The End to This Chapter

I started writing this 2.5wks ago!

Tuesday, August 25th... What a day! Amber was released from the hospital! This day at the hospital was a busy one. And only got busier as departure time got closer. I had to complete all the discharge questions and the training I needed to be  trained on Amber's new feeding pump, on how to mix her formula/milk, show that I knew how to place an NG Tube, and trained on how to be a mom (this is where you have to be patient and polite and bite your tongue because "hello... NOT my first child!) We needed to meet Amber's new home nurse at the house at 7:00pm. And we were in such a hurry to leave that we almost caused a 'Code Pink' meaning we were leaving with out the doctor discharging us and signing us off. The nurse practitioner stopped us before we got to the door. The RN Nurse was a bit embarrassed and I felt bad for rushing her and getting her into trouble. It truly was an honest mistake. Amber rode home well. Of course the nurse was here waiting for us since we were 30 minutes late. The girls where all super excited to see her. And for a bit our house seemed a bit crazy.

Headed home in her own clothes!

First Bottle at home!

Wednesday, August 26th. I worked it out with the doctors to use the parent overnight room and to place Beau in there so I could take Amber back to the hospital with me in case Beau got his walking papers after his eye exam. He did a great job during his exam.  However, he still didn't pass! He is getting better and they will check on Wednesday, August 2nd. I was so sad! My babies should be together. My family NEEDS to be together! Amber and I did enjoy being able to hang with him all day in that room. The hospital staff has truly gone out of their way for me on many accounts and I sure do appreciate it. Later when we got home I left Amber with my mom so I could take the older two to Back to School night. 

Thursday, August 27th, started as the first day I couldn't go see Beau because Amber was home. So hard that you can't bring your babies back in with you if you still have one there. However, I completely understand the reasons behind it.

Hanging with the girls

Friday, August 28th, Regan practiced her fishing skills to prepare for her dad to take her fishing later on that day. I think she can cast better then me!

While Shane and Regan were fishing, Shaela and Bridget went to a friends Birthday party and I met my mom and dad at the hospital. They watched over Amber in a private family room while I was able to visit and cuddle Beau. It sure does my heart good to be able to hold him.

Saturday August 29th, not much happened on this day other then trying to get caught up on chores and doing them with an extra caboose attached. The girls and Shane did go to the ward Luau and had a great time. So here are some fun pics..

Amber pulled her tube so I grabbed a pic.

Since her tube as been replaced to the other side we can now see her cute left cheek and I think she MAY have a dimple.... I sure hope it stays! It doesn't always show up. I also think Beau has two smile ones.?.

Amber's Dimple, can you see it?

Beau's Dimples, you think?

Sunday, August 30th, my mom came and watched Amber for us so that we all could attend sacrament together and listen to Bridget sing her first sacrament solo. She did a pretty good job. If anyone can tell me a way to post it I will, it is an audio voice memo. Shane visited Beau and spent time holding, feeding and enjoying him. I stayed to bottle pears with Shaela. We were able to bottle 22. We watched 'So You Think You Can Dance? A show I love but the costumes and dances they put together are way to mature for a family show and half the time it's like watching a strip show from Vegas for as much material their costumes have.  I had to head out to deliver milk for Beau at 12:00am. They only had enough to make it to the 6:00am feeding.

Monday, August 31st, Regan started her second year of preschool! She was so excited. On her meet the teacher night (who she already knew from having her last year) we had to leave 30min early because she couldn't wait any longer so I took the VERY long, sight seeing way. Since her school is only 4 minutes from our place. 

Regan 1st day of 2nd year preschool

End of 1st day

Tuesday, September 1st Regan decided she needed a major change to her look and tried out Bangs. Yep! She cut her hair. No shocker since everyone of my girls has done this. But it was funny since a few days before I had just thought on how we dodged that activity with her since she is a year older then the other two were when they did it. I am not a fan of bangs on my girls but she thinks they are super cute ;) I called over my niece, Jaycee who is in beauty school to come straighten them up. But Regan really didn't do that bad of a job at them.

Look at those bangs! (This is before they were fixed)

Getting a touch up and after

Wednesday, September 2nd, I picked up my mom to go with me to the hospital so she could watch over Amber. But before we took off I went and introduced Amber to her Great Grandma Raeona and my Hero. 

Beau passed his eye exam but had a Brady over the night and ended up receiving a couple more days.

Friday, August 4th... Was a big.... Day! And one for the records. It started out with Amber and I attending her after discharge follow ups at Primary's. First Opthamologist for her eyes that took 2.5hrs and then surgical for another hour. She did great! While there I got a call from Bridget's school saying that they think she broke her arm. Shane wasn't in range to go to the school and NICU was waiting on me to finish up Amber's doctor appointments so I could take Beau home. I asked my mom (who was coming to Primary's to watch over Amber while I did all the discharge stuff for Beau) to pick up Bridget at school on her way to the hospital so I could make a pit stop to the ER to get her armed looked at. However, Shane was able to get her. Thank goodness! It didn't take as long to get Beau out of there as it did Amber. The first night home with the two of them felt like a circus act but now that we are settled in, it is not so bad. Beau came home with oxygen. I will post a few pictures here but most likely will be posting the bulk of them on Instagram so I can print the brag books. Thanks for being so patient with my speratic and infrequent posts and for sharing this journey with us.

The halls I walked daily and the lucky nurse who got to discharge us.

Dr. Cutie & Dr. Sweetie have graduated!

Do I dare say the 'H' word?

First off it is time to give a shout out to Grandma's!!! So many times my mom (Jolene) and Shane's mom (Sandy) have gone out of their ways to help me. They have each helped with Regan and the girls many times.. And I couldn't have done it without them. My mom made the cutest name banners for Amber and Beau that seem to get complimented on every day. 

However, I can't leave out Grandpa (my dad) he is always willing to take the girls for me anything he is available and doesn't complain but calls me and asks me if I need him to take them more. I love his unselfish love.

This past week there wasn't much excitement which is a nice thing!I just an eating and growing week..

Beau couldn't sleep. I think he is enjoying seeing things. I am enjoying holding the two together.

Now it was Ambers turn not being able to sleep

 

And their out....

Well we have talked about the 'H' word (home) a lot lately and it sounds like we are on track to bring Miss Amber home tomorrow!!! She will come home on an NG Tube and still needs kidney surgery when she gets a little older. And depending on how Beau's eye exam goes on Wednesday he could be home Wednesday or Thursday!! I so hope he passes. I worked it out with NICU to be able to bring Amber back with me on Wednesday so that I could be there for his exam and possible discharge. He will come home on Oxygen. And will be followed for his Cronicung Disease, Liver Failure and his eyes.

So excited to start the next chapter in our adventure with these two miracles. They will be on lockdown and not taken out in public where people will want to hold and touch them. I was told not to take them to church until spring. And to not have a show and tell at my house with them as all good intention people never know if they are carting a germ that could send them back to the hospital. It will be so hard because I so.. Want to share them with everyone who has traveled this journey with us and held our hands along the way. 

Surgeries ✔️

Tuesday, August 18th, Beau completed his eye surgery.  He did really well and they will do drops in his eyes for three days to keep them moist. He will have to always be followed and he still can have detachment of the retina but surgery for that is more successful when this surgery has been done first. He now opens his eyes more then he usually did and he follows objects with his eyes.

Beau trying to see the doctors

Wednesday, August 19th, Amber had her hernia surgeries. I am so glad we didn't wait until she was a bit older to do them. She ended up having one on each side (her  Inguinal Hernia) and the larger one was so big her ovaries had pushed down into it. While he was at it Dr. Downy also did her Umbilical Hernia. Yay!!!! She came back and was off the vent right away. And now, few hours later she is of oxygen as well! Sounds like she could be coming home this week and Beau possibly next week!

 They have to wear a cap to surgery so I made her a bow one...

Dr. Downy has done All of Beau's surgeries.

Standing by Beau is Dr. Downy (on left) and fellow (middle) and of course me.

Shaela and Bridget had their first day of school today and seemed to enjoy it! I almost forgot a picture and had to run after them for a quick snapshot. (I do that every year) 

1st day of school

And to finish off the day/night my lovely neighbor brought me a gift!! Notice the recognition to ruby on the inside? Love them! And love she included Ruby. Have I mentioned what wonderful neighbors I have? I so need to get all my "Thank You's" out going back from the beginning of all this. I just haven't even had time, I think about it all the time and hope people really know how much I have appreciated all the condolences, gifts, dinners, babysitting and just plain love! Thank You!!

Gift from Karyl Lee

A Valium Please...

What an emotional week!!! First off one of the doctors/surgeons has asked if I have a medical background and said to the nurses that he thinks I am lying and he believes I do have a medical background and that I just don't want them to know for some reason ;) guess I sometimes sound smart in all this stuff. I usually get asked at least once a day what my medical background is ;) nursing is my calling I have not got a degree in yet but will when my kids are older. However, with everything that has gone on I feel like I have lost so much brain cells. I can't hold intelligent conversations and can never think of what I want to say. I have lost so much info in my head it's like it is spitting out everything extra right now.

Thursday, August 13th, I was with the babies in the morning. My friend Megan took Bridget and Regan with her kiddos to the County Fair. They had so much fun with them. Later I took Bridget school shopping after the hospital and we had a great time together. She was so excited to buy colorful shoes for school this year. For some that don't know my girls attend a uniform school and in past years were only able to wear black, brown or blue shoes. But this year they changed it that you could wear any shoes within limits. She still needs to get her backpack and school starts on the 19th. Later that night my friend Kellie helped me finish Shaela's skate competition dress. Actually she did way more then just help finish it, she cut it all out, sat and kept me company as I sewed it on her machine and she pinned pieces together. It turned out pretty cute for the 'Super Hero' theme.

Cowgirl Regan

Sheep herder Bridget

Friday, August 14th, I took Shaela to skating around 6:00am, went home got Bridget up, and showered then picked Shaela up and took her to the Jr. High to fix her schedule. After that went home and got her ready for her competition. She did pretty good for not competing in almost 2yrs and going up a few levels. She placed 4th out of 6. At first she was so upset when she came off the ice. She knows she is slowing down and you can now see it in her skating. She pushes herself so hard but can't get faster with her heart ;( she was excited to find out that she placed.

Super Hero, Shaela

Winning picture (one girl missing)

Later that day I made Chocolate chip cookies with Regan. Since I was cooking you had your choice between Lightly Burnt, Mediem Burnt or Dark Burnt. They all still tasted good and are all gone now (someone might have just thrown them away to make me feel better)

Little Chef

Saturday, August 15th, I went and seen the babies early in the morning then took Shaela school shopping. We went to Station Park Mall, Layton Hills Mall as well as Target, Walmart, Payless, Smith's Marketplace and Khols. We couldn't find any white button up shirts for school that fit her that where under $70.00 until we finally did Khols at 9:30 at night. She is also still in the need of a backpack. I also got the opportunity to put my grandma to bed since my mom is out of town. I sure love her.

Sunday, August 16th, we did our usual church and visit the babies with the girls.

Monday,  August 17th, (today) has been an emotional day. Grandma Sandy took Bridget and Regan for me for the day and later when we got done at the hospital she took all three girls to the movie. What wonderful grandmas they have! First thing in the morning I took Shaela in for her heart check up. We went in smiling came out sad. We knew her energy level has been going down but not where others may able to notice. She makes me so proud on how much she pushes herself.  Her heart isn't doing as well (as we expected) we made the choice with Dr. Puchalski to wait and look at her in 6 months. We don't want to rush her in too soon and we don't want to wait too long where we end up putting to much pressure on the Aorta Valve and having to transplant it as well. Shaela handled it as well as expected. And we are excited to have 6 more months.

Echo

Shaela and Dr. Puchalski, her Crdiologist that she has had for 13yrs

We then went to check on the babies and found out that Beau has to have eye surgery and they will be doing that tomorrow morning. Trying to prevent him from going blind. It will effect his per-feral vision and we may have a cute baby with glasses. 

  Amber will be having surgery on her hernia as soon as I get a doc to approve it for this week. Shane and a friend blessed the babies for tomorrow. 

  Mom NEEDS a valium!!!!

Pray and Wish us luck this week!

Amber on Left Beau on right. She looks bigger then Beau but only because she is closest to the camera.

100 Days Old and Due Date

One of my favorite photos we did with Ruby 'Jo'

Friday, July 31st, Super fun, watching the movie 'Home' in the neighbors backyard.. Shane and I have talked many times about getting a projector to play movies outside but never have followed through with it. I love the idea of neighborhood get togethers and having neighborhood friends. I can truly say I love our neighborhood.

Saturday, August 1st, Beau started taking his bottle like a champ. I tried nursing but he isn't sure how the nipple change benefits him yet ;) After I got back from the hospital we took the girls up the canyon to barbque and play in the woods. It was a nice family night that we all needed. You can feel the strain on the family reaching all the way to the youngest one, Miss Regan. We all are a bit short with each other and a bit over exhausted. I'd love to say we are all happy and loving life, which we are but in a different way. And each one of us is dealing with the stress differently. However, the faith, testimony and bond it has brought our family is just as priceless as these babies.

Nothing more calming then a fire pit

Sunday, August 2nd, we took the girls to church and after to go see the babies at the hospital. Bridget stayed later with me to give Beau a bath.

Monday, August 3rd, a usual day with the babies. Shane roasted marshmallows with a fire pit with the girls. I ended up having to go back and deliver milk to the hospital. He forgot to get pictures.

Thursday, August 6th, Beau went to a regular nasal cannula. It was a great day. 

No more high flow

Holding them together.

Bath time and DON'T think about taking his Binky away!

I need these made for the babies! I love the black onesie but maybe have his in turquoise writing and hers in Pink writing?

Sunday, August 9th, wow what a crazy Sunday. You just have to look at my 4year old to see that I am short a few organized skills right now. I dressed Regan for church while she was asleep and she woke upset because it wasn't the fancy dress she wanted. She hid under her bed and stripped naked. Finally found the fancy dress she wanted to wear and dressed her in it. (Not worth the fight) I Made the executive decision her hair will have to be done while listening to church services. As we are walking into the chapel I look down and notice that my lovely 4yr old dressed in her lovely fancy dress and crazy homeless hairdo has NO shoes on!!!! I ended up leaving the three girls with some neighbor ladies (have I said I love my neighbors?) After I ran home, picked up her missing shoes and returned to services I proceeded to work on her hair with those cheap elastics (the only ones I could find) you know the ones you get in the packages at a bargain. Well they did what they do best and kept breaking as I was trying to tie her hair in two ponytails. When I finally thought the look may pass for something we could get away with she decided to mess it up (who knows why). So this is how my little Regan looked at church. Gotta Love Her! I told her I was taking a picture of her "Lovely Dress and Beautiful Hair" (have I said she is super sensitive right now?). 

After church I went to visit the babies without the kids this time. Shane planned to meet up with me later so we could do the classes you need to pass off to get your babies out of NICU. And guess what... Miss Amber was Oxygen Free when I showed up!!! On Room Air!!! Now her Brother had been taking full feeds and showing her up and she must of just gotten tired of that and decided to show him!

Oxygen is the big number in blue!

Cannula Free!!!

This is one of the babies primaries names Jessica. I truly have the best primaries and believe I have made lifetime friends with this Journey they have taken with us. I love how much they care for my littles and are willing to chat with me ALL day as I sit there. (I'm sure they sometimes wish they could get away from me).

Jessica

Monday, August 10th, was just a feeder Grower day! Beau knocked it out of the park and showed Amber how it was suppose to be done by taking ALL his feeds by bottle! I sadly am loosing my milk since I had surgery ;( 

Beau on left Amber on Right

Tuesday, August 11th... Was a Big Day!!! It was Beau, Amber and Ruby's Due Date. As well as 100 Days Old. Beau celebrated his day early by going off Oxygen for 40min before headed to surgery and being reintubated. So I took  a few pictures to show his cute nose as we headed to surgery. He had his two ingrenial hernias fixed. He did really great in his surgery and now is just trying to recoup. Amber is still eating and growing. I have talked the doctors in allowing her to come home on an NG Tube. I guess they don't allow that anymore. However, since I've had one come home with an NG Tube before (Shaela)  he said ok ;) so now she is waiting on her hernia to be fixed. Then can head home.

Look at those nostrils.. (Beau)

Amber

Beau

Wednesday, August 12th, they had their eye exams today. Amber has graduated to not being stuck here just because of her eyes and she can now be watched through out patient once she leaves here. Beau has no major changes so will be having another exam again next week and did not get a green card to go home from the eye doctor (Dr. Hoffman). 

For everyone that has been asking. My surgery went as good as possible. They ended up taking everything on the right and my left tube. But were able to leave the left ovaries. My milk production has gone WAY down since the surgery and looks like the babies may end up to be exclusive bottle feeders after all.

Ohhh ya.... They both weigh over 7lbs!