Baby Bean

Somewhere along this journey, I started calling Reese "baby bean". Probably because she's just a small little bean-y baby.

Reese's size is kindof a novelty. Everyone is always interested in how "big" or rather how small she is. Today she weighs 5 lbs. 4 oz. At birth, she weighed 1 lb. 15 oz (that was weight after she had a diaper on, fluids pumped through her, vent in- so probably less than that.) and she was 13.5 inches long. Tiny!

She is really growing and seems big to me now. In fact, a set of preemie pjs at the NICU were too small for her today. My friend stopped in during her bath and could not believe how small she was. I guess I'm just used to her so she doesn't seem that small to me anymore. She actually just seems more like a baby now.

When I was getting stitched up from the c-section, Justin brought his phone in with a picture of her. I actually thought she didn't look that small. The next day when I went to see her though, I realized the pictures were a little deceiving. Several family members felt the same way- once they saw her in person, they couldn't believe it. Much smaller than they were expecting based on pictures. This was one of her first pictures next to Justin's hand for perspective.

 

 This was day 2 of life. Outside the isolette and inside. Hard to tell just how small.

 

 

 Her feet and hands were so tiny.

 

Once again perspective against Justin's average man-hand. Her footprints looked like a scrapbook stamp.

Her diaper was about the size of my iphone.

Compared to a $10 bill, small stuffed animal and king-sized candy bar.

 "Kangaroo care" is holding her down your shirt, skin to skin- it helps keep her warm. This is a look at her tiny hand.

 Justin's hand inside isolette.

 

 We took Justin's wedding ring in to see if it fit her. The nurse suggested this idea and I honestly thought her arm would be too big, but actually his ring was too big for even her upper arm. Unbelievable.

Look how gigantic a normal binky looks compared to her.

 

But.....I love this saying outside of the NICU.

 She's a little person with hopefully a big future ahead of her.

 

 We love this little baby bean. 

Up and Down, Up and Down

Oh my! The other night when Justin and I were driving home from the hospital, I commented with a sigh, "it can only go up from here, right?" One thing is for sure- there are a lot of ups and downs with this thing. It has not been that fun of a ride for us. I have to keep reminding myself that trials are supposed to be "trying" and this has been a far cry from easy. The words,"Just Hold On....the Light Will Come." (song by Michael McLean) keep running through my head.

And that's easier to do on good days. Yesterday was basically an up day...

She had an eye exam, which that is not fun to watch and is stressful for her. However, when the Dr. reviewed results with me, her vessels seemed less engorged and had grown about 1/4 cm (He likes about 1/2 cm/week growth, but something is better than nothing.) Since they did not get worse and we saw a little improvement, he let us hold off for another week to see if things progress in a positive direction before deciding on the Avastin injection. I felt good about it. It answered our prayers in a small way.

 

Reese weighed 4 lbs. 13 oz. She's been on a weight gain lately. That's good to see her growing- she's more than double her birth weight now. I got to put her in her first set of clothes (that belong to the hospital, but still..). Preemie clothes really will not fit her now- she's pretty head to foot in this one. They ordered for her isolette to now be raised up and have her keep her own body temp (dressed and swaddled). I got to hold her, my friend stopped in to see her. I had a nice discussion with another NICU mom about how our babies have been off of meds for a nice stretch now. We were talking about how if we could get the eye problems figured out, it seemed like we were getting on our way. Reese took a full feeding out of a bottle. Yesterday was exactly one month until my supposed due date. Seemed perhaps that the worst was behind us.

I left the day on a pretty good note. This is how little sleeping beauty looked when I left her for the night. She was settled in, quiet and comfortable. Overall, it was a good day.

