What not to say to a woman with a high risk pregnancy

When we found out we were expecting our second child and voiced our concerns about the very real possibilities of going on bedrest with a young toddler at home, we were told the usual "helpful" stories of other women on bedrest with other children at home.  My favorite is "I have a friend of a friend who was on bedrest with all of her kids and it wasn't that bad/easier than she thought."  I am calling bullsh*t on these types of stories.  First off, I have no doubt that the friend struggled to some degree.  It is NOT easy to lay around day in and day out.  It is especially not easy to watch someone else care for your child.  It is mentally exhausting to live with the stress of having a high risk pregnancy (after all, doctors do not put you on bedrest on a whim).  It is physically exhausting as your endurance decreases and your muscle mass lessens. 
Now, I know several women who have been on bedrest since having Oliver, all of them agree that it is not an easy thing to do.
I also LOOOOOVE to be told that "things will be just fine this time, you shouldn't worry."  Yes, I certainly hope and pray that things will be just fine with this baby.  I would love to experience a normal pregnancy, but that is not in the cards for me.  As for not worrying easier said than done.  Perhaps, if I was only dealing with my cervix maybe I would be a bit more relaxed since getting the cerclage.  However, the placenta previa has added a whole other level of stress and worry.  I have already had two bouts of bleeding because of the previa.  It is scary to check your pants each time you go to the bathroom.
Also, quit asking me if this will be my last child.  I would just like to get through this pregnancy before making any formal plans about the ultimate size of my family.  I know this is a question that a lot of people want an answer to and I know that since I am batting a thousand for high risk, high stress pregnancies that many people have opinions about this.  I will tell you this: it is a very rude and personal question.  Frankly, it is none of your business about what my husband and I decide.  So unless you are one of the members of my medical team you have no say and no right to ask me about my future plans.  We could be a family of four or fourteen they may all be biological children or we made decide to adopt.   Either way we hope that you will love and accept all of our children, regardless of how they came to be our children.
So my point is writing this is perhaps to make people aware of their words.  I know many are spoken in order to give hope and comfort, but sometimes it comes out the opposite.

As the Womb Turns, Chapter 2

Or, our second high risk pregnancy.  So, how does one prepare themselves to embark on this journey again?  The true answer is that you cannot truly be fully prepared to do this again.  The first time I had some degree of ignorance about the true outcome.  It is true that ignorance is bliss.  I did not have access to the full arsenal of interventions that time.  This time I feel somewhat better prepared to battle the weakness of my body.  Everyone is more informed and better prepared to try and ward off preterm labor and hopefully preterm delivery. 
The first step in the prevention plan was to put in a cerclage, I actually ended up with two.  If you have never had a cerclage all I can say is that it is a truly surreal experience and not one I am anxious to repeat.  Since having the cerclage placed I have been on restrictions.  I was on bedrest for several weeks and just recently allowed to be upright more often.  My doctors have instructed me that I am not to lift anything and only allowed limited activity.  The hardest part of this is not being able to pick up and care for my son.  We are lucky in that we have family available to help us.  So far our moms are taking turns living with us during the week and Justin is on baby care on the weekends.  It is kind of bizarre having our moms live with us, but we are so grateful that they are able to help us. 
I am also taking medications to help keep my uterus relaxed.  My midwife told me about an herbal tonic called Welcome Womb.  I am also taking magnesium tablets which will also help keep things relaxed.  This week my mom and I had the pleasure of learning how to give me progesterone injections.  Thankfully, I only have to have them once a week. 
I have chosen to look at these discomforts and inconveniences as a small price to pay for a healthy close to term baby in the end.   
I will continue to hope for CHU, CHU, CHU.

What About the Fathers?

