any beds available.

She is quite irked at me today. She didn't even look at me when I came in the room. I am a bit worried that she is mad because she thinks that I 'did' this to her. Please pray that her little heart will understand how much I love her and would never hurt her.

I was mistaken when I wrote yesterday that she had been taking a bag of fluid an hour a few days ago. It was 100cc's an hour and she was dumping 90-100cc's. She is now dumping about 50 cc's every EIGHT hours!

They want to get her up and moving around a bit today--which I'm sure she will hate because she cries when we move her just to change her diaper. At least she will be down to two chest tubes in a few hours.

I am very dizzy today, so I think I have a sinus infection. Grrrr... I am surrounded by antibiotics but can't get any for myself. Kinda like being adrift in the ocean with no water. :)

That's all our news this morning. She will get sedated to get the chest tube out, so will probably be pretty sleepy for a few hours after that. Oh...please keep praying for some poo. Poor baby.

Memorial Box Monday

I completely forgot it was Monday and time for a Memorial Box Monday post. If you want to know what that is, check here.

This will be short and sweet, but I am still amazed to find out that the Chinese doctor who did Kate's surgery, spent time here at Mott's Children's Hospital being trained.

Maybe I can find a heart with a Chinese flag on it to go in the box.

Personal stuff from Karin :)

I have been reading your comments and rather than respond to them in the comments section, I thought I would post. :)

Sandi...I had no idea you had taken this amazing picture of Kate when she first arrived at Hope. That picture has been cemented in my mind ever since I saw it on the LWB blog probably two years ago. I had no idea that someday I would be her Mommy. I have always wondered who took that photo!


Someone asked for specific prayer requests. Thank you! :) I am totally humbled that you would want to pray so earnestly for our family.
For Kate: pain control, chest tube drainage would stop, regain her strength and be able to eat
For Jeff, our other kids, his mom and sister at home: strength, kids will not miss Mommy too much, and that the household can be peaceful and run smoothly. Jeff has to travel for work next week, so that will be a challenge
For me: strength, sleep, that I will not get the sinus infection that I seem to be working toward (urgh) and that you would all keep writing to me because it helps to keep me sane! ;-) Also that I could be an encouragement to other families who are up here.

Kate will not remember today's dreadful procedure because they gave her a medicine that makes her forget everything. I asked them if they could give me some as well, but no luck there. :)

Yes, she had a fontan surgery. Normally, this surgery is done in three stages. To borrow a phrase from "A Christmas Story," "In an apparent breach of etiquette, Kate skipped the second stage surgery and went straight for the coup de gras of heart surgeries...the fontan." No triple dog dares or anything, though. We aren't sure why she skipped the second one, but are glad she was able to do so.

I can sit with my laptop next to her bed, so feel free to write me. It's not bothering me--in fact it helps me to know that I'm not alone up here.

9:00PM Update - Monday

Kate's swollen little hand

Kate has the chest tube blues.

Poor baby. She isn't on morphine, so her chest tubes are really hurting. She won't move and she won't let me hold her. If we move her even slightly, she moans or whimpers. Changing her diaper is like torture because we have to move her so much. I feel soooo bad for her. The new chest tube is on her right side, a few inches below her armpit, so now she cannot lay on her side. That was the side she liked,(of course). I am aching to hold her, but when I ask she shakes her head slightly, so I don't dare. Several nurses have told me that adult patients with chest tubes have told them that the pain is worse than a broken bone!! Kate has the pain equivalent of three broken bones in her chest, so no wonder she doesn't want to move. She is also still constipated. Can I ask you to pray for poo? :)

Medically, she is doing better. The big news of the day....drum roll please... We have heard these descriptions of her chest tube fluid output.
"Significantly decreased"
"Slowed down dramatically"
"Wow...really slowing down"
HOORAY!!! God is answering prayer because she was dumping so much fluid a few days ago that they were giving her a bag of fluid an hour. She would dump it as fast as it went into her. This morning, they weren't even replacing fluid anymore! AMAZING!

"I'm not at all happy about this 'cut my morphine' thing"

The plan is to move her tomorrow out of PICU. If all goes well, she will either move to the step-down unit, or to the regular floor. I know this is a good thing, but I am hesitant to move beyond the safety of the PICU. I also don't want to give up our wonderful private room with a window! :) We will most likely be in a double room when we get to the regular floor. There are a few private rooms, but not many.

