Little Marcela.

On Friday, Marcy and I had our one month anniversary of being in the hospital. Half of that time has been in intensive care, and the other half in intermediate care.

She has had three surgeries, a tracheostomy (twice. They took the first one out and three days later she decided she wanted it back in again), countless I.V.'s (including a femoral line-long term I.V.), a ton of x-rays, multiple antibiotics and steroids, two laryngoscopies, many blood draws, suctioning, examinations, dr's talking over and about her, one chest tube, dealt with very high blood pressure, and hundreds of prayers prayed over her.

It's been a bit of a rough month.

Please keep praying for her. The chest tube was placed Friday, after her lung collapsed (and the dr's can't tell me why this happened). And she has another infection. So it seems to be two steps forward, and two steps back. 

 There are many things contributing to her ongoing complications, but it basically comes down to her short, tiny little trachea. It is weak and flimsy (malformed due to her syndrome), and it was damaged and swollen from her initial intubation (the tube down her throat to help her breathe after heart surgery). Besides that, her kidneys don't function as they should, and though the repair on her heart was successful, there are other issues with it that are being managed by medications.

This little girl is much more complicated than we all thought. And in such a short time together, I have fallen in love, and want only the best for her. As a parent, it is hard for me to look at it objectively, even though I am an intensive care nurse! None of what I am seeing is really new or shocking to me, yet it is so much harder now that I'm emotionally involved. 

So please be praying for her little body. I just want her to come home! Of course, I want her to be completely healthy first. 

They want to take out the chest tube today, and try to take our her tracheostomy tomorrow. I am nervous. Please be praying for her, and success with the trach removal. If it isn't successful, I'm not sure of the plan. There has been talk of bringing her home with the trach, and trying to remove it again at a later date. But at this point, I don't know. 

Update.

I'm so sorry. I have forgotten to keep you updated on here. I have been sending updates on the facebook page, here.

Marcela hasn't done great post-operatively. She had a simple surgery, but developed some unexpected complications that still affect her and she has been in intensive care since last Wednesday.

For the most part, everything is under control now. But after 3 unsuccessful attempts at extubating her (taking the tube out of her throat that was making her breathe) they decided to do a tracheostomy. This is basically a hole in the base of her throat, they insert the tube there, and this leaves the top of her trachea free to heal from damage and swelling. The tracheostomy was placed on Wednesday, and we are seeing good results. She is no longer needing the ventilator (which makes her breathe) as she is breathing on her own. She is allowed to wake up more too, as her head movement, etc. will not do any further damage.

Please be praying that the swelling goes down soon, and they will be able to remove the tracheostomy this week. Pray that her blood pressure stays under control (this may be a kidney issue that will need to be followed up). And pray for us. We miss our baby!

Please pray.

Today Marcela had surgery on her heart. It was a simple procedure in theory, but complications arose that have the potential to be very serious.

Please be praying for a miracle for Marcela. Please pass this on to your friends. She is in intensive care, and will remain there tonight. Hopefully we will know a little more in the morning.

Progress.

Hi all. I thought I'd give you all a picture progression of little Marcela's time with us.

 First night she arrived. I'm surprised I was able to smile that big. I was as stressed out as I've ever been. And unfortunately she cried for a long time in the first few days. Transition was tough.

 My scrawny, but beautiful, little Marcy.

 Looking weak and lethargic. Had only been here a few days by then.

 Church, 10 days after coming to us.

 My little bright eyes. Unfortunately, her eyes were happy, but her body wasn't. 

 We needed to give her heart a break, and get some calories in her, so we put in a feeding tube. She hates the insertion. Justified.

 I think at this point she has been told how cute she is enough times that she believes it. ;)

 Little fat face!

She can hold her head up, roll almost all the way over, loves to watch cartoons, having her head rubbed gently is her favourite, talks and smiles more and even laughs sometimes, and knows who loves her. We have enjoyed every minute with her. Watching her progress in her milestones has been wonderful for me. I love to see such astounding achievement in such a short period of time. 

All of this progress takes money. Sorry, had to bring it up. We need special formula for her lactose intolerance (from her malnutrition), we need diapers, we need medical consults, we need exams (urine, blood, x-rays, ultrasounds, etc), we need medicine, we need extra staff members, we need therapy, we need gas money to get us to the experts in Guatemala City, and the list goes on. 

If you would like to partner with us monthly, and help Marcela and the girls who are to come, please click on the tab at the top of the blog "how to donate". You can donate from Canada or the U.S. and receive a tax deductible receipt for both countries.

I really appreciate all your prayer support, and encouraging notes. 

Thank you from Marcela and I!

Please Pray!

When we went to get a bladder test done, the Dr. took an x-ray and told me that Marcy's hips were dislocated. When the physiotherapist came, she confirmed it. She told me that sometimes if you treat them before one year of age, you may not need surgery. I don't know if this is true or not, having not encountered an 8 month old with untreated hip dislocations.

We have an appointment this afternoon with a Dr. who will be able to give us more information. Please be praying for healing, or effective treatment without surgery.

We also are having her heart surgery the end of this month. Likely May 26th, but that is not set in stone. Though it is minor, it is a surgery, and her little body needs to be up for it. She is gaining weight (my sore muscles are testimony of this!) and taking iron for her anemia, but she needs your prayers to be ready.

Thank you for all your prayers. She really is doing so amazing given her circumstances in the first 7 months of her little life. My aunt made a comment on facebook of this picture. She said she was amazed at what I had done for her as she looks so different. My reply, "A lot of food, a lot of love, and a whole lot of God!"

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.