TNA - Our Life

Today little Cooper is 26 weeks, almost 14 days old. Wow, time has been going by so fast! It just seems like yesterday we had him! Today has been one of those two steps forward one step back days. Cooper's PDA seems to be closed for now which is fantastic (but it can reopen) and his antibiotics even went down, two good things. But over the last couple days that Cooper has had with being exubated, reintubated, prodded and poked his oxygen intake has increased. I hate it. I want to see the number go down, not up. And I will be honest, the numbers still aren't "that" bad, when I left the hospital tonight they were at 37, the lowest he can go is 21 that is room air. It is discouraging when yesterday he was at 23. They had to once again reposition his tube by half a centimeter.

Today I spend nearly 12 hours at the hospital with Cooper. I wasn't able to hold him, or really get any "touch time" because he has been messed with so much they were trying to limit it today. I feel so helpless when I am not able to do anything as the nurses have to over again and again take blood from his tiny little feet. Poor Cooper's feet are swollen and bruised from it all. On days like today it is hard for me to leave. I want to be there in case anything happens. Tom reassures me he is in good hands, which I don't doubt but still I want to be there especially on bad days. I know I can't always hold him but Cooper knows when I am there. He can hear my voice as I tell him good morning, and I am his mom, I should be there.

After 10 days of giving birth to my precious baby boy, I got to finally hold him. Hold him on him, his skin to my skin, we could feel one another's breaths, smell one another and be loved by one another. His tiny legs fit into my bra, his arms stretched and his small head rested upon my chest. It was the best two hours yet, in the past 10 days. I was so overjoyed, so happy. I am disappointed my husband missed the moment, but I can't wait until it is his moment. The moment when he will be able to hold his son for the first time. The moment when he can feel Cooper's little warm body against his. At that moment nothing else matters. Cooper and I got to gently rock and nap for two whole hours. It was so great and so amazing, I really can't put it into words to describe what its like to hold your son 10 days after giving birth to him. This skin to skin "kangaroo care" is the best thing ever for a preemie mom. It just makes you fall in love all over again.

I have been slacking on my blogs and really don't have any excuses but I can happily report that Cooper is well. Over the past few days we have really experienced the "two steps forward and the one step back."

We found out that Cooper has Patent Duct Arteriosus which is when a valve in the heart fails to close at birth. The valve is open while the baby is in the womb to supply blood between baby and the placenta. Once a baby is born the valve closes keeping the blood going through the lungs, sometimes it takes a few weeks to close. Cooper's is open still. They started him on indicine to help close the valve for him. He will get his third dose of medicine today. The cons to the medication is it can increase the bleeding on his brain, luckily he has been responding to it. He was restarted on antibiotics since there was still an infection in the placenta. He hasn't shown any side effects of the antibiotics which is good as well.

Cooper was recently removed from the oscillator and graduated to a regular ventilator, which is good. The ventilator actually encourages more of a normal breathing pattern while the oscillator was just providing him with air and his lungs permanently open.

Last night while doing Cooper's oral care, I noticed that the white stickies that hold his breathing tube seemed lopsided and sideways. I pointed it out to the nurse and sure it enough it was not only drooping his breathing tube was partially out. She needed assistance from another nurse, and as soon as they pointed out his "breathing bag" I had to walk out of the room. Since the tube was partially out they had to extubate him, meaning take his tube out. I stood there watching the nurses move quickly, the machines beeping, lights blinking, more nurses rushing to the room and then them calling the doctor.

My heart seemed to stop. I will spare you the thoughts running through my head as I sat there through what seemed like the longest half hour ever. By the time he was done, I was a wreck overwhelmed and scared. Cooper was fine. The gave his nasal cannulas rather than a tube in his throat which would be the next step after the ventilator. It was good and bad. The doctor said he was showing great numbers with the cannulas but he may just not be ready for it yet. So he continued to slowly ween with the cannulas. But by 3 a.m. I got a call from the doctor they had to reincubate him, replace the tube in his throat. So he is on a ventilator and it wasn't as though he stopped breathing or anything but his blood gas number were bad for cannulas. As of now he has really weened with the ventilator down to 23 which I think is the lowest since birth.