 Today....well, its been more of a down. Last night when I called to check in on her, the nurse said she was breathing rapidly. They had to bump her oxygen up to 4.5 liters (which gives her more flow- it's like an fan blowing up your nose on that high). She has been on a 4 liter flow, so going up is not that good. She was requiring about 39%  and last night she was up as high as 55%. This is not progress either. So....there were a few things I was suspecting 1. She hadn't pooped all day, which affects her oxygen, 2. I knew her blood counts had been border-line low, which affects her oxygen 3. Wondered if her nose needed suctioned out (they had already tried that) 4. Wondered if she was stressed a little adjusting to the isolette being raised. So...I went to bed last night worried/wondering what's causing the rapid breathing.

 

Today when I arrived, it was confirmed that she needed a blood transfusion. I'm not afraid of blood transfusions- she's had probably 15 of them already so far, I've lost count. These little ones have a hard time creating red blood cells. Transfusions help her do what her body can't keep up with very good yet. It will help her. It's just discouraging for one more thing to happen to her, especially because we're really wanting to focus in on her eyes. Every other thing that happens, you wonder how it will affect what's already going on with her eyes. And I'm already freaking out about the eyes! Plus to get a transfusion requires a cut in her feedings- she will now only get about 1/4 of her full feeding, it also requires 2 IV's that they had to get started in her. It takes 4 hours to pump it through and it's just overall exhausting. On top of that, they are giving her Viagra every 6 hours. Yes, viagra to my 2.5 month, 5 lb. baby. It's to help relieve pressure from the vessels in her lungs- they think this will also help her breathing along. I know its all to help her, but I cringe when I think of all that has to be done.

I felt so bad for her today. She was restless and uncomfortable in her isolette. Her oxygen was all over the place and she kept requiring more. I attempted to hold her to see if I could comfort her, but then her stupid IV started leaking all over the place. So...we put her back in he isolette, changed her clothes and gave her a little sponge bath, set her under the warmer for a bit, changed her diaper, readjusted the IV, sucked out her nose and got her some warm blankets. She seemed to feel more comfortable after that and then I held her again and she settled in nicely. Poor baby. They started her transfusion shortly after that. This cute bunny hat was given to her by a grandma of a former NICU graduate. People are nice.

So....up and down we go. Where it stops...no one knows. Hoping that this blood perks her up a bit and that we start seeing some progress soon. Please keep praying for her.

The Eye Exam

 

Well...we had the eye exam on Sunday. Here are nurses, Carolyn & Kat,  getting the pictures of the eye. The eye Dr. was there and viewed the findings with us. He showed us what the eyes looked like on Thursday and showed us the comparison to Sunday. So the report was basically that it hadn't changed much, although he was leaning towards a slight progression of the ROP. He feels the vessels were a little more dilated and the "ridge" was a little more defined.

 

This was not exactly what we were hoping/praying for. So the Dr. recommended us doing the Avastin injection tonight (Monday), so last night was a sleepless night. Justin and I stayed up researching, praying, talking, thinking everything through. We were both still feeling a little unsettled and didn't feel ready to make the decision about how to move forward. With our research, more question arose and we didn't feel ready to sign the consent form.

 

Today we were able to have a meeting with the eye Dr. to go over our questions and voice our concerns over whether or not we've given it enough time to see if it will improve on its own. It had only been 3 days between exams, so we wondered if that's long enough to see improvement, however, its risky to wait too long, especially since Reese's progressed quickly.

 

To make the decision harder, this is a very new technique. As in, Reese would be the third baby at EIRMC NICU to receive this. Avastin is a chemotherapy drug and using it in this way is an off-label use of the drug. It's risky, yet has had incredible results in "buying more eye real estate". Avastin essentially stops the abnormal growth of the blood vessels, which has shown that it then allows the vessels to grow normally further out into the zones. Hopefully into an element of zone 3 to get at least some peripheral vision. In the past, and in many hospitals like Primary Children's, laser is the only option and laser is permanent. They laser to prevent abnormal growth, but they loose a lot of vision.

