Last Day of School

Cooper's last day of Kindergarten and Jackson's last day of 2nd grade.  It's been a good year!

Bottle and Bath

Addison's Homecoming

Today was a very bittersweet day for me.  I wanted the girls' to come home on the same day so badly but it just wasn't meant to be.  I drug my feet a lot today because I just didn't want to leave Jordyn behind.  Brenda was our discharge doctor today and she kept coming into the room and asking me how I was doing and I would start crying every time.  Keri was our nurse and she helped us gather up a bunch of bottles and syringes and things we would need at home.  I fed both girls and got Addi all dressed up and in her carseat.  When I just couldn't stall any longer I broke down crying and said goodbye to Jordyn. So many people tried to console me by saying that it would be easier to have just one home first and I could get used to that but I wanted both my babies home with me.  Finally, after 104 days, she is coming home from the NICU!

The NICU has a tradition of taking babies on a little parade to see everyone and say goodbye and it was fun to see some people again.  After the parade, Keri walked us out to our car and we took Addi home.  There were fun pink balloons and pink pinwheels waiting for us as a welcome home. 

The boys were excited to see her and made sure to change their clothes and wash their hands before they went near her.

Rylee loves babies and wanted to keep kissing and touching her.  Even though Addi is 3 1/2 months old it feels like we brought home a newborn.  She looks and acts like a newborn.  The only difference is I'm not recovering from giving birth.

Rooming In

I woke up to a text from Alyssa today saying that Jordyn had barely made it through her feedings during the night and seemed to be slowing down and getting really tired.  I came in for the 7:30 Cares but both girls were sound asleep.  I needed to pump so I decided I would do that and give Addi a bottle when she woke up.  She woke up right after I started, of course.  Carly fed her a bottle while I finished pumping and then I attempted to feed Jordyn.  She was grunting a lot and seemed like she needed to poop and wasn't at all interested with eating.  After finally giving her an enema and waiting for her to poop, she was way too tired to eat a bottle.  The doctor said we could give her one last chance to prove she was ready but during that feeding she DESATed way low and took awhile to come back up.  We agreed that she was being pushed too hard and she needed a 12 hour rest again and hopefully be able to get back to it tomorrow.  So Addi will come home tomorrow but Jordyn will have to wait a day or two.  I'm so sad that they aren't coming home together but I'm grateful that it won't be long before they are both home.

It's been an overwhelming 2 days while everybody comes in to talk to me about what I need to be doing when I go home and handing me papers to sign and read.  Discharge from the NICU is crazy because they wait until the very end like this and then bombard you with information.  If you have a baby that is going home on oxygen then they have you stay there at the hospital for about 12 hours in your own room with the babies so you can learn how the new equipment works.  Bert and I came down to the hospital at noon today to start our rooming in.  All the rooms were full so we ended up just doing it in the room we have been in.  We thought it would be easier to do it now before Addi goes home.  The Intermountain Home Care came to show us how to set up the oxygen that Jordyn will come home with and we have just been sitting in our room taking care of the girls.  It's been so weird to not have any other responsibilities.  We'll be here until about midnight and then go home to get some sleep before we're back tomorrow morning to get Addi and take her home.

Close to Home

The girls passed their 12 hour request with flying colors!  They then gave them a 12 hour break and only fed them through their tube.  At 1:30 today we started the 24 hour request.  They have to be able to eat from me or a bottle for 24 hours.  We got off to a rocky start because the eye doctor came in for check-ups at 5 and wore the girls out.  He said the girls are still about 6-8 weeks out from maturity but he would be fine with us still taking them home if we make sure to bring them in for weekly check-ups.  It will be at the hospital and the doctor really stressed the importance of it.  They have known parents who weren't diligent about going and their child ended up blind later on in life.

I stayed until about midnight tonight to help with their feedings.  Jordyn was starting to slow down when I left so I don't know if she's going to make it the full 24 hours.  Addi keeps hitting her minimum amounts or exceeding them.  She only needs to get 45 mls of breastmilk but she had 85 and 65 at 2 of her feedings today.  If they pass this 24 hour request they will move on to a 24 hour demand where the baby tells you when they are ready to eat and you can't let them go longer than 5 hours in between feedings.

