Battles

This post is probably going to seem a little negative, but I just wanted to remember some of the "realness" of this experience.

When Jaden looked at this picture, he said, "Look, here's Reese in her first police officer outfit."

It's a NICU outfit, but not sure why it reminded him of a police officer?

We have had our fair share of the medical world between Rylee's cancer and Reese's micro-preemie/NICU state. Over the past 5 years, we've spent countless of hours at Dr's, hospitals, appointments, treatments, therapies, etc. It's exhausting to say the least. And...just like anywhere else, you get your share of both good and bad nurses, Dr's, therapists, etc. Afterall...people are just people. Some are better at what they do than others. To error is human and the medical profession is no different.

The problem is...I'm too analytical. I want to know to know the why of everything.  Why is this happening, what caused it, what will the outcome be, etc. And probably from experience now...I realize that just because a Dr. or nurse or therapist says something...doesn't mean it's the only way or the best way. They are just people...with opinions, theories, ideas and experience of their own. I've become a smart mamma. I ask a lot of questions, I want to know all my options, I research stuff that's going on with my kids. I think ahead- I learn about what's going on so I have a frame of reference and understand what is being talked about. I am a "ducks in a row" kind of a person, so it bugs me when things are all willy-nilly. I want a real answer. I like consistency, I like accuracy, I like people to own up to what they are doing. I'm not going to believe everything they say if it doesn't sound or seem right. You better bet that I'm the type that will call them out (in a nice way, of course.)

First off, let me just say that I am very grateful that there is a place where Reese's needs can be met. I am very grateful for the nurses who care for her around the clock because I'm not able to do so yet. I am grateful that she is under the care of neonatologists and that they have saved her life. And I am so, so grateful for our many wonderful, caring nurses who love and take care of Reese like I would.

Today was just a frustrating day at the NICU. It was a combination of things, but collectively they just all added up and it flat out made me so mad. I realize that for most of you, this NICU life will mean nothing to you, but here's a list of "stuff" that happened today:

• I arrived at 10 a.m. Reese's feeding was suppose to start at 9 a.m. and the nurse was just barely starting her feeding- an hour late. When one feeding gets off, it messes her up the whole day. Feedings are like medicine there- keep on the schedule!
• Although she is supposed to be fed with a bottle atleast every other time or especially when she's awake and alert, the nurse had put her feeding on a pump. She was wide awake, looking around, very alert and the morning feeding is always when she does the best with the bottle- I felt like her nurse just didn't want to take the time to do it, which is frustrating because the feedings are what is keeping us at the NICU!
• When I arrived, she was covered in spit up. When I asked the nurse if she had just spit up from the feeding that was just started, she said that no- it was from the previous feeding. "YOU MEAN FROM 3 HOURS AGO AND YOU ARE JUST NOW CLEANING HER UP?" Livid!
• Her nose was sounding all congested and clearly needed suctioned out- also ignored. And spit up no doubt got in her nose. So mad when the nurses aren't attentive to her needs.
• She usually gets eye exams on Thursdays, but since she just got one done on Sunday night and since the exams are very stressful for the babies- it was determined that she would not get an exam done today. I had even verified that last night before leaving the NICU. Well...a miscommunication happened and she was indeed given an eye exam.
• Since the eye exam wore her out so much, basically no bottle attempts were successful today.
• Her clothing/bedding is supposed to be changed during each night shift- neither happened and she was still in yesterday's dirty stuff.
• Her nurse said she was all sweaty. Come to find out, the temperature in her bay was turned up to 78 degrees and she was sweating. When I asked if her temperature was high, the nurse said it was actually low- so basically she got cold from her sweat. Be attentive.
• The NICU clerk comes up (in my heat of complaint) to let the charge nurse know that she found some of Reese's paperwork in another babies chart. Great! My trust was already shaken.
• There was a bunch of stuff going on with her oxygen (her nose was getting dried out, kept having to turn her oxygen levels up, etc.) So- they ended up putting her back on the vapo therm to better hydrate her nose. We're trying it out and seeing if it helps, but she was just having a hard time being back on it and its really like a step backwards for us.
• Reese just seemed "off" today- not comfortable, tired, oxygen and feeding issues, etc. The eye exam alone can have a big effect on things, but typically it means she's symptomatic and that something more is going on. At rounds today, I asked the Dr. about her hematocrit level and wondered if she needed another blood transfusion. He wanted to wait until Monday, but I was feeling like it needed checked. Why wait for everything to fall apart before doing something about it? She's also on a diaretic which helps her get excess fluid from her lungs and other body parts off. She had a pretty big weight gain and the dosage was never adjusted accordingly, so I asked about that and he did order an increased dosage. Basically...it's frustrating when it seems like more should be done and it's not. To make a long story short- her hematocrit was too low and they are now doing a transfusion tonight. This should help her overall. She's still not producing her own red blood cells and needs that transfusion to boost her if it gets too low.

