Almost 3 Months

Ariana has been taking almost all her bottles by mouth. She has also been on room air most of the time and gets a little oxygen for her feeds. Last Thursday the eye doctor checked her eyes and found that (as many preemies do) she had Retinopathy, which is an eye disease that causes blindness if not treated. He also felt it had progressed past a point than he allows before performing surgery. So that evening he did laser surgery on her eyes. Ariana was sedated which really worried everyone, since many babies have to be intebated (get the breathing tube) and we all know she had a very hard time coming off that breathing tube; only because her airway is damaged from having it in and out so many times. And she still gets very squeaky because of the damaged airway. We were extremely grateful that she did well and did not required the breathing tube. We won't really know the full results of the surgery for another 2 weeks, but we do know that she will not have peripheral vision due to the tissue that was damaged. Our prayers are that the rest of her vision will be great.

About her squeaky airway - they plan to do a broncoscopy, which is a small camera that they will put down her throat to look are her airway. Because of her squeaking noises and sometimes seeming to be breathing hard to get air, they want to make sure there is nothing they need to do before she comes home. She has to be sedated for this procedure too, so Lord willing - that will go well and we can look forward to bringing her home within 2 weeks :)

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.

Roller Coaster Ride

This week has been full of many ups and downs. Ariana was taken off the ventilator and put back on about 3 times...she's back on the ventilator. And she started not acting like herself, not moving all around and just sleeping and being really out of it. They think she has another infection somewhere and are running test. Carlos and I prayed for her this morning and we are trusting God to continue His healing work in her.

Back on Ventilator

Ariana had to be put back on the ventilator this morning. They are running tests to see if she has pneumonia. We appreciate your continued prayers.

Off the Ventilator

Ari is off the ventilator and breathing on her own! On Saturday they took her off and put her on Cpap, it puffs air in her nose, like a nasal cannula. She's been doing really well. Her heart rate is lower than it has ever been, she always had a high rate on the ventilator. She also being fed 6cc of milk and doing well...she was being fed 1cc on Friday. So she is making progress.

She weighs 2lbs 7oz...she is gaining weight too :)

And we held her this weekend for the first time...it was amazing. She was so peaceful. I wanted to hold all night and not let her go.

Soon to be off ventilator

Ari has been doing really well. Soon she will be off the ventilator. They say that will be her next hurdle, breathing on her own with the help of CPAP, which simply puffs air in her nose to encourage or reminds her to keep breathing....a nurse described it like sticking your head out of a car window while it's moving...the wind makes you take a deep breath.

She's been doing better with tolerating her milk. Just having a hard time staying on a "pooping" schedule. I guess breathing, digesting the milk, and pooping is too much to process all at once :)

1 Month

Ari is doing very well :) She will soon be off the ventilator. Her swelling has come down. She's being fed after 2 weeks of no milk. She was so active this weekend. She cried - not that we heard her - but we could see her expressions, which tell us she is very alert. I felt so bad for her she was crying and even though I couldn't hear her, I could feel her cry. We are so grateful to be at this point, we have been feeling such relief this weekend as we continue to hear of her improvements each day. I'm afraid to take it all for granted and just keep reminding myself to appreciate each moment...even with our older ones.

Mia (the 11 yr. old) sang at a concert this weekend and I listened to her play her violin and was so pleased with her and her talent.

Aliyah (the 8 yr. old) is my right hand girl, she's so helpful and willing to serve.

Mikayla (the 4 yr. old) has been so happy, laughing, being silly, and jumpy...she wasn't always this happy so it's really nice to see her full of joy. And she loves Jesus - she reminds us every day.

DJ (the 3 yr. old) is the one who expresses his love and concern for Ari the most. He asks for her everyday and always prays for her. He woke up one day and told me he had a dream about Ari...very deep dream I will have to put in another post.

We are grateful for each one and each moment God gives us.