She is getting one of her three chest tubes out in the morning. It's the one that pulls fluid out from around her heart. It hasn't drained anything much for the past two days, so it's coming out! Yay! The two chest tubes in her lungs are staying. She has spent most of her awake time glaring at all of us. Poor baby. She still isn't eating, but I did get her to drink some apple juice. She tried one bite of banana and gagged on it.


If looks could kill...

Please pray for baby Mason's family. They had a rough day today. He is doing well, but today was not a good day emotionally for Mommy and Daddy. They have a website set up, with a few pictures but haven't had time to put much on it. It will enable you see his precious little face, though. www.masonslater.com . Please leave a comment for his mommy and daddy and tell them I sent you (so they don't worry about where all you crazy people are coming from!). Thank you for letting God use you to bless this precious family.

2:15 Update - Monday

The procedure is done and the chest tube is in. Kate is still loopy. She has been uncomfortable today and this is the first time I have seen actual tears. Until now, it had been more of a wimper or a moan.

Getting her set up for the chest tube totally broke my heart. I tried to tell her that I was leaving but would come back and she started to cry. I asked if they could please sedate her before I left, so they agreed. She did her I'm-not-going-to-be-sedated-without-a-ton-of-drugs thing that she did in the cath lab. Every sound made her eyes fly open and when the doctors and nurse came in with their masks and surgical hats, she started sobbing, "Mama! Mama!" I told them the masks and hats were freaking her out, and they were kind enough to leave--except for the nurse, who took hers off. MORE sedative meds went into her IV. She continued to cry, "Mama! Mama!" until I thought my heart would break. I held her face and kept reassuring her that I would stay. She put her arm around my neck and tried to hold on, but she is just too weak. I stayed one inch from her face and tried to prevent her from looking at anyone or anything except for me. She continued to try to look out of the corner of her eyes so the doctor said..."Give her some more meds." FINALLY, she was almost out and I was able to pull back a little and watch for the rapid eye movements that signals that the meds have worked. At that point, they came in with straps and strapped her arms and legs to the bed. She was strapped down spread eagle.

My reaction to that was deep. I guess there is something so gut-wrenching about seeing her vulnerability. Her arms were stretched wide, totally exposing her chest. She could not protect herself in any way. My thoughts drifted to my Savior, and how He was willing to go to the cross and let Himself hang there, not only completely vulnerable, but also naked, just like Kate. I couldn't imagine what it must have been like for God to watch Jesus suffer so. I had to turn my baby over to kind doctors and nurses, but God had to watch His Son get spit on and beaten by the very ones He had come to rescue. That kind of love is unimaginable.

I walked out of the room and looked back through the window to see my precious Kate lying helpless on the bed, strapped down. My stomach turned over and fighting tears, I walked out the doors, wishing I could stay and hold her hand. They wouldn't let me stay because it was a sterile procedure. I'm glad it's over and I hope she will forgive me for 'letting' them do that to her. She seems a bit miffed at me today and won't make eye contact. Please pray that her little spirit can understand how much I love her and that I would NEVER allow anyone to hurt her needlessly.

God must feel like that, huh? He has to allow some hurts in our lives sometimes to keep us from harm. To keep Kate from this surgery would cause HARM to her, and so we have to let her hurt through it. Many times we do not understand why God allows us to hurt, but I believe that He is always FOR us and that everything He does is for our ultimate good.

8:45 AM Update - Monday

Last night, Kate's nurse was telling me about chest tubes. Sometimes kids need an extra one, or need one replaced. She said it is the only procedure in all of her years of nursing, that she can't stand to watch because it's 'violent.' They make an incision and have to put the tube between the ribs, cut through muscle and tissue, get tongs inside and stretch the incision open. We both shuddered and were glad that Kate had not needed a new one.

Until this morning.

Last night, one of her chest tubes came out too far and started taking in air. She now has a large air pocket in her left chest cavity. Yesterday she was moaning and pointing to her left chest--up near her shoulder. I told the nurse, but she seemed to think it was just pain from the chest tube itself. Now I think it was the air in her chest.

Poor baby. At noon, she will get the new chest tube. There had been hope that she would leave PICU today, but that has been put off until at least tomorrow.

Getting another chest x-ray to check on the air in her chest cavity

Overall, though, they are very encouraged by how well she is doing. Her chest tube fluid drainage has slowed a lot!! I know some of you are praying for that!! :) She is such a little trooper and lets them do whatever they need to do to her. She kinda falls apart a bit once she sees me, but I think it's just fine for her to complain to her Mama. If you can't complain to Mama, who CAN you complain to?! She doesn't do much except moan or fuss--no energy to have a full blown meltdown.