It is our first Christmas Eve not only for Tom and I but little Cooper as well. Last year Tom was away so we had made our plans of what we thought we wanted to do but then our Christmas present arrived early. See all our plans went out the window because all we ever needed is right here between the three of us. Don't get me wrong we would love to be with family and friends and be able to break bread with them all, share laughs and Christmas joy - Cooper is our everything. We didn't even get presents for people our lives have been so hectic and chaotic the past few weeks, and while I feel bad we couldn't do so it seemed everything fell into place. Tom came up today after what seemed like the longest 4 days of my life, I literally never missed him so much! I missed him more of the past four days then I did over the year he was away. But its for a good reason, Tom and I have this precious gift, this precious little boy that deserves more than Christmas joy, presents, cookies and milk - our love, support and care is what all three of us need. Once Tom got here we unloaded the car and here he brings gifts, from our families. Set up in my room at the Ronald McDonald House is a little tree our presents fit perfectly under it. And then it all seemed to make sense. This was plenty. It doesn't matter we won't see our families, share a meal with them or even have a day full of fun what matters is that he and I are together and we will see Cooper spend time with him to get him well to come home. This is the perfect place for us. Together. Besides Cooper has no idea what is going on. So tonight I will enjoy the roof and warmth of this House, the comfort of my husband being by my side and the little pillar of strength known as my son, Cooper.

I can't believe Cooper is 25 weeks today, such a little fighter! He seems so content and comfy just as though he is sailing along until the doctors let him come home. Everyday seems like he is just a little different. His face, his reactions, I am just so in love with this little miracle.

He has been very content for the past few days, with great results from blood gas tests and slowly but surely the oscillator down a little. Yesterday, the day nurse had him at room air for a short while, and of course it didn't last but it wasn't all that bad either.

Today he got his first real "feeding" of breast milk via tube, which is great too. The nurses clean out his stomach every six hours and I was warned that the milk may still be in his stomach by the next feeding, that his stomach may not know what to do yet. Well by touch time there was barely any milk left, yay! He will have another head ultrasound in the next few days to watch the bleed, which we hope for good results of course.

Cooper is just so responsive, I even caught him on video opening his eyes and looking around. Tom and I couldn't be happier with his progress and strength, of course 2 steps forward 1 step back, its one day at a time. We know we will be here awhile and will just wait on little Cooper and his progression through the next few months so he can be a healthy, happy little boy.

These days I can't remember what I said, did or told anyone, it's like my brain has turned into mush. I can't really concentrate and I am always tired. I ended up buying a calendar where I can write down Cooper's accomplishments and struggles daily, something where I can go back and reference to. Of course everyday could be a new thing, a new struggle yet a new accomplishment, like the nurses said "two steps forward one step back."

Tomorrow Cooper will be 25 weeks, five days old.

He is currently on a oscillator, a high frequency oscillatory ventilator. Traditional ventilators physically inflates and deflates the patient's lungs, the oscillator actually keeps lungs permanently open with a positive end-expiratory pressure, and by vibrating the air at a high rate. When looking at the oscillator there are three numbers Tom and I look for. *Side note we are paraphrasing and don't know the exact terms or any for that matter* The number one the left started at 8.5 and the one on the right was at 28, we want both numbers to go down. The third number is on the side and it is was percentage Cooper is breathing. Normal healthy people breath the air at 27 percent, Cooper is at 33. The higher the number the more they are supplying him. Today the number went from 8.5 to 8.0 and 28 went down to 22. His blood gases are tested daily to see how he is doing as the numbers come down. Sometimes the number comes down and he is fine and then it needs to be raised again. It is all up to him. They don't have an "expected" date of when he will no longer be on an oscillator and move to a ventilator it is all dependent on Cooper.