 

My main complaint is this: I AM JUST A MOM! Do I really have to be calling the shots about blood transfusions? Do I really need to ask if the dosage should be increased because she had a big weight gain? Do I need to call it to the nurse's attention that she should have cleaned up a helpless baby after she spit up instead of making her sit in it for 3 hours? These people went to school to do what they are doing. They chose this as a profession. They get paid to be there. There is already a massive amount of unpredictability and uncertainty with preemies- especially micro-preemies. Human error can lead to big problems with these fragile ones. If she catches a cold, it can turn into pneumonia, which can be life-threatening. And...it can all start by temperatures not being watched, or letting a baby get cold from her own sweat. Too much or too little oxygen is a big deal with big consequences. My dad has said this quote forever.

"Wherever you are....BE THERE!"

When things get neglected- it means a longer stay for us, which means more time away from my other kids, etc, etc, chain reaction to the upheaval we've already been through. Basically....IT MATTERS AND AFFECTS US A LOT. Our goal is to get Reese home- not to have her fed on a pump every feeding. I'm just a mom who has unfortunately been thrown into these medical situations and have had the fast track through nursing school- twice! I never wanted to be a nurse, yet I can now do these people's job. The truth is- no one cares about Reese like I do. And whether I like it or not, I am her advocate. I need to fight for her and demand that things be done right. I am her mom and that's my job. I have to let them know my expectation and express my frustrations when things fall apart like they did today.

So...I did. And...we made a list of nurses who know Reese who will be assigned to her from here on out. I hope that we get some consistency. I hope that she gets the best care possible. I hope that together we can get her home. The nurses on this list have gotten to know us and more importantly "get it."

Yesterday was quite a different story. Our sweet nurses who love our baby girl had gotten her all dressed up and did a little photo shoot with her...because she was 90 days old. They inked her footprints and hand prints and made a scrapbook page for me to take home. These are the type of people who should be nurses. Good nurses are like good teachers...they are natural at what they do and they are just good. You can't teach greatness. You can't teach instinct. The get that it's more than writing down vital signs and adjusting oxygen levels.

 

It breaks my heart everyday that she can't be home with us. It's hard when things happen that shouldn't...because she's the one that has to deal with it. Leaving her each day with some people that I would never in a million years even hire as a babysitter....it's tough and it takes a lot of trust to do it. And sometimes I wonder how....really how I even manage to do it day after day (91 to be exact). She is my 3 month old baby who I have never even spent 24 hours with yet. It's not a normal situation. I'm the one that wants to be taking care of her. Kind of a crappy deal, really.

I was reading Nie's blog today and something I read from it really struck a cord with me and I think it's how I feel about the whole thing. It's really the only way that I can find peace with the entire situation. She said, "Heavenly Father is in charge of our family. He knows what we need and how to comfort us. Everything will be OK as long as we have faith in His plan for us." What else can we do besides put our trust and faith in Him? Learning to be submissive to His plan takes time. I'm working on it.

 I'm not so sure about this....I swear I'm getting weaker every day. But...having trust in His plan is believing that whatever He gives you is for a purpose and through Christ he will make it possible to have the strength to endure and get through it. And as far as Reese goes....this is true. This little thing is a fighter and just like Rylee (& my boys who have gone through these things in a different way) she was born to do this. She is surviving....even if unfortunately some days she's doing it while laying in her own spit up.

Keep Calm.....and NICU On!

Update on Reese

Today was DOL (Day of Life) 88 for Reese.

I would have been 37 weeks and 5 days pregnant.

This week she will be 3 months old.

We are just about 2 weeks to due date.

Reese has had a busy few weeks, so I'd thought I'd give a quick update.

This was Reese last night just to let you see what she looks like these days.

 

 

She currently weighs 5 lbs. 15 oz. Thank you for all your prayers about her growth- her growth chart actually looks really good and she's consistently gaining, which is also good. She wears a regular newborn sized diaper now and is in between preemie and newborn size clothing.

