Home and doing great!

Not a very good snapshot, but this is Mahaela all set free from tubes, wires, lines, etc. Here she is roaming the halls just before we left the hospital. She has been home a week and a half and hasn't missed a beat. She is playing outside, riding her trike, running around...everything but the trampoline!
We saw the nurse practitioner last Monday, because our surgeon had an emergency case. M. had a great chest xray. We dropped her lasix from 3 to 2 doses a day. We had blood work and chest xray again yesterday (Monday) and it was still all clear and her lab work looked better. I thought it might show some electrolytes off a bit because of the lasix, but things were actually better than before. She was getting a little sunken in around her eyes--that dehydrated look to her. We were able to drop her lasix down to just once a day now. There is something about meds that just make you feel like you have a chronic illness...and she does...It's just that before surgery she was on just a baby aspirin--not even a prescription to deal with.
Now she is on baby aspirin--for her lifetime, Enalapril (vasotec, a heart drug which we hope she is weaned from, but there is a debate about it's protective benefits), amoxicillin, lasix, prevacid (which I also stopped today). She is so good about taking them--doesn't like lasix.
I don't know if I mentioned in previous posts, but she does not have a spleen. So she needs a prophylactic antibiotic for a couple years or perhaps much longer. She also needs a few more vaccines when she has recovered. We had a very thorough infectious disease doctor consult with us while she was in the hospital. He was great and gave us many articles from the literature on tests to be done on internationally adopted children as well as how to handle asplenic children. She will just always be at high risk for getting the really bad bugs...the ones that are resistent to amoxicillin!
We saw the pediatrician last week also. He is impressed with how well she looks. We will see the surgeon one more time for him to clear us and then we will see the cardiologist in mid may for an echo and check up. From that point on, the cardiologist will manage her care.
We were able to all go to church on Easter Sunday, together. We all sat together. Mahaela is doing better at sitting and whispering, but she did get taken out 2 times...it was long, so that wasn't so bad. She saw her Sunday School teacher that she really connects with and got to give her hugs.
The crazy tale spin of end of school stuff is upon us. In just a month the pool will be open and it will be hot--it's hard to believe. Mahaela will be all healed up and ready to play in that pool that she doesn't even know is out back--I wonder what she thinks it is??
So, that's the latest, greatest news. Now we move on to the crazy, boring-to-anyone-else, lives that we live.

A great adoption story!

You have to read this adoption story. It will always be a favorite of mine for several reasons. I don't personally know Michelle, but she is a friend of my two nieces, I believe they graduated from high school together, but I don't think I ever verified that. I do know they all connect on some amazing Girl's Night Outs. Our church "launched" an Orphan Care Ministry named Called2Care with an evening event with guest speakers Kelly Putty from Ordinary Hero and Jami Kaeb who is just launching a ministry with Lifesong called The Forgotten Initiative (find it on facebook until their website is launched.) It was a great evening--hearts were touched, people were spurred to action, and God was glorified. We wanted God to have his way with the evening and we believe that He did. Michelle's story is an awesome example of what God can and did do. Adoption usually requires a lot of waiting, money, patience (at least International adoption), but it doesn't have to...I love Michelle's story because it shows what God can do with just a "Yes, Lord!"

So...my nieces invited Michelle to the event and she and her husband were able to come.

Here is her story. Warning: Goosebump inducing!! (and you might need a tissue!)

In case you can't click on the above link, go to her blog: www.michellesblog6@blogspot.com.

Read her entry for April 18th.
I have made links to Kelly and Jami's blogs. They are wonderful to read and are a great encouragement. You might want to put them on your blog list! (Not "might"--you absolutely do!)

We Are Home

Praise the Lord--we are HOME!

Our morning started at 5 am with a chest xray...as it has for the past 18 days! Her xray looked great. They usually take blood from her central line after that for lab work, but this am, they had trouble getting blood from the line. 3-4 nurses tried before they could get blood. The last nurse had to pull back on the line a bit (which is stitched to her skin) and that caused some screaming. By then we were all really awake! Her labs looked good also, so we knew it was GO TIME!

