Sleep Study Results

Well, Aryanna survived her first, but unfortunately not her last, sleep study.  She and I arrived at the sleep center at 7:30 and got checked in and settled in our room for the night.  After I fed her at 8:30 the nurse came in and hooked her up to this whole mess!

She was SUCH a trooper.  She hardly fussed at all while she was getting hooked up and really only freaked out once - rightfully so - when the nurse ripped her tender grip (the little stickers on her cheek that hold her cannula in place) off her cheek while trying to fix her cannula in the middle of the night.  The mama bear claws may have come out a little at that point.  They monitored her oxygen levels from the control room while she slept.  The nurse said she ended up being on a 1/4 liter of oxygen most of the night.  They wanted her saturation to stay above 95 and she would get up to 98 on oxygen, but when they would shut it off she would dip below 95.  So we'll continue to turn off her oxygen while she's awake and leave it on while she's asleep.  And we'll have to do another sleep study whenever the pulmonologist decides it's time to try again (we haven't talked to him yet to know this detail).  We take both babies back to the pulmonologist on December 19th so maybe Anthony will be ready for all this fun by then.

We left the sleep center by 6 am and this girl was wiped out when we got home!

Thanks for all the prayers - keep praying that Anthony and Aryanna's lungs would continue to develop and that they would continue to gain weight and grow healthy lung tissue.

Prayers for Preemies, Please

We write to you tonight with a couple of prayer requests.

- Tomorrow night (Friday) Aryanna and I will be having a slumber party at the sleep clinic.  She's been off of oxygen while she's awake for the last few weeks and if everything goes well with the sleep study she'll be off oxygen all together!!!  That means we would get to see this cute face sans tender grips (the little stickers on her cheeks) and nasal cannula all the time!

Pray that we would both be able to sleep tomorrow night - the poor thing will be hooked up to lots of stuff from the sounds of it.  Also pray for God's healing in her lungs and that she would no longer need oxygen.


- Also, please pray for our friends, Joy and BJ who have the 30 weeker twin boys.  They're still in the NICU and Luke has had lots of fluid in his belly lately.  They discovered today that it's fluid leaking from his lymphatic system.  This is very rare and they don't have a lot of answers right now.  Pray for the supernatural power of Jesus to heal his little body and pray for peace, hope, and comfort for Joy and BJ.  Also pray for Logan that the pressure on his oxygen would come down so that he can start oral feedings.

A & A's Bolivian Heritage

What better way to recognize Hispanic Heritage Month (September 15 - October 15) than by celebrating Anthony and Aryanna's Bolivian heritage!  Papá Antonio and Mamá Costa (Grandpa & Grandma Guillén) as well as Tía (Aunt) Daniela, Tío (Uncle) Remberto and cousin Camila sent the twins some presents from Bolivia and mommy and daddy of course took lots of pictures.

Don't they look adorable in their hand-made sweaters, booties, and hats?

They also sent these beautiful "awayos."  Here's how some Bolivian women use them to carry their babies - kind of like a wrap.

They got other cute gifts that aren't pictured here, but in these pictures you can see the long pieces of cloth (chumpi) on the right that Bolivian babies are traditionally swaddled in.

Here's an example of how a baby is swaddled in this cloth: 

We look forward to continuing to teach Anthony and Aryanna about their Bolivian heritage.  We're trying to incorporate Spanish as often as we can so that when they start talking they can communicate with their Bolivian relatives.  We haven't been the best about this so far, but I am working on learning children's songs in Spanish and we hope to speak to them on a more consistent basis in Spanish once they start talking rather than just here and there like we've been doing.  

Here is a look at the natural beauty of Bolivia.  We can't wait until Anthony and Aryanna get to experience it themselves.

4 Months Old

Anthony and Aryanna turned 4 months old (6 1/2 weeks adjusted) on Tuesday, September 25th and they're learning to share already!

They also started sleeping through the night (10 hours) a couple weeks ago!  Can I get an AMEN?!

We went to the pulmonologist (lung doctor) about 2 weeks ago and he had us turn their oxygen off while he did their exam.  At the end of the exam the nurse hooked them up to the pulse ox and if their saturation was above 95 they could come off of oxygen during the day while they're awake.  Aryanna's was above 95 and Anthony's was 94 - so close!  So Anthony is still on oxygen at least until December 19th when we go back for his next appointment, but we did get to turn him down from 1/2 a liter to 1/4 of a liter.  We also turned Aryanna down to 1/4 liter while she's sleeping and she gets to be oxygen free while she's awake!  I have to take her to a sleep clinic on October 19th and she and I will stay the night there so they can monitor her breathing while she's asleep.  If all goes well she will come off oxygen completely!  If not, we'll leave her on oxygen while she's sleeping and she'll go back to the pulmonologist with Anthony in December and we'll re-evaluate then.