 

It's a hard call because if it corrects on its own, she could potentially have normal vision. If we let the ROP get away from us, it could cause retinal detachment, which is then blindness. If we use the Avastin, we could hopefully get more good growth out of the eye, but most-likely loose all or some of peripheral vision when they eventually laser things. To regress on its own would be our best-case scenario. Other scenarios are kindof like our experience with cancer- would you rather have cancer in your daughter's body or poison? You don't want either, however, you take the drug to save the life. It's similar- you take the injection to save the eye sight. Not a fun choice we have ahead of us. It's really stressful because eye sight is pretty darn important.

 

After our meeting today, it was determined to re-examine her eyes on Thursday. We felt that a week gives us a better spectrum of improvement/progression, yet doesn't give too much time to get away from us hopefully.  If there is no improvement or if its gotten worse, we'll most-likely go ahead with the Avastin injection and pray the it buys us some peripheral vision. And that there are no complications from the injection (a whole other ball of worry).

 

So.....just keep praying, praying, praying. We are relying so much on Heavenly Father and trying to seek out what we should do. I want to sincerely thank each of you who have been praying or fasted for us. I was overcome with gratitude for the love and compassion you have shown through remembering us. This is really tough. It's like petitioning for every organ your child has to function right. Every day is a new challenge and we need the added strength and comfort that we feel from your prayers. With all of our hearts, we thank you. We are incredibly blessed to have such a great support system of family, friends and neighbors.

 

Specific prayers: Pray this week that Reese's ROP might regress on its own. Pray that we might be guided in our decision. Pray that the Dr. will be thorough and that no complications will arise. Pray for a miracle- we still have faith that this could happen.

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And some good news of the week........

 This little chubber is up to 4 lbs. 8 oz.

 

 She drank her first full-feed bottle!

(Only 8 feedings per day in a bottle to go)

 

 And....they popped her top on her isolette for a day because she was keeping her own body temp up so good. This is the first element of clothes she's been in- a little swaddle sack. She was totally swaddled, but this girl has to have her hands out by her face, so we set her free when we arrived.

 

 

The only sad thing about all of the progress is that it takes a lot of energy for her to keep her own body temp or to suck, swallow, breath (drink from a bottle). So...since the ROP came on, we're kindof scaling back on what we're expecting of her so she can throw all that energy into creating good blood vessels in the eyes. We're trying not to overdo her to get some eye benefit hopefully.

 

We have been in the NICU for 68 days. Longest, hardest days of my life (well, except for bedrest days maybe...)



Our Baby Reese

I realize that it's been ages since I've taken to this blog. I've had all sorts of intentions to updating, but life has taken on new challenges for us and time has not permitted. However, I have decided that I need this blog- to update and share news with everyone in one place, to keep record for our family and for added faith and support. Our blog was a great source of therapy for me during our trial with Rylee's cancer and I hope it will do the same for our challenges with our new baby girl, Reese.

Who's Reese? Long story short: {At some point, I'd like to give a more detailed account of the last several months, but for now, here's a quick recap.} In October of 2012, we announced we were expecting a baby girl. A few weeks later, ultrasound showed that I had placenta previa. At the first part of December, a follow-up ultrasound showed that placenta previa was resolved, but I know had cervical incompetence and was put on immediate strict bed rest. I was on bed rest at home through the month of December. December 26, I started feeling like I was leaking some fluid, so I went to the OB to get it checked. At my appointment, it was found that I wasn't leaking amniotic fluid, but I was dilated to a 4, had a bulging bag and the baby was breach- which means that baby could have almost fallen right out. I was 23 weeks pregnant and immediately admitted to Madison Memorial. The Dr. thought the baby would come that night. A few days tilted on my head kept things stable and I was transported to EIRMC. At this point, I had developed pulmonary edema, a few days later; I had a ruptured membrane (treated with antibiotics) and for the next 2 weeks, nearly delivered this baby about 6 times. After holding things out for 2 weeks, our baby girl was born on January 9 at just 25 weeks and 3 days along. She weighed 1 lb. 15 oz. and was 13.5 inches long.

One of her first pictures. Her eyes were still severed shut and her body looked like a plastic doll. Her feet were about half the size of Justin's pinky.

 

I saw her briefly right after the c-section, but this was the morning after once she was settled in her isolette.