Bill worked in the Emergency Department last night, so he came up after his shift. Mahaela was cut free from everything, so she was practically roaming the halls. The doctors came in to see her around 8 am and all her paperwork was ready to go. We left the hospital about 9 am!

Such a great feeling to just be in our home, together...making messes!

(Grandmas took care of my kids and house for 2 1/2 weeks and there are no messes. We are home 3 hours and it is like a tornado blew through...I just don't have what it takes to keep it all together.)

To look at Mahaela, you wouldn't know anything has happened to her. She has energy--at least the energy to fight with her siblings. We are so glad that she has healed so well. As Bill said, it felt really good leaving the hospital. It wasn't the 7 days that we expected, but it could have been 7 weeks, or worse.

Thanks to so many for praying. We couldn't have made it without those prayers. We were completely held up.

Thank you, Jesus!

It's Friday, Friday..

Have you heard the Youtube song? Well, we're singing it here! It's gonna be a great day and tomorrow is Saturday!! Right now we are waiting to eat until the surgeon comes to see Mahaela. Her chest tube has pulled out far enough that they want to just remove it today--yes! It's at risk for just falling out which could be bad. It's no longer able to drain anyway in the position that it is in, so if she would start to accumulate fluid it would require another chest tube. Her chest xray looks great. So the plan is to remove the chest tube today, start eating, watch her, have a clear xray tomorrow, pull the central line and go HOME. I don't care what time we leave here tomorrow, but I would like us to all be in our OWN BEDS tomorrow night. This is day 18 in the ICU. We have received awesome care. We have had a great majority of the nurses, so we feel as though we know them a little and they all know Mahaela. We have said many times how different this would have been in the old ICU. This new Children's Hospital just opened last summer. It is a great facility that has been completely family friendly. The other unit didn't even have a bathroom for families to use--you had to walk out of the unit and use the waiting room bathrooms. You had to sleep sitting in a chair, that they say didn't even fit in the room, or sleep in the waiting room. Here, I have had a very accomodating home away from home. OSF St. Francis can be proud. While we were in Bulgaria, I had brochures and photos of this new facility. We had just toured it. I was able to show her orphanage and physician the great facility where Mahaela would receive her care. Pray with us that going home will be our reality tomorrow. God has blessed us with many good days of Mahaela feeling great and content, without pain. We are so thankful.

Almost to the end

Mahaela is making great strides. Her chest tube is no longer draining. She is regaining strength and coordination. A few days ago she was holding on to us very hard to walk and was a bit uncoordinated. She has much more agility now. She is just ready for them to cut her loose. Daddy did so much with her today that she zonked out sitting in the chair around 7pm. She went to the activity room twice, walked three times, sat on the sofa in the room about 2 hours and was just very active today. We are praying that Saturday we will get to go home.

God has been so merciful to us in caring for Mahaela and providing us with wonderful friends and family who have carried this burden with us. Thank you all for praying and helping in very tangible ways.

Baby Mahaela

One of Mahaela's caregivers must have been thinking about Mahaela today because she sent me 4 new photos. The above photo was taken on her 2nd birthday, I believe. We actually have several of her on her birthday, and this is the outfit she was wearing.

I think this photo is taken a bit earlier than 2 years, maybe 18 months? She seems like she is being a little bit supported and most children are not walking before 18 months. I believe Mahaela was 19 months. The caregiver is her favorie. She was the head of the nurses. I always have wondered how much of an active role she played in caring for Mahaela. She seems to be "hands-on" in this photo. Mahaela definitely remembers her a lot. About a month ago, Mahaela said her name in the store and got a bit excited when she thought she may have seen her. It was just a woman with similar hair. It was kind of sad to think that she still thinks about her and most probably misses her. I'm so glad for the fond memory that she has of her, but I hate the idea that she could be sad about it, deep down.

I know her caregivers are just hoping that Mahaela recovers quickly. I'm so happy that I am at her bedside. I know they would have loved her through it, but she needs a mommy and a daddy.

Well, since she is sleeping so soundly, I will take advantage and get some sleep also. Praying these next few days go by quickly.

