Wednesday, November 30, 2011

More Thanksgiving and the End of the longest month...

I wrote this long post about Thanksgiving and how nice it was. I went on to talk all about how much my daughter is talking and how special it is to see her develop and bloom.
Then when I was adding the pictures and moving them around some how my page plus of writing all got deleted. REALLY! I don't have these saved anywhere else so it was just erased.
Most of the time, I can handle these little computer issues but you know what I am all tapped out and I did a nice post with positive gratitude for my blessings and then it got deleted. I will just let the pictures speak for themselves.

Thursday, November 24, 2011


Amazing, that when your journey is somewhat hard the celebrations really are all the sweeter. I am so thankful this year, even after a month of medical problems I am just thrilled to be here today. So many blessings which are from the big (happy healthy family) to the small (I am still able to get up and do some simple things). Thanksgiving was one of many little goals of mine to make it to pregnant and here I am. Our baby is about 1000 grams, it took Kate a month to get to be that big. My two year old is talking non-stop, and running, jumping and I thought she would absolutely never talk (now I am pretty sure she is never going to be quiet). And I get to spend the day with my family, at home!

There will be challenges tomorrow but for today it is just sweet success.

Happy Thanksgiving to all and God Bless.

Friday, November 18, 2011

What to do for a Parent of a Preemie.

Our little 25 weeks, just a few days old with Dad's wedding ring on her itty bitty foot.
Her little hand over in mom's over her face at a few weeks old.

One in eight babies will be born before 36 weeks, in the United States this is 12.8 percent (nearly 1/2 million babies per year). The rate of premature birth has increased 36 percent since the 1980's. Though medical intervention and support at our nations excellent neonatal intensive care units (NICU's) are turning most of these premature births into success stories, many of these premature babies will never come home.

The lifelong impact of being premature, is something felt by the infant and also by the whole family. A premature baby is at risk for both major disabilities and developmental delays, as well as many other health problems. The family has to not only deal with both the long-term and short-term health complications of a fragile baby but also has to deal with trauma and stress of surviving the ordeal of a premature delivery and possible high risk pregnancy.

Though, far from an expert in how to handle the fragile family in the NICU I have more experience than many. Our daughter born at 25 weeks, spent 90 days in the NICU. After her recovery though she has done marvelous, we have spent the last 2 years in follow ups, early intervention and continued medical care. Now, having entered into the scary world of our second high risk pregnancy we have already been in and out of the hospital and know all to well where we are at in our fragile pregnancy.

I found the NICU experience to be one of the most challenging, terrifying and yet somewhat rewarding experiences of my life. I learned from a marvelous staff, on-line support groups and friends and family how to navigate my way to other side of such a traumatic birth. We have become a stronger family, better people and more courageous than we knew possible along the way.

So on today National Prematurity Awareness day, I wanted to share with you what others have done for us that made our journey easier. Its not easy for others to know what to say, or how to offer help. Often people have their own emotional history that makes it difficult for them to handle medical emergencies. I hope to just give a few helpful hints, that you can use if anyone has a premature child or a child in a medical crisis.

1. Say CONGRATULATIONS, your infant is beautiful. You are doing a wonderful job.
This sounds easy enough but at the time it might feel awkward and fake. I say who cares, fake it. The situation is awkward and difficult. This is not the chubby cheeked baby that the parent expected, or like any baby you have ever seen. There may be wires all over the place, they are most likely in an isolette or a hood, and may have either a ventilator or CPAP connected to them.
Bottom-line they are alive! That is not an easy task for something that is between 1 lb and 8 lbs, with medical complications and possibly born 4 months before they were supposed to be. And that life is beautiful, special and something this family has dreamed about for months or years.

You don't have to go overboard, and try to keep it from the heart. And if you really can't do it with some sincerity then okay don't say it. Try telling the mother or father that they did a wonderful job, heck if they are able to sit up or not cry during the first days or weeks then they are doing a wonderful job.

2. Let the parents lead in conversation, and with the details. Be a good listener, which means to be quiet and patient.

As a parent in this situation you are all over the board at any given moment. Mom's have a rush of post-partum hormones, waves of guilt, anger, depression, confusion and are often still being medicated post delivery. The medical situation changes nearly every hour. The parents have been in the hospital far to long for anybody to be sane. The baby has more doctors and specialist and nurses than you knew existed.

I know that you care, that is why you want to ask a million questions and get to the bottom of the whole thing. Unfortunately this is not the time, and may not be for months or ever. Nearly 80% of premature births are of unknown cause. Your questions will often be felt as accusations, or criticisms. They may seem very reasonable to you, but you are not the person that hasn't slept, is hormonal or in the crisis directly.

As time goes on, realize as well this parent has to talk to anywhere from 5 to 50 people everyday about the state of their child. It is exhausting, especially when the infants status can change between stable to needing to go to emergency surgery in the matter of a few hours. If a parent is quiet, grouchy, unrational it really has very little to do with you.

