Refreshed!

God is so merciful. Yesterday ended really good. Ari was doing better, eating more, more expressive. As I stood by her crib at around 11pm rubbing her head to help her fall asleep, I felt so sick and weak. I had one meal and had not drank much water. It was a big reminder for me to take care of myself so I can stay with Ari. I started to think that if I got sick I wouldn't be able to be with her and I could get her sick. I ate a soft pretzel and went to sleep, didn't even put my pajamas, just stayed in my jeans.

We slept all night! I woke up around 6am and couldn't believe what time it was and that we slept all night. The nurse said she didn't even get all her meds into her because she was so sleepy. It was so refreshing. I spoke to a few friends about my lack of sleep and knew they were praying...once again God has so graciously answered them.

Today Ari did great. She's been eating more. She just doesn't want to drink fluids and doesn't want to talk or make noise. The speech therapist is seeing her and says she will have to make sure she doesn't get use to not using her vocal cords. She says she has to learn how to use her new airway, so we need to work with her on taking liquids and talking again. Otherwise, she's doing well. It's been a struggle to get them to wean her off her narcotics. She has been improving and they haven't weaned. They are concerned with pain which she has shown discomfort at times. However, I want to see her come off the narcotics and on some other pain meds.

Overall, much better and rested.

Much Better - No Bronch!

After I wrote my last post, Ari took a long nap. I went and got lunch, when I walked in she had been crying and the nurse was holding her. She saw me and said mamma. I didn't even wash my hands, I just took her. She hasn't cried since Tuesday and even then it wasn't even a cry with tears. She was looking in my eyes and my mouth as I talked to her, which she hasn't done at all since she woke up on Tues. It was as if she really woke up today. She also had a few bowl movements, which she was having a very hard time with.

She just seemed much better, so I questioned whether she even had to have the bronch. They came for her within minutes and the anesthesiologist asked how she was doing and I said much better. She called the doctor, he came right up and decided to hold off on the bronch. He wanted her out of bed, moving around. We have been on the floor, playing and I've been standing her up. We went for a walk in a wagon and she enjoyed it. We got back to the room, put Dora on and she perked up again, started standing up in the wagon laughing and just getting excited. It was great. Then she sat down, laid down, rested, and then got right back up again.

Praise God! All my worries and risks about today He took away. "Through the Lord's mercies we are not consumed, because His compassions fail not." Lamentations 3:22

Another Bronch

Last night was a hard night. Because she's going through withdrawal she slept about 2 hrs and stared at the ceiling the rest of the night. She also has been having swelling which is causing her to work hard to breathe. They tried something called "heliax" (?sp) and it didn't help. It's basically oxygen mixed with helium and because of it's density it's suppose to deliver oxygen easier even with swelling.

It was frustrating because since yesterday I felt she should get steroids because she was sounding striderous (loud when breathing) but it slows down healing and weakens the immune system so they did not want too. I told the nurse it seemed odd that they would risk her airway swelling and closing and requiring a breathing tube over steroids. They kept telling me she was "moving air fine" so she didn't seem to need the steroids. Well by the morning her nostrils were flaring and she was louder. ENT group came in, did not look happy that she looked and sounded the way she did and ordered steroids right away. I know I shouldn't say, "Told you so" or "Mother knows best" but that could have been avoided. She's already had two steroid treatments and a dose through IV since they came in this morning. So they've decided to do another bronch (put a camera in) after 3pm today.

Risks Today:
~Requiring the breathing tube again. With the bronch she will go to the OR and be under anesthesia. They are going to try not to put the breathing tube back in, as it would cause more irritation and swelling, but if she can't breath on her own under anesthesia, they will have too. ~The stent (cartilage put in airway) could have collapsed. They say if it collapsed she would sound a lot louder than she does now. However, she was drinking for a bottle on Tuesday after the tube came out. By yesterday morning she was clamping her mouth shut and gagging when anything is given to her to swallow. She started drooling a lot today. They say this is all expected, but when you feel you know your baby, you can't help but question everything.

