TNA - Our Life

We have been home now for a week. I can't even believe it. It is such a big change. A newborn baby, at home for being gone for nearly 14 weeks and more.

Dirty diapers, dozens of bottles and the endless beeps of his oxygen monitor - life of a mother. And I love it.

Cooper is such a blessing. Really.

We are getting used to being home and re-adjusting, unpacking and re-organizing. And more than anything getting into the groove of things. Getting up at night, getting used to his oxygen needs, making bottles etc. etc.

None the less being home is an amazing feeling.

Four generations, Annette as a baby (left to right) her mother Michelle, grandmother Jackie and  great grandmother Esther. Turning 27 tomorrow, it has me reflecting on life, love, where I am and where I want to be.

Dear Cooper,
Laying quietly, eyes unopened, breathing tube, feeding tube, IVs and fluids could sum up the first few days of your life. We never planned for you to have such an early delivery nor such a scary one but you are loved just the same. We have no "excuses" or tall tales of why you came early, it was just in our cards. Maybe your father and I were so excited for you to arrive God granted our "Can't wait until Cooper comes," small wishes.

I want you to know this isn't your fault. That you are special enough to be born early, that the world wanted to meet you 16 weeks early. And we will never regret that. You were created out of pure love between me and your father, a young and innocent marriage that wanted and planned for you.

You may face hardships later in life because of your prematurity but know that this is you, and still perfect. Remember that we as your parents will make sure you get the best of the best and that you have had the best of the best nurses and doctors to help you thrive in this big world. Between brain bleeds, blood transfusions and supported breathing you have already conquered more in your little 3-pound body than most adults do in their entire lives.

Cooper, please remember to be honest and true as you meet new people in life. That every single person is fighting their very own battle so be kind. Be yourself, because you are good enough. Always tell the truth because in the end the truth will never get you in as much trouble as a lie.

Always remember that you are loved. You will make mistakes, you will trip and fall but as your parents we are always there for you. Always. Life isn't always easy but remember that just at 10 weeks old you have already overcame so much. Cooper you are a warrior you have overcame so much pain and near-death with endurance, love and pure dedication for life, even as a tiny baby.

We never want to let you down, but in all honesty I am sure there will be a time where both your father and I will let you down, make you mad or even disappoint you. But please remember we are only human as well, we don't mean to hurt you but we aren't perfect so don't hold it against us. We may not always be the best mother or father but it won't be for lack of trying. We promise that we will do everything we can to prepare you for what you will face in life. We promise that we will never desert you, that we will always be there for you, no matter what hardships you face. We may not always give you what you want but we will always do our best to give you what you need.

Above all else Cooper, we promise that we will love you and do our best to make sure that you have everything you need. We realize that our life is no longer our own, it belongs to you and our family now. You are our treasure, never forget that.

Love,
Dad and Mom

In anything else I sometimes have to remind myself of a lot of things nowadays.

I need to remember it's okay, to have some "me" time. While having a sore throat and not having any other "sick" side effects, I need to stay away from the hospital in case it is something and the horrible guilt I would have if Cooper ended up sick.

In doing so, I need to realize it is okay to read a magazine, watch a movie and just relax and try not to worry about not being in Cooper's room for 8 hours a day. In sitting here trying to tell myself that Cooper is good, I am fine and tomorrow is a new day, I realize there are a lot of other things that I need to do "note to self."

Note to Self: 

- It's okay to not be "okay" every single day.
- It's fine if you don't want to talk, if you want to cry or even if you want to be by yourself.
- Bad days are normal. And when I say bad I mean, bitchy, rude, bipolar and annoyed with the world but try not to take it out on people that mean the most to you, like family and friends or even Cooper's nurses.
- Sleep is not overrated. Even though you feel like you haven't done much all day, stress, worrying and even being at the hospital all day is draining, sleep; even sleep in from time to time.
- Be happy. You have a loving and caring husband, the cutest son, an awesome family, fantastic friends and the most amazing supporters.
- Humble yourself by being grateful. Grateful in everyday that your life has changed for the better since December 18, 2012.
- Love yourself.

After being in the Community Medical Center's neonatal intensive care unit for about 10 weeks now, we have been getting to know nurses and doctors more and even seeing them out and about in Missoula. I personally have never had an life threatening emergency, nothing like having Cooper 16 week early. I have never needed the help like having a premature baby.

The other night I saw a nurse in a local spot in Missoula, and it dawned on me that no one knew who she was to me. No one knew who she was to unit of early babies and their families. I wanted to make every person aware that she is part of a team that is saving my son's life. That she isn't an every day person to me, that she deserves a thank you from every mother, grandmother and soon to be mothers. That she is part of an amazing hospital that has nurtured, cared and loved for my 16-week early son.

