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

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}