Blessed with Health

Our little Ari has been doing so well. About a month ago she had croup and she made it through without having to go to the hospital. She was able to maintain her oxygen levels and was comfortable, in spite of her noisy breathing. We have been so grateful that the surgery was a success and that she has not had one hospital visit this winter. Last year, if you all remember, she was in the hospital every month from October through January. We praise God for His goodness to us.

Ari has a lot to say these days. She mumbles a lot, as if she's having a conversation but she continues to say a lot of words too. I've mentioned her love for "Dora" so she has a pretty good vocab with "Dora" show words, except for "Dora" she doesn't say that. She says, "I did it, Boots, and for Swipper, she goes, "Ooooooh." It's really funny. She says, " I don't know, poopy, apple, bobo, thank you" (which is pacifier), and all the kids names, including my name. Carlos calls me and she repeats him. She signs a lot of things too, like eat and please. Oh yeah....and of course she says, "No" and "Mine."

She's still a little wobbly with her walking but she gets around well. Her hair is getting long and her bald spot, from lying in the same spot after surgery, is growing hair. She is a real busy body now. We are still waiting for more teeth. She has two teeth, we took her to the dentist, they took an xray and said they are all there (as if they wouldn't be). But I was still worried it was taking so long. The dentist said she'd have a heck of a teething time, since they all look like they are coming in at the same time. She'll be 2 soon. I'm constantly amazed when I think of this road we've been on. We've learned so much. One of the many lessons have been the importance of depending and trusting in God, He has never left us, and has carried us through this.

All is Well

Today Ari's bronchoscopy went well. All looked good. The only thing I didn't get a chance to ask the doctor was about her airway size. He said he used a 3.5 tube size and after her surgery she was a 5.5/6, so it has shrunk significantly...or so it seems to me. Her size prior to surgery was 2.5. I guess I was focused on all the other information he gave me about no swelling, her next bronch, next office visit and after he left, it dawned on me that her airway size was smaller again. I guess it didn't concern him since the graft is in place and they did mention it would be normal for the tissue to shrink but not back to it's original size. And her ENT, Dr. Ian Jacobs, has been amazing with her care. He's been amazing at following up and even his call home to see how she is has been so comforting to us. We are so grateful for his care for Ari. So all is well.

Check Up

Tomorrow Ari will go to CHOP for a bronch. They want to take a look at her airway and see how it's been healing since surgery. She has been doing really well. Tomorrow at worst, they may decide to dilate her airway. They say the tissue will have a tendency to shrink around the graft (piece of cartilage put in to widen her airway) that was put in place, so she may need to have that tissue stretched from time to time to keep it open properly. I hope I explained that properly. I read somewhere that one patient had to go in a few times to have tissue lasered around the airway because it was webbing, causing some obstruction in his breathing after the reconstructive surgery. Praise God, nothing major, all minor procedures compared to what she already had done.

She had her 18 mo. check up and all was great. The only concern was her teeth, or should I say, "tooth." Although she was a preemie, her corrected age is over 12 months, and by now most kids have more than ONE tooth.

She's walking more and got her first pair of walking shoes. We went to Olly kids, which I must say I liked. We got her the Robeez shoes and I really like them. They have a rubber bottom (they also come in leather bottoms for non-walkers) but she walks really well in them.

Dora is her favorite character. Sometimes the TV is off and I walk by it with her and she will point and sing, "We Did It." So I've been playing it a little less, I'm not crazy about her being so into it.

Continuously Blessed!

Gained 1st lb

Ari has been doing really good. She gained her first pound in over 6 months. She has finally hit 19lbs. The doctor said now that she's not burning calories trying to breathe, she will gain more weight. Although she's been a picky eater, she still gained the weight, so that says a lot.

She has been walking more and has been much more content. My mom babysits her on Wednesdays while we go to our homeschool co-op and she was saying she seems so much more comfortable. She felt she wasn't fussy as she usually was. I didn't think about it, but it was true. She seemed to get more easily frustrated before her surgery. So we're just thinking she must be very comfortable now.

She had a runny nose last week. We saw the doctor this week (which has been so amazingly great) and he asked about the runny nose. He said it appears she had a cold, but she didn't get croup as she usually would last year. Last year it started in September too. Something else I didn't even think about. I'm already taking this all for granted, it seems like others are pointing out the differences they see. I'm just happy to be home with her.

This week she was also discharged from Early Intervention...another big step. We all felt she no longer needed the services, so we're all done with that.

We are so so grateful to have our baby healthy and strong. God has been so good to us. All the people He's used in Ari's life, in so many different ways, all so important, from doctors down to friends praying to people who cleaned her rooms in the hospital...we have been blessed.