Almost 1 Month Old

Ari continues to get better. You see in the latest picture of her, she is swollen. They have been giving her medication to get rid of the fluids and to help with the swelling, however, as long as she's on the oscillator and being sedated, she will continue to have the edema. Her oxygen levels have been improving, they have held off on the steroids for now because she has shown improvement each day. She hasn't been fed yet, but has no more bile coming out of her stomach.

Each day I thank God for showing me how He has His hands on her and is taking care of her.

3 Wks Old

Ari just had a great weekend, compared to how she's been doing. She's been maintaining her oxygen levels and the line in her stomach came out. With the line out of her stomach, we will be able to hold her soon...I can't wait! They haven't fed her yet, as she continues to have bile coming out of her stomach so they will be checking her stomach in the next day or so. She didn't need blood all weekend, which was also nice since they had given her blood almost every other day the past week. They will look into started steroids on her this week, since her lungs aren't functioning as well as they should be at this point.

I helped the nurse check her temperature, change her diaper, and wipe her face and Ari handled it really well. She gets really annoyed at times when she has this done and she fights this hands on care and gets worked up, then her oxygen levels drop. Only when I was wiping her eyes, she did get touchy and I did have to stop and put my hands on her without moving to calm her. She lets us know what she doesn't like. Like the saying goes, "Actions speak louder than words." She can't speak, but she can stop breathing to be left alone...and she turns red.

I met a lady this weekend whose baby was born last Dec. at 23 wks. They told her there was a 95% chance her baby wouldn't make it. Her daughter had a lot of complications. Her due date was today and her daughter is 8lbs and learning to eat and breathe at the same time...then she will be ready to go home. God is amazing, He is in control of our lives. If we look around us and see all the things in this world and look at life and these little creations...how could there be no God?

To All The Brothers and Their Family

Thank you, thank you, thank you! Carlos really enjoyed being out with you guys. Words cannot express our appreciation for your generous gifts. I just wanted Carlos to have a break and you guys went above and beyond your call of duty.

To all the wives, thank you for letting your hubbies out for the night :) The way you all have supported us has just been blessings added on to our abundance of blessings.

We have just been humbled by the way everyone has stood up to serve us in such special ways.

Day 19

Ariana has continued to improve this week. They are continuing her antibiotics for another 3 days, which she's been on for her stomach/intestine infection. She has a line in her stomach which they plan on taking out tomorrow, this is the one they give her transfusions from, which they have given her a lot of them. The line in her stomach has been in for over 2 wks now and is a source for infection, so they need to take it out. So they will put a line in her wrist so they have another area to give her blood. Her other wrist has her picc line and one leg has a line for her thyroid medicine, which they started her on yesterday. So she has one little leg free of lines. We continue to trust soon she will be free of all these lines, healthy, strong, and in our arms.

She continues to be sedated but is still very active, so they may give another medicine to get her to calm down more. She's had many wet diapers this morning, which is good, she's getting rid of all the fluid she's holding. She weighed around 2lb 3oz last night and that's going from 1lb 9oz a few nights ago...and she hasn't been fed - so with the wet diapers some of the swelling should come down.

She's getting there slowly - God's teaching us some serious patience!

Day 17

Ari continues to be a little fighter. They have her on a 7 day course of antibiotics for an infection in her stomach. She's still on the oscillator and being sedated. They actually went up on her sedation because she gets very agitated and her oxygen levels drop. One nurse said being sedated doesn't faze her, she keeps moving all around, as we all say, "She is feisty."

To All the Guys:
Thank you for getting Carlos out. You all work fast. He's looking forward to Friday and I am too.

Thanks again to everyone for all your prayers and well wishes. We have been so blessed with meals and my family has been great at taking our other 4 kids so we can spend time with Ari. Now if I can just get someone to do our laundry and clean, we will be all set :) I'm kidding! We have been taken care greatly by all of you in one way or another - I can't say it enough - Thank you!