Addi did her car seat check today.  She has to sit in it or 90 minutes and keep her saturation levels normal.  

12-Hour Request

Wendy called me at 11 today after doing rounds on the girls.  She was very pleased with the girls' numbers from yesterday and thought we should maybe try a 12-hour request.  A 12-hour request is when the babies get fed from me or a bottle for a 12 hour period.  They have a certain amount of milk they have to eat each time to pass.  The babies decide when they want it but the nurse won't let them go longer than 4 hours in between.  She was more impressed with Addi and thought for sure she was ready for the 12-hour request but was willing to put Jordyn on it too.  I told her I liked the idea of keeping the girls on the same course if we could so we decided that we would try it out because we had nothing to lose.

I went down at 1:30 for the first one and Gena fed Jordyn a bottle while I tried to nurse Addi.  She fought me a lot and then would finally latch on, only to fall asleep right after.  Eventually after a half hour of that I just gave up and fed her a bottle.  She drank the whole thing in like 7 minutes.  Jordyn did great with Gena and ate the whole thing.

I went again at 4:30, 7:30, and 10:30 to help feed the girls.  I didn't have very high of hopes for this first 12-hour request because Wendy had told me that most babies fail the first one and have to repeat it a few times.  But, of course, the girls did awesome and drank the full amount all 4 times!  We passed!  After the 10:30 feeding tonight they will give the girls a 12 hour rest with only gavage feedings (through their tube) and then we will start up a 24-hour request tomorrow.  After all this time, there is finally an end in sight!!

 Nick and Mom came in tonight with me and he fed Addi a bottle while I gave Jordyn hers.

Due Date

Today was my due date.  I tried not to think about it too much today because I knew it would just make me sad.  There have been so many times in the last 3 months that I have wished that things were different.  Without even trying I had made so many plans and dreams in my head about the delivery and bringing the girls home.  It's been really hard to give up on those dreams and accept what has happened instead.  My life has never been more stressful but I have also never felt so much love and support from friends and family before.  These babies are so loved and so special and will be spoiled rotten because of it!  We will never know why the girls were born so early but I do know these girls were a blessing from Heavenly Father and He has been and will continue to watch out for them and for our family.

Rub-a-dub-dub

Luke slept over tonight because Dave has an overtime shift tomorrow and both he and Erin leave the house way before school starts.  In the past Erin has just dropped him off in the morning on her way.  Now that we've moved it's a bit more of a commute so he came tonight and will sleep on the floor in the kids room.  Before they could go to bed they all needed a shower and, since the shower here at Moms is so big, we stuck them all in together.  They had a blast!!

4-A-Day

Bert went down this afternoon to feed the girls.  Unfortunately, they had already been fed by Annie so instead he just cuddled with both of them.  He said they were quite fussy when he first got there but not when he was holding them.  He loved his daddy-daughter time!

Addi must have known I've been thinking about giving up on breastfeeding with her because she totally upped her game today.  Lately she has been digressing a little and getting pretty low numbers but doing really well with her bottle, so I figured I'd save myself a little time and maybe get her home a little sooner if I stopped trying to breastfeed her and start doing bottles full time.  But she apparently isn't ready to give it up because she got 54 mls this morning and 44 tonight without the breast shield.  Her feedings are 49 mls so she rocked it today.  

Apparently, Addi threw a pretty big fit right before I got there tonight and she pulled her feeding tube out of her nose.  It was fun for me to see her without anything on her face.  She was just a regular, beautiful baby!

Mom fed Jordyn a bottle tonight with Annie's help.  She has been doing so good lately that they are moving her to 4-a-day feedings.  There still has to be a break in between so one of her feedings will be in the middle of the night.  With Jordyn's vocal chord paralysis, she has to be fed a certain way and let her set the pace.  I don't really trust everyone with the job because if she is fed wrongly or too fast then she could possible aspirate the milk.  We'll have to see who the night nurse is from now on and whether or not I trust them to feed her.  If I don't then I guess I'll be going down in the middle of the night!  I'm so pleased that Jordyn has caught up and passed Addi on feedings.  Addi started so much earlier than her and so I was worried that Jordyn would be too far behind.  She is doing awesome!!