After we saw her first hospital billing statement to our insurance company, we called her the million dollar baby ~ it was over a million. This surgery I'm sure was costly too. We have been so fortunate to have insurance that has covered her medical needs...just one more thing we will be eternally grateful for. So many burdens lifted!

~No Place Like Home~

We are home! It is such a blessing to be home 1-2 weeks before our expected time. We were discharged yesterday morning. We came home, had lunch, and slept and slept. It was great being home in our own beds, sleeping without interruption. Carlos worked from home half the day, so he made sure we got to sleep, which was just great.

The day quickly got a bit hectic with dinner, laundry, and kids (& a hubby) with wants and needs. Later that evening a good friend reminded me that "I was ahead of the game coming home early" so just to take it one thing at a time.

Last night was a bit of a challenge, Ari decided she wanted to be up at 2am and was not happy. Carlos brought her to bed with us and she tossed and turned and fussed. So I checked her oxygen levels and she made me nervous because her levels were in the low 90's. It wouldn't be bad if that was her base, but at the hospital she was in the high 90's. I gave her a treatment and it seemed to help. She then slept in her crib again til about 4am, started crying again, so I brought her to bed with us. Then she was up at 630. We will have to work on getting her back into a normal schedule.

This morning we are working on getting back into a normal homeschool schedule. I'm taking a moment between children to update you all. I tried to update you all yesterday a few times and then got busy. Big difference being home from the hospital.

She will see her doctor again this week and another doctor next week. In 4 wks she will have another bronchoscopy done to see how all is healing. That should be a one day thing, not overnight. They say they may have to do some stretching/dilating in the future, but we'll see.

~It's good to be home. Thank you all again for your prayers.

Bronch Went Well

Home on Monday! They need to wean her off the Valium over the weekend and then we are free to go. She has a little swelling which was expected, all else looks good. We didn't even have to go to icu.

Ari has been so pleasant to all hospital staff, they love her here. She even had an IV put in last night and just laid so still and quiet. She takes her treatments and doesn't give them a hard time. That's been great to see, she's had such a sense of peace throughout this time. In the beginning many had prayed for "peace that surpassed all understanding" and that prayer was answered.

Bronch Tomorrow

Ari has been doing really well. She's been talking more, getting back on her feet, and moving around. First thing tomorrow morning, they will do another bronch to see how she's healing. The doctor said he may dialate her if he finds the airway is tight, but if all is good we can go home as early as this weekend...wooohooo!

Last night Carlos got back from his business travels and came to the hospital. I was able to get some extra rest and take a long shower...it was great. He hung out with us and worked from the hospital. It was such a blessing having him here, I don't know how I would of gotten through today had he not been here. Ari and I go to the playroom and walk around the hospital, I read her stories and we watch a lot of Dora. After a few hours of that, I don't know what to do with myself.

The rest of the kids have enjoyed a week with friends; we are so blessed to have friends who can take the time out to be with our kids. We have been served greatly by our church family and are so humbled each time they extend themselves to us and for us. God has shown a very small piece of His grace through each of the families that have extended themselves. I say very small piece because God's grace is so profound. When I think of these acts, that are so big to us, I'm blown away by God's love for us.

Doing Really Well

Ari continues to improve. She's been talking more. She's almost 100% back to her old self. Today she was so giggly, I enjoyed making her giggle. She has been in the playroom, she really enjoys the kitchen and plastic foods. Every now and then the 'Child Life' staff would take her, which was really nice.

Last night my sister in law came and spent some time with her. It was such a huge help to have someone sit and play with her while I got some other things done. I also got a meal delivered from dear friends and that was wonderful. I just found out today that I can get a 'sleep room' for a nap time. They are down a small quiet hallway, so that will probably be one of my stops tomorrow...a sleep room! I'm exhausted! Last night she didn't go to sleep til almost midnight and was up at 5am. Some nights are great and others aren't, and usually the great ones are when Daddy is on duty. Lucky Duck ;o)

Carlos was away on business and returns today, I'm sure Ari is missing him. God continues to carry us through this. Friday she has a bronch which will tell us when we can go home, I'm hoping early next week...lets see, Monday would be nice!

Tantrums Anyone or Everyone

Carlos had his weekend shift with Ari while I went home to be with the rest of the kids, which I have mixed feelings about. I was happy to be there for them but they were very sensitive and emotional. We visited Ari on Saturday and I think it may have stirred them up a bit. I had cranky children all weekend. I do however realize now I tried to do too much. Carlos on the other hand did a great job with Ari...he got her drinking fluids and having tantrums! Signs of health ;o) They are weaning her off of strong meds and she's doing well with that too.

