Expect the worst...

I've always been one to expect the worst. Then I make contingency plans based on what might happen. It helps to keep me from stressing.

So yesterday we took a road trip to Guatemala City to see a cardiologist that was recommended to me by a friend. The original cardiologist and nephrologist that saw her, had written a note in her file that said she has a syndrome (unspecified), there is nothing left to do for her, and to take her home to care for BECAUSE SHE WILL DIE AT ANY MINUTE. It is in capital letters in the note.

So I accepted it. She is severely malnourished, has this debilitating heart condition (not specified), her kidneys are messed up. There was no room for hope. The family is very poor, they don't speak Spanish (just their Mayan language), so even though they were being seen at a public hospital, they weren't going to do anything for them.  Maybe it is because it was a public hospital they would do nothing. These people are poor. Why would the hospital want to spend money on them? I still get angry with the racism I encounter here towards the indigenous people. I had heard many, many stories, but am now experiencing it first hand.

Enter, me.

I accepted that she was going to die, but knew she didn't have to die in discomfort. We can manage meds, and do other treatments. So I made an appointment with a new doctor.

We went in, weighed her, checked vitals, then took her for an echo. I was getting nervous. I had heard this was a very compassionate doctor, and a very good cardiologist, but even so I was nervous. My legs were actually feeling weak. I was afraid he would write her off too, and not want to manage her treatment. After the echo we waited. And waited. And waited. Marcy did really good, even though she hardly slept for most of the day and it was now 4 in the afternoon.

Finally the dr. called me into his office. I had prayed earlier, and felt peace.

We sat down and the first thing he said was, "I'm sorry it took me so long to speak with you. I was reviewing the tests and paperwork trying to figure out why the other hospital told you she was going to die."

He then went on to explain she has three things different about her heart. Two are minor and don't need any treatment or watching. The third thing is minor in terms of its treatment, but big in how it has been affecting her quality of life. We are going to schedule surgery for sometime at the end of May. He wants to give her more time to grow and gain strength before the operation.

And the surgery is free!

I have been praising God since I found out. In between my crying. It's not near the same as being raised from the dead, but this is a little girl who people thought had no life. I was in palliative care mode. And now I get to plan her life!!!

Update on little cute-face.

I thought I'd give you guys an update on how the little munchkin is doing. It's been a busy week.

 We had to cuddle of course.

 Pre-church naps are always helpful.

 Then of course you have to get prettied up for church.

 Watching cartoons together. I seriously love her face in this picture.

 Sometimes you just need to have a little cry.

 So very cute.

First time in a car seat!

 I'll let you evaluate how well "tummy time" went.

 She has gained enough strength to hold her head up by herself! She is also rolling side to side, and learning to reach for toys. Her progress in less than two weeks is nothing short of amazing to me. 

The only thing we haven't made progress is in the eating department. So yesterday she earned herself her very own feeding tube! 

I have been consulting with her pediatrician, and especially with a nurse from Scotland who worked in Haiti for a long time, specifically with malnourished babies and children. We've tweaked formulas (she has developed a lactose intolerance, which isn't uncommon with malnourished babies) and a fellow missionary is donating some breast milk. But we weren't seeing much progress weight wise. And there was a lot of anger on her part when it was time to eat. If it were up to her, she'd eat 1 ounce every 5 hours. Sorry kiddo, not going to happen!

I'm so thankful for my time in the NICU. I am comfortable with bad feeders, bad sleepers, sick kids and lots of meds. 

Please be praying for Marcy. She is doing so much better in many areas, but feeding is important. Pray that we make the right decisions for her. Pray for weight gain so she won't be re-admitted to the hospital. Pray that she'll feel loved and secure, and have a desire to eat.

This post is about.... Marcy! Of course!

Tomorrow we will complete one whole week with Marcy.

And her mother will have been missing her for a whole week. 

I struggle with the emotions of knowing Marcy will receive love and attention and better medical care with us, but she is without the love of her mother. And that makes me sad.

This journey might be a lot harder than I thought it would be. 

But, since the decision is out of my hands, and I know God had a purpose in bringing her to me, I will focus on what I can do to give her my best.

 Learning the art of selfies young.

 Aracely has decided this sweetie is her doll for dressing up. It's not rare for me to see Marcy in a new outfit after a diaper change.

 Doesn't look like Marcy minds!

 I was working in the office and Aracely rolled her in like this. So cute! I left the picture of Aracely's hands so you can see how small she is. This is a doll stroller!

 We went to church. Everybody loved her!

 Post church snuggle.

On Monday I (finally!) had orientation with the nannies. I wanted to make them lunch so we could get to know each other a little better. I'd say we had some pretty nice table decorations!

 Trying cereal for the first time. She loved it!

 Bedtime routine. Good thing she likes her meds! Most of the time. She gets several different ones as well as her nebuliaztions throughout the day, but morning and night are when she gets the most.

Thought I'd just finish up with a post of some cute laundry ready to be washed. Who knew laundry could be so cute!

Meet Marcela!

