4 Years Old

Happy 4th Birthday!

Ari has been doing so well over the past year.  She had her tonsils removed about 2 months ago due to sleep apnea...we hope this will be her last surgery.  Since then she' been sleeping better and eating more too.  Ari knows many colors, her speech is good, but we are still working on potty training.  She's improved with her eye contact, she use to look to the side many times when she spoke to us, but that has gotten much better.  We are still waiting for 2 teeth to come in, that should have come in around age 2, but she's not missing them!  She's always hungry, her famous words, "Mommy, I'm tho ungry" after she has just finished a slice of pizza, yogurt w/fruit, and a muffin (yes, I know, not a very healthy meal). 

Although I see areas where she is delayed, she has made so much progress and fits in well with kids her age.  Soon she'll be evaluated for pre-school...Yes, pre-school!  I can't believe how time has flown.  I remember the days in the hospital with her, not knowing if she would make it another day and through God's grace, here we are 4 yrs later.  God is so good!

Ari is the Family Clown, very silly.  She truly keeps us laughing.  She also thinks she's the Boss and we are working on that area ;o)  We are forever grateful to all our family and friends who have prayed for Ariana and our family.  Prayer is Powerful!  And we praise God for this journey!



3 Years Old!

Our little miracle is 3 years old today! What a blessing, words cannot describe how grateful I am. I remember this night 3 years ago so clearly up until she was born, then things are a blur. Carlos was in PR visiting his family and I was having contractions. Since I was only 25 wks I ignored them thinking it was nothing. When they didn't stop I called the doctor and was told to go to the hospital. I have high blood pressure and that caused my placenta to rupture. At one point my blood work showed my blood was not clotting, Ariana was breach and they had to do a c-section, but were concerned that my bleeding would not stop. I remember laying in this room all night (with nothing for pain, since they wanted to do as little as possible) and looking out the window, watching this clock in Camden and praying and praying.

At 7:10 Ariana was born...naturally...she was fiesty from that moment, they didn't have time to get the anesthesiologist in so they could do a c-section. All I remember after she was born was a white haired man squeezing this balloon like thingy that basically was breathing for her and them brining her over so I could see her and they took her away. Brenda, my sister in law was there, she called Carlos and gave him the news...his flight was leaving PR. I can't imagine what he felt.

Ariana had awesome nurses and doctors at Cooper University Hospital. I will always remember Katie, Donna, and Ann - her primary nurses who cared so dearly for her. The amazing respiratory team that dealt with her breathing tube issues. She had laser eye surgery at 2 mo that saved her sight...Thank you Lord for Dr. Wasserman! And Dr Ian Jacobs, her ENT who performed her airway reconstruction a yr and a half ago at CHOP. And for our family and our church we are so grateful for their support through all this.

Ariana was in the hospital for 3 months before coming home. I remember coming home without her and seeing a little dress we had for her and crying. She's just an amazing little girl. For her I'm so grateful. God has been faithful and good to us. Hebrew 13:5 "Never will I leave you, never will I forsake you." Only because of His mercy and grace can I write...

Happy Birthday Ariana! Baby Girl...We love you so much!

*Last Post for this blog...we now have a family blog where I will put updates on Ari.

http://ourblessedblendedfamily.blogspot.com/



A Fellow Blogger & Update

I've been following this blog http://raisingolives.com/ and it has really blessed me with great information. She's advertising a giveaway for an air cleaner and since I'd like to have one with a house full of asthmatic kids and our little preemie...anything to improve our air quality. Plus, I really like her blog so I figured I could share with you all too.

On that note, soon I'll move Ariana's information to our family blog, http://ourblessedblendedfamily.blogspot.com/ - Papi isn't ready to let go of this blog yet, which I understand, but there's so much to talk about all the kids and our family as a whole.