Sunday after church I took Mia to get her glasses and she couldn't get the one's she really wanted so she started crying. That just set me off, I felt bad because I wanted to get her the one's she liked but we had to stick to a budget. And we were all just touchy with all that is going on. So I started to cry, Aliyah got teary, Kayla was not showing any emotion (just like her mom), and DJ was struggling all weekend. The lady helping us felt so bad and the manager measuring her for the one's she didn't want asked if everything was ok. I apologized and told them it wasn't just about the glasses, we were just an emotional family right now.

While we waited I tried to get them something to eat and everyone was just having a meltdown in the middle of the mall, the exit seemed so far. I called my dad because I just felt like I couldn't do it and he told me to go right over to their house. Mia and I had a good conversation on our way there. I had to explain to her that it wasn't her that made me cry, it was everything and it just happened at that moment. My sister stayed with the kids and fed them (a great meal by the way that we got from a church family) while I took Mia back to get her glasses. When we got there, they gave her the glasses she actually wanted...amazing! She was so happy. God showed us so much in those few hours.

Today Ari continues to do really well: eating, drinking, playing and laughing more. She's not talking or should I say "blabbing" yet, but she's had a few moments of sounds. It's coming. She tired me out already. We walked around the floor a few times. I put her down and let her walk while I held her, she wanted to run. She's very skinny, so we need to plump her up again, but I'm sure she'll gain it back and then some. Friday they plan on doing another bronch just to see how it all looks. That will be our next big hump. Thank you all again for your prayers!!!

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.

10 Months

Ariana has been doing well, but the night before last came down with a fever. I had been telling myself I needed to post on her blog about how well she was doing. I didn't want this to become a "sick again" blog and before I got to it...she's sick. I'm just thinking it's an ear infection or something like that. So I'll will talk about her recent accomplishments.

Ariana has been sitting up without support. She loves to sit and play with her toys. We never thought about how it would actually look to see her do this, so we're amazed by it. She has been interacting more and more with everyone, especially the kids. They make her laugh, actually crack up, all the time. We think about she'll be crawling soon and can't really imagine it. We can't believe March we'll be celebrating 1 yr.

Hospital Again

Yes again. Monday we went to the doctor for a follow up from last weeks hospital admission. Ariana was wheezing so the doctor put her back on steroids. That night she was not able to maintain her oxygen levels above 90%, so we put her on oxygen (thank God we still have some). I was giving her treatments every 2-4 hrs trying to keep her airways open til the morning to get her to the doctor. I knew I was doing everything they would do in the ER, I called her doctor just for approval that what I was doing was fine. By 4am she was on 1.5 liters of pure O2 which is pretty high and she was still having levels in the low 90's where usually they would be 100% with any amount of O2. So I knew it was time.

I will admit, I started acting silly. A little annoyed that I was making this trip again. I started telling Carlos I'm buying a bright orange sweat suit for our hospital trips, so they know who we are and that maybe we could even get a permanent bed. I was ridiculous, I guess after being up most of the night and after the various trips already made...I wasn't happy. Then I got stopped by the police on my way for speeding, but he did let me go as he saw Ari in the back seat with a monitor and oxygen.

She's still in the hospital. She was diagnosed with pneumonia and RSV. Another frustrating thing since she receives a vaccine for RSV (respiratory virus). This virus is dangerous for babies under 2yrs old and since she was a preemie and has tracheal malaysia (narrow airway) it's more troublesome. She's is doing better, just not able to maintain her O2 levels while she sleeps. Although we have O2 at home, they generally don't release babies who require O2, so they want to be extra cautious and we're ok with that.

God is awesome and has a perfect plan, as I always say, in spite of what it looks like. I need to be reminded sometimes when I feel frustrated and helpless. I loose focus of where our help comes from...the Lord, we begin thinking we're the one's who have all this under control. Sometimes God has to remind us - if it weren't for His grace.

Happy New Years...In the Hospital???

Yes, in the hospital. Around 3am Ari started the croup cough. We tried giving her treatments but they didn't help. So by 5am I took her to the ER for what I thought would be a morning visit for medication. The doctor decided they wanted her admitted since the last time she ended up back in the ER 2 days later to be admitted. They are also going to try and speed up the bronch (camera down her throat) to look at her throat and lungs.

Carlos is on hospital duty, since I was with her in the morning hours and will spend the night with her. She's very cranky, which I think she's just over stimulated and tired. This morning I realized how tiring hospital lights can be.

I wonder why God has chosen for us to start the year off this way, I know His plan is perfect in every way...but I don't always get it. But in an odd way I can only be grateful...