This happened on Thursday.

It might go down in history as one of my favourite days. We received our first treasure, Marcela.

Her story is a bit of a difficult one. Her mother loves her, but the situation is impossible for her. So we get to love on little Marcy in her place.

Marcy has a very rare genetic disorder that involves multiple organs in her body as well as severe malnutrition. Eventually those organs will shut down completely. I don't know how long we have to love on her, but we will love on her with all we have in us until that day.

She will be 7 months old on Monday, and weighs less than 8 lbs. So the first day we kept treating her like a newborn because she is so small. We kept trying to get her to sleep. I figure that's what little babies do. Except our little Marcy has the mind of a 7 month old. She wants to stay up and play and hang out with us! We are happy to oblige her. ;)

Yesterday was a bit of a rough day for her. She was having trouble with the transition to a new house, new routine, new sights, new sounds and new people. And she was having a lot of tummy pain, so it was hard to soothe her. Today is a much better day. She has even been smiling at us and cooing! It is truly fun.

 First night.

 The hospital that transferred her to us didn't have all the right medications to give us that she needed. So as soon as the pediatrician had looked at her (thankfully the Dr. came over to the house once we got home!), I left her in the care of her nanny, and took off to get the equipment and meds that she needed right away. By the time I got home, it was bedtime for the little one. I stayed up trying to sort out that mess you see in the picture. I sort of succeeded.
Then, the next day I had to make three more trips to pick up other things she needed. It's been hard finding the right things that she needs medically. And I didn't really have any newborn clothes for her. So shopping was fun, and a friend came and dropped off a bunch of brand new cute clothes for her.
I was exhausted, but I think for now we have everything we need. But I'll be on the lookout for baby things in the pacas (secondhand store).

 Leia on the first night, and ever since. She loves the baby! She stays near her, lays down by her, lays in front of the door if she's in the bedroom with the door closed. So glad to have such a loving little puppy!

 My first nanny, Araceli, is loving having a baby to love on! They have already developed a good bond, for which I'm thankful. 

I called Araceli about 3 hours before we arrived with the baby, and asked her to move in! She knew it was coming soon, but we didn't think it would come this quickly. She has been great at remembering to give meds, and though I have offered to take Marcy in my room at night, she says she is fine. Who am I to argue?!? ;)

I'm loving her awake times. She is a good snuggler! We are being conscious of not spoiling her to much though. Because she has a heart condition, everything makes her sweat. Even just eating is hard work for her. So we don't let her cry much (if we can help it. Pain is another issue). 

Hope you've enjoyed the introduction to our little Marcy! Please be praying for wisdom for us and pray for peace for her mother.

Where do we go from here?

I thought I'd let you all know what comes now that I have the long awaited license.

I am licensed to take in girls age 0-9 years old with any of the following illnesses: cerebral palsy, down syndrome, spina bifida or hydrocephalous. Though that is on my paperwork, basically any physical disability or special need will be considered if the courts call with something different. I am only taking girls because even though the house is huge, there are not enough bedrooms to have both boys and girls. In the future, I hope to have enough space/houses to have both boys and girls.

I anticipate most of the children will be a little older (not babies). Not all disabilities and illnesses are evident immediately and so they may not be abandoned until later. Or, a family is aware of the disability, but they want to try and do the best they can for as long as they can. But if I'm being honest, I would like at least one little cuddly baby!

Now I wait for the courts to contact me. CNA automatically gives out our information and profile to all the courts in the country, but the social worker and I will visit the provinces nearest us to present ourselves to the judges so they know who we are and what we do.

If a family feels like they need help, or want to give their child up, they (with our help) can petition the courts to have their daughter placed with us. But I know that there already many abused and abandoned children out there so I'd rather help those already living in hospitals. That doesn't mean I wouldn't help a family that is truly in need, but I want to start with those already abandoned or removed from their home.

Once the court has contacted us, and we agree to take the child, the paperwork is processed and I go to pick her up wherever she is. Then she comes home with us!!!!

This could be anywhere from today, to 2 or 3 weeks from now. As I have already learned, paperwork sometimes takes a long time! But they will come.

I have nannies, therapists, dr's, psychologists, teachers a housekeeper, and myself, all ready to make this child's life the best it can be. I can't wait! Though again, if I'm being honest, I'm nervous. I've lived alone and childless for most of the last 14 years. I have had a roommate or two, but only for a few years. So now you can all pray for me. For patience, for peace, for energy and for a desire to be around people 24/7!

So that is where it stands. You know I will be posting pictures and news as soon as I get my first little munchkin!

Not an April Fool's joke!

I received a phone call from CNA today.

My license is ready to be picked up!!!!!!!

They asked me when I could come in. If I was in the City, I would have said right now! But I was on my way to pick up the boys for Bible Club, so I'll head to Guatemala City tomorrow morning and go pick up that sweet, beautiful piece of paper that says I can have girl's in my home!

Praise God!!!

Thanks so much for your all your prayers. What a great day!!!!

Leia is ready for some girlies to love on!