I always found it most comforting to just have people sit, listen, sometimes touch me and just keep trying. Sometimes I felt like sharing, other times not. I really couldn't deal with your emotions or needs, I couldn't even deal with my own. And for some parents this can be months and months of dealing with the hospital so, don't stop with this step maybe even be for years.

Don't forget about the other family members either. Mom's get a lot of the attention, and are often more vocal about their emotions and needs. They are not the only family member in the situation, don't forget about those dad's, children and others member of the immediate family that may need some one on one time. Or hey, in the world of dad's maybe they just want to watch a football game for bit, or talk about some other interest.

3. When in doubt DO some of the simple things.

As I said above, hospitals, crisis, and emotions are really difficult for a lot of people. Maybe you just can't handle talking or coming to visit. Well, don't just run away from these people that need you. There are other rather simple things that really can be done to make their lives easier.

Parents in the NICU need things, and buying something and having it delivered usually won't be to hard. I was able to recieve packages at the NICU, which was a nice surprise when I got there (call before and ask the NICU directly to make sure it is allowed.). I recieved books, cards, dvds, blankets, preemie clothes, pampering supplies, pens and food.

We received donations to the Ronald MacDonald House were I was staying. Gas money really started to add up, and we got gas cards and credit cards with money on them. We recieved money and checks from people we barely knew, but it helped with medical cost and me being out of work for so long. Somebody gave us a huge Starbucks card, that I literally lived off it for a few weeks.

Then there is everything they need help with at home. Cleaning, cooking, errands, kiddo watching, the list goes on and on. Picking up mail. People had to come mow our lawn, and vacuum our house both things my husband and I just didn't even remember needed to be done. Make casseroles and stock up the fridge, because there will be times (alot of them) when nobody has energy to cook and when even more so when the baby comes home. See if there are any home improvement project or final baby project they need done.

I suggest that you don't ask the parents about a lot of this either, just do it! I said no to about everything people offered to do. We were fine, we could handle it. No we weren't fine and no we couldn't handle it, but I also couldn't handle coming up with ways people could help. I barely remembered to feed myself everyday, so who knew what needed to be done at home.

I know that this is hard to just do things for people without them telling you its okay or what they need. I still encourage you to do it anyway. I remember there was a women I hardly knew when my daughter was in the NICU, and that lady just wouldn't back down. She would show up with cookies, with smoothies, invite me to dinner, bring me craft supplies. I know I wasn't nice and I always acted like I didn't want anything, but you better believe that later I would start to eat her cookies and drink the smoothie. I don't know why I was being so difficult, I just was. Then one day I went to leave the NICU and my car wouldn't start and of course I had to be somewhere in a set amount of time. She was the first person I called, and she came right down. Even today, I think of her as a little angel that just kept answering my unsaid prayers when I needed it most.

4. Be a friend, be yourself and just keep doing it.

Lastly, do just that be a friend. This is the time when somebody needs others to be so unselfish and caring. They need time and understanding, and compassion. It will be ugly at times and maybe even hurtful, that is what life is all about. Just don't give up on them or their situation, keep being that compassionate person that you are.

My family has lots of little living angels that helped us with the birth of our first daughter and our helping us with the birth of our second daughter. They have made my life richer and happier in ways I could never fully express to them. I am forever gratiful to all of them, and just try to pay it forward to them and others in their times of need.

Please remember to support the March of Dimes on Premature Awareness day November 17th, and all year long.

**** P.S. I know this is a day late for premature awareness day but, we had a little medical event with this pregnancy and were down at the UW hospital for a few days (all seems well for now), so I was unable to get this posted on time, so sorry but still hope it helps!****

Our big 2 1/2 year old getting ready to celebrate all that we have to be Thankful for now!

Wednesday, November 16, 2011

Bed Rest Week #3 (and quick summary of #1 and #2).

Ironically I typed in the tittle and then hit return and it published the post with nothing written. Opps, or maybe that would be good summary of the last 3 weeks. You may have noticed that I have pretty limited personal photos for the last several weeks too. Not exactly the type of weeks you like to have photographed, and the captions would be even better. Picture yourself or someone you love, over 6 months pregnant on several different pain medications, spending days on the couch or bed under a great deal of stress. Yeah, that is what I thought, not exactly a hallmark card kind of photo opportunity.

But, here I am on the other side. In the thick of my third week of bedrest, and starting to have more days looking somewhat human rather than half alien mixed with a crazy pregnant lady. The pain has eased up and is now more typical of being pregnant and spending large amounts of time on your left side (that is the side that gives the uterus the best blood flow and circulation). Being relatively drug free, still getting my progesterone shots weekly is also very nice.

