Baby Reese

 

We were able to get some newborn photos taken of Reese. This is the only one I have back so far, but so grateful to do something normal like this with her.

{Photo by my sister in law: Tasha Price http://www.takenbytasha.com} 

Home

The kids were beyond exited to finally meet Reese and bring her home. They were waiting for us out in the NICU waiting room to get their first peek at her. I could see their nervous excitement and a few tears as they saw us coming towards them. This has been really hard for our other 3 kids. Reese was sort of this person they had heard of but had never met, so it was hard to feel like they had a new baby. They've had to sacrifice their parents for several months and cooperate with lots of people helping us. It was a tough thing for our family, bless these sweet children of mine who have had to go through some pretty tough stuff. We already had her buckled up and the nurse had to walk us out to our car, but we had a quick meeting.

 And first family photo.

 

Having the kids see and touch her was a little nerve-wracking at first. It felt like taking the bubble baby out of the bubble.

 

First car seat ride (besides transport to Primary Children's- this was her first time outside).

 

Such a fun surprise to come home to this.....

 

 It made us feel so happy that others were celebrating this with us. I tell you what....charity never faileth. My wonderful neighbor Kendra did this for us....everyone needs a neighbor like Kendra. Did I ever mention she also cooked my family dinner for a month while I was on bedrest.... And gathered a group of other neighbors to go in on a video baby monitor because I had mentioned that I was looking for one....and has helped with my kids anytime I've asked- and she goes all out for them, taking them to fun places and getting them cool things.  She's so good to our family- along with so many other great family members, friends, ward members and neighbors. The night we got home, some neighbors dropped off bread, my life-long friend Nicole dropped off two big sacks of baby clothes......just so many thoughtful things have been done for us. We are so thankful.

 

 It is truly a blessing to be surrounded by so many wonderful, supportive and caring people. It is overwhelming and humbling to have so many willing to help, pray, fast, clean, serve, etc. to help our family and little Reese. Thank You! Especially to our family who have raised our other kids for the past 6 months. Sincere and eternal gratitude is how we feel.

 Once we got home, the kids finally got to hold her. Reese & Rylee- survivor sisters is what they are.

Jace & Reese- oldest and youngest. Such a good boy this Jace is. He definitely "feels" the trial the most- poor kid practically got ulcers through this whole thing. He will be well-prepared to handle whatever storms life throws at him, but this has been hard on him. He's a little worrier.

 And Jaden (Bubby) and Reese. Finally found something to tame this boy. He is 100% soft and sweet with Reese and I love to see this side of him. He hugs her and just says, "I love you so much Reese."

 

There really is NO PLACE LIKE HOME.

So glad to have all my children here, with us on earth, in our home....together.

Good-Bye NICU

Well....after 115 day in the NICU, we finally got to leave. What a long and hard journey it has been- having a child in the hospital for 4 months is no easy task, especially with 3 other kids at home and, of course, a husband in tax season.  Reese joined the NICU on January 9 weighing 1 lb. 15 oz. and left on May 3 at 8 lbs. even.

 

We started NICU life out with Reese having an infection (caused by my placenta/umbilical cord being full of infection). Antibiotics weren't kicking it, so the Dr. actually started suspecting/testing wondering if it might be leukemia since we had another daughter with it. The rollercoaster and wild ride didn't seem to ever let up. We had a brain bleed, aspiration in the lungs, cut in the upper airway, she's gotten surfactant about 3 times, had about 20 blood transfusions, been on antibiotics on and off several times, had tons of blood work taken, echocardiograms, eye exams, head ultrasounds, xrays, developed ROP, had a laser eye surgery, transported to and from Primary Children's, etc., etc. etc. I.am.so. exhausted....and what a little fighter this Reese is.



Once we got her crib set up, it was just starting to feel like time for Reese to come home. It got hard walking past the empty room each day.

 

Then we got the car seat ready...and Rylee quickly put her baby in there and started taking it with us everywhere in the car. The kids were ready for her to join us too. Funny thing about this doll is that Reese was only about 1/2 inch bigger than this doll at birth. The head size is about the same as hers at birth- crazy!

 

 Then I show up to the NICU one day and they have this giant crib in there for her- with a mobile and everything. They were getting her too comfortable there and it was starting to definitely feel like big baby at the NICU. One morning at rounds, a hospital volunteer came up to me and said, "I just wanted to let you know that I came and snuggled your baby yesterday." What? I was so bugged by that- I just wanted my baby at home to snuggle her myself. It was starting to feel like Reese was in an orphanage or something. She does have a home and a family who loves her.