What a difference a day can make

I think these videos capture what a great day Mahaela had in her recovery. Here she is getting ready to walk and telling us she wasn't going to cry (like she did the first time she walked a few days ago.) She was feeling so much better today. She sat in the chair for hours, walked the halls, rode her bike, and even had a poop (after suppositories and days of medication that finally worked). It was a good day.

Below: Mahaela ride's her new bike that Bill and the kids brought up for her last night. She was really excited to get to sit on it and ride it.

Called to Care Kickoff and Mahaela update

The above video is taken during the kick-off for my church's new orphan care ministry. Our ministry is named Called 2 Care. It was a great evening with Kelly Putty, founder of Ordinary Hero http://www.ordinaryhero.org/ out of Nashville. Also Jami Kaeb from Bloomington, IL was able to share her new ministry called The Forgotten Initiative--they are partnering with LifeSong. (Find the Forgotten Initiative on Facebook--the website will be up very shortly.) Bill and I were able to both be there thanks to grandma and grandpa babysitting Mahaela at the hospital. It was a really great evening. God is doing something amazing. Orphan's lives will be changed because of this evening. I know of two families who felt called to adopt and are saying yes because of this evening. I encourage you all to stir the pot at your churches with a ministry such as this. Thanks for continuing to pray for Mahaela. She is getting better, praise the Lord! Only 30ml out of the chest tube and her xray looks pretty good. We are doing everything the same for another day, before they starting weaning meds, introducing fluids/food.

Glimmer of Hope

This am Mahaela had a total of 90ml out of her chest tube for the previous 24 hours and a clearer xray. I am tentative, but encouraged. She had very little output throughout today. I am praying that this is officially a slow down in her drainage and not that her chest tube is plugging up again. If she has a good looking xray in the am and still very little drainage out, we may be on the road to fixing this problem and healing. They will then start to wean her off one of her medications and then feed her...all the while hoping that she does not begin to drain again. Praying Hard!!! She walked twice already today, and had much better strength and mobility. After very little sleep at all during the night (and no nap yesterday) and a grumpy attitude in the am, she perked up by mid morning and was happy girl. Thanks for praying and keep it up! Prayers are being answered.

Happy Girl

Today was a good day for Mahaela. Her mood took a 180 from what it has been the last few days. She has been extremely irritable, grumpy, not nice to anyone. She had been sleeping a lot also. Today she was wired! She was happy and animated and energetic. She had one of her meds removed today and that is the only thing I can attribute her mood swing to. For the first time since being in the hospital, she took not just one walk, but 3 walks! We have always wanted her to get up for her second walk, but something always sabotages it. Today, it worked out great. It really helped at change of shift that the day and night nurse both walked her together--that is one of the problems, it just takes 3-4 people to walk her with all her lines and monitors in tow. The third walk today was a fun one. The nurses have really gone above and beyond to make them fun for Mahaela and cheer her on. Yesterday her nurse gave suckers to other nurses sitting at their stations and as we made our way around, they would give her a sucker. Tonight was even better. We went on an Easter Egg hunt! The night nurse, Kim, had brought filled eggs and put them all around the unit to be found as we walked around. The picture above is a happy Mahaela opening her eggs--ring pops, and lots of bling-necklaces, bracelets, and rings. Kim gets an A+!!! OK...now for the downer...Mahaela's chest tube drained 260ml for the past 24 hours--more than any other 24 hour total. I don't understand why it is not slowing down. Her chest xray looked better this am, because what is accumulating in her lungs is draining out. The chest tube is not clogged and is working as it should. We just pray and hope that it will stop draining. M. is still NPO and is tolerating it amazingly well. She did catch Bill with butter on his face after eating a roll and completely examined his mouth and teeth, trying to figure out what he had gotten into...I think she was a bit jealous...oops!

Hospital Day 12??

