Another week is here! I couldn't be happier that the weeks seem to be going quickly. It still seems a little odd, and maybe a little bit too good to be true, that everything is going so well. I still can't imagine myself being 40 weeks pregnant.
This little boy is definitely a mover and a shaker. Sometimes I wonder how he can possibly be moving so much, but I love it. I wouldn't mind if he did it more during the day and less at night though.
I am feeling pretty good. I notice myself getting tired more easily and not having as much energy. I am pretty much wearing maternity clothes now and have moved up a scrub size at work. My coworkers love to rub my belly which I know some people hate, but I think it's kind of funny.
Some of you have asked what Cohen thinks about all this. I'm not sure he has any idea what's going on or how his little world will change. All he knows is that my belly button sticks out and he likes to poke it.
I go in again tomorrow for my 2 week check up and hopefully all will be looking good still! This is the best picture I could get out of my photographer...Next week I will be more pregnant than I've ever been!!
I've mentioned before that I am a nurse and my job sometimes requires me to take care of babies and children. For a long time after the boys were born, I just couldn't do it. Everything we had been through was so fresh in my mind and despite the fact that 95% of the kids are absolutely fine and only rarely does something happen out of the ordinary. But still...I couldn't handle the thought of that 5% happening. And I couldn't handle the thought of something bad happening to a child and then having to be the one responsible for them. I knew I needed to take a step back and deal with a few other things before I was ready to put myself back in that situation.
Tomorrow I will be taking a required class for work called PALS (pediatric advanced life support). PALS is such a nice, friendly name for what to do if a child stops breathing or their heart stops beating. Ugh. While I have come a long ways and can actually be in the same room as a baby as a patient, it still hits a little too close to home. Both of my boys required these life saving measures and the thought of it happening to another child makes me anxious. During our last practice with an event like this where a patient would require these measures, all I could think about was my boys. My tiny babies, helpless, needing extraordinary measures to keep them alive. And of course in Carter's case, losing his battle despite these measures. I know these babies are fake and in my head I know they aren't my babies, but my heart just isn't quite there yet.
Honestly, I'm not sure how it's going to go. I know I still have some issues surrounding my boys and how their lives began and all of the fear that goes along with it. I hope I am able to separate myself enough to make it through the class. Will you please say a prayer for me/think of me tomorrow? I would greatly appreciate it.
Yesterday we celebrated Danny's 27th birthday! Cohen and I got up and made him breakfast.
Danny really wanted to have a BBQ and the weather held off raining just long enough that we could. We even had our first firepit of the year, although a little cold out still. When I asked Danny what he wanted for his BBQ meal he said "steak with a side of ribs". So the boys cooked steaks, pork chops, and some hot dogs for the kids.
{Blowing out the candles on his steak}
Cohen was in heaven getting to be outside and having the kids to watch/play with. He was outside for at least 3 hours and it was probably the best day of his life.
This has been rolling around in my head for awhile now and honestly, I'm not sure how well it will be received. But, I have always tried to share my honest thoughts here. As a preemie parent, we are thrust into this world of teeny, tiny babies, wires, life saving devices and measures, and decisions no parent should ever have to make. It is stressful, isolating, devastating, and the journey is long. This journey can also bring joy. We celebrate the tiny (literally) milestones that some parents have never had to think about and never will. We are thrilled with a few grams of weight gain, by a baby taking a binky, or losing a few monitors and wires. It is a completely consuming time, which I believe is how it needs to be in those moments.
But,
what happens after that? Now I have this child, who was once
extremely fragile and fighting for his life. We have become used to
his medical needs demanding our full attention, we want to give him
what is best. We have lost hours with him laying in a hospital bed
that now we want to make up for. What now?
Cohen's
beginnings will always, always be a part of his
story. They will always be a part of our story, too. We are so
incredibly proud of what a miracle he is and how far he has come. We
will share his story and we won't be ashamed. But we don't want him
to be defined by being a micropreemie as that is a piece of his
story, but it's not his whole story.
We are in a different situation than some. Our little micropreemie is healthy. His day to day life, for the most part, isn't affected by his prematurity, other than being a little "behind". For some of you, this isn't the case. Your preemie's health concerns or needs continue on and it is a part of your every day life. Maybe we are the "lucky" ones who get out of the NICU journey somewhat unscathed. Oh we certainly have our wounds and battle scars. While some of the things and feelings we have dealt with are spot on with what a "normal" preemie parent goes through, some of them are also very different. Maybe it's because we lost a son at the same time, and that changes our perspective, I'm not sure. This isn't to say that all those feelings are valid and expected, but different for us in our situation Yes, it was hard and there are many times I wish I could wipe certain parts of it out of my memory, but all of it goes together to make our perspective what it is today. Prematurity is a part of Cohen's journey, but it's not his whole story.