Bed-rest is an interesting place. People have all types of opinions on the subject. Shocking but not surprising because most people have not been on bed-rest before. I can see it from their eyes that it might look kind of nice, a little break from their busy lives and catching up on movies and magazines. I suggest you just give yourself a weekend to vegetate, and then be nice to all those of us that are not allowed to do anything else.

Now that I am feeling physically better, I have started to work on a few holiday projects and I try to just keep somewhat a normal schedule. Some days go faster and better than others. The mornings are the worse when everybody is at something (work, toddler class, etc). Or when everybody is really busy and I am sitting. Helpful people have endless suggestions of what I could be doing with my time, which honestly I haven't found very helpful. You have to remember that the person on bed-rest hasn't developed mad skills during there illness or medical crisis. They also have limited access to supplies and probably don't have unlimited energy. So unfortunately I will probably not be taking up beading, card cataloging all my pictures or unlimited sewing projects.

On the medical front, we still are taking it one day or week at a time. I am not having contractions. Cervix thanks to the cerclage (which is a suture holding my cervix closed), is closed. We were unable to get a length this week, just a strange ultrasound that we are repeating next week. Fetal fibronectin was negative this week so that gives me at least 2 more weeks to cook this baby, taking us up to 28 weeks. Which is huge! 3 weeks longer than Kate got, and they are very important weeks. Most likely I will get steroid shots in the next several weeks, which do wonders for preemies but I am still a little worried about when we should give them to maximize their efficiency.

My anxiety and depression over how everything is going is still pretty high (or low depending on which you are talking about). I try to spend more time on the positive than the negative, but at times feel that I am chasing something isn't going to happen. But, at the same time I just can't let it go either.

Hopefully there won't be much to update from my position on the couch for awhile but I promise pictures and more fun to come.

Sunday, November 13, 2011

My State of Mind.

I've had a lot on my mind lately, and a lot of time to sit with my thoughts. To be honest I've wanted to just sit with it all for awhile and haven't felt physically very good so it was easiest to just keep it to myself. Sometimes all this time alone though really isn't helpful for keeping things in perspective. Much like the time in the NICU, there are ups and downs daily on this journey. Really the below chart is the one of the most pressing thought. I remember this chart well when we had Kate at 25 weeks.

Her doctors went over it with Ed and I during my 24th week, to let us know what we were facing ahead of us.

Odds of a Premature Baby's Survival by Length of Pregnancy

Length of PregnancyLikelihood of Survival
23 weeks17%
24 weeks39%
25 weeks50%
26 weeks80%
27 weeks90%
28-31 weeks90-95%
32-33 weeks95%
34+ weeksAlmost as likely as a full-term baby
Sources: March of Dimes, Quint Boenker Preemie Survival Foundatio

Tonight I just needed to find some of my own inspiration. I looked around and found a few things that helped lift me up tonight. I share them with you to get an idea of what inspires me and maybe it will inspire you too.
Ask my mother that one, and she will tell you about all the glitter I used in her house. I was one of these very busy-body types from elementary school on (okay, probably from birth), and thus I was always working on some sign or card or something and I love glitter. I love to think of my little girls loving dirt as much as they love glitter.
I tend to be a cup 1/2 empty kind of girl. I say it makes me a good doctor so that I can plan and expect what could go wrong and prepare for that. I am starting to realize that is a coping mechanism to try and gain control in situation(s) that you might not have much control over. It gives you a false feeling that if you are prepared for the bad, you won't be as disappointed when it happens. When I type that out I realize how silly it is, but my mind likes to think this way and I am working hard to change that.
I love Robert Frost, always have and he just says it how it is for sure.
If this isn't the truth and doesn't bring a smile to your face, you probably aren't a mother.
I admire people who do things they've never tried before. Somewhere as we grow up we stop trying new things more and more. Being on bedrest, I am having to do all types of things in a different way and you know some of them aren't that bad. I am learning all sorts of new knots for hand embroidery and they are frustrating but at the same time, when was the last time I learned something new?
This is my motto for the last year, I have it in several locations around my house. Yes, I am one of those people that has inspiring things on my mirror in the bathroom, above my desk and on the fridge. But, I just keep trying to believe that if I say it to myself enough I really will believe it!

So, more details tomorrow but I hope that maybe some of my own inspiration will find its way into your week and help you do something that you didn't know you could do either.

Thursday, November 3, 2011

Pity pots and my cerclage.

I am sure you've heard the saying, get off your pity pot. Or, I was just having a pity party for myself. Being the literal person I am I was thinking to myself, "Have you ever wondered what your pity pot would look like?" Its one of those expressions that is just silly, and meaningless. It probably confuses people that are learning English as a second language.

The majority of this somewhat draining week I have remained positive. I did shockingly well back in the hospital and didn't even cry, and there were some painful things going on. But, about once a day or so, I get out my pity pot and have myself a bit of pity party.