 

We actually get to dress her now, which is fun.

 

Reese's "bay", which is basically the spot she stays in at the NICU is right by a window. This week, on Rylee's 6th birthday, we had the kids come see Reese through the window. I think we all had a few tears in our eyes. Jaden was especially excited to see his little sister. She is almost 3 months old and they have yet to see, meet or hold her in person. Hopefully soon.... This was a sweet moment for me as a mom.

This is her size in perspective to holding her.

 

Reese has had several different oxygen systems. She started out with a ventilator for her first 24 hrs, then was on bubble cpap for a month, then went back on the vent when she got the bleeding in her upper airway for about a week, then was on high-flow, then put on vapo-therm. This pic shows the vapo-therm, which she's been on for the past month. (Who knew there were so many oxygen options?) On Saturday, she transitioned from Vapo-therm to wall oxygen. This is a step in the right direction. She will come home on this form of oxygen.

It hooks into the wall here, but when we bring her home, she'll have the nose cannula and then we'll have an oxygen tank and monitor that will go wherever she goes for awhile. It will be a bit of a pain, but we can deal with it.

We gave her a bath tonight. She loves her bath and enjoys being in the water. She was a little cold afterwards, so we snuggled her up to warm her up. Sorry for the sideways picture. She's doing well on the new oxygen system. She now has 2 of the 3 requirements to come home passed off 1. Keeping her own body temp 2. Breathing (on her own or with the help of a wiff of oxygen- typical for babies born as early as she was to come home on oxygen).

The third requirement is that they have to take 80% of their feedings through a bottle. (Reese is fed 50 ml every 3 hrs., so 8 times per day.) We've still got a ways to go. The Dr. said eating for these little ones is comparable to an adult running a half marathon. It takes a lot of energy for them to do it and they have to drink it all within 20-25 minutes or else they'll just burn all their calories they've worked so hard for. Right now, every other feeding is given through a bottle. The other times it's given through her feeding tube. We're working on it and hopefully things will kick in within the next few weeks.

 

Reese had another eye exam today. I never really gave an update from the last exam either. So last week's exam showed some improvement. Her vessels looked less tortuous and less engorged. Today's exam was similar- she still has ROP and some areas of concern, but they've mellowed a little. We're still getting some vessel growth, but we still need more. She is still in stage 2 of ROP and also still in zone 2. Our hope is that she'll stay in stage 2 or really improve and be in stage 1 (stages 1-5) and be able to get more growth- into zone 3. (Ideally, all the way so she doesn't have to have laser and she'll keep all of her vision).

 

Last week, the Dr. felt like she was past the point of benefiting from the Avastin injection. So that is now off of the table and no longer an option or a decision. I feel good about that and have faith that Heavenly Father's will, will be. If we end up loosing peripheral vision, I know Heavenly Father will help us deal with that. I would rather have her have some vision than none. We gave her another blessing tonight and all we can do is hope and pray that Heavenly Father will bless her. Keep praying for her eyes- specifically that she can get good vessel growth and that her eyes will be able to finish developing properly. Also that her ROP doesn't progress into more severity (like progress to stages 3-5) and that her eyes will be protected from any retinal detachment.

  

Her eyes have been a major stress for me. So far, we're seeing that her vessels have grown about 1/2 cm per week. She is almost 38 weeks and apparently babies eye's continue to develop until they are around 40-42 weeks. Sometimes maybe to 44 weeks. The Dr. said that she is about 5 cm away from complete eye development (for the vessels to be grown out to the edge of zone 3). If we get this, then we get full vision. If it doesn't grow to the edge, they will have to do laser to prevent the vessels from pulling on the retina, causing retinal detachment. If you do the math, we might be a little short and laser is definitely likely. But...this is where our faith comes in and we are praying and hoping that we get some really good growth and that she will be blessed with full vision. Anyone who is willing to put her name on the prayer roll at the temple, to fast for her this month or pray in all your prayers, that would be great. We've seen miracles happen before...so we know this is possible. This next month is so crucial and will determine the outcome for her vision. Time to throw in all the chips and hope for the best. What a blessing this would be for her and us. We take so much for granted each day.

 

She is having more wakeful periods during the day and it's fun to interact with her more.

 

 This was her Easter outfit. Love the bunny bum. And it's true....Somebunny does love her.

 

God gave us a miracle.....Her name is Reese.

{Another new post before this}

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.