Ari also has had a bump on the back, side of her head. It's very red. We think it was the beginnings of a bed sore but it hasn't gotten better and she's been off of it. On the other hand her withdrawal symptoms have improved. She not as shaky and has more control over her movement. She's been a little sweaty and not interacting yet. She's not able to process her thoughts and feelings. She got stuck three times yesterday for an IV and just laid there in a gaze.

I feel like I've just written my list of worries and complaints, but hope you can all take it as my prayer requests. I feel all over the place today and I'm sure lack of sleep has a lot to do with it. So continued prayer is needed. I feel like I'm moving into a question God mode and I don't want to be there. I know God is sovereign and His plans are perfect. I will end with this, my comfort has been that she looks comfortable through all this. She hasn't cried, she's smiled a few times, but just looks comfortable and for that I'm so grateful.

Recovering Well

Ari had her breathing tube taken out yesterday around 3pm. She has been doing well breathing on her own. It was so weird holding her since it had been 5 days, she's swollen, has no coordination with all the meds in her, and is going through withdrawal. The withdrawal is the hardest thing to see now. She is very shaky and fidgeting a lot. But she gives me a smile every now and then. She's said a few words, she doesn't have her voice back yet, very scratchy. Every once in a while she has been able to say something clearly, her first clear word/name was "Mia." She's been saying names as if she's asking where everyone is. A speech therapist is coming to see her.

The doctors have been keeping a very close eye on her, especially her ENT. He's been amazing and coming to check on her between surgeries. It has definitely help me feel better knowing that he's following her closely. He's been very protective of her and what they do and the meds they give her. They wanted to put a feeding tube back in to take air out of her stomach and give her meds and he said no. He wants nothing around her airway and just told the nurses they need to find another way. So I'm grateful that he's protective of her, but her poor little belly is still big and hard. For some reason they are taking time to get that sorted. The nurses say they usually don't see specialist like that. So I feel God's favor on us. He has answered all of our prayers and then some.

Big Day Tomorrow

Tomorrow they will take out her breathing tube and see how she does. They took a look at her airway today and put a smaller breathing tube in. She had some swelling which was expected. They started steroids which should help that swelling. They have started to wean her off some of her meds. Unfortunately she required a lot of medication to keep her sedated. I've heard her described as requiring an "impressive" amount of sedation. I always wonder what long term affects this will have, they usually find out years later. It usually looks like this, "Oh by the way, we don't do those types of sedation anymore because studies found that they caused "xyz." Let's face it, some of these meds sound like they don't even belong on a pediatric floor. But I'm trying to be focused more on her comfort rather than the narcotics in her body.

On Saturday they finally got her rested. She has been comfortable and sleeping well since then. I miss her. Thursday and Friday we were constantly watching her, since she moved so much and kept waking up. So after Saturday we were happy she was comfortable, but we just missed her. We have videos of her that have kept us going.

Prayer request: As I write she just finished having an xray because her oxygen levels have been lower than they should be and that's with higher oxygen being given through her ventilator. They are going to reposition her in hopes that the tube may just be sitting against the trach wall, causing less ventilation. If you could pray that God would allow her to be well ventilated and that tomorrow she could come off the ventilator and be comfortable.

Critical Airway

It was a tough night. Ari has been resistant to the sedation, therefore, waking up and moving more than they'd like. At one point she woke up as they were changing her sheets, I walked over to try and comfort her but only upset her more. She wanted me to hold her and tried to get up. When I didn't pick her up, she started mouthing "Mom," since she has a breathing tube in she has no sounds. That was my breaking point. Carlos was great at stepping in.

With the increase in sedatives, at times they have had to 'bag her' (which is like performing CPR with a bag that blows oxygen into her lungs) because her O2 levels drop and the ventilator was not working on it's own. She also was trying to breath over the ventilator and as they were bagging her, it was making it harder for them to stabilize her, so they had to give her some really strong stuff to basically paralyze her for a period of time.

She is very sensitive to what's going on around her. She has stood up to her title she once held when she was first born and in the nicu (neonatal intensive care unit) which was "feisty." She was resistant then to sedation and was usually bumped up and that was at 2lbs. God has given her a strong will and for that we are grateful...although at times hard.