 

 

Me & Jus with Reese. First time I held her was on her second day of life.

 

Reese at 1 week old

Not much bigger than a kind sized candy bar. Pictures are deceiving unless you have something to put her size into perspective. She's a tiny little bean.

 

When she was about a month old, she started developing some mysterious bleeding come from her throat. We were life-flighted to primary children's to have them take a closer look. We spent the month of February in Utah with her.

 

The bleeding in her throat ended up being a cut in her upper airway and healed on its own in about a week. What a blessing! Once she was stable, through another tender mercy, Primary Children's flew her back to EIRMC. Another miracle and blessing for us. This is her when she arrived back to EIRMC from PCMC. Just another day in the isolette.

 

 And these are some recent pictures of Reese. She is now up to 4 lbs and 3 oz. We have started working with her on taking a bottle and weaning her out of her isolette into an open crib. It is wonderful to see her progress, but this has been a tremendous trial. I wish it was as easy as the summary of it all sounds. I would have been 34 weeks pregnant this week, and every day outside of the womb, Reese has been fighting for her life. Micro-preemies have a hard battle. She's was born with an infection (that she got from me- my whole placenta and umbilical cord were full of infection at birth), she's had bleeding in her brain (their blood vessels are super fragile), the bleeding in her throat set her lungs back, she's been on and off food- trying to monitor her digestive system. She's gained weight, lost weight and the rollercoaster is non-stop. Everyday changing- lots of ups and downs. It's like expecting these little tiny babies to learn and do everything on their own that is usually taken care of in the womb with very little effort for moms. The miracle of life is amazing- as I've witnessed her growing on the outside, it makes me regret any complaint I ever had in pregnancy. I would have given anything to carry her to term. Their little hearts are at risk, lungs, eyes, ears- you name it, these micro's have a hard battle ahead.

 She is beautiful. Every little limb was formed perfectly. She is as sweet as can be. She is a little wiggle worm and moves all around her isolette. Her life is a miracle and someday I will share the undeniable ways that Heavenly Father has preserved her life.

 

This is so heartbreaking though. Besides the obvious heartache of not being able to have your baby at home with you and that she's 2 months old and none of my other kids have personally met her, you have the all the rollercoaster of challenges and concerns for her future and her ultimate outcome. It breaks my heart to watch her struggle and it feels very helpless. The whole journey has felt out of my control. Heavenly Father likes to remind me often of who's really in charge. I am but a pawn in the game. It has challenged me more than I've ever experienced in remembering to trust in the Lord and put my faith and hope in His plan, not mine. I would not have chosen this.

 

Special Request for Specific Prayers/Fasting:

 

Yesterday, we got some more heartbreaking news. Babies born premature are at risk for developing retinopathy of prematurity (ROP). Although eyes are one of the first organs in the body to begin developing, they are not completely developed until several weeks after birth (even in full term babies). They are particularly at risk for problems with blood circulation to the retina. ROP is when immature blood vessels to the retina develop abnormally. Reese had 2 eye exams prior to this and they both came back with no signs of ROP so far. Her exam yesterday, showed that the blood vessels have started to progress, but in a negative way. One main concern is that it took such a sudden turn for the worse. ROP is often mild and requires no treatment- it can be corrected through monitoring oxygen parameters. However, more serious cases can lead to scarring or detachment of the retina and will require treatment. They usually won't be blind, but if treatment is necessary, they can loose their peripheral vision. There are 3 zones in the eye. The first zone is your central vision, the second zone is the area in the middle and the 3rd zone is your peripheral vision. Reese's is in her zone 2. Her zone 3 has not started forming. If treatment is necessary, they use a chemo drug called Avastin and do shots into the eyes to stop the abnormal growth. Then they do a laser, which at whatever point the laser is done, it means permanent vision lost in areas not developed at time of laser.