Never would I imagine how much the nursing staff not only does for this little boy but does for us as a family as well. Neonatal intensive care unit nurses are heroes. It takes a strong person to not only work 12-hour shifts with only a 30-minute break but someone to take care of the tiniest bodies.

The dedication it takes to stand at my son's bedside having to bag him to help him breath touches my heart. To watch my son struggle in the first few weeks and how the nurses can keep it together and push through and still make sure I am okay is a blessing. The strength it takes not to shed a tear in what has to be one of the hardest units to work in is amazing.

These men and women are amazing people with genuine spirits. I owe so much to them for saving my son's life every single day for the past 10 weeks and many more weeks to come. Thanks to them and the wonderful doctors my husband and I can celebrate Cooper's life and his journey rather than dread talking about him.

It has to be gratifying to watch these little lives grow, and flourish and see these children months to years later. If you know a nurse and especially a NICU nurse, tell them thank you. Thank them for the lives they have saved, the future lives that will be in their hands and how many families they have touched like ours to allow people like us rejoice for a birth rather than grieve.

When the nurses warn you "two steps forward, one step back" that not only applies to Cooper's health but my very own attitude. One day I am down and out and the very next I am celebrating that Cooper is 3 pounds 8 ounces.

3 pounds 8 ounces. So amazing.

Its like the first couple months everything moves so slow, with well understanding since Cooper's health is priority. But then all of sudden everything is happening. Cooper is gaining weight. He got his first real bath he started to try nipple feeding. Its like the first 8 weeks of torture are paying off just seeing Cooper hit little milestones. Actually big milestones for him.

I can't believe Cooper is knocking on 34 weeks' door. We have been here for 10 weeks now, its almost like I am not sure what will happen when we go home. We will most certainly miss the nurses and doctors, but it will be so nice to be home.

Everyday Cooper looks bigger and healthier, like he is a big baby boy. His  personality is kicking in along with his attitude. Of course we may be a little bias but Cooper is the cutest kid on the block. I am so anxious for more milestones to finally take him home and be a "normal" family.

I can't believe that we have been in this journey for nearly nine weeks now. The time has really flown by. Maybe the time has gone by so fast because of the repetition, or maybe just because we aren't trying to focus on the time, just the health of Cooper. I would be lying if I said the time is getting easier, because it certainly isn't. I am so ready to go home. But not just me, to bring Cooper home.

We are so ready to bust out of this joint, of course Cooper isn't ready but still. We still have at least five weeks to go, there is a light at the end of the tunnel but it seems so far away. This time has most certainly been trying, for all of us. It has been trying for Tom and I individually and together as a couple.

Both of us want Cooper better, we both want to be with him and we both want to be home, and at this time we can't have it all. Only one can be here with Cooper and only one can be at home.

When Tom and I were married and then he went away we always said, "what could be worse," or "this is gonna be the worst we go through." Little did we know almost two years later we would welcome Cooper to the world and be faced with a big obstacle. An obstacle that will forever change us, our marriage and our future. We have been so blessed to have Cooper, a warrior that was born in the form of a 24-week preemie, born 1 pound 10 ounces.

There is a saying that God doesn't give you anything He knows you can't handle, or He knows you are strong enough for the battle - sometimes I wonder if we can have a break. Maybe we aren't strong enough, I know we say "we will get through this," but Cooper deserves to be home and healthy. The past eight weeks have worn on me. I am ready to "normal." I am ready to have my baby home, to be with my husband and to be together every single night not just part of the week.

Maybe I am just being a sucker tonight, taking it all to heart but this girl is missing home and everything that entails.

Cooper is 29 weeks now, time seems to be flying by! Cooper is now 970 grams which 2.2 pounds and still 14.5 inches long since the last time he was weighed. Cooper's test for microplasma came back negative which was great news. So no infection in his lungs!

He is still on the breathing tube which can have long term affects on his lungs. One doctor brought up the idea of using steroids so I revisited that issue today since they want to extubate him but we aren't sure how he will do. The use of steroids have their own pros and cons. The longer Cooper has the tube can mean the longer it takes his lungs to really develop in the long run. With the tube his lungs will always be kind of behind the rest of his body's development. Steroids seem to be like a "miracle" drug.

The doctor is confident that is Cooper were to get steroids it would be short term till he was off of the breathing tube. The side effect of the steroids could possibly be a higher risk of cerebral palsy, which Cooper is already "high risk" being a preemie. Back in the day when the medical field couldn't monitor preemies' breathing and setting like they do today they provided steroids which helped more babies, but long term those babies had cerebral palsy.