So what does my pity pot look like? Well, of course for what-ever reason a toilet comes to mind but I think that is just because of the sometimes calling of the toilet the pot. I wonder would my pity pot be pretty and red with daisies on it like the one above.

No teapots are too cute, something to be shared with a friend on a cold day. A pity party by nature is a solitary event. It is better to groan, and feel sorry for yourself with nobody around. Those family members and such will just try to cheer you up or talk about the lighter side of life. Thus my pity pot could not be that cute, or cheerful.
Well, then could I have multiple pity pots depending on the level of my self deprecating thoughts. Hmm... I like this idea, the more pots to have a pity party in. But still these are too happy and cheerful. I am not having a moment where I am planting flowers on my deck. No these are the dark moments in the day, when I just feel too heavy to open my eyes and face the reality around me.

Those are not the right pots either.

I think I finally stumbled onto the right pots for me. Notice the various colors, bright but not too cheery. RED- for the anger that I feel for being in the same situation, and for everyone else getting to have what appears to me a normal life. GREEN- which is perfectly situated next to my angry pity pot for the envy and jealousy I feel towards others. This pot is full of the why me, why my family, and why did this have to happen again feelings. White- this is a whole pot of overwhelmed and lonely, not knowing what to feel, or how to say it just feeling like it is too much to do. BLUE- which is perfect to follow white, as it is typical after all these emotions to feel blue or depressed. Sad and teary, which is always a part of my pity party. Lots of tears. And the last BLACK/BROWN-- no description needed. Just the grand conclusion, and I like how they can all fit together in a nice stack. No need to get unorganized just because we are falling apart emotionally.
Well it gives you something to think about anyway. What color would your pity pot be? Try as you might, during a difficult period of time one just sometimes has to sit and wallow with their thoughts for a bit (or even longer). I continue to try not to do it for too long or too often because I know I have the strength to get to the other side.

My cervical cerclage (which is a special type of suturing to hold my cervix closed) was placed on Wednesday night and went well, per the doctor. He is optimistic that we caught things in a preventative way. I won't have a measurement for awhile now (about 9 days) as long as I continue to feel fine. I had a lot of pain but no contractions for several days.

I can not work the rest of pregnancy, and am on bed rest with some pretty good privileges unless I start having contractions and or if my next measurement indicates otherwise. Basically we hold our breath for another week and 1/2. The big goal is 28 weeks, which is just past Thanksgiving (roughly 24 days away). But in general it is one day at a time.

I'll do my best to stay off the pity pots, but I can't make any promises. I will do my best though.

Wednesday, November 2, 2011

The day after... heading to the hospital.

Okay, I think I should have borrowed her hat an idea. Hiding from it all would be pretty nice, but as is life you just never know what twist (or smack upside the head) it is about to take. The day after our perfect Halloween was far from perfect.

Started out normal enough, busy at work. Got off, rested for an hour or so and then went in for a routine check at the doctors. Cervical ultrasound, and there it was... funneling. An obvious beak or funnel to my inner portion of the cervix. Under pressure, and the funnel got larger. To be blunt you'd have to a be an idiot to not see this on the ultrasound.

Crap, crap, crap.

From there, we decided I needed a cervical cerclage. This one is still classified as preventative but, I feel that is a bit of stretch. I have changes that are indicating problems, and I am somewhere between 23 and 24 weeks. Nothing about this is standard. But, on the good side my cervical length is nice and long. When I had mine with Kate, I was fully dilated with membranes protruding and cervical length less than 3 mm (right not I have cm of length).

One can't feel all that calm, even when the doctor is but you hear them in the hall way say to book a operating room as soon as possible.

So here I sit, waiting the following day to go have a cerclage placed. We are doing it as a day surgery. As long as I don't start contracting then I will be home tonight, and then on bedrest for the rest of pregnancy.

The emotions of being in such a similar experience are pretty intense, and not something I can go into on such an important day. Instead, I pulling my hat down, keeping positive and waiting for the day to pass.


Halloween was the best day, kind of a once a year kind of day. I got home from work early with my new schedule. Rested for a good amount and was feeling great. I had picked up this take-and-bake pizza that looks like a Jack-o-Lantern and it was a big hit with all.

We have these cool, but gorgeous days lately. Crisp, sun and leaves. Kate and decided we'd just play outside after getting the mail. She is so close to really riding her tricycle, and we did the slide over and over.

When Dad came home it was pizza time then, putting on the costume. She didn't mind the costume at all, and actually was hamming it up for the camera. The day before when I tried it, I got the worst reaction and a long standing tantrum. We practiced trick or treating and she was all about it.

Then we hit the streets. After about two houses she was an expert. I only went to three houses, as I am taking it easy and then went home to hand out treats. But per Dad she was just a champ. Came home happy, ate a chocolate bar and we all feel asleep exhausted and happy.