The ladies took Tiff out to lunch today and then some shopping at the outlets at Traverse Mountain.  Afterward, we went back to Mom's for a BBQ and presents.

Happy To You!

Jacks had a program this morning.  He was supposed to dress like a tourist for his part of one of the songs.  His teacher this year has been Miss Funk and he has really liked her.  We're all very excited for summer!!

Jordyn got bumped to 4-a-day feedings today because she has been doing so well.  Addi hasn't been getting very good of numbers lately and tonight while I was nursing her, Annie came in.  She suggested feeding her on both sides, which I did, but when we weighed her after nursing for 30 minutes she had only gotten 26 mls out of the 49 she is supposed to have.  Annie suggested taking the nipple shield off and seeing if she would latch on.  She did latch on and did so good!  I was so excited and after 5 minutes with me she fell asleep.  I weighed her and she had gotten 18 more.  There is a more continuous flow without the nipple shield so they can get more out in a shorter period of time.  I really hope we can stop using the shield from now on!

Today was Tiff's birthday so Mom and I took her out for a pedicure.  Afterward, we met up with Dad and Erin and her family and went to Goodwood for dinner.

SOLD

Bert took the day off to go grab the last of our stuff from the house.  He got the last load of shed stuff and brought it out to Mom and Dad's.  It was a pretty tight fit but we were able to get all of our stuff to fit in the garage.  We closed today at noon and, funnily enough, were in the same exact room that we signed papers to buy the house.  I'm so glad to be all done with it and have a little less stress in our lives.

Pulmonary Hypertension

Brenda called today after rounds and told us that Jordyn has Pulmonary Hypertension.  It's a common thing with preemies who have Chronic Lung Disease and so it's something that they watch for.  It explains a little of why Jordyn swings so much and why she has had a hard time being weaned off her oxygen.  Pulmonary Hypertension is high blood pressure in the pulmonary artery in the lungs.  They won't be able to treat it until their eyes are fully matured.  After it is treated and goes away it won't effect her anymore.  Once their eyes are cleared they can turn Jordyn's oxygen up to 100% and that should clear up the pulmonary hypertension.

The girls have been getting their eyes checked regularly for the last few weeks.  The doctors are checking for retinopathy of prematurity or ROP which is a problem that affects premature babies.  The blood vessels in the eyes don't grow as well and so there is sometimes scarring and retinal detachment.  ROP can be mild and not affect the baby but some cases require surgery to correct.  There are 4 Stages of ROP.  They don't consider surgery until the baby has gotten to the 4th stage.  Thankfully Jordyn is stage 1.5 and Addi is stage 2.  We are hoping they will mature quickly and not get any worse.  They are both in Zone 2 for maturity.  There are 3 zones and so they are almost there and then won't need their eyes checked again until their follow up appointments.

Brenda also talked to me about Addi and how she really isn't doing as good as we would like.  She has been breastfeeding for a while now and she really should be doing better than she is.  Brenda suggested breastfeeding her for 20 minutes and see what she gets, then top off the rest with a bottle.  That way she is working for the whole feeding and not just getting some from me and the rest being fed through her tube.  I started it this afternoon and she loved her bottle.  She grabbed on and downed the whole thing really quickly!  They usually like their bottles better because they don't have to work as hard to get the milk out.

Grumbling and Complaining

I am exhausted.  I feel sort of like a zombie with only half a brain left.  But I also realize that this is probably nothing compared to how tired I'll be when the girls are finally home with me.  I think if I didn't have to worry about anything else that I could lay down and sleep for at least 12 hours and I would love it!