In reality Cooper isn't that far off, lowest his oxygen saturation can be is 21, he is currently running in the 50s.  Maybe I am just being a little impatient and selfish. We have decided against the steroids unless it is a must.

Sometimes it is hard to make this decisions. Decisions that really can affect Cooper for the rest of his life. We want to give him the best life possible with any decision we make.

Cooper is 28 weeks old - four weeks into life and a whole 2 pounds! Of course we had to celebrate it with a special photo opportunity! The little man has just been coasting right along. Besides gaining weight not much exciting is happening. We are hoping Cooper will grow even more this week so we can NOT have the help from any steroids. After a certain amount of time the breathing tube could actually be "harmful" for Cooper since it is continuous air into his lungs. But even with his breathing tube Cooper and I have had some wonderful "kangaroo time," spending six hours holding today! He does so good just settling right into my chest and falling back to sleep along with keeping himself warm.

Some days it is honestly hard to blog about "updates," when there are none or in some cases Tom and I decided to wait to share news until we can really know what is going on and the treatment. Little Cooper is moving along. One of the NICU nurses called early in the morning to let us know that he seemed restless and "unlike" him she thought maybe he was getting sick. So they ran tests, luckily they all came back fine. Cooper is still requiring a lot of oxygen, well it is unfair to say "a lot" since it is less than what it was. Hopefully he can grow in the next week to help develop his lungs more so we can get the tube out of his throat, something I am sure he would enjoy a lot more. At first it seemed Cooper was doing so good, and not to scare people and say he isn't do good now, it's just made us realize how nice that "honeymooner" stage was for us; coupling with the "two steps forward one step back" trend. It almost just hits your heart going day to day not knowing really what to expect! But like all of us Cooper has good days and bad days, he just has to work at it a little more.

While being in the NICU all the time can be overwhelming there some perks, like the nurses. They are all wonderful and each have their own special quirks about them. One nurse told me about hand molds another nurse does, so of course we wanted some of Cooper's tiny little hands. And ask and you shall receive.


Well today we got them, two of each hand plus a sweet little card "from" Cooper. We know Cooper's hands are tiny, itsy bitsy but to see them in a tiny little mold was amazing. The copper penny is about the size of his hand.  It is something we will cherish for a long time too come, something Cooper will be amazed at himself. The molds capture the lines of the palms of his hands, the outline of his fingernails, I can't believe how small and great they are. It beats any handprint accompanied on a birth certificate.

I miss home so much, living in a small town I usually look forward to traveling to a big city - shopping, food anything you want. Now that I am temporarily living here, I hate it and miss small town life! Growing up in California then moving to Salmon was most certainly a culture shock but now I appreciate it!

The traffic is insane when you come from a two stop light town and its like everyone at home is nice, here Its as though you need to remind them to say "thank you."

So I drove home yesterday to take my car to a trusted mechanic. It was a long three hour drive for a short two hour stay until Tom and I came back to Missoula. I feel so vulnerable and sad when leaving Missoula, I worry about Cooper. And if something were to happen I couldn't even really do anything but watch. Not to mention when going home I almost feel "bad" that I can't take Cooper with me that he has to stay.

While I was in Salmon Cooper had kind of a big day. The doctor decided to change the tube in his throat due to the leak around the other one. It was the next size bigger which has certainly helped him. While his oxygen is still high he isn't requiring the vent to give him up to 97 percent anymore.

He had another chest X-ray as well that showed his lungs were hazy. Tey also did an ECHO on his heart for his PDA and while the issue isn't resolved the valve opening is now smaller. Which is good. We can just hope it doesn't reopen.

His feedings have gone up to 15 mL and he is growing. He is tolerating his food well which is great! He is no longer on antibiotics thankfully and hope that any infections stay at bay!

How Preemie Mom's Are Chosen by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen? 

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. 

"Armstrong, Beth, son. Patron Saint...give her Gerard. He's used to profanity." 

Finally, he passes a name to an angel and smiles. "Give her a preemie." 

The angel is curious. "Why this one God? She's so happy." 

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel." 

"But does she have the patience?" asks the angel. 

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. 

Once the shock and resentment wear off, she'll handle it. 

I watched her today. She has that sense of self and independence so rare and so necessary in a mother.

You see, the child I am going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy." 

God smiles. "This one is perfect. She has just the right amount of selfishness. " 

The angel gasps, "Selfishness! Is that a virtue?" 

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. 

She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it. 

I will permit her to see clear the things that I see - ignorance, cruelty, prejudice - and allow her to rise above them. 