There is purpose in all this. I praise God for the strength He gives us each moment, without Him this would all look very different. We are so grateful for all the support we've had. Our church has been amazing coming out to pray with us and Jerry, our Care Group Leader who just sat with us throughout the whole 5 plus hrs of surgery. The phone calls, text messages, emails, all offering prayer and support ~ amazing! We are so blessed.

Reconstruction Surgery

Ari's surgery went well today. She will be sedated for the next few days to allow her to heal, she's also on a ventilator (breathing tube). Unfortunately, she woke up twice and was very upset. One of those times they were adjusting the breathing tube and stitching it back in place when she woke up. Carlos and I are just feeling like we can't take our eyes off of her. But they have been great about getting her right back under sedation.

So we are just trying to trust God, once again. We are so anxious but trying to keep in mind of how faithful God has been. They didn't have to make an incision in the rib area to get cartilage as they were originally planning. They had enough from her larynx. They didn't have to make two cuts in the airway to widen it, the doctor was able to make one. They almost doubled her airway size. The plan is Tues. they will take out the breathing tube and see how she does breathing on her own. So God has been good to us and has made our little Ari strong.

We finally got a new camera, so there will be new pics of her...enjoy.

Dora - "udi it udi it udi it"

Just wanted to share Ari's love for Dora. She doesn't say, "Dora" but she starts singing, "We did it," except she says, "udi it, udi it." It cracks me up because Kayla walked in this morning with Dora pj's on and I didn't think anything of it until Ari starts singing udi it udi it...and would not let Kayla go. Kayla took off the pj's and let her hold on to them and went to get dressed. They spoil her and just give her what she wants; we are working on that since it's not building good character in Ari. It's so hard not to label her as having needs, therefore we spoil her more than we should, and add the fact that she's the baby. Just don't tell Papi she's spoiled, he does not like that being said of his baby. (So Honey, as you read this try to block out or replace spoiled with loved ever so much :o)

Prayer Requests:
As we approach her surgery day, I'm trying to consider whatever needs to be done for the month of September. Please pray for us to get done whatever needs to be done and trust God to fill in the gaps. I'm hoping for much company during that time, so anyone who wants to come visit, it will help the time pass. Pray for Carlos, he will need patience and grace in being with them, my prayer will be that God would knit them together during that time. The kids, they will be working on staying on task with their school work and working together with their grandparents, aunt, and Papi in obedience. Also that they would have peace as Ari and I are away. As for me, I've been feeling weak emotionally and struggling especially with the first week that she will be sedated. And for Ari, strength to get through the surgery and recover quickly.

New Teeth ~ Another New Cousin

Ari finally has two teeth on the bottom coming in. They just broke through over the weekend. She also got a new baby niece over the weekend, my other sister had her baby. My two sisters and I now each have girls within a year of each other. I'm trying to think of a name for the three of them, "Threes Musketeers, Three Chipmunks, ....." I can't wait to see them grow up and develop their relationships.

I stopped giving Ari cows milk, as I kept hearing and reading about the negative affects of milk. However, it's very important that kids her age get fat for brain development, so she's on flax seed but will be changing over to fish oil for that healthy fat. She's been sleeping through the night and I don't know if it's because of no more milk or it just happened at the same time. I've been on a health kick, so I'm glad she's finally getting her teeth so she can eat more.

She's still not walking and I've been getting anxious about that; although I know I should not be. She's trying and still doing therapy. Her therapist says she will be walking very soon, but she's been saying that for about 2 months now. I know I need to trust God in this too.

She's been very healthy and I'm praying it stays that way. Two weeks before her last two surgeries she got a cold, hopefully this time she'll stay health. (Maybe it was the milk that cause her to develop these colds often...we'll see.)

She loves her sister Aliyah. Aliyah loves to hold her and be with her and that's the only name she says recently. She calls her Ayia. She calls me and most women "Mom" but she says it with such demand for attention. It's pretty funny. She loves to hold fingers when she's going to sleep.

We are just enjoying her so much!