Cohen is more than a preemie. He is growing into a toddler with
his own rambunctious personality, which of course is probably thanks
to his NICU journey. Those experiences will always go with him and be
a part of him. A part of him. They aren't who he is.
Now, every experience is different and some of you may be just
beginning your NICU journey or even if you are a few years out, you
may not be to a point where the preemie experience can only be a part
of your journey. And that's okay because we all process our
experiences differently.
For
us, personally, we are ready to take Cohen's micropreemie status and
move forward. We have been through a lot of struggle and heartache
the last two years. It hasn't been easy and we will never forget or
"move on", but just like with the loss of Carter, we will
move forward. Our experiences will help us to continue on and make
the best of this life that we can. We will take the lessons we have
learned throughout and carry them with us as we continue on this journey.
Love these cousins. And love that I get pictures of my cute boy from my sister.
Cohen has had a rough week or so. He has been protesting napping and eating. Every morning that he gets up the first thing he does is sign "milk" and then goes and gets his coat and shoes and follows me around with them, wanting to go outside. We have been going outside 2-3 times a day lately, rain or shine! We can't wait for summer, trying to keep this boy busy is wearing me out!
Hooray, another week! We have made it to 23 weeks and so far, so good. I was quite nervous after I started having what I thought were contractions but after being reassured that everything still looks good, they must truly be braxton hicks. So here we are, over halfway and we haven't had to have one talk about "viability" or bedrest or what we would do if our baby was born today.
Just for the record, I hate the word viability. I understand it's purpose in the medical community, but as a parent, feeling your baby kicking and seeing it's heartbeat and then being told it's isn't a baby that can be saved is heartbreaking. I will never, ever forget the horrible conversations we had to have every about whether we would choose to save our babies lives or not despite their possible extreme prematurity. I am so incredibly thankful my heart doesn't have to do that again with our baby boy, I'm not sure I could take it.
It's so strange to think about all we had been through at this point with the twins. And that they would be coming in 2 weeks! Part of me will never truly believe that we will make it to 40 weeks. It just seems so long. I have already checked to make sure we still have a few of Cohen's preemie clothes, I have already made lists in my mind of what we would need to do should we get sent to Seattle to have another early baby. I'm just not sure it's something my brain will ever be able to get around. I would be more than happy to admit that I'm wrong if this baby makes it to 40 weeks though!
It's also strange not to be in bedrest or "taking it easy" mode. I still find myself hesitant to go on a walk that seems too far or pick Cohen up if I don't have to. You know, just in case. I have more to say on the pregnancy brain of someone who has had a preemie and/or experienced loss. But I'll save that for another day. For now, 23 WEEKS!!!
My belly is getting bigger, my pants are getting smaller, I get embarrassingly tired after one flight of stairs and it's harder to put on my shoes. And I love it all.
This is a blanket I made for baby K3. It may or may not have his name on the other side! Stay tuned and maybe you will find out what it is later this week.
Cohen hasn't been feeling very photogenic lately, but he's still pretty darn cute if you ask me. Cohen and I went out for a cookie with Gramma in the morning. Then later we met Daddy in Bellingham for a romantic dinner at Boomers, a burger place. We are greatly enjoying low key holidays!
I was waiting to do our 22 week post until we went in for our ultrasound today. At the beginning of the week, I started to feel what I thought were contractions. They felt eerily similar to the ones I felt with the boys, although less regular. I drank a few big glasses of water and laid down and they seemed to get better. I decided to wait it out and see how I was feeling the next day before I called my OB office. The next day I had a few more so I decided to call. Of course when I called in it was my good doctor friend from my first appointment. But, I already had an appointment scheduled for Friday so I just told them I didn't think I needed to come in sooner but that I wanted to let them know just in case. I may have also hunted down one of my better liked OBs while I was at work and talked to him to make myself feel better. I continued to have more off and on throughout the week but nothing too major. It was hard not to let that fear and worry come up and take me over. Of course I was nervous, but I tried to just carry on and get through until Friday.
We got to our ultrasound today and I was so relieved to see a nice, long closed cervix with no funneling at the top. The baby is back to being breech, which I had already told Danny I suspected based on the amount of kicking I was feeling. I had started taking Ibuprofen earlier in the week to see if it helped the contractions so I can stop that now that we know everything is okay and carry on!