I'm sorry to say, that today looked a lot like yesterday as far as healing is concerned. Her chest tube did not put out any drainage during the night. Dr. Fortuna flushed it, but was deliberate in leaving a bit of fluid still in her chest to avoid the tube being "sucked" into her chest wall. She tolerated getting the tube flushed very well. The tube drained throughout the day, which is good that it was evident that the clog was taken care of, but it continues to drain. I will be anxious to hear the 24 hour total in the morning. It's not slowing too much though. I have to say, I know prayers are working. Mahaela has been NPO for a few days and has only asked for food a couple times a day. She seems ok with our explanation and doesn't beg. So glad that God is taking care of her hunger and keeping her satisfied. She is also sleeping a lot and seems very content to just rest in bed. She has been taking one walk in the morning. I always want her to get in another walk, but it takes so much work and 3 people to walk her...it's just hard to squeeze it in again. God is showing his mercy to us and Mahaela. It seems that she could just be going crazy with hunger and laying in a bed, but she is calm, quiet, sleepy. God is good. I'm exhausted tonight...just an accumulation of the week, I guess. But I am completely refreshed by the blessing I received at an orphan care event at our church. So proud of my nieces and friends and faithful servants who contributed to a wonderful night. God be glorified. Children will come to Christ because of a seed that was planted in a person's heart tonight, I just know it.

Praying for Mercy

M. had a good night. Hadn't needed morphine since yesterday am. She slept alot yesterday. She had a pretty good night and walked this am. Her chest xray showed a build up of fluid again. Zero drained from the chest tube during the night. So they assumed it was clogged. They just flushed it and got 80ml back. That means she had little progress in the drainage decreasing. She had immediate pain when her chest was drained, so they put back a little fluid with some numbing/Marcaine to give her relief...it must have sucked the tube next to her pleural wall. Discouraged. I am praying for mercy for our little girl. She has done so well with not being able to eat or drink for 2 days now, but without success.

Signs of Progress

Mahaela's doctor was happy with the progress she seems to be making while not eating/drinking (NPO). She had less drainage out of the chest tube. He said we would continue the NPO for 3 days...I really don't know if that meant 3 more days or 3 days total. After that, we would then introduce liquids and food again, hoping that the tube would not have any increase in drainage. If the drainage doesn't increase after eating a normal, low fat diet, then they will pull the tube and she will go home. He explained it so matter of fact and simply. He said she could possibly go home in 5 days...do I believe him??? Not really. But God can do it. He can stop this drainage. I know he will and we will just gain what He wants us to learn in the waiting. M. had less pain today. She required morphine once in the night and once in the late morning. She has slept a lot today...so much so that I'm not sure what our night will look like. She walked just once today. I was hopeful a couple hours ago that we could walk again since she has had good naps, but about the time I said it, she was asleep again. I think the extra sleep has made it easier for us all to tolerate her not being able to eat. She has been very irritable and wanted little to do with me today. I don't blame her at all for feeling lousy and fed up with it all. We are praying for more progress tomorrow...and then the next day...and the next day...and the next day.

Getting Aggressive

Today was a day of little change. It was similar to yesterday in her activity, pain, chest tube output, and xray. Nothing is worse, but persistent. Our surgeon rounded this evening and we had a little consult with him explaining what the next approach would be. We worked really hard at being no/low fat the past few day. When I say low fat, I mean 1 gram of fat for the day. He told us this am to go no fat. I called the dietician. I didn't know the fat content of a few things and the menu has very few no fat options. The dietitian believed it nearly impossible. Cream of wheat has 0.25 fat grams per serving...and she only eats about 1/3 of it. The fruit cup has 0.28 fat. The fat free ranch dressing for her carrot sticks has 0.48 fat grams in the whole packet. Her drainage was on track to still be 200ml in 24 hours. Dr. Fortuna (our most awesome surgeon) said we need to keep her NPO=nothing by mouth for a day or more to get the fluids accumulation in her lung to stop. I think he planned on doing it tomorrow, but as we were talking we all decided to start her at that moment. She had a sucker in her hand and I asked who was going to take that from her... :( super sad face! He agreed, out of sheer sympathy to allow her to have suckers and ice chips. But even that will have its affect on her fluid production. Lymph drainage is a crazy, complex thing. So tonight began the begging for a drink and to eat. She asked for a drink and tomatoes! Tomatoes! We have spent days encouraging her to eat and now all we say is not now! This is going to be incredibly tough. I'm too exhausted to even think past tomorrow right now...if it works then "this" and if it doesn't, then "this." We are going to be in here a while. But Bill kept repeating, "we are going to get through this." And we will! This is a problem that is complicated to fix, but it is not life-threatening. For that we are so thankful. Bill knows all kinds of kids that have poor outcomes and he was just going over in his head all those bad scenarios and how that is not Mahaela's situation. We thank God! She is a strong little girl with a fighter, feisty personality. She will get through this. Thank you all for your prayers, encouragement, and scripture. We need it. I have ICU brain. There is much time, but my brain can't do much else than think about how she is doing. I feel completely distracted, scatter brained, unable to make decisions, just completely indecisive. I guess it's the effect of my focus being mostly on Mahaela or pulled to what I should/would/could be doing for my other kids. They are having to fight through all of this also and it's not easy for them. The night slips away quickly, so I am going to sleep...