 

So...first thing on the list was to pass the car seat challenge. She had to sit in her car seat, buckled for 90 minutes without having any desats or brady's. Those two words are part of my vocabulary now, but "desat" means that her oxygen saturation levels don't dip below her set parameters and "bradys" is short for Bradycardia, which means a drop in heart rate. She passed successfully.

 

She had to come home on oxygen, so we had to go to Norco and learn that new world of oxygen pumps and oximeters (monitor to tell you heart rate and respiratory rate).

 

Then we moved Reese over to the transition room, where I stayed the night with her for the first time in 4 months.

 

She snuggled with her daddy for a bit before he went home to the other kids.

 

This lovely monitor beeped the night away. I did not really sleep at all. They had to make sure that our oximeter and the one at the hospital were similar so we had to have both...and they didn't really match up exactly so it was a beeping frenzy. Was glad to get the beep out of there!

 

The next morning, the nurse came in and said we didn't meet the feeding requirement. She was a few mls. short of her full feedings, so she was worried the Dr. might say that we can't quite leave yet. Well..the feeding thing was explainable because she had an eye exam that day and then she was exhausted so she slept through one of the feedings, which through her percentages off. The Dr. left it up to me.....and I said we were ready to leave.

So we packed up all of our stuff. Got discharge papers done. Got Dr. appointments scheduled, services set up, formula ordered, gave Reese a bath and got her dressed.

Said good bye to bay #12- which happened to be our 9th move in NICU life. We started in bay #5, moved to bay #9, transported to Primary Children's room 34, got moved to room ???, transported back to EIRMC bay #5 again, moved to the CCN bay #27, moved back to bay #5, moved to bay #6, then finally to bay #12 where we stayed until we went home.

Said goodbye to all of our nurses who practically became family. Grandma Karleen and Caroline.      It was nice getting to know all of the nurses and I love how much they loved Reese. I will always appreciate the good ones who took such good care of her when I couldn't.

 

After all of our goodbyes...it was time to leave. Time to finally get this baby home!

 

 Sweet Reese...you made it! You survived a very hard battle. You are our tiny miracle.

100 Days!

On Friday, we hit our 100 days in the NICU.

 

The hospital celebrated by giving us a cake.

 

I told them thank you, but I'd rather take my baby and leave the cake for them. They kept saying congratulations, although I'm not sure if its really something to celebrate?! I guess we'll celebrate the fact that we've survived.

 

I knew the moment that bed rest started that this was going to be a long road. And it is definitely starting to feel looooooong.....

 

My due date was April 21 (Sunday), although they consider it to be on April 24 (Wednesday)according to ultrasound and Reese's actual estimation (there's always been a 3 day discrepancy). If all would have gone as planned, we would have had her last week with a scheduled c-section a week before due date. But...here we are, fighting our way through this still.

Can you believe she's 3 1/2 months old?

 

 

She is currently up to 7 lbs. 6 oz. Her Dr's are quite pleased with her growth chart. She is nearly out of newborn diapers and clothing. I can't believe how big she's gotten. She has been doing good with her feedings and got the feeding tube removed on Saturday.

 

{Notice no little white tube below the oxygen now?}

 

She's been taking 85-98% of her feedings through a bottle now, so bottle it is from here on out (or so we hope- as long as no set backs occur). Her current orders are to be "fed like a newborn". This basically means not as much force feeding, but letting her lead the way by cues, etc. However, she still has an ideal amount of daily intake that they would like to stay close to.

 

So we thought that the feeding thing was basically our last obstacle to get home, but she's still requiring a little too much oxygen to go home on safely and comfortably. So...we're still at it. Being patient for everything to come together. It is also looking like she may need to get the laser surgery done on her eyes (this would take her peripheral vision), but I'm still hoping and praying for a miracle there.

 

We've got a few hesitations about the laser and it's hard to know exactly how long to wait it out to grow as much as possible and when to consent to do it. We are also desiring a second opinion, but Idaho does not have another retinal opthamologist, so unless we are discharged and take her to the Moran Eye Institute in Salt Lake, we are a little stuck with what we have here. Our neonatologists are currently trying to get figure out stuff with records, etc. to see about having another Dr. view them. However, it feels important to have the Dr. actually see Reese's eyes first-hand rather than relying on images. There are a lot of complicated conditions surrounding this- if we met all discharge criteria, we could drive her there ourselves and decided. Problem is- once we leave the NICU, they can't readmit, so if we chose to do the Dr. here it's complicated with getting readmitted, etc. It's also hard because some babies are able to keep growing their vessels until around 42-44 weeks. Reese is in her 40th week and we could likely meet discharge criteria this week. I don't want to jump the gun on laser just because we want discharged, but it's hard to know what to do. We are fervently praying that Heavenly Father will make this all clear to us. She will have her next eye exam on Thursday and would invite added prayers, fasting, etc. on her (and our) behalf.