8:40PM Update - Sunday

Kate had a uneventful medical day today--thankfully. They stopped the morphine this morning and the last of her blood pressure medicine. They did have to give her some morphine and versed this afternoon, though because she was in pain. The morphine is making her constipated, which is causing much distress, so they have added something to her IV for that. Hopefully, something will pass tomorrow and she will feel better. She was crying this afternoon and moaning, "poo-poo." Poor baby!

I held her for a good part of the day. The nurse let me climb into the bed and put her head and shoulders on my lap. She LOVED it. It was the only way she would stop fussing. When it was time for dinner, my mom was there and told me to go downstairs and eat but Kate wanted me to stay. She reached her little arms up and when I bent down, she hugged me and didn't want to let go. Be still my heart!! She had just been given the morphine, so she fell asleep and then I was able to sneak out.

She had lots of visitors today after church! She was so tired, though, that she slept right through all of them. That ended up being a blessing because when she was awake today she was pretty uncomfortable and crying. Jillian and Chloe decorated her room with signs that all four of the girls had made--plus a few from Jillian's friends. Now Kate has a lot of colorful things to look at when she's awake.

Grandma loves on Kate for awhile


She continues to improve a bit each day, so thank you all for your prayers. They are working!

Oh..she's awake...gotta go! :)

Mommy update

Thank you all for asking about me. :) I am doing just fine...my cold is much better and getting better every day. The earplugs worked--and I didn't even hear snorer dude last night. I think he might have gone home.

I actually slept well last night and think I could have slept a few more hours. I didn't get into Kate's room until almost 9AM. Yikes! Poor baby!

I really don't mind doing the hospital thing, and I believe that God has gifted me in that area. I tend to be a medical geek and am fascinated by everything they do. The blood, goo, and instruments of torture don't gross me out. I can remember most of the stuff they tell me, so I am learning to take care of Kate's medical needs and enjoy fussing over her. Even though they are doing some yucky procedures on my Katie-bug, I know that everything they are doing is keeping her alive and helping her get better. So don't worry about me...but thank you for praying!! I think that the hardest part physically on us will be when she is moved out of PICU and to a regular room. It is expected that a parent is with the child all, or most of the time, 24 hours a day. Here in PICU, I can go grab a sandwich and know that she will be in good hands while I'm gone. Over on the floor...not so much. My big weakness is not being able to function on less than 6-7 hours of sleep per night, so that could become an issue once she is moved out of PICU.

Jeff has the harder job right now, I think, because he is spinning lots of plates. So if you want to focus your prayers on him, his mom and sister, and the kids at home, that would be great! :) Molly has been running a fever yesterday and today (102), so we are trying to figure out if she has a virus, or if her cold from last week has morphed into a sinus infection. My sister-in-law-, Penny, is quite experienced with sinus infections, so I know she will handle everything well. :)

11:20AM Update - Sunday

Kate had a very good night and slept peacefully. They were able to take her off morphine!! She is only on blood pressure medication and they are turning that off this AM to see how she does. Her chest tubes are draining a bit less, so that is good. She tolerated having liquid food through the tube in her nose, so they are going to try giving her some real food--like pudding!! Yeah! Hopefully she will do well with that.

She was awake when I came in this morning and not too happy. She is not in pain, except when she moves. The chest tubes are quite painful, I am told. She is itching at her incision site, and the tape holding her chest tubes and wires in place is bothering her. So, although her condition is much improved, her discomfort level has gone up.

Kate reached for me when I came in (wah!) and the nurse said I could climb onto the bed, so I was able to sit in bed and be her recliner for about an hour. Soooo precious. She gets quite mad when we tell her she cannot rip her central line out, nor can she remove the NG tube in her nose. She had enough energy to kick her feet and have a bit of temper--for which I don't blame her! She snuggled into me, though, and it seemed to comfort her a lot. She tried sitting up for a little while in my arms and was able to do that for a few minutes before needing to lie back down. Panda Bear has been a comfort to her as well. :) She sleeping now, so I snuck off the bed to update the blog.

Jeff and some of the kids went to church this morning and then will come to visit Kate this afternoon. Grandma and Grandpa are coming today, as well as some sweet friends from church. Last night, some other wonderful friends came and took me out to dinner in Ann Arbor. The nurse made me go. :) It was nice to get out and breathe some fresh air. We are so blessed to have family and friends helping, praying, and emailing. You are such a blessing to us!!

The Day of the Four Unhappinesses

Giving and getting some love from her panda bear

This post would be written by Kate if she was well enough to do so.

