Life in an Isolette- First 78 Days

When I was on bed rest, I thought about writing a book- "Life from the couch". It actually was a whole new perspective on life and harder than it sounds to do. It's like you are in your life, but not a part of your life. You become a keen observer as you patiently sit and wait for the world to move on around you.

I guess that's what it reminded me of with Reese living the first 78 days of her life in an isolette. Either that or a baby that lives in a bubble. On March 28, 2013 she officially graduated from an isolette and got moved into an open crib. For a few weeks prior, they had been leaving the top off of her isolette, so it technically was an open-crib, but not officially. Once a baby reaches a certain weight (usually over 1800 grams), they start being able to keep up their own body temperature. It actually takes quite a lot of energy for them to do this, so you don't want to do it before they are ready. It is one of the requirements a baby must meet to get discharged from the NICU.

I really am quite grateful and impressed by isolette's. When Reese was first born, the isolette recreated a womb-like experience for her. They would set the humidity at 80% and would set a temperature just right for her size/age. As she grew, the humidity weaned down and eventually the temperature was turned totally off. The isolettes are quiet for them and they were typically covered up to keep the light out so the babies don't get over-stimulated.

Entrance to the isolette is just 2 little doors on each side to get your hands through. The top also pops off, but that didn't happen too often because it's important to keep the temperature heated inside. She's spent many a days in these isolettes. They do change them out to keep them clean, but all of them are the same. Man those things are toasty inside though. You can feel the heat from the outside.

 

 This picture isn't very flattering with the IV out the top of her head. (Funny how that hardly phases me now.) The yellow mattress thing under her is what she laid on for the first month. It feel squishy- kind of like a glue mixed with water texture. It allows the nurses to "nest" the baby- it can conform to different shapes or to fit around their body like play doh. The usually hollow it out in the middle for her body, then raise the sides like a wall around her.

 

 

She is famous for all of her moving around. She preferred sleeping on her belly (which they allow in the NICU at first), but she's had some pretty funny poses. I like to think that most of the time she's been pretty comfortable. The yellow mattress nest is formed around her. They put the blanket over top to help her feel secure.

 

 Sprawled out

 Her arms are often up or stretched out.

 She seems pretty tired here.

 Stretched way out.

Her sweet spot. This little thing over her body is called a Zaky- it's like a rice bag that looks like a hand. They put it in the isolettes with the babies for comfort. Not a bad idea if you have a child that likes to feel like you're there .

Some of her earlier pictures- see how transparent her skin was? She's a hands girl- likes to have them up by her face. They say this is a self-soothing thing that helps them feel secure.

 

This is Reese at 1 week old. She had wiggled her way all the way to the bottom of the isolette. Kicking against the glass. This happened several times. The nurses have also found her right up along the side as well. I'd always tell them- NEVER leave the door open- she might fall out.

 

 Another look at the zachy.

"Hello World!" Looking out through the isolette.

 

This is how the top pops off. They'd raise this up to get her out for holdings or if they had to place an IV or sponge bath, etc. Otherwise diaper changes, temp checks, etc. are done through the side doors.

 Another funny pose.

At Primary Children's, they put them in these sleep sacks. They are supposed to be "nested" in there, but Reese would kick her legs over the bottom. It always looked like she was floating down a river in an inner tube. This girl likes to feel comfortable, not confined.

 

 

Wow! I've spent a lot of days looking at my baby through the glass. At this point she was around 6-7 weeks old and I had only been able to get her out of the isolette about 7 times total. I started crying when I told the nurse at Primary Children's that.

 

 Side Sleep position.

There's a smile. She'll often smile while sleeping- I like to think she's surrounded by angels, helping her forget her reality.

 Trying to crawl out. "Get me out of here!" Ha, ha.

 

Just chillin in my isolette. NBD

 

 This is when they popped the top to start testing if she could keep her own body temperature.

 

 And here she is in her big girl, open- crib. She's doing great. One of our requirements is checked off. This baby can keep her own body temp! One step closer to home.

 And a few last poses to remember her isolette days. She's come along way.

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...)