So many nurses have told me to keep being patient with the breastfeeding thing and that eventually something will just click and she'll get it.  I think they are all liars!  We've been at this since April 1st and nothing has clicked.  I felt like tonight was going to be our best test weight yet.  I could hear her swallowing and she had a good suck-swallow-breathe rhythm going on.  I was so disappointed that she only got 16 mls.  Nothing's clicking for her yet!

I've been so busy with packing and the move that I haven't been tracking how much milk I pump each day.  I started tracking today and was very disappointed to see I only got 29 oz.  I've been consistently getting 40 since the girls were 2 weeks old.  I haven't been drinking enough water or been good about pumping every 2-3 hours.  I'm hoping that if I start that back up again, I will get my milk back.  Keep your fingers crossed that I won't have to start using my freezer supply just yet!

Visitors

Ben and Becky came down to see the girls this morning.  After I was done with Cares I went by Dr. Savages office to check on Jacks' immunizations.  She was surprised that I had an issue because she knows I come to all my appointments.  She had her nurses check into it while she chatted with me about the babies.  They came back and said he was up to date and Dr. Savage signed it.  We brought the boys in at 7:30 Cares to meet and hold Addi and Jordyn for the first time.

 When Cooper found out we were going to the hospital he said he wanted to hold Jordyn first.  She slept the whole time he had her so he kept commenting to Jacks about that.  Addi was getting hungry so she was awake and a little fussy.  I think Cooper thought he was better at holding babies because his baby slept and Jacks' didn't.

I had to go back tonight for the 10:30 Cares and Peggy and Shirley met me there.  These girls are definitely loved!!

Mother's Day

The boys could hardly wait for me to open the presents from them this morning.  Unfortunately we had early church so I had to put them off until after.  Cooper made me a plate at school and Jacks made me a key chain.  They both also made little gifts in their Primary classes too.  Bert gave me a new Crock Pot which will be so nice.  The handle on mine broke off a long time ago and it is always hard to lift the lid up.  The NICU lifted their Winter Policy today so the siblings that are older than 2 can go down and visit the babies as long as they are all caught up on their immunizations.  I was so excited about that and knew my boys were up to date because I go to all of their appointments.  When I took in their immunization records they said Jacks wasn't up-to-date but Cooper was.  I was so frustrated and will have to wait until Monday to go down to Dr. Savages office and get it all sorted out.

I gave Jordyn a bottle for the first time tonight and while I was feeding her my mom and Erin came walking in.  Now that the Winter Policy is lifted we can have a few visitors at a time as long as they come in with someone who is already on the list.  I had just finished feeding Addi so Erin held her while I finished with Jordyn and then we all walked out together.  It's fun to finally be able to show them off!!

I tried to get a good shot of the girls tonight, but they weren't really cooperating...

It looks like Addi is trying to lick Jordyn. :)

Moving Day

We are all moved out of our house and into Mom and Dads.  We had tons of help and quite a few vans, trucks, and trailers, so we got most of it in 1 load.  It went pretty fast!  It's pretty sad to say goodbye to our first house but we have definitely out-grown it and need to get something bigger.

Rylee didn't want to go to sleep in a new place tonight so Bert had to rock her until she was asleep and then lay her down.  Just as he got her down, Coop came out and said he felt like he needed to throw up.  He made it to the toilet just in time.  I grabbed him a bowl to sleep with but thankfully he slept through the rest of the night and didn't need it.  Rylee, on the other hand, woke up a couple hours later and slept with Bert and I the rest of the night.  It was a long night.

Addi had to go back on oxygen this morning around 5am.  Jamie said she kept DESATing and she tried to stimulate her but Addi was just too tired.  I went to the 7:30am Cares and was planning on skipping 1:30 and having the nurse feed her a bottle but the doctor decided to bump Addi back to 2-a-day breastfeeding because she was just getting worn out.  Bert and I went back tonight at 7:30pm and held and fed the girls.  It was nice to sit and relax and cuddle with a baby.  It's been a long, busy day and I'm so glad it's over!