"Today, I had four yucky things happen, but I am trying to be brave. The first thing was that around 4AM, the surgeon had to put four more stitches in my chest because it was leaking fluid, and my Mommy wasn't even here. (She didn't even know about it until the afternoon.) A little while after my Mommy got here this morning, my incision was still leaking. The doctor had to do some yucky thing where she opened up my incision and stuck a little sponge and a vaccuum in it.

Then, I had blood coming out of my wrist, so they stuck more needles in me to stitch my IV down to my hand.

Then, it was time to replace the yucky tube in my nose and they pushed a new one down into my stomach when I was awake. For awhile I had both tubes in my nose.


I guess I had some liver issues today because my eyes turned yellow. I'm not kidding. I was like Scott Farkus in the Christmas story...yellow eyes! Ewww... (Would that make my mom my little toady?)

Mommy and my night nurse gave me a bath, which I hated, but now I must admit that my hair is clean and I feel better. Mommy hugged me for awhile and I slept on her until her back started creaking. She says she is getting kinda old but I love her anyway.

Thank you very, very much for praying for me! My Mommy said that there are people all over the US, and some from Canada, Australia, the UK, China and Japan who are praying for me. She wrote down all the places for me. I am blessed because some other kids in the world don't have a Mommy and a Daddy to sit with them when they have surgery. Even though I don't feel very good, my Mommy says that I will heal and that the surgery is a good thing. She said that some kids never get a chance to have this kind of surgery. I know there are people praying for the orphans though, 'cause I know we pray for them at our house. I bet you do, too."
Love,
Kate

"PS: Please keep praying for baby Mason. He is still very sick and needs a lot of prayers."

3:15 PM update - Sat.

Poor Katie-bug has had a rough day. This morning, shortly after the wound vac procedure, her wrist IV started leaking blood. They use this IV only for drawing blood--which is done about every 4 hours. It keeps them from having to poke her with a needle each time.

They attempted to fix it with steri-stitches and gave her some blood platelets in her IV--hoping that would thicken her blood a bit and stop the seepage.

Jeff and the girls came. Molly and SaraGrace stayed outside in the courtyard with me and played in the sunshine. It's a beautiful day here. Jeff said when he got up to Kate's room, she was awake and reached her arms up to him. He bent in to hug her and she hugged him back! Luck-eeeeee.


While they were gone, my cell phone rang and it was the nurse asking me to come right away. Her IV had continued to seep and they needed to put a stitch in her wrist to help it stay in. They wanted me to come and help. Jeff had just left the room and was on his way down. As soon as he got back, I dashed upstairs. Poor Kate had to get poked and stitched on the inside of her wrist. Ugh... She is such a little trooper. She cried, but she listened when we told her what the doctor was doing and that it wouldn't take long. It seems to be holding without seeping now.

I was able to lie down on the bed with her for awhile. She keeps asking for a bottle and it's breaking my heart because she can't have one.

Please pray for baby Mason

I briefly saw Mason's mommy today and she looked pale and exhausted. Baby Mason is stable right now, but he had a cardiac arrest last night. It was his second one. Please pray that I will have an opportunity to love on his Mommy some time today.

A few more things....

I forgot to ask for prayer for Jeff, his mom and sister. They are holding down the fort at home and it's a big task. Jeff sounds very tired and stressed this morning. Molly woke up with a low grade fever, each girl got a 'there is lice in your child's classroom' notes home this week, and just a few other normal frustrations. They are normal, but on top of Kate, well....he is just stressed!! He's a very hands-on dad, but it's different being Mr. Mom.

His mom and sister are a HUGE help. I don't know what we would do without them!! We are so grateful that they are there!

Also...one other thing to pray for Kate. She has been very nauseous this morning. She is still on an NG tube, so it sucks everything out of her stomach. It's been doing a good job, but this morning she started gagging and threw up bile into my hand. She had another episode of gagging, and it was just so pitiful.

10:30 Update - Sat.

Kate is holding steady and was able to get her pacemaker turned off! Her heart has a rhythm now. It's a little too slow, but it's fast enough to keep her going.

She also had gotten rid of her oxygen tube for awhile. Her blood oxygen levels keep dipping a bit low (desat), but they are letting her ride it out as her body gets used to breathing regular air.