As of right now, we've decided to put a hold to doctor visits for Ariana, so we're not seeing the feeding team.  We are going to see a nutritionist, not in the medical field, someone who works more from a natural perspective.  Ari is scheduled to see her ENT, who did her airway reconstruction, in 6 months.  Since the airway could have webbing as she grows, causing breathing problems.  And even that we are praying about how to continue, since if she did have issues, they would be evident.  We'll just keep taking it a day at a time and take in each day we're so blessed to have Ari and to have her so healthy. 

Nutrition? Just look @ those cheeks!

Ari has been doing well.  Her last visit to her ENT was great, they decided they would leave her tonsils alone for now.  Her GI doctor referred us to a Nutritionist and Feeding Team and "labeled" her as "failure to thrive" because of her slow weight gain.  We saw a Nutritionist who didn't seem too impressed about our choices on what we feed her: no milk and no soy. 

Over a year ago we stopped milk and found a significant difference, very few episodes of asthma and congestion. We don't do soy product because of all the hormones and long term effects. So it limited her in what she could offer to increase Ari's weight.  She mentioned that she was not in a danger zone, but if she lost weight or continued to not gain and reached this "danger zone" they may want to put a feeding tube in.  Although she stressed she wasn't there, just the thought of it has really made us think about whether or not we want to be in this "system."  We want what's best for our little girl, but we're not sure they are considering all things here.  And why do I have to tell a Nutritionist the negative effects soy has, shouldn't she know this? 

So we are praying and asking God to show us where our girl should be and we know He has not labeled her "failure to thrive" but "victorious!"  Ari also had full medical coverage due to her prematurity, which has run out, therefore her medical bills are rolling in.  There comes a point where we need to be wise, not only for what's best for her (and that doesn't always mean whatever the doctors say) but also wise in our finances.  Praise God for His sovereignty...He's Got This!

Strong-Willed Child

A few weeks ago, my brother-in-law took his boat out and Carlos, Aliyah, and Ari joined them.  Ari couldn't wait to get in the water. She has very little fear and it worries me at times. It's probably good I didn't go on this outting because I might have ruined it with my worry about them going in the water. 

Recently I've been thinking of God's awesome power, specifically in Ari's life. I've thought of all she's been through and she's been a little fighter. God has reminded me of all the tubes and wires she's been hooked up to, how tiny she was, and looking at her now ~ so strong-willed ~ I can only be thankful.  In tears the other day I thanked God for letting us keep her.

So how do we draw the boundary lines of structure and discipline...it's hard. She wants her way and will fight for her way.  Unfortunately, she wins too many times, especially with Daddy and siblings...not so much with Mommy of course ;o)  We're working on it.

I started a family blog, http://www.ourblessedblendedfamily.blogspot.com/ so soon I'll be ending this blog and will keep you updated on our family blog as to how she's doing. There's so much I want to remember and tell family and friends about our whole family, so I figured I'd start a blog for our family.  Plus, I've been so bad at updating this blog, and thought if I keep one with much more to say, maybe I'll be better at it...we'll see.

Ari's Bronch ~ Appts and More Appts

After Ari's last bronch her ENT sent her for a sleep study. We get these results next month. She was not put to sleep with any meds (as many have thought when they see the pic), she was really tired after about an hr of getting wired...the tech was great, playing games with her throughout the whole process. He'd have her pull the wires from around his neck and he'd sing this song, "Pull and pull and pull and pull and pull" and she was cracking up pulling. So by the end, she fell asleep and although her normal squirmy/restless self, she slept all night. I slept for about an hr...I was so worried she'd pull the wires while moving around.

After her last bronch they said her airway had grown from a 3.0 after surgery to a 4.0. Now if you're keeping track of this you might have read that her airway was 6.0 after surgery: basically they perform surgery to enlarge her airway and they also stretch it while they are in there. So after all the tissue returns to it's normal state, her airway was a 3.0. It amazing me to think her airway at a yr old was between a 2.0-2.5 which they said was a newborn airway. So we Praise God for our answered prayers - her airway is growing nicely.