After Surgery/Before Surgery

Ari had her second surgery which went well, except for the news that followed. She had her adenoids taken out and was going to possibly have her airway dilated again and a cyst removed from her airway, neither of those occurred. During her last surgery her airway was dilated to a 5.0 airway, her airway was 3.0, normal airway for a child her age is 4.5-5.0. Her airway should have stayed dilated, but there was a chance it wouldn't and it didn't. It went back to 3.0 size. The dr. was also unable to remove the cyst without compromising her airway even more. So they will be performing reconstructive surgery and removing the cyst in the beginning of September which will require she be in the hospital for the whole month. She will be on a ventilator for 1 week while the swelling goes down, and will be sedated that week. After that week they will monitor her activity for 3 weeks. If the surgery fails, she will require a trach. We were kinda shocked to hear this, but as usual went into 'prep mode.'

We have been trying to figure out how that month will work for our family. My mom has graciously offered to take the other kids for the month, just not sure that's what God would have us do. We've been working on homeschooling preparation for the kids. I will probably just live in Philly that month.

Ari has recovered well from the adenoids being removed, a little cranky but understandably so. I'm actually trying to get her back on a schedule and trying to get her to put herself to sleep. It's hard because we are either concerned or feeling sorry for her. I remind myself that I love her and am not harming her but doing her good. Daddy on the other hand...just struggles with letting her cry (period). Otherwise Ari has been her happy...active self. That makes it a little harder, she just seems so normal, like nothing is wrong.

Pray for our family that we would just hear from God on how September should go. Pray for the kids to adjust and stay on track. Pray for me as I've been feeling guilt ~ maybe if I hadn't let my blood pressure get high she wouldn't have come early and wouldn't be going thru this. For Carlos that he would have peace during her crying before and after surgery. Pray for Ari ~ God can heal her before surgery and if that's His will, may it be done. If not His will, pray for success in her surgery and quick recovery, and if a trach is His will, that we would all be prepared. We hold on to the truth that God is in control and holds us all in His hands.

New Cousin

Ari is no longer the baby of the family, there is a new baby girl cousin :o) My sister Sharon, had her baby yesterday. I was her coach and cut the cord, amazing! My baby sister did so well. Ari has a new baby doll, she's just adorable. As soon as I get a pic, I will post it, of course Ari will be holding her.

Update on Ari: she may soon be out of therapy as she is progressing quickly. She is however having reconstructive surgery on her airway. So in July they will remove her adenoids and possible dilate her airway again. Then after that schedule the reconstructive surgery.

Surgery/Procedures

Today Ari had multiple procedure's done: bronchoscopy, airway dilation, endoscopy, pH probe inserted, biopsies were taken, and tubes put in her ears. The bronchoscopy and endoscopy were scopes/cameras that they put in to look at her airway, stomach, and small intestine.

Her airway was very narrow and they had a hard time getting the tubes in, so the doctor decided to dilate her airway with a balloon dilator. We got pictures of her airway before and after; in the after pictures her airway looked red and irritated. She also had a bump in the airway which he scrapped. The Dr. also saw her adenoids are large, so he wants to take them out in the next month or two and dilate her airway again. He feels she may need airway reconstruction, but wants to try to dilate her a few times before decide to reconstruct. So the down side, this is the first of one or more surgeries. On the up side, she will breathe easier.

During the endoscopy they looked at her stomach and small intestine and inserted a pH probe thru her nose to check her pH levels. The probe is in for 24 hrs, therefore both hands are covered since she wants to pull the tube out of her nose. Basically they want to see if she's having reflux problems which would complicate her airway issues. In a week she's going to have other GI test in the office and we should have results in the next few weeks for the tests and biopsies.

Since she's had numerous ear drum ruptures and fluid build up in her ears, they put tubes in. This was the simplest of all.

Carlos and I have handled this pretty well. We ended up waiting almost 6 hrs after the time they had given us for her surgery. So we were getting very frustrated, especially since she hadn't eaten anything all day. God in His greatness allowed Ariana to sleep thru most of our wait and then she woke up happy and smiling, in spite of her hunger. She was a perfect example to us of patience and grace. The nurses and doctors thanked us for our patience, even though we didn't feel like we were being patient. But the nurse said, "Believe me, you guys were very patient." So I was grateful that's what she saw, inside I didn't feel like it.