News Story

Remember back on March 21st when Channel 2 News came and interviewed us for a news story?  They told us it would air a week or 2 later and it never did so I assumed they had given up on it.  Well...it finally aired tonight.  We got a few phone calls throughout the afternoon from people saying they had seen a preview with me in it and wanted us to know it was happening tonight.  It was weird to watch myself and notice all the weird mannerisms I have and faces I make when I am talking. 

Here is a link to the news story.
http://kutv.com/health/features/baby/stories/vid_32.shtml

I think we are pretty set for the move tomorrow.  The boys are sleeping over at Erin's tonight and we will take Ry over in the morning when she wakes up.  I am planning on going to the 7:30am Cares and then having the nurse give the girls' a bottle at 1:30.  Then I'll go again in the evening to help feed them.

3 Months Old

Bert helped give Jordyn a bottle today.  Angela, one of the Occupation Therapists, was there to do it but said she would talk Bert through it if he was interested.  It's pretty tricky and you have to go really slow so you don't overwhelm her and she doesn't get too much at once.  It also needs to stay a positive experience so she will continue to want it.  He did a great job!

Playing in the Gutter

They are doing some construction over on 800 West and so we have been having tons of water flowing down the gutters.  When the boys came home from school they immediately went out to play in it and, of course, Ry couldn't be left out.

Packing

We've been packing a little each day this week trying to be ready to move on Saturday.  The closing date was set to be on Friday, but yesterday it got bumped to next Friday.  I am so ready to be done with it and have a little less stress in my life right now.  We are still planning on moving out this weekend and then getting cleaning and last minute things done throughout next week.  Bert worked from home today because he had a broken sprinkler line to fix and my car needed new tires.  He and Ben loaded up all the boxes that Mom and I had packed up so far and took a load down to Mom's house.  Dave and Dad met us there to help unload.

My living room is full of boxes!  It seems like so much, but I'm sure we'll use them all.

Reader's Theater

 Jacks had a Reader's Theater today in his class.  Mom, Ry and I took a break from packing and went to listen.  He was so pleased to see us there.  He did a great job.  Jacks' teacher is always saying how much she likes having Jacks' in her class.  That is always nice for a mom to hear.  I'm so grateful that both boys like school and are good students!

Addi had an awesome day.  Her test weights were 26 mls, 31 mls, and then 29 mls this evening.  Jordyn did awesome with her first banana milk bottle today.  She got 29 mls with Annie feeding her.  Annie explained how the bananas work to me.  The bananas help thicken the milk and also make the milk a little slimey.  Since her left vocal chord is paralyzed, she has a hard time swallowing.  She has to be laying right side down while she eats so gravity can help pull the vocal chord down and close off her airway.  The "slime" in the milk helps it to glide down her throat a little easier.    

The girls have been moved again.  The NICU is so full right now that they have moved some babies down to the 4th floor to their Pediatric overflow.  We have a nice big room that we share with one other baby.  The mom doesn't have a car and so can't come in very often so it's like we have our own private room.  Mary Beth was the nurse on shift tonight and she brought me some cupcakes.  She was my nurse the other night when I was crying and having an emotional night and she wanted to give me something to help cheer me up and be happy.  We have had so many amazing nurses that I am going to miss when we are finally home!

3-A-Day

Addi got moved to 3-a-day breastfeeding today.  She did great!  She got 19 mls this morning, 11 mls in the afternoon, and 18 mls tonight.  Pretty consistent day.  When she is consistently getting around 45 mls each feeding then she will get bumped up to 4 times a day.  The doctor was concerned that she might have an infection because her skin was mottled and she DESATed a few times, which is unlike her.  She decided to play it on the safe side and get some labs drawn to see.  Thankfully she doesn't have an infection and was just having an off day.

I've been thinking a lot about Jordyn and her feedings.  On one hand I really want to breastfeed her but on the other hand I want her to catch up to Addi and be able to come home close together.  I've given up on the idea that they'll come home together, but I want it to be as close together as it can so I am not leaving one baby behind while I go down to visit the other.  So I came to the decision that we should start doing bottles with Jordyn and see if she will do better with that.  Brenda came in to talk to me and said pretty much the same thing.  She'd been thinking about it and thought it was a good idea to try.  So I will breastfeed Jordyn in the mornings and then someone from Occupational Therapy(OT) will come give Jordyn a bottle in the afternoon or evening.  It's written that only OT can do it because they can work with her and figure out exactly what she needs to help her get the milk down and keep it down.