It was a wind out of my sails kind of day!

Mahaela had an unpleasant day. She suffered with the pain of her chest tube. They sedated her this am to pull it out a few centimeters to see if the end of the tube would cause less irritation to her lung. It didn't seem to have any immediate effect. Her pain waxed and waned throughout the day and she required some good narcotics to give her brief periods of pain relief. She did walk today and that was a sight to behold--head bent sharply to her right shoulder because of the pain in that shoulder/chest and completely bent at the waist holding our hands as we walk backwards and she shuffles forward. It was pretty awful. For the last two days, she has sat in the chair quite a bit, but has only gotten in one walk each day. She should be walking more, but both days we all agree that she is just too exhausted to make the second walk. This afternoon, they injected her chest tube with numbing medication to see if that would relieve the pain. I'm not convinced that helped too much either. This evening they started her on an IV med (that she was also on after surgery) that has some analgesic and sedative properties. They say in small doses that it just takes the edge off without sedating them. At the dose she is at, she seems fairly sedated. It is now 12:30 am and she has been sleeping since 7 pm. She crashed immediately after eating and getting back into bed. She has been eating fairly well today. She is on a low/no fat diet. She is to eat as little fat as possible--1-5 grams/day. That is really difficult for anyone to do...let alone a child! It is difficult to eat enough calories with a no fat diet, so they started her on TPN through her IV. It is nutrition supplement, IV. There is something going on with her lung that is not that unheard of, but on the rarer side--Chylothorax. It is difficult to explain, but her lymph system in her chest has a duct that is clogged or traumatized from the surgery in some way and it is dumping this high fat drainage into her lung. That is why she had so much drainage last evening and throughout today. So they try to control it by giving Lasix to get rid of any extra fluids and limiting her intake of fat. She will be no fat for about 6 weeks. They hope these things together will make the drainage slow enough to pull the tube. I think her tube put out about 200+ ml of fluid this past day. At this flow rate, the tube must stay...and will stay until the drainage stops. Bill read that a range that these kids have chest tubes is 8-42 days...no one is speculating anymore. Our nurse today said she would be in the hospital another week, at least (at least!!!!). That's when I completely deflated! As Bill reminded me tonight that we have the tools to deal and cope with this. God has given us those tools and we are in for the long haul. The Lord is with us and holding us up and He is healing Mahaela in His time. Maybe we are here to share her story to a few more people. I love the opportunity to share more of the wonderful story of how God gave her to us and what a miracle she is in our lives. We are so blessed.

