~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.