They also saw that her airway was irritated and red, so they assume reflux and sent us back to the GI specialist. The GI specialist is not concerned about the acid reflux because she had a 24hr probe put into her stomach a yr ago which showed no reflux. But he was concerned about her weight - she's 22 lbs and was 21 lbs last yr after surgery - so he's labeled her "failure to thrive" and referred us over to nutritionist and a feeding team. She does struggle with chewing properly and we usually don't get her go sit and eat a whole meal. She will hold food in her mouth many times until we let her spit it out, and yes we've tried it not being an option to spit food out and she will hold it in her mouth for very long period of time.

He also advised we give her 4 cans of Pediasure a day. Now we stopped giving her milk over a yr ago because of her respiratory issues and feel like it made a huge difference and decreased her asthma episodes tremendously. (Which may just be the reason she hasn't put on all the weight they think she should have) We thought we'd try slowly, gave her about 2 cans for 2 days and she had a fever by day 3...which has been her first sign of showing respiratory issues (meaning the onset of asthma). Sure enough we've dealt with a cough now for about 2 wks and giving treatments now for 3 days.

They also said her tonsils were enlarged, so we see the ENT for follow up next month and I'm assuming he'll want to take them out. So I'm feeling like it's a whole lot of appointments. We have been praying and asking God for direction on when we just stop and trust Him. He has brought our little ex-preemie through a lot and and in the end ~ God has brought her through this journey!

So Much to Say...

Our little Ari is growing up fast. She loves to blab and say so much, some of which we understand and much of which we don't. But it's interesting how she knows what she's saying and as time goes on we learn her language and realize what she's been saying all along. She's so silly, loves attention, and making us all laugh.

She loves, loves, loves water!!! She enjoys climbing on anything that will allow her to reach faucets and loved the shore last week. She did not want to come out of the water. She also walked over to people sitting next to us and made herself comfortable and talked/blabbed to them. They thought it was the cutest thing, I on the other hand was a little concerned at her level of comfort with strangers. Mikayla joined her since they had a little girl, the grandparents thought it was so cute that they would just go over and talk to their granddaughter. Their granddaughter did not seem too impressed. Mikayla let them know she was homeschooled and they asked me how they socialize. Well I told them I let them out to play on Wednesday, LOL, I seriously told them about all the opportunities they have to socialize. Not sure if you all caught on, but my girls went over to them to talk...not to boast in anything I'm doing but Praise God that He has given them that comfort to reach out to people AND SOCIALIZE ;o)

Health Update: She's been doing great. She had a few episodes of croup but nothing that required us to go to the hospital. She goes in next Friday to have another bronchoscopy, they will put the camera in to look at her airway and make sure all is well. So hopefully I will not keep you all waiting for an update on the bronch and will try and post about the results.

~Hope you're all enjoying your summer!~

2 Years Old!

2 years old...when she was born 2 yrs ago, it seemed like the 3 months in the hospital would last forever. We look at her now and are so blessed and grateful to have her. God's mercy in her life is so evident and His grace has abounded!

Now she's developed/learned this "grouchy" look with her brother's help, of course. The lips come out and you just want to kiss them...except she's exhibiting 'not so good' behavior. She's a tough cookie, in more ways than one.

She's not gaining weight. But the doctor says they see this where they are on the move and burn up their calories. She's been at her same 20 lbs since September or so. She's a real busy body, she keeps us on the move, loves to put things in the tiolet and trash. I find all kinds of things in both areas, always fun digging things out. We have to constantly watch her. But at the end of the day, we can only be grateful that she is strong and healthy.

Finally~Another Tooth

Her 3rd tooth is finally coming in, it's the first one on the top. For those who don't know, I've had some concern about my near toothless child. She'll be 2 in March and is going on to only her 3rd tooth.

I took her to a pediatric dentist, who did an xray to see...she has teeth!!! And she also told me, "No child has ever been born w/o teeth." My mom jokingly asked if I was taking her to the dentist to have dentures made, haha, mom. I've just never had or heard of a child with 2 teeth and almost 2 yrs of age. But I guess this is a good lesson in patience.

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!!!