 

Her eyes will be re-checked on Sunday. We would appreciate any specific prayers that her eyes will be able to progress normally and that her eyes may be protected. It is our hope that her eyes can develop as much into zones 2 and 3 as possible and that treatment will not be necessary. We are also fasting Saturday in hopes that special blessings will be unlocked to help save as much or all of her vision. We are hoping that we still have  a chance at this correcting. It is so concerning to us and we would appreciate any added faith, prayers or fasting in her behalf.

The Florida Keys

 What a way to kick off summer! Just after the kids got out of school for summer, we dropped them off with my sister Hollie and her family (my kids had the time of their lives and still talk about it/ask to go live with them often- they seriously had a vacation of their own...another post!) and Jus &I headed off to the.....

Florida Keys

Justin has a client that owns this lovely resort there and he "had" to go there for an audit. (And of course, he didn't have to twist my arm to come along for the ride.) I know...I can hardly believe our luck. Who knew the life of a Rexburg accountant could be so glamorous? We are so grateful for opportunities like this. It's what I call a work/pleasure trip...work for Justin, pleasure for me.

No, this is not a screen saver. I took it with my cell phone out the back door of our resort. Isn't it lovely? Who wouldn't want to wake up to this every morning? It's seriously such a dream of mine to live somewhere so beautiful. I just love the whole Island feel...the laid back atmosphere, sand in between your toes, island music in the back ground, the sun hitting down on your skin, the soothing sound of the ocean, taking life at a slower pace....not a care in the world is how I feel when I'm in places like this. I love the simplicity of it all. Of course, once you throw reality into it all..it kindof takes the paradise out of it. Who would want to go to work if you lived here? Who coud afford a house on property like this? Who would want to cook or clean or do life in a place like this? I guess that's why it's so dreamy on vacation because you can just enjoy it!



The resort is called "Cheeca Lodge". It's located in a quaint little fishing village called Islamorada- in the Florida Keys. It's full of history and the walls of the lodge were scattered with old photos of people who have enjoyed Cheeca for generations. George Bush Sr. would frequent the resort and they used to do a fishing tournament named after him. A few years ago, the original resort had a fire and they had to re-build it, so it's all new and nice, yet has all this history, which made it so charming. 

 Ahhhh...we did a lot of this.

And the resort had some fun ammenitites- like these canoes that we took out on the ocean.



Or these cruisers. The resort is on a lot of acreage, so you can ride the bikes around the different parts of the resort as well as on the paved bike paths outside the resort, so we took a little ride around the town. One day I went out on my own and did some shopping in the local shops. I love a day where you can just take the time to see what you stumble upon.



We got a little golf in. And I mean "a little". Sorry, but I just don't really get golf. A few swings of the clubs was enough for me. The course was at the resort, but the greens weren't very green. Golf was short lived for us.

This tree was on the property at the resort. Like I said, this place had history. It's a very old tree and the roots have essentially grown outside the trunk of the tree- very awesome! It reminds me of something that would be found in a swamp...or a haunted house.

 



 It had two pools- one was right off the ocean and one was attached to the spa. It was absolutely beautiful. I love to people watch at the pool- this resort particularly had a lot of "sugar daddies" there. I couldn't believe how many younger women were with a lot of really older men. The men seemed to be trying to re-live their youth and well, the women seemed to be enjoying the perks of having someone pick up the tab on a lavish get-away. I liked making up stories in my head about these wealthy business-men who were having affairs on their wives...taking their Brazillian beauty to a quaint resort...soap opera stuff like that. Makes for an intriguing day. (I wouldn't be surprised if some of it were true though.) It's kindof a pricey place to stay, which was a little fun for me to observe how the wealthy live. They have a clothing boutique at the resort and I went in to browse. While I was blown away at how expensive it was, other guests were simply "charging" loads of clothes to their room. No worries...the sugar daddy will get it. {Reminds me of a time when we were first married. We went to Ruby River one night when we lived in Salt Lake. We opened the menu and started cringing a bit..."$20 for a steak?!" Then an older couple next to us sat down, opened the menu and said, "the prices aren't bad." I guess it's all perspective- what's expensive to one, is affordable to another.}