Today was our last week in this ward.  We have always loved our ward and felt welcomed from the very first week.  We will miss all of our friends so much!

Papa Holds Jordyn

Today is the last day for soccer games.  Soccer season always adds stress to our lives because you are busy 3 days a week with games and practices.  This year my stress level was already high enough so I am not that sad for it to end.  The boys both had a good time, as always, and can't wait for it to start again!

 Cooper and his cousin, Alex.  Their games were always at the same time, but unfortunately they never played against each other.

Cooper's team name was the Blue Sharks.

Blue Sky Crushers

 

I went down to feed the girls this morning and got a surprise visit from my mom and dad.  Dad hasn't been in for a long time and has never held.  The girls' were always too small and fragile and it made him nervous.  Now that they are bigger he said he would love to hold so he held Jordyn while Mom held Addi.

 They gave Jordyn a swing today to sit in while she is getting fed.  They are hoping that will help with her reflux and she won't gag and DESAT as often.  It was so hard for me to leave the NICU tonight because the girls were both fussy.  I also got stuck with a new nurse that I didn't like all that much which made leaving even harder.  I've definitely got NICU-itis and am so ready to be out of there and done!

Trudging On

I guess Addi was tired after her big day yesterday and today she only got out 15 mls this morning.  My nurse was talking to me about how discouraging and depressing it can and does get for all the NICU moms.  She told me to hang in there because it will just click in their heads one day and they will know exactly what to do and do it fine from then on.  Jordyn was too tired to nurse this morning but got on and nursed this evening.  After about 7 minutes she relaxed and pulled off.  Then she gagged again but I tried not to move her very much and she didn't throw up this time.  Annie is going to talk to the doctors about giving Jord some Prevacid for her reflux.  She said they used to use it all the time and now don't use it very much anymore.  She thinks that will help Jordyn.  It's supposed to minimize the acid that is coming up out of her stomach so it doesn't burn her throat and hurt so much.  We need to do something for the poor girl.  It is so sad to listen to her gag and see her DESAT and then try to swallow what's in her throat.

Kindergarten Program

Cooper had his Kindergarten program tonight.  It was so fun!  Coop loves to sing and did a really great job.  His favorite song to sing was "Each of Us Is a Flower."  

Coop has really loved being in Tiff's class this year.  He's very smart and getting so good at reading!

It was a fun program!  Ry is really into sticking her finger in her nose lately.  Makes for a cute picture.

Addi had an awesome day with breastfeeding.  This morning her test weight was 50 mls (which is 6 more mls than she would normally get and the most she's ever gotten) and then this evening she got 29 mls (which is the most she's ever gotten for her evening feeding.)  I fed Jordyn and she was doing so well for about 10 minutes.  Then she got tired and relaxed and fell asleep.  A few minutes later she started doing her gagging thing and I hurried and lifted her up straight and she threw up all of the milk she had just eaten.  It scared me really bad and also made me feel so discouraged about her not being able to breastfeed.  I sat there and cried for a little while.  Annie came in and I explained what happened to her and she told me not to give up hope yet.  She wasn't gagging while she was eating which is a good sign.  So we will try again tomorrow with Annie there and see what happens!

Banana Milk

Annie tried giving Jordyn a bottle tonight to see if she would tolerate that any better than breastfeeding.  A lot of babies that have paralyzed vocal chords have to drink from a bottle because they can thicken the milk using a little bit of pureed banana baby food.  They seem to have an easier time getting the thicker milk down and keeping it there.  Jordyn drank about 15 mls of "banana milk".  Annie thought she did fine with it but wants me to still keep trying breastfeeding and see if we can't get her to tolerate that.  Annie has only ever had one of her vocal chord babies be able to breastfeed so I'm keeping my fingers crossed that we will be #2.