Most premature babies are born with bleeding on their brain, that is why pregnant women who are going to deliver early they put on magnesium sulphate, it helps reduce the bleeding on the brain. I was on magnesium for almost 48 hours. Cooper had his first brain ultrasound the day after he was born. It showed that he had a bilateral bleed. The bleeds are broken down in "grades" 4 being the highest and 1 being the least. Cooper was just under a 1 for both sides, which was great news. As long as he is on the oscillator they will perform ultrasounds about four days. So in the mean time we have had another ultrasound done to see if there are any changes because the grades don't necessarily go from grade 1 to grade 2, it can jump from grade 1 to grade 4. But the results were great, one side had completely resolved and the other was the exact same.

Cooper is doing great considering his gestation. Him responding to breast milk by trying to suck as much as he can are good signs. He is active as can be, kicking, yawning, stretching, frowning and whatever else he wants to do. I am sure there is more I could share but I can't think of it right now! =]

Today was a "big" day for us, it was the day Tom would go home to work for a few days and I would come back to stay. We are in the process of figuring out our own routine of him coming and going and me figuring out what to do with my time. So today we spent our am with Cooper for touch time and then we headed out of town so Tom could work and I could get much needed clothes and hygiene products - things we have missed for about a week.

While packing my things, which seemed like all my things it just hit me, of how hard this will be. How much I will miss Tom and feel a little disconnected from the world. Don't get me wrong it is completely worth it, because Cooper is our priority - this situation is very overwhelming.

After packing and taking the three hour trip back to Missoula, I made touch time with Cooper. I took his temperature, sat with my finger upon his body and it didn't feel right without Tom there. I guess I never realized how much he supports me and how much I really do need him. I could barely keep it together in Cooper's room, missing Tom, wishing he could be there because I know he wishes he could be too. Not only did I miss Tom but Cooper did too.

What seemed to be perfect timing, while the nurse was cleaning out Tom's mouth, his right eye started to open.

There he was this little angel, so tiny and small, just with this tiny little opening of his eye. While he can't "see" me, he can see shadows maybe movement. The moment was special. Special because for us its a little milestone, something very precious. We didn't expect his eyes to open this early so it sure was surprise. He couldn't get his left eye open yet, so one will have to do. It was almost like Cooper was looking for Tom, he missed his daddy's "hey buddy."


* On a side note, Cooper's tests have come back good. Of course the NICU doctors and nurses say its two steps forward and one step back so we take everyday on with its new challenges *

With pre-mature babies, the nurses and doctors try not to over stimulate them. They tell you not to stroke or pet his skin to just lay your finger or hand there and they specific times they perform certain things to keep him content and not over stimulated. For Cooper it is 8 a.m., 2 p.m., 8 p.m. and 2 a.m. what Tom has called "Touch Time." We are able to get hands on with taking his temperature, changing diapers and feeding him some breast milk.

The first time we were able to do it, I was too nervous. I stood on the sideline and allowed Tom to take over which was fine, because I was so nervous. He is so tiny and fragile I was almost afraid to break him or hurt him. Of course Tom was happy and ready to go he go into the incubator like he was a perfect 40-week baby. I watched and thought about it. About we are about to embark on the biggest journey of both of our lives and while we thought Tom being gone was tough or the "hardest thing" we would go through, it's amazing that in that little time all of THAT hurt and pain goes away and THIS is so much bigger than us. It is so much bigger than the little letters we exchanged, the short phone calls - we have a son. A beautiful son that deserves the best in the world and we are determined to do that for him.

The next day I built up the courage to feed him some milk on a cotton swab. While he is getting some breathing help through a venilator, Cooper does love to try to suck on the swab. When we are in his room he reacts to our voices, begins to kick and stretch a little more, a blessing. Touch time is something that will be very important to little Cooper and being able to bond as much as possible with us at this time.