We had the AEA come out last week for another developmental check and they're doing great!  For gross motor they're at 4 months, for fine motor they have skills between 2 and 4 months, cognitively they're close to 4 months, for language they're in the 4 - 6 months range and their social skills are at 3 months.  So, developmentally they're between their adjusted age and their actual age which is right where they should be.  They're both doing great at holding their heads up and they're so full of smiles these days!  Love waking up to these smiles in the morning - makes my day!  (We can't seem to catch Anthony on camera while he's smiling).

Anthony and Aryanna continue to grow like crazy!  Anthony now weighs 12 lbs 15 oz and Aryanna weighs 10 lbs 6 oz!  Anthony is on the weight growth chart for his actual age now and Aryanna is so close!  While we're thrilled they're making such great progress, we are keeping an eye on their weight gain because their reflux has gotten a lot worse.  Every day or two Aryanna throws up an entire feeding.  Sometimes it comes through her nose and makes it hard to breathe (scary for her and us).  And sometimes you can just tell she is in pain :(  Anthony sometimes fights eating, arches his back, cries and does this awful cough/gag :(  They've continued to gain over an ounce a day so it hasn't affected their weight yet, thankfully.  Our pediatrician likes to stay away from anti-reflux meds if possible because they can have some nasty side affects, but it seems to be getting worse and they're eating less so I think we'll have to consider it.  Please pray for them that they would continue to gain weight and that they wouldn't be in pain.  Also please pray for patience for us as it's frustrating to see them in pain and it takes a long time to feed them when they don't want to eat.

I went back to work this Thursday and it's been hard not getting to see their sweet little faces all day long :(  Thankfully I seem to have a great group of students this year and if there's any consolation, it's knowing they're in good hands with daddy.  We're so blessed that Jose is able to stay home with them while their immune systems and lungs are so fragile.

Here are some (okay, a lot of) pictures from their 4 month photo shoot:

Aryanna's personalized flower clip from our friend,
Shawn (Divine Creations by Shawn)

Tutu and tube top also from our friend, Shawn!

"What's up bro?"

"Oh, you know, just waiting for mom and dad to get
us out of this basket and feed us."
(P.S. - Do you see the bellies on these kiddos?! Love it!)

RSV Lock down

As we enter cold and flu season, this family is entering what's known in the preemie world as "RSV lock down."  Anthony and Aryanna both have chronic lung disease because of their premature birth and their prolonged time on oxygen.  Because of this and because of their weakened immune systems due to premature birth, they are extremely susceptible to contracting RSV (respiratory syncytial virus) and other illnesses (Aryanna has already been sick twice since she's been home even though we've been super careful).  When adults or healthy older children get RSV, the symptoms are usually no worse than a cold.  But for our little ones it could amount to another long hospital stay.  It can even be fatal in severe cases.  Here are some graphics that help illustrate why RSV is such a risk for our 29 week preemies:

https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDKDjyEZMOCGas-QKzBCFDK0s65tnm8xHlBIV1_89RO_W_76AlBfLTImI4YGIKctpo05pmQIRouhYAT07BZcL86j7tFN6ozT4rkNfR1MLcxXXgxkgS7NCqS_lpEoX-43hquIO4q3YK-nsJ/s1600/rsv2.jpg

http://www.thesuburbanmom.com/wp-content/uploads/2011/11/RSV-preemie-lungs.jpg

 As you can see Anthony and Aryanna just aren't equipped to deal with a virus like this so these are some of the precautions our pediatrician and pulmonologist have recommended we take from now until the end of RSV season (usually October through April/May):

1.  They will be receiving monthly Synagis shots to help prevent RSV/lessen the severity of it if they do get it.  Thankfully, our visiting nurse can give the shot to them in our home so we don't have to take them to the doctor's office to get it.
2.  We will be limiting visitors (even more so than we already have).  The only people who will be able to come over are immediate family who have had their flu shots and whooping couch vaccines and haven't been sick and our in-home visiting nurse and OT.  We hate that most of you won't get to meet the twins until they are almost a year old (we want to show them off!), but we feel it will be worth it if it keeps them out of the hospital.
3.  We won't be able to take Anthony and Aryanna to any public places other than doctor appointments (so grateful we got the majority of those over with before the start of RSV season).  That means no trips as a family to the grocery store, the mall, or even church.  We are thankful that my parents and my sister, Bri are available some Sundays to watch the twins so Jose and I can go to church together.  They watched them this past Sunday and it was so nice to be back at church (1st time since they came home!)
4.  Since I work in one of the germiest (is that even a word?!) places ever - a school - I will be taking a shower and changing clothes when I get home from work every day before I go anywhere near the twins.
5.  Sanitize, sanitize, sanitize.  We have hand sanitizer in every corner of our apartment and everyone that comes over knows to use it before they touch Anthony and Aryanna.

Would you join us in praying that God would place a hedge of protection around Anthony and Aryanna and that they would make it through RSV/cold and flu season without getting sick?  Also pray for Jose and I that we wouldn't go stir crazy and that we would be reminded that this is just for a season.