As I am slowly gestating our second child, I find myself reflecting on my first pregnancy.  Surprisingly, I have not been reliving the traumas, but remembering my feelings of expectations and what was happening in our life at the time.  I remember waiting to hear the heart beat the first time, waiting to feel those first flutters of movement, waiting to get big enough so that people would know I was pregnant.
Lately, I have been thinking more about my husband and how this was all perceived by him.  By the very nature of pregnancy the focus is on the mother and the child.  Fathers can be easily overlooked.  I am guilty of this, it is hard to fully engage with him at the end of a long day when I am past the point of being exhausted and feeling nauseous.  I know that he is feeling stress and pressure from his job.  He is also worried about paying the bills with another little one on the way.  I know that he carries a lot of the fear from Oliver's birth, we both do.  He has never really opened up about what went on during the summer Oliver and I were in the hospital.  When I was in therapy we did discuss what went on to an extent.  He read all the books I read.  While he has never written in a journal, I hope he does find an outlet for all the fear, pain, and uncertainty that we lived with.  I haven't pushed him to open up, because if he isn't ready then what is the point.   
I understand that it can be very painful to revisit those buried emotions, but once you let them out the healing begins. 
So, I guess my point in writing this is to remind us not to forget the fathers.  They need emotional support as much as the mothers.  I think society expects them to be stoic and handle everything that is thrown at them.  These men aren't superhuman even though we would like to think so.  Perhaps NICU's need to have some groups for the fathers to help them through this awful experience.  Having a medically fragile child puts a huge amount of strain and stress on a relationship, and a relationship is not just about the mother.  BOTH partners need support, individually and together. 
So, in this month of prematurity awareness, go and support a father.

Patience

Patience, it is something that I struggle with much of the time (all of the time really).  I have a hard time waiting for things.  I am the person who can't wait to open presents, I am guilty of snooping around to try and find them.  My husband was aware of this trait of mine when he was planning to propose.  When he would come and visit me I would look through his suitcase when he was in the shower trying to find the ring I was sure was in there somewhere.  The stinker kept it in his Jeep!
Since having Oliver I have learned to be patient.  I haven't had a choice in the matter.  I had to be patient and wait for him to be ready to be held the first time.  I had to be patient and wait to nurse him.  I had to be patient and wait to bring him home.  I know that I was being given a lesson to slow down and let things happen on their own time.  Things do not work out how they are supposed to when you rush them.
Since things have settled down with Oliver life has taken on a slower pace.  I honestly like it that way.  I enjoy spending time cooking for my family.  Some of the things I make take a lot a patience, like the yogurt I made this morning.  It takes several hours, but is so worth it.  Sure, it would be very easy and convenient to go to the store and grab some pre-made yogurt, but I like knowing what exactly is in this yogurt.
We also use cloth diapers with Oliver.  Washing and drying them does take some time, but once it is part of your routine it is no big deal.  This of course will get interesting this spring when Pumpkin makes an appearance.  Ultimately, I just like cloth.
So, I am learning to be a more patient person, but I still have a long way to go.    

As if I needed another reminder that prematurity stinks

A new chapter in our lives has begun.  We recently found out that we are expecting our 2nd child.  Instead of feeling excitement and joy at the news we were shocked and scared.  I feel robbed of those good feelings of expecting a new child.  I am glad that we had the meeting with the MFM doctor this spring so we know what the plan of action will be this time.  But there is still that undercurrent of terror that I know both my husband and I feel about this.  I so desperately want those rose colored glasses, I want that overwhelming joy and excitement that expectant mothers feel.  Instead I find myself hesitating to tell people, I am worried that they will question us about this.  I dread the insensitive comments that are made without thinking.  I worry that people will not be excited for this baby, as our experience with Oliver is still so fresh in their minds. 
I feel like an awful and ungrateful person when people ask me if I am excited about this pregnancy, and I tell them that I hope to be there eventually.  I so want to be able to let go of the fear and relax and enjoy this pregnancy.  It is so hard to do when you have seen too much and watched your first child suffer and fight to survive.
I do have a feeling that things will be alright in the end with this pregnancy.  I also had this feeling with Oliver, but the road from pregnancy to a healthy baby at home was a long, hard, scary, and painful road to travel.  I don't want to travel that road again, but ultimately I understand that things are in God's hands. 
My husband and I are hopeful that with the interventions planned for this pregnancy