Thomas Cooper Lewis III, born December 18, 2012 in Missoula, Montana  1 pound 10 ounces and 12.5 inches long

Day 4 of bed rest, has forced me to try new things, self portraits. Well I suppose not "new" necessarily because everyone takes photos of themselves but none the less, I needed something to do! I seem to always struggle while taking photos, avoid shadows on my Italian nose passed by my dad, accentuate my big eyes I inherited from my mom. Growing up I had such bad confidence in myself and a lot of that had to do with what I looked like. I was embarrassed of my over-sized nose, my dark straight hair and my lips I never grew into. I know all children go through that stage of "am I pretty?" and the "if only I looked like her." It took years and sometimes I still have those days but I love who I am. And that doesn't just include my looks. I love the woman I have became at 26 years old, and of course there are things I wish I could change (like carrying a baby without bed res) but I love who I am.

It can take years to realize who you are and what you want to be. While taking self portraits of myself I wondered how I could really capture how I feel. How do I capture my strength, independence and most importantly my love and happiness. While I am facing some complications at the moment I am still happy. Happy to have the love of my life home, to be expecting our first child and happy with life in general. I have so much to be grateful for and so many things to love and feel loved from. I truly do feel lucky, lucky that everything has fallen into place in my life at the right time, at the right moment that has made me who I am.

I have been so lucky to have such amazing friends, and I did not just realize this. From when Tom was gone for over a year and even before that my friends have been so great in every way.


I think I have some of the BEST friends anyone could ask for especially during this time. Since surgery and now being on best rest for about four days, I am over it. I want to get up do something, work - something. While I know I can't I have depended on my family and friends a lot and of course my wonderful husband.
The scare of being in the emergency room, life flighted and really the unknown of the future of the pregnancy is has been a tough and emotional week! But no matter what I have had so much help and support through this time. Being on bed rest is most certainly not fun. Having to lay down and "take it easy" takes it toll on me. While some people might like it, for me it seems to be torture.

But I just wanted to take time to share a big thank you to all my friends who have made dinner, brought me ice cream or even just call and care. I truly appreciate every bit of it.

Also I appreciate my one and only husband, who has been very patient and kind even when I am not. He has been a real rock even when I feel defeated and depressed he can make me laugh and lift my spirits.

Thank you.

First day of bed rest without Tom, boredom. And not necessarily because Tom wasn't home, because I had visitors, boredom because I can't do anything (well I'm not suppose to). I can walk to the bathroom, shower sitting down, make a sandwich or heat soup but that is it. I will migrate from my bed to the couch, since the doctor said I can sit up for a little bit but that's my day.

Today I received a long-awaited package of my new Canon DSLR camera. I haven't just been waiting for weeks for it to arrive but I have wanted one for years. I fell in love with DSLRs while I was working. So arriving while on bed rest, is bittersweet. I got to play around with it for awhile and limited to what to shoot from bed or the couch.

But I got this cute bouquet of flowers from Tom and decided that should be my subject, visable from my sitting spot in the living room. I got pretty excited to see the camera body, plus the two lenses, the filters, the lens adapters and more. Makes me wish I could at least take a walk outside, fresh air would be nice too.

I guess during my "down" time I will be writing a lot, reading and wishing I could take more photos. So here is my first blog of my "blooming boredom."

I have been on bed rest for for about five days now and weeks of it ahead of me, and I can honestly say it is hard. Not being ale to move, get up and do anything is hard. I am sore, my back hurts and it makes me anxious. I know in the long run it will help not only me but little Cooper as well. It will help ensure that little Cooper stays inside hopefully until he is viable to breath on his own.

We are always coming and going but it takes something major to stop us and make us realize how precious life is and how in an instant it can change. Going from working 2-3 jobs to not working at all and on bed rest is a hard concept for me to grasp right now. I just want to get up and do something.

While it seems Tom and I have had an up and down year, 2012 has brought us good news and great news yet saddening and hard news but together we always prevail. Quite honestly you never know the depths of someone until you are faced with tough decisions. Decisions that affect both of you.
Making the decision of either having surgery or no surgery that puts your baby in risk put Tom and I in a tough place. Without surgery we took the risk of my body progressing and having the baby early with no going back. The surgery gave us an option of trying to keep the baby inside longer. While it is risky, it could break your water and then there is no turning back. Tom and I made the decision to move onward with surgery. All went well with surgery and now hopefully that and bed rest buys us precious time.