I can't tell you the amount of relief I feel every time we go in and see our baby boy bouncing around and that all is okay. It's like I have this huge weight lifted off my shoulders and I feel like at least until our next appointment gets closer I can breathe a little easier. The every two week appointments are really working out well because it doesn't quite give me enough time to panic in between but enough time that I'm not there constantly. Right now my life is measured in two week increments and it helps me to have an appointment around the corner to focus on.
And so, another good report for the little man. I am so thankful. I told my doctor that I would probably continue to err on the side of caution and he used an analogy that when someone is struck by lightning, they don't expect it to happen again and they hope it doesn't happen again, but it doesn't mean that they don't look up at the sky. We continue to hope and pray for "normal", but we still have that fear in the back of our minds. I'm thankful that so far, it comes and goes and we are able to carry on and work through it.
Carter,
I stopped by your grave the other day and put my finger in your tiny handprints as I always do. I remember when I saw the proof of what your marker would look like, I asked if your hand prints were the correct size. They just seemed too little, smaller than I remember them as I sat in the hospital room trying to memorize every detail of you. To me, you just looked so perfect.
Sometimes I just wish this pain would go away and that I didn't have to feel it every day. But that would mean not knowing and loving you, so I will take the heartache. The pain reminds me how very much I love you and wish you were here. You will always be a very important part of our family.
As I walked away from your grave, I got mad. Sometimes, mommy still has a hard time with wondering why we didn't get to keep you and why this had to happen to us. Your little handprints reminded me that I will never get to hold your hand and walk you down the street, or around the house like your brother loves to do. I love Cohen's little hands. Some days I just sit and look at them. I love when he wraps his little hand around my finger and wants me to go somewhere with him. I want that with you and I will never have that on this earth. I want to see you walk and I want to feel your little hand in mine. I don't know how old you will be when I get to heaven, but I sure hope you aren't too old to hold your mom's hand.
Love you forever.
Mom
Thank you for all your kind words after the post about story time. I'm glad to know that many of you have kids who would have been playing right along with Cohen. I'm not sure where all those kids were that day, but they definitely weren't at story time!
Many of you have asked what we do to help Cohen develop his vestibular/sensory system a little better. For him, it seems to be about his movement. We do a lot of swinging. We actually have a swing in our house, because when you live in the northwest it rains 362 days a year and it's hard to get outside in the winter. So we have a regular outdoor swing attached to a pull up bar in the doorway. This is nice because we can take it down when we aren't using it and it isn't anything permanent. Cohen would literally spend hours in his swing if we let him. I think he likes the sensory input he gets from the movement. Sometimes if he is just super busy and we can't quite get him to focus on anything, we put him in his swing and he just relaxes.
{Cohen has been swinging for quite some time and is now an expert}
Cohen also spent some time doing therapeutic listening. He has cds from his OT that are some kind of special music where certain pitches or sounds are taken out and then added back in. It sounds crazy and distorted but somehow is supposed to help with organization in the brain. We aren't as good about these as we should be because Cohen is supposed to stay within 5 feet of wherever the music is coming from and well, that's pretty impossible unless he is in his swing, which is generally when he listens to it.
{Cohen also gets to ride horses at therapy when it's nice out!}
When he is at therapy, he plays in a lot of different types of swings. The goal is to have him experiencing movement of all kinds back and forth, round and round, and side to side to help him develop the vestibular system (that helps with movement and sensory regulation). He was swinging in a hammock the last time at OT and it was amazing just to see him relax, like almost falling asleep, and focusing on and actually playing with a toy for more than 5 seconds. We are looking at a way to be able to get a swing like this in our house since Cohen is now only going to OT once a month.
{Another type of swing at therapy. If he looks exhausted, he is! It's a lot of hard work for him}
As I've mentioned before, his issues are fairly minor compared to what he could be experiencing because of his prematurity. But, we would still like to take care of them as much as we can early on so that they don't become bigger or ongoing throughout his life. He's been through enough already and we want him to be able to take on life the best he can so we will help him do that however we can.
When I set my alarm I always set it for odd times like 6:06 so that I can get as much sleep as possible, down to the minute.
I went grocery shopping and came back out to the car and found my keys sitting in my unlocked car on the driver's seat. Good thing cars like mine aren't in high demand.
Back when I was a perfect mom, before I had kids, I would never have let my toddler watch TV. Now I think it's cute that heclaps and points when Elmo shows up on Sesame Street.
