Sunday Afternoon Nap

Home Again

After 11 days she is finally ready to come home!  The speech therapist came in to feed Jordyn this morning before I got there and then wanted to come back in the afternoon to try feeding her a bottle with just breastmilk and no bananas mixed in.  I fed Jordyn while she listened to her swallow with a stethoscope.  Jordyn did just fine, which really surprised the speech therapist because she has never had a baby with a paralyzed vocal chord pass a swallow study and do so well with straight breastmilk.  She kept listening again and again because she just couldn't believe it.  She doesn't know how Jordyn is doing it, but she is making it work and doing great!

I was worried about how our night would go because Addi hasn't been sleeping very good lately and Jordyn's schedule is all messed up from being in the hospital, but it  was actually a really good night.  Both girls slept great!  I think they missed each other.

Swallow Study

The Speech Therapist wanted Jordyn to have a swallow study done before we tried to give her a bottle again.  They strapped her into a chair with this x-ray machine right next to her and the therapist fed her a bottle while snapping pictures of her swallowing.  The bottles had  in them so the liquid showed up on the x-ray and we could see which way the milk went.  The therapist fed her a bottle that was the consistency of breastmilk and then one that was more of a nectar consistency (which is what we have been doing with the bananas in her milk).  I've been concerned how she would do with a bottle again after being on the ventilator and having a tube down her throat.  The doctors told me that some babies have an oral aversion after being on a ventilator.  Jordyn did great and loved having a bottle again.  The Speech Therapist said she passed the swallow study and is not asphyxiating any of the milk.  She didn't really want to believe it because she has never had a vocal chord baby pass a swallow study before.  Jordyn did great with the breastmilk consistency too so the Speech Therapist told me I didn't need to mix my milk with bananas any more and she can have straight breastmilk.  She said that Jordyn was a miracle baby and she didn't know how she was doing it, but she was making it work!

Spoiled

Nana and Tiff came up to visit and hold Jordyn today.  She was very spoiled and was held the whole day!

High Flow

Jordyn got extubated today and put on High Flow.  She is doing really good and looks like a totally different baby!

Finally get to hold her again!  It feels like it's been forever!

Brother Visit

Mom and Dad drove up this evening to visit Jordyn and they took Jacks and Cooper with them.  The boys lasted about 5 minutes and then wanted to leave.  Bert took them to the Ronald McDonald play area and they played in there while Mom and Dad finished their visit.

I stayed home with Addi today so I could take her for a doctor check-up.  It was nice to be with her and Ry today but I sure missed seeing Jordyn.

The PICU made this sign for Jordyn so all of her nurses could know a little bit more about her while they are taking care of her.

Jackson's 8th Birthday

I spent the day with Jordyn.  They pumped so many fluids in her when she got to the hospital that she doesn't even look like the same baby any more.  She's huge!  It makes me so sad.  The doctors decided to put her on a different kind of ventilator that's called a VDR.  Instead of blowing breaths it does a lot of little puffs of air and helps shake the lungs and break up all the gunk.  They have been sucking out so many secretions since she got put on it so it seems to be doing it's job.

The Respiratory Therapists have been giving her some physical therapy to help break up the mucus too. They use this little tool and pat her chest over and over.  She didn't like it at first and they had to paralyze her to do it because she would get so agitated but she has come around and just sleeps through it now.


Jacks and Coop slept over at Ben and Becky's last night.  The kids and Ben slept in a tent in the backyard.  When they woke up this morning Ben took the oldest kids to Seven Peaks to play.  Bert and I came home early from the hospital to have a birthday party with Jacks!  Becky was so sweet and offered to make cupcakes for him since I haven't been home enough to do it.

We didn't want him to peak while Bert brought out one of his presents...

I think he had a really good day!  Thanks to Ben and Becky for helping to make it a special day!!

Big Helper

Rylee loves to help.  She loves to throw diapers away and help get the bottles ready for the babies.  She loves these babies and gets right up close to them and in a high-pitched sing-song voice she says "Hi.  Hi Baby."  She showers them with kisses throughout the day.

Life Flight

Addi woke me up at 9:30 today and needed her pacifier put back in.  I peeked in at Jordyn and my heart sunk.  She was very pale and lethargic.  I immediately picked her up to make sure she was breathing.  She barely opened her eyes and I could hear very shallow breaths.  I called my mom downstairs and then called Bert home from church.  He turned up Jordyn's oxygen from an 1/8 of a liter to a 1/2 which improved her coloring quite a bit.  We decided she needed to go to the hospital so we packed her up and I called Keri, one of our NICU nurses, to ask if we should take her to Pediatrics or go straight to the ER.  She sent us to the ER and offered to come down and help put in an IV if the ER nurse had a hard time with it.  We got checked in and she got hooked up to a monitor that said what her saturation level was and it seemed fine.  The nurse couldn't find a vein so I called Keri and she came down to try.  She had a hard time drawing blood and only got a small sample out that they sent to the lab to check the CO2 in her blood.  A normal level for an infant is between 30 and 50.  Jordyn's level was 90.  That means she isn't releasing enough CO2 with each breath and is retaining too much of it.  The ER doctor wanted her admitted right away but the Pediatric doctor didn't feel comfortable admitting a baby that needed a vent.  There is only one doctor who would and it was Dr. Cheatum and he was out of town.  So they decided we needed to be life-flighted up to Primary Children's.  Keri tried to contact the doctors in the NICU to see if she could be admitted to the Pediatric unit at Utah Valley and just be seen by them, but everyone felt like the best place for her was Primary Children's.  They intubated her and then loaded her on the helicopter.  I rode in the helicopter with her and Bert drove the car up. 

After she was all settled in they determined that she has a virus called Parainfluenza.  They said it can cause croup in toddlers so we know it is definitely what Rylee had and we have been passing around the family.  The doctor made sure to tell us how impossible it would have been to keep it from Jordyn and to not beat ourselves up about it.   We don't know how long she will be here and are hoping and praying its not too long.  We just got her home from the NICU 2 weeks ago and I miss having her home so much.  Every time I pass her oxygen tank or crib I start to cry and I had a really hard time tonight when I realized I only had one baby to put to sleep.

All settled in at the PICU.

Cuties

Pretty Girl

Day Camp

Jacks went to his first Cub Scout Day Camp today.  He had to be ready to go by 6:30am and then came home just after lunch.  He had a blast!!  He made some new friends (Alex and Ben) and earned some beads for a necklace.  He got to shoot a bow and arrow and a BB gun, paddle a canoe, and launch rockets up in the air.  They also made airplanes and he got to help put the flag up.  He's so excited about scouts!!

Cuddle Time

Jordyn's Homecoming

Poor Jordyn just doesn't have the strength to drink her whole bottle at every feeding.  We kept trying 12 and 24 hour requests with her but she would just poop out in the middle.  It seemed like it was going to be a long time before she was coming home.  A few days ago I got a phone call from the doctor saying that if I was comfortable with it, they would send Jordyn home with her feeding tube still in.  I have said all along that I will take her any way I can get her so of course I agreed.  Bert and I had to go in and learn how to put the tube in and check that it was in the right place and now, after 112 days, Jordyn is coming home!

This is one of our favorite nurses, Carly.  I was so glad she was there for Jordyn's discharge.  She hooked us up with a bunch of supplies and took us around on another parade.  She always took such good care of the girls and I knew they were in good hands with her.  She loves them and I'm sure we'll keep in touch with her for a long time.

All settled in for our first night with both girls home.  Wish us luck!