My biggest struggle was if I'd have to see her back on a ventilator and although she was on a ventilator, they were able to remove it before we saw her. She was in pain and cried a lot. They gave her pain medicine which calmed her and once she had fluids around 8pm, she fell asleep and has been sleeping ever since.

God has been so good to us in all this. He has given us so much strength, He is faithful! We are so blessed to have Ari in our lives, even if I have spent the past 2 Mother's Day in a hospital with her ;o)

Crawling!

Ari is crawling, she started about 2 weeks ago. Now she thinks she can walk, every time we hold her, she wants to get down. During her therapy on Friday, she crawled right for an outlet and I realized I had to child proof the house now. She also looked up the stairs, it seemed like she was wondering if she could climb them. The therapist also felt she was progressing quickly and may not need therapy much longer, God is great! I love it, last night I put her down in her room, which I never do, and just watched her crawl all over. She was so excited to be on that floor and just crawled around and grabbed everything.

She says quite a bit too, finally "mama" is being said all the time :o) We tell her to dance and she bops up and down. She eats all kinds foods, actually anytime I put something in my mouth, she thinks she should have something in her mouth.

We have also managed to get her on a sleeping schedule, which is nice. We still get up a couple of times throughout the night to either check on her or console her if she fusses. But it's getting better.

On another note, she has surgery on May 8th. They will be looking at her airway and decide on whether to make it wider. She also may have tubes put in her ears, since her ear drum has ruptured 3 times since November. We hope this will give us a much healthier winter.

WOW - 1 yr old

We didn't know if we'd make it and we did. God's goodness to us! Ariana turned 1 and has been getting up on her knees. Not quite crawling yet, but really showing great development. She's very vocal, she now says dada, papa, mama, bobo, titi, and DJ ;o) She makes a lot of other noises. She will be starting physical therapy soon.

The past week she's had a stomach flu, so a lot of runs and some throwing up. But she's getting over it. She's also going to be drinking regular milk, once she's over this stomach thing, so our pockets are also happy at that. No teeth yet, but we are starting to introduce more foods which has been fun.

Today is a pretty big day. We are going to an ENT at the Children's Hospital where we will find out if she needs surgery on her throat. Her doctor seems to think the pulmonologist referred her over to him because she thinks she needs it. As I always say, God has a perfect plan for her life, and although we may not always like it, we will take whatever He wills.

By the way, my dad had his surgery. He's had quite a few complications which have had him in ICU for 2wks. He was discharged after a wk and re-admitted and they had to go in again and do another surgery to block off an area that was allowing leaking. So please keep him in your prayers.

Almost 1

We can't believe almost a year has gone by. Ariana has been thru so much, yet has been so blessed. It's been amazing to see God's hand in her life, and we look forward to seeing His continued work in her and all of our children. They are all a blessing.

Ariana is going to be receiving Early Intervention (EI). She actually didn't qualify by their numbers, they qualified her for physical therapy because of her history. She has great sounds, so they felt she did not need speech. I guess she takes after Mommy in that area :o) She's still not crawling but improving. We've been putting her on the floor and working with her on getting from the sitting position to her belly, from her belly to the sitting position, up on her knees and rocking, and going around in a circle on her belly. We don't do it as much as we'd like too. She actually gets very tired from it.

We also learned during her EI evaluation that she's probably taking 15 min. naps because she's over stimulated and shutting down for 15 minutes. They told us to make note of whats going on when she's going into that shut down mode and give her alone time before she shuts down. If we can keep her from shutting down, then we can get her on a regular nap schedule. They say it's common with preemies to either have huge tantrums or avoid people around them and have short sleep periods when they are over stimulated. While I don't like her shutting down at all, I'm pleased that it's not the tantrums.

I will post new pics soon. Hubby got me a new laptop ;o) since our old one got a virus. So I'm working on getting pics on this new laptop.