Another thing I observed was how entitled and bratty some people act. There was a seemingly wealthy woman and her daughter lounging in their big hats at the spa pool, drinking drink after drink. The mother gets up to move her lounge chair to another angle and she realized some glass on the pool deck. The next thing I know, she's got the manager out there just gasping at how she can't believe there is some broken glass and goes on and on about how she could have easily been cut. She is just in disbelief. I'm peeking behind my magazine, just laughing at how dramatic she's being. The pool hop/waitress comes over shortly with supplies to clean it up and the lady goes on and on about "be careful when you're sweeping that up, not to get cut, etc." The waitress looked at her and said, "don't you worry about me honey, even if I did get cut...it wouldn't be the worst things thats ever happened to me. I'll be just fine." I liked her response- I hope it brought that lady back to reality. Of course, the manager compt all their drinks, etc. I swear some people act like everyone owes them something. Pa-lease- it was a ridiculous encounter.

Just another day at the office for Justin.... {In all reality, this was rare. He really did have to work.}

When Justin was working, I would lay out, read or take the bike and go exploring. I would have to stop just to take it all in. This picture just captures how it felt to be there- beautiful, carefree and so relaxing. Loved it!

Of course, we had to walk around the resort- seeing how cheesy of pictures we could come up with. Mine on the leaning palm tree.
 

And Justin's...surfing. He won! Oh my heck, I can't even look at this without dyeing of laughter. Cheese Ball!

One night, we ventured away from the resort and drove down to Key West, Florida. I believe it was about 45 minutes from our resort. Yes, we were at the Southernmost point of the U.S.

Just a skip, hop and a jump away from Cuba.

That Key West is one colorful place (people included). I wish I would have gotten a picture of this whole street, but every house was a different, vibrant, cute color. Loved it- look how cute and charming this house is. Key West has a bunch of fun shops and interesting people. It's artsy and crazy and probably a good place for the party-ing crowd. I bought a few things: a pair of blinged out sandals, hot pink sunglasses and a giagantic chocolate chip cookie. You only live once, right? So fun seeing how out-loud some people live.

The drive to Key West was beautiful as well. Seriously..how can you not love a place that has turquois guard rails along the high way? Talk about Color Splash. I really did come home inspired to add some more color to my life- my home, wardrobe, etc.

{Nothing sticks out in the Florida Keys like a fully clothed white girl in neutral colors.}

We flew in and out of Miami and then drove down to the Keys. After we got our rental car, we went over to South Beach, drove past Dash (you know, the Kardashions store- Khloe & Courtney Take Miami? Anyone?) walked along the beach for a bit and ate at the colorful restaurant called Mangos. We had a front-row table to a live Jamaican band playing- wow- that place was loud. But I had an awesome salad. In fact, I ate so many good salads there. Before we went in, we had a star- sighting right by our car, however, it was some supposedly famous rapper that neither one of us had ever heard of. I can't even remember his name now. That makes us sound so old. I had to text my little sister and ask her what he sang. Still didn't ring a bell to me. We're not heavy rap listeners around here. 

Just a side note to remember: Justin was lucky he even got there or home. When we went to rent the car, it was discovered that Justin's license was expired. News to us! Luckily I ws there to get the car. Then on our flight home, they barely let him through to board. He already gets double looked at any time we fly (he looks like a terrorist, apparently). Luckily I had went first and they asked if he was with me and well, the lady just kindof let it slide. People apparently trust me with potentially dangerous people. Ha, ha.  



And there you have it...our vacation to the Florida Keys. (And another cheesy picture :)

Of course the best part of the whole get-away was spending some quality time with this guy. It's so fun being married to my best friend- always a good time.



Good bye Cheeca Lodge.....it was simply wonderful!

Wanna know the saddest part though.....Cheeca Lodge was sold last month to someone who is not Justin's client. I had visions of bringing the kids back with us to enjoy it and making this an ongoing vacation. Bohoo. I'm so grateful that I got to experience it atleast once. Who knows...maybe one day we'll go back.