I wouldn't have imagined that my own body wouldn't be able to hold a baby, that me, myself was the one that was "incapable." It makes me feel un-womanly. Something women should be able to do you and my body can't, while I am grateful I can get pregnant unlike many women its just an odd feeling that my own body wants to give birth to a child that isn't viable. I couldn't be more grateful for modern medicine.

Something else I am completely grateful for - my husband. When it comes down to it the tough decisions it's something Tom and I really had to talk and contemplate, along and together. Any surgery is scary and carries its own risks. When Tom and I first found out that I could loose the baby, we both started crying, something we weren't really prepared to hear and were anxious to know our options if any. Since I was life-flighted out Tom had to wait to the next day to get down here. When we were kinda in a bind to have the surgery because I started spotting again. At one point Tom looked over at me and said, "We will be able to have more children, but I only get one of you." In that moment I knew that I was lucky to him. He was right, no matter the outcome we had one another, we could heal and prevail. Luckily for us, we have bought ourselves and our little Cooper time to hopefully have a happy and healthy baby boy!

Maybe this is all more than I deserve, but I am grateful for all of it.

Here I am sitting in Boise at St. Luke's to hopefully prolong the time until little Cooper is here.

What started as a normal Tuesday turned dramatic when I started spotting, something I shouldn't be doing at 22 weeks. I immediately went to the emergency room, which resulted in an ultrasound and exam in the clinic. After an exam and ultrasound - it was determined that my cervix was thinning. The baby is fine, normal with a great heartbeat - it's my own body that is forcing me into premature labor.

I was ordered to bed rest. Laying down flat bed rest. No pressure on my cervix to make it thin more. Search and Rescue had to keep me flat from the ultrasound bed to the gurney to a hospital bed. After blood, IV, ultrasound, spectrum, steroids and bed pans I honestly couldn't believe I was in this situation. Being only 22 weeks, St. Pats in Missoula wouldn't accept me, so the next place was St. Luke's in Boise.
Due to weather I wasn't able to fly until the next afternoon via plane and continuing to stay flat. Once I got to Boise, I was subjected to their own tests and ultrasounds. When I finally could settle it hit me in the fact that I was in this position. There are no clear cu signs of this happening or why, the only clue is that I have a "weak" cervix unable to hold the weight or size of a baby.

I had two options. One would be to continue on bed rest and hope I didn't progress. I never had any contractions but I wasn't sure I wanted to take that chance. What if I had just been on bed rest, and my body continued to progress we risked the having little Cooper early, at a stage in which he isn't viable.

My second option was a cervical cerclage, which means they stitch my cervix closed. Since I haven't had any contractions or cramps I was a good candidate for it, plus they don't do it past 24 weeks. The cerclage isn't a guaranteed fix but it works in hope to keep the baby in a little longer, hopefully.


Both options have their risks, and pros and cons. Thursday afternoon I began spotting again which meant my body could be progressing so Tom finally arrived in Boise around 2:30 and I was in pre-op by 5 to get a cerclage.

It was a chance that Tom and I needed to take, while the risk was if the doctor hit a membrane it would break my water and I would lose the pregnancy - the risk was low enough or us to feel some what comfortable. I was so scared and nervous. Afraid of the outcome. Afraid of the unknown. I was risking losing my unborn child yet to save my unborn child. It was a decision in which I wasn't sure which was "right" or "wrong."

I made it through surgery, the only problem was I had spasm in my throat which was making my throat close so they had to put back under to make sure I would be fine. But I am fine and the baby is fine. All went well which is a blessing. Now we play the waiting game. I will be on bed rest until I have the baby. Originally I wouldn't be able to go home to Salmon until 35-37 weeks pregnant, but I may be able to go home Monday which would be a blessing in itself. Somewhere where I would have friends and family to help and of course Tom.

You never know what will happen, when you will need your family and friends and when you will depend on your husband more than ever. But I am grateful for all of it. While I will have to be on bed rest until little Cooper arrives, it is more certainly worth every minute to have our lil man!