TNA - Our Life

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.