She had one setback during the night. Although the chest tube that drains fluid from around her heart is working, there was still too much fluid building there. It started to ooze out of her wound. When I got here this morning, they told me they were doing a procedure called a wound vac. They let me stay so that I could help hold her down, talk to her and stroke her hair while the doctor did it. They had to open the bottom inch of her wound, spread it open a bit, and put a small sponge in it. They then attached the vaccuum over it and taped it down. It will suck fluid for the next few days and then they will re-evaluate whether she will continue to need it. They had to give her sedation of course, so now she is back on the oxygen. She was very brave! She has hardly said a word for days, but when they were working on her she said, 'Watcha gonna do to me?" They told her, and she just closed her eyes. The nurse said that I can get in bed with her if I want, so I think I will. :)

Sooo...mostly good news, with one fixable setback. Her big sisters are coming to see her today, so maybe that will distract her for awhile.

Last night the ear plugs worked! Although...one of them was missing when I woke up this morning. Hmmm.....I hope I didn't eat it in my sleep!

10:15 Update - Friday

Holding hands with Daddy

Kate has turned a corner today!!!!!!!!!!!!!!!!!!! She is doing so much better! They have started weaning her from her meds. Since her morphine was cut in half, the nurse thinks she will be much more awake tomorrow. She was rather grumpy any time she woke up today, so I'm not sure if tomorrow will be very pleasant. Kate's big sisters are coming to visit tomorrow, though, so that should help.

They have not begun to feed her by mouth yet, but since they are weaning her meds, she should be able to avoid having to get a third port (the IV line in her neck), which would have necessitated her going back on the ventilator.

She has no signs of fever/infection, and her blood pressure has held fairly steady as they have started backing her off the blood pressure meds. Yay!!


Sleepy Kate is having a seriously bad hair day


They do a lot of neat things for kids here, one of which is making a sign with their names on it. Isn't it cute?


The nurse had me give Kate a bath tonight. She didn't enjoy it AT ALL, so neither did I. It was rather challenging working around the tubes and wires. Within an hour, one of her chest tubes leaked yellow fluid all over her and the bed. Poor baby is going to have to get her bed changed again.

And last but not least, my brother, Mark, stopped by to see Kate and brought me this gift...


Thank you, Mark, because it's only 10:30 and snorer dude is at it again.
Nighty-night!

2:40 PM Update - Fri.

Kate's nurse today asked me if I wanted to hold her! I jumped at the chance. :) After lunch, she got another nurse to help her get all of Kate's wires transferred over to my arms while I sat in a rocking chair. Sweet moment!! I loved it!

Unfortunately, it didn't last very long. Kate dumped a ton of fluids and combined with the small dose of sedative they gave her, it caused her blood pressure to bottom out. The nurse got an intense look on her face and said, "We have to get her back in bed NOW." I looked at the monitor and her blood pressure was around 37/29. Several doctors came quickly into the room and the nurses started pumping her with fluids. It was very tense while we waited for the fluids to raise her blood pressure and while I listened to the doctors giving instructions on which medicines to put into her. I tried to keep it together but wow...it was very frightening. My friend, Karla, was here and quickly stepped back out of the way, watching.

After the episode was over, I looked at Karla and said, 'Am I a wuss, or was that frightening?" She gave me a look that said, 'Uh..yeah, it was frightening!"

Kate is okay now, but I won't be holding her any more today. It was so wonderful to get her in my arms for a few minutes.

She is slowly improving, so that is good news. It's just a slow process. They did not try to get an IV into her, so she was spared that trauma. She hasn't eaten anything by mouth, though, so I'm not sure what they plan to do about getting her lipids (fats) into her body. I'll update you when I hear something.

Adoption Stories

I have had a request to share our adoption stories, so I'm going to provide some links to former blog posts so you can see how Jake, Zoey and Kate, (the Tireless Trio) came to be members of our family.

Kate: http://jacobsjourneyhome.blogspot.com/2008/11/double-happiness.html

Zoey: http://jacobsjourneyhome.blogspot.com/2008/02/zoey-faiths-story.html

Jake: For some reason, I can't get the link to work. If you go over to the side bar under archives on the blog, click on 2007. Scroll to the bottom of the page and click on 'older posts.' Jake's story is the very first story ever written on this blog (hence the blog address, Jacob's Journey Home). ha

Our adoption stories kind of play out over weeks and months, so if you want to read more than just the original 'call to adopt' you can go to archives and click on the year or month. Our adoption trip to get Zoey and Kate was in Jan. 2009, so you can read about that by clicking "January" in the archive section. Jake's adoption trip was in May 2008.

If you have any questions...fire away! Kate is still sleeping, so I'm sitting by her bed with my laptop. :) I'm excited to know that some of you want to read about the miraculous ways that God has brought our children out of China and Guatemala.