I was halfway through brushing my teeth when I realized something felt off and that I was using Danny's toothbrush.
I have been dreaming of girl scout cookies and have asked everyone within a 5 mile radius where I can get them. So far I have been unsuccessful.
"Remember how when he was a newborn and..."
I do remember when he was a newborn, but it depends on if you are talking about when he was first born, or when he was a newborn by his adjusted age. And probably, I don't remember how this or that went because we didn't exactly have the newborn experience. I'll admit, I'm a little nervous. Although this isn't my first baby, it will hopefully be more like the actual newborn experience, of which I generally know nothing about.
Hopefully this baby won't require isolettes, breathing tubes, oxygen, feeding tubes etc. But wait, I know how to deal with that stuff. What do I do with a baby that is born on time and does regular baby things? What do I do if I don't have to pull oxygen tubing around the house or worry constantly about whether he is gaining weight? I won't have 4 months to adjust to his schedule and numerous doctors and nurses to help me learn his routine.
I am excited that if this baby cooks the proper amount of time that he will get to wear clothes and eat and I will get to hold him right away. But I don't even know what a tiny baby does at night. For the first 4 months, we left Cohen at night. The first night that we actually got be with him was the first night he came home at 130 days old. I don't even know how to nurse a baby or how often he eats or how I know if he's eating enough.
So, I am feeling a little nervous. Like a first time mom who knows nothing. I feel like I should know more than I do! I'm hoping maybe I know more than I think I do, but I'm not so sure. I guess we'll see how it goes as a pseudo first time mom! I'm so thankful for my very supportive husband and family who I know will help us out. Even if I am a little nervous, I'm excited to hopefully have this "normal" (whatever that is) first time mom with a newborn at home experience.
The other morning we woke up and I could just feel it turning into one of those days. Cohen had gotten up early, was cranky, and was bringing me his coat every 5 minutes to go outside. I decided that in an effort to turn the day around, we would go to storytime at the library. I was nervous that there would be other little kids there and we are trying to avoid that, but it just needed to be done.
We got to the library and Cohen played with toys until it was time for the singing and story time. I kept thinking how wonderful it was going to be for him to get out and be around other kids, and for me to get to be around other moms. And then the story started. The other kids sat nicely with their parents listening and participating. Meanwhile, Cohen was determined to destroy the tape recorder sitting on the table behind the lady with the book. When that didn't work he spotted a flag in the corner and proceeded to point and yell "Oh!" every 5 seconds. Unsure of the etiquette for story time and not wanting to get any dirty looks, I took him to the back where there was a few toys out and let him play thinking maybe he would get his play time in and then be ready to sit for a few minutes.
I have to admit, I was disheartened by the whole thing. I so badly wanted to be able to sit and enjoy a "normal" thing with Cohen and it just wasn't happening. The other parents made it look so easy and here I was struggling to stop my toddler from squirming away, opening doors, throwing toys, yelling, and not paying any attention to the story. I know my perceptions were probably a little off, but Cohen was literally the only baby of various ages not either sitting on a parent's lap listening or sitting on the floor in the circle listening.
As parents, we can find a lot of things to blame ourselves for, and this was one I chose to feel guilty about. Had I not had Cohen around other kids enough? Do I not make him behave well enough? Have I done him a disservice by keeping him out of activities with other babies?
I know not all of those children are perfect and well behaved all of the time and I know that some of Cohen's issues are sensory related, but it was hard. Having Cohen out and around other kids seemed to point out that he was different. And I had a hard time with that. I want to be able to take him out places without him being overstimulated or unable to participate in activities I know he would like. I don't want him to be seen as naughty or misbehaving. I feel guilty for not necessarily knowing how to help him in situations like that, or even at home.
We finally just left out the back door and played on our own in the kids section of the library for awhile. I drowned my sorrows in french fries on the way home as he sat happily contained in his car seat. I know Cohen's residual preemie problems are minor compared to some. I am reminded of that often when I read other blogs or stories and I definitely don't take it for granted. But every parent wants their child to be the best they can and to be able to help them get there. That day, I just felt so lost and like I just didn't know how to be a parent.
And then later that evening, I was reminded of this video. I watched it again and cried the whole way through. Cohen has come so far. Things could have turned out so differently. I am thankful for the good days and the frustrating days because they mean he is here with us.
+copy.jpg)
.JPG)
.JPG)
+photo+merge.jpg)
+copy.jpg)
