Almost There :)

Ari is doing very well. She is going into a regular crib today. She has been taking her bottles for some of her feeds and I've even had the chance to breastfeed her a few times. Her weight is 3lbs 13oz! She still very squeaky from the tubes going in and out. So when she takes the bottle, she sounds like she can't breathe and makes loud squeaky noises, but she's fine.

She's still taking some medications by mouth for things like her liver and thyroid. Ari also still requires oxygen, but these are all things she can come home with. We're just waiting for her to take her bottle on all her feedings and she can come home. They think she can come in 3-4 weeks :) We Can't Wait!

Our Little Miracle

Here's a little clip of our past 2 months. She's come a long way. Thank you all for being there along the way. Although we still have a way to go, we hope to have her home soon.

2 months ~ 3lbs 5oz

On very little oxygen.

Hoping to bottle feed next week :)

2 months - 3lbs 2oz

Ari has made it to her 3lb mark. Amazingly she has never lost weight, only gained. She is on cpap again (like a nasal cannula that blows air), off the ventilator since Saturday. She has been doing well and we just pray that she continues to do well. This is the longest she's gone breathing on her own.

Thank you all for your continued prayers.

Plan for Now

Ari is back on the ventilator. I got a call at 1am, she had stopped breathing because she just got too tired and they had to put her back on the ventilator. I went to see her and she looks much more comfortable being back on. Unfortunately, she has to do this on her own, so they will put her back on steroids to reduce the swelling in her throat and take it out again. The longer they keep the tube in the worse it will be, so for 24 hrs she will get the medication and they will try her again.

Hopefully, this time she will fly. However, if she can't they will put a scope down her throat to see what's going on. And if all is normal, they will consider doing a trach at that time. If she can't make it on her own right now, the trach will allow her to breathe comfortably on her own until the swelling resolves itself, so God willing, it would be temporary.

This morning I said to Ari, God had us there for a reason and He has a plan, He is teaching us many things. Some of you may know, when I worked as a nurse's assistant one of the things I had a hard time working with were people with trachs. So when the nurse told me that, I thought, "Wow, what a way to humble me."

I want everyone to know that even though this is the hardest thing Carlos and I have had to go thru, we know God is in control and is doing all this for good. Believe me it's not easy, I have never cried the way I have cried for Ari, but the fact that God has a purpose and He may change lives for good - I know mine is - in the end it was worth it. I've thought of how Mary had to watch her Son, Jesus, be beaten and killed and I've thought of the movie The Passion and now can still only relate in such a small way what she felt. And then to think it was for us. I can't imagine the pain God feels for us, He's losing us daily. I hope we can encourage someone to "live each day as though it were your last," put your trust in God, more importantly give your heart to Him. Only because of Him we have peace in this storm.

Tube Came Out While Papi Held Her

The night before last Carlos went to visit Ari and while he held her (for about 2 minutes) her tube came out. Since the tube is taped to her face, he couldn't see that it was no longer down her throat, but he could hear her making noises which we don't hear with the tube in. Along with the tube coming out, alarms were set off. But since the alarms go off for so many different things, it took them a few seconds to realize it was because the tube was out. Ari is able to breathe on her own but starts having trouble after a while. So when they realized it, there was a rush of people, she was immediately removed from Carlos' arms. Believe me, this was more traumatizing for Carlos than it was for Ari.

Ari was put on cpap (like the nasal cannula). She has been working really hard to keep breathing on her own. I walked in yesterday to see her chest caving in because she was struggling so much. Her right lung collapsed again. The problem is the swelling in her throat and airway because of the tube going in and out so much. They are giving her medication for the swelling and medication that reminds her to keep breathing. I wanted to stay with her all night, but Carlos wouldn't let me :( I know he means well. So I just called them all thru the night to check on her.

She hasn't had the tube put back in. She had a rough night. I was really hard watching her but I understand why they are doing this. I saw some nurses panicking and wanting to have her to have the tube put back in again, but when the doctor explained that we need to give her a full chance to do this, the oxygen levels in her blood have been fine and she maintains her oxygen with a few episodes of her levels dropping. He explained with the tube out, they can work on the swelling coming down and she'll be fine.

In a perfect world, no one would go thru this. I just held her hand all day and only left her side because I had to use the bathroom. I told her she had to be a big/little girl and for her, this was part of growing up. More importantly reminded her she was in God's hand and that was the best place to be.

7 Weeks Old - 2lbs. 11oz.

Ariana has been improving once again. She still on the ventilator but on very low setting. She will be off this week, they will try her again on cpap or maybe even vapor derm (nasal cannula). I kangaroo held her today: that is holding her on my chest skin to skin, they say it helps in their development. She can hear my heart beat, like when she was in the womb. I loved it.

All her tests for infections to her organs have been negative. They were not successful with the spinal tap, unfortunately, after quite a few attempts. They said they may try again Monday to make sure there is no infection in the spinal fluid but tests have been negative for her having any infection so I will see if we can do away with that one. Her poor little back has all these stick marks, where I thought they tried 3 times and it doesn't look that way. But she is in God's hands, it's the best place to be. So even when I feel like being an angry mom, I remind myself of who is really in control.

You can see by the pictures, she wakes up now with eyes wide open. She's doing well taking my breast milk and is taking the maximum amount she can take right now. She loves her pacifier too.

Update

Ariana has been up and down for the past 2 weeks. I wasn't even sure what to post in the blog since she has been going thru many changes. Yesterday I went from holding her in the morning, she looked really good and comfortable to later come in to her being intibated again (put back on ventilator) and being tested for many things. They began looking at all her organs since she continued to test positive for a bacteria after being on antibiotics. They said once an infection is in the body for so long it could attach itself to organs; so they checked her brain, heart, kidneys, and did a spinal tap. They were not successful in getting the fluid they needed in the spinal tap and are suppose to repeat it today. However, today's blood results were negative for bacteria, so the infection may be resolving, now waiting to see if they will still want to redo the spinal tap.

They also want to test her for cystic fibrosis, because of the amount of mucous she's been having and her difficulty breathing. However, today her nurse told me she was tested for that when she was first born and it was negative. So I'm waiting to find out if they will rule that out.

Yesterday was tough, we went from being great in the morning to not stable in the afternoon. I don't know what to pray for anymore, I'm just thankful we have all of you out there praying for us.