Also, a prayer request, my dad has a brain aneurysm and will be having surgery tomorrow. I have been very involved with the doctors and will continue to be throughout his recovery. My mom struggles with this. If you could all pray for my dad that God would get him thru surgery giving him strength to recover quickly, for my mom that she would have the strength to care for him when needed and continue working in peace, and that I would have the strength to deal with it all: my dad, mom, sister, and kids (Carlos will be away until Monday). Thank you all for your prayers.

Clapping but not Crawling

She started clapping the other day. It was great seeing her realize if she hit her hands together they made noise.

She was referred to Early Intervention (EI). The specialist wasn't too happy that she's not crawling yet or making attempts. But that's our fault, we hold her too much ;o) So we've been putting her down on the floor more.

We have been really enjoying her health. It takes perseverance each day: she needs nebulizer treatments to prevent breathing problems, we try to turn the air purifier on and humidifier every night. It's just a daily process that at times, especially when she's doing good, it's easier to say I'll do it tomorrow. But I try to remind myself that tomorrow could be that window of a bad reaction. We are just grateful for each day she's healthy.

Today's Bronchoscopy Results

Ariana had her bronchoscopy. The pulmonologist referred her to an ENT (Ear, Nose, & Throat)doctor. She was diagnosed with Tracheomalacia before she left the hospital after she was born, and today they added Laryngomalacia to that.

Definitions found online:
Tracheomalacia in a newborn occurs when the cartilage in the trachea has not developed properly. This causes the wall of the trachea to be floppy rather than relatively rigid, as it is supposed to be. http://tracheomalacia.org/

Laryngomalacia is the most frequent cause of stridor or noisy breathing in infants. It occurs as a result of a floppy portion of the larynx (voice box) that has not yet developed the strength to provide rigid support of the airway. During inspiration, negative pressure is created through the larynx, which results in a collapse of these structures into the airway and a narrower breathing passage. The partial obstruction is the source of the noise with breathing. http://www.cssd.us/body.cfm?id=464

What does all this mean to us...not sure. As of right now we are doing everything we are suppose to. In the past 2 weeks we've stopped taking her out, unless we have too. Carlos and I have been alternating on going to church and we were so grateful to have Megan stay with her one Sunday and women in our Care Group volunteer to take turns so Carlos and I can go to church.

I didn't think to ask our Pulmonologist why an ENT doctor, I understand this affects the upper airway/throat area but everything I've heard and read tells me she needs to grow out of this. Unless they felt she needed a stent or a trach; which I hope she needs neither. Aside from the frequent hospital visits, she's eating fine, gaining weight, and growing (as you can see from the pics) so we will see.

I know the ENT is from CHOP (Children's Hospital of Philadelphia) and I'm just waiting for a call from them. They will do another bronch on her and then decide what we need to do. Thank you all for your continued prayers. Kathi, I hope you don't mind me quoting you, but you posted, "It is truly amazing to ponder that while the Lord is literally sustaining the universe, maintaining the orbiting of planets, and keeping stars suspended in space, He is intimately aware of ALL the details of our lives." And it's amazing truth...He is aware of every detail in Ari's little body. There is no better place to be, than in God's hands.

God's Awesomeness

God is so good to us. On Sunday I gave Ariana Tylenol, but the only bottle I had was a small bottle from the hospital which instructed to ask physician for dosage. Well I look at old discharge papers which told me to give her 3ml. I gave her 3ml in the evening and at bedtime did not have enough to give her a full 3ml dose, so I gave her what was left.

First thing Monday morning I had Carlos go out and buy a new bottle of Tylenol and figured I'd read the instructions (just because - actually it was God). It said 1.6ml for children 2-3 yrs old. Well I was confused since the discharge papers were from when she was 8 mo old. She went to her doctor's appt and I asked her doctor, she advised me that she should be taking 1.2ml and was very disappointed that a resident did not know how to calculate Tylenol for infants.

When I learned that it was the wrong dose, I was so thankful for God's hands on Ariana. That was God! I ran out of the Tylenol on Sunday because she could have been overdosed if I had given her that second dose. God is amazing. He continues to show his love for Ari and keep her in His loving arms. God's grace is sufficient. He's keeping us safe even when we don't see it.