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." 

"But what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. 

"A mirror will suffice.

The routine of being at the hospital at 8 a.m. for touch time is just comes natural now, up by 6 a.m. shower, pump and be at the hospital. Today when I arrived I found out that Cooper's oxygen was so low over the night the nurse needed to bag him, resulting her in calling the doctor and an x-ray ordered. Of course, I can't be here 24/7 so when something happens as "mom" I would appreciate a phone call, no matter what time it was. But that is no here, nor there.

Cooper's oxygen and breathing has been his biggest set back so far, and today I think he reached maybe the "worst." His oxygen has been all the way down to 23 (we breath room air of 21) which is good, today it has reached from 60 to 80, not so good. First they thought maybe there was a leak in his breathing tube, but they aren't sure and last time they needed to take the tube out and put it back in, they noticed that his throat was raw and bled a little. So Cooper has done much today and we have skipped holding for the day and can just be hopeful for tomorrow.

His sodium was pretty low so the doctor ordered him some sodium and about three hours later his sodium was creeping back up but too fast. The doctor doesn't think his sodium levels and oxygen levels aren't related. Little Cooper does need his third blood transfusion, but the doctor really doesn't want to give it to him until the oxygen situation is worked out since the blood transfusion can help his oxygen but she doesn't want to "mask" the problem.

Tomorrow will mark Cooper's third week in this world, he hasn't grown much but since his feedings have gone from 6mL to 9.9 then to 12 and now to 14 every three hours and tolerating them very well hopefully he will soon get some baby fat on his tiny little bones.

I am sure there are somethings I am missing or leaving out. But if you are curious just ask, I will be happy to answer any questions!

At some point I need to be completely honest with myself and others, that I am struggling. I can't begin to explain what it is like to have a baby and not be able to care for it like you should, that you are limited to touching your own child and a holding is the highlight to the day. I never expected to be welcomed to motherhood like this and while I struggle in my own way I know the real person to struggle is Cooper. While he is moving along and has ups and downs, Cooper in all reality is fighting for his life. Even though Cooper doesn't seem to have any "major" problems now, the chance of infection, continued breathing support, more blood transfusions and more are always a chance especially since he was born so early.

I couldn't begin to explain what it is like to walk down the hallway of a NICU, and never knowing what to really expect when you walk into your own child's room, or the doctor or nurse saying, "We have bad news." Or the simple guilt you feel for leaving. I can't stand any of it, and I thought I was a lot stronger than I really am. I have never in my life cried so much. I cry when I am happy, when I am sad, when I am frustrated and sometimes for no reason. I just cry. I can't always explain it, it just happens. I feel sad when I see mother's leaving the hospital with their babies or even just hearing a baby cry is something I want so bad that Cooper can't do yet. Yet, I cry when I can hold him, hum to him and rock gently, I cry getting good news at the hospital.

I struggle every single day. Our lives were completely turned upside down when our miracle baby came into our lives. I don't regret Cooper at all, I just wish we had a little more time to prepare, but then again does life ever allow you to fully prepare for anything, especially a baby?

Even after 18 days of giving birth to Cooper I struggle with the "why us?" Why did we get handed this path? Why couldn't my body just take care of my child? Why am I putting Tom through this? Why? Why can't Cooper just be perfect? Why? I know I have to keep a positive look, and I know it could be worse, but it's hard day in and day out. Sometimes it's as though that I suffer for both Cooper and I sitting on the uncomfortable couch in his room - the fear and anxiety build up.

I try and be strong, to say "I'm okay" and that everything is "good" but some days it isn't. Some days I don't want to leave my room, eat - I just want to sleep. But I am trying to push through it. Push through it for my family, for Tom, for me and for Cooper most importantly.

I love the days when everything just falls into place, when there are no "bad" things to report yet just progress like: Cooper's feedings went up from 6 mL to 9.9 mL every three hours and he may be off the ventilator sooner than we expected! Cooper has been digesting his feedings well, with none left in the his little tummy. We have been getting to hold him for a few hours every day which is the best part of the day! We don't have any "BIG" news to share with everyone, just that we are okay and moving forward, that in itself is a blessing. We appreciate all the prayers and love sent our way!!

I honestly couldn't think of a better way to spend the first day of 2013 than with Tom and Cooper not to mention Tom holding Cooper for the first time today! Tom was nervous, didn't know what to expect, but little did he know all you need to do it sit there. Now just over 30 minutes into Tom's first kangaroo time, he is sleeping - well Tom and Cooper and both sleeping. It is so cute and precious. Father and son really together for the first time since Cooper was born 14 days ago. What a great moment shared between us.