Praying for Healing

Tonight Mahaela cried out in pain as if she had been stabbed in the chest. Her chest tube had just started draining more in a few moments than it had drained in a few days total. It must have shifted where the chest tube was positioned in her chest. It was so sudden and severe. I had that completely helpless feeling. I couldn't take away her pain fast enough. She hadn't slept since very early in the morning, so she was exhausted. Once the pain subsided enough after Motrin, Benadryl, and a narcotic, she finally fell asleep. Grandma and Grandpa Kincaid were there and as mom said, it just confirms that she is still a little girl recovering from a major surgery--she is still sick. And that she still needs prayer. Earlier today she walked and rode her bike, so she did have great moments today. She started her day off with this same severe pain and we had to wait for the drugs to kick in. The unfortunate thing was that her chest xray looked worse than yesterday with more build up of fluid on the right side, so the chest tube did not get pulled. Now the tube is draining a lot and will most probably not get pulled tomorrow either. As her surgeon said today, she is acting like a Fontan patient (Fontan is the name of the procedure) and viewed as a Fontan patient and not on the fast track. In other words...these issues happen with Fontans and we shouldn't really expect different from Mahaela (although everyone was hopeful in the beginning that she was on the fast track to discharge, without complications.) Mahaela needs prayer for rest, tolerance for exercise, decreased drainage from chest tube and improved/normal chest xray. Her nurses are all so sweet. She is wowing them all with her personality...you just can't help but love her...I'm so proud of her and amazed by her ability to connect with so many people. As one of her nurses said, "You can't help but smile when you walk in her room."

Making Improvements

This is not the chubby little cherub face that I am used to seeing! (her hair has french braids that one of the nurses did for her. Reminds me of some hairdos that they would do in Bulgaria on her)

Mahaela is making some improvements. Her chest xray looked better this am, so she did not need another chest tube put into her left lung. The right one is barely draining, so we are hoping the worst of that problem is over. They will leave the chest tube for a couple days to make sure. She ate a bit today and took some fluids. We really tried to get her to drink and she did ok.

Everything else is looking good on her and they continue to wean her off the oxygen. She is still on the high flow nasal cannula, but they are decreasing it slowly. Tonight she is speaking and interacting with others more.

The kids visited tonight and Lindsey thought she looked scary. Aubrey thought she looked better than last night. We are praying that she does not develop any more lung issues and no infections. She wants to go home with the kids and ride her new big wheel that they bought her tonight. She's gonna love it.

Here she is getting her hair "washed" in the special shampoo cap. She didn't care for it too much!

A few photos from Thursday 3/31

Yep, her world is turned sideways for a little bit...

But soon she'll be back to squinty smiles! These were a couple photos from yesterday...she always attempts to flash a smile for the camera. She would not have been able to give this smile today. The kids couldn't believe how different she looks--definitely not our chunky-monkey girl! (and, by the way, I don't know why the photo turns or how to correct it??)

A Chest Tube

After about 36 hours of decline in Mahaela's breathing, they inserted a chest tube on her right side. She was just listless today. Nothing could make her smile or even talk. She was just exhausted and lousy feeling. I kept saying she just looked completely depressed.
After a good try with the lasix and getting a lot of fluid out of her, her xray looked even worse this am. So this afternoon she had a chest tube inserted that drained out 370 ml (1000 ml=1 liter). That is a lot of fluid in the right chest of a little girl!
She was sedated and had the tube inserted right at her bedside. She did ok, with one scary looking spell--blue, o2 sats in the 40s, not breathing, needed her airway opened, got bagged. It was quick, and she came around quickly. She is in such good hands, I just wasn't worried (yet.) Daddy was right there to help her and I was holding her foot, praying for my little sweetie. She woke up after a while with pain and was given morphine--a big dose, according to Bill. So she is still sleeping. Her breathing has slowed a lot--to near normal at the moment, and her o2 sat is up--but she is on high flow oxygen still. She had an echo earlier to make sure that none of her symptoms were cardiac related and it looked good.

We are praying that she continues to improve as she is able to get rid of this fluid around her right lung. I am praying that the left side improves or we will do the same again tomorrow with a left chest tube.
She is being amazing as far as being so patient and brave. She looks so sad which is just heartbreaking. She is very dehydrated (on purpose to get rid of fluids) which makes her eyes very sunken looking. Just a day ago she was all puffy, swollen face, with sausage fingers and toes.
I am so grateful for all our friends and family who are holding her up in prayer. One thing I know for sure is that Jesus is with her. Jesus has my little girl in His big, loving hands...and I am not afraid.