 

 

But anyways....we are getting closer! I can't even hardly believe it and am trying to get myself prepared for the next leg of this race. We're already getting things lined up for home and I can tell by the list of our "suppliers" that this will be no easy feat. We'll have an oxygen supplier, a formula provider, home health, infant/toddler program as well as a whole list of follow ups with the pediatrician, opthamologist and audiologist for now. Plus we'll probably have some meds so add pharmacy to our list, plus immune compromised state of going nowhere:). Crazy adventure ahead. It's such a miracle that she is even here with us. I have not been able to bring myself to get her room ready until this week because I just didn't know if we would ever actually take her home. And after a very long battle....we will.

 

 

The Dr ordered a whole bunch of follow up tests last week and things are thankfully looking good. She passed her hearing test, head ultrasound looks good, echocardiogram/heart looks good, blood work is looking good too. So right now she's on 2 diaretics to help get excess fluid off her lungs/body, she gets a multi vitamin, some potassium, Mystatin for thrush and just got off an antibiotic for the infected IV site but started back on the Viagra to see if it helps with her possible hypertension in her lungs. So a small pharmacy going into her each day. Whatever gets her well.

 

All in all, I think we're on the right track. We're getting there, slowly but surely. We have certainly not had an easy run in the NICU though- definitely got the full experience. We've heard a lot of "I've never really seen this before" or "this doesn't happen very often". If there's ever been a fluke of a case- we are it. Everytime I started thinking that things would get better...inevitability it would get worse. A new complication, a new worry, etc. It has been emotionally draining, stressful, exhausting, heartbreaking, full of grief and sorrow and yet miraculous as well. And somehow we and Reese have survived all that's been thrown our way. I consider myself a pretty faithful person, but man this has really tested my faith. Hard stuff.

 

 I was looking back in comparison to see how far we've come. This is when Reese was 1 week old- 26 weeks gestational age. She was basically a fetus- no bigger than a baby kitten. Her head was literally the size of a tennis ball.

 

 And this is an awful picture of me, but look at this big baby now. How blessed we have been.

 

The Four Brave Kids

 A few months ago, Jace sat down to the computer and typed up a short story called

"The Four Brave Kids."

 

 

{As a side note, he's had a wonderful school teacher this year and I love that he can express himself through writing. It's small, but you'll notice it's Book 1- so maybe we'll see a sequel. :)

 

 

It reads: Once upon a time there were four kids. One lived in the hospital and three lived at home with their mom and dad. The kid in the hospital was Reese and the other kids names were Rylee, Jace and Jaden.

 

 

 

Jace was 8, Rylee was 5 and Jaden was 3 and Reese was 3 weeks. REESE WAS SO LITTLE SHE HAD TO LIVE AT THE HOSPITAL.

 

 

It was hard for Jace, Rylee and Jaden. SUPER HARD. But then one day my leg hurt and I had basketball practice and my grandma was coming to our house and she had to take me to my school for practice. I DID not even want to go. But I didn't have a choice so I had to go. The reason I don't like to go is because my dad always embarrasses me and I do not like that. I try to make him stop but he never listens to me. But I just do not listen to him. The last time I had a game the lights went out and nobody new how to fix them.

 

Well this is the end of Book 1, Book 2 will be out soon.

 

 Jace was right. These are four brave kids. And it has been SUPER HARD. They have done some pretty dang hard things in their young little lives. And they are doing good. How did I ever get so lucky to call them my own? I never had to experience anything remotely close to what they have had to deal with in their childhood. While Rylee & Reese have suffered hard trials first-hand, Jace and Jaden have been some pretty brave brothers to help them through it. I sometimes have moments of such sorrow for what has had to come at the expense of each of the different kids because of the difficult circumstances we've been given at times. Then I have moments of realization where there are far worse things a kid could learn than sacrifice, compassion, unselfishness and charity. I try really hard not to have them feel the burden of our trials, yet it's inevitable that they do feel it. They feel it in my absence, they feel it with not knowing their baby sister, they feel it in our prayers. I don't think they fully understand it all....but they do feel it.

 

 

And I love in the last part of Jace's story how he goes off into a rant about basketball. It's a lot like our life....it's hard and we've got some super hard things going on, yet....life goes on and you must go to basketball practice too. And...just like the lights going out--we don't always know how to fix our problems. Such is life. {Btw: Justin "embarrasses" him by coaching him off to the side- shoot, put your hands up, etc.  Justin now mostly just watches the game and keeps his pointers to himself.}   

The Most Tender Daddy

Today is Tax Day!

 

I thought I'd dedicate this post to Justin, who has been tied up with tax season during all of our hoopla with Reese. He's had a lot on his plate and I must say that he does pretty well under pressure. He always manages to keep a steady head and do his best to fulfill all of his obligations to everyone- work, church calling, me and the kids.

One of Reese's nurses always comments to me on how tender Justin is with Reese. He is very gentle with her and prides himself on holding so still whenever he holds her. He is a tender heart, that Justin.

He has had a really pure love for Reese from the first moments. He followed her into the reviving room when I was still on the operating table. He quietly sat back as the medical team revived our baby girl- taping the moment for me to see later.

 

He later said that he had no idea that the team was having quite a difficult time getting her going. A little while later, he brought his phone in to show me the first pictures of our baby. He said that she is really tiny, but she's cute. He asked if I had decided for sure on a name. I was so completely overwhelmed at that moment- it had been a hard run with bed rest and the c-section was very difficult and I was not feeling well. He said that all the NICU nurses had voted on Reese (it was between Reese or Maddy). That sounded good to me.

 

I think we've both experienced this differently. We've each had our role. In the beginning, I was still trying to recover and Justin was the one that was taking on all the information, Dr's explanations, etc. I was keeping things at an arms length because it was all very difficult for me. Justin was the one keeping the kids going at home as well as helping me recover and figuring out the whole NICU thing.

The hospital social worker came to talk to me a few weeks after Reese was born. She was wondering how my husband was- she said, "the last time I talked to him, I was telling him a lot of stuff and I was just getting the deer in the headlights look." We were both sufficiently overwhelmed and a social worker at that moment was just a little intrusive.

It has taken both of us plus a team of family, friends and neighbors to get through this. Justin has been a wonderful supporter. I would say that maybe  I've experienced this a little more first hand- being at the hospital, handling Reese, learning the whole process of things, etc. However, Justin has been there in a different role- providing for our family, handling the thousands of medical bills, being there for our other kids, arranging help, offering several priesthood blessings and being my rock- very few people understand this. But Reese is our daughter...so we both understand and we know we can rely and lean on each other.

While I got to hold Reese on her second day of life, Justin didn't hold her until she was about a month old. We couldn't handle her much and he just understood and wanted me to be the one to hold her when we could. He's been very unselfish and has taken care of things at home or with the other kids so I could be there with Reese.

He's had obligations at work to fulfill so his time has been more limited with Reese. He usually just gets to see her once a week and I'm sure that's hard on him. He's been my shoulder to cry on with all of the up and down emotions that this has brought on. I just cannot say enough about how much of a helpmate he is for me. It is very common for him to come home from a long day at work and start doing dishes or picking up the house or helping a child with homework or make dinner- whatever he sees that still needs done. I've always appreciated him so much for his willingness to do whatever needs to be done.

Justin is really good at being the calm in the storm. He doesn't over-react, he likes to hope for the best and he likes to make it all seem effortless. His famous words are "We're Fine!" I've begged to differ a few times, but I'm grateful that he can keep me somewhat calm and keep things in perspective. One night while I was at the hospital on bed rest, I was talking to my neighbor and she said that she stopped by my house and Justin had it all together- the house was clean, Rylee's hair was curled and he was in the kitchen making cookies. Who would have guessed by that picture that our world was falling apart? {Not to take anything away from Justin, but our neighbor had provided dinner, another neighbor who had watched Rylee that morning curled her hair and due to the generous help of ward members, our house was being maintained from their cleaning:)} But...he honestly is that great.

And he loves Reese. Each night he scrolls through my pictures on my phone that I've taken of her from that day. He often sends me texts or calls while I'm at the hospital to check in and see how things are going for her.

Her respiratory rate always races when Justin holds her. I'd like to think that she's pretty excited about having him for a daddy.

I'm so glad that tax season is over and that Justin can enjoy a little more of our family life and time with Reese. Hopefully soon our whole family will be together and we can move onto the next phase of this journey.

I think Reese really resembles Justin as a baby. Pretty sweet little girl.....and pretty sweet guy too!  Our nurse is right- he is the most tender daddy. 

 

 

And I'm grateful that we made it through another cursed tax season!

 

In your prayers:

1. Keep praying for good growth for the vessels in her eyes (exam on Thursday)

2. Pray that her lungs will get stronger

3. Pray that she will be able to do her feeding sucessfully

4. Pray for her healing, growth and development (including that her organs and body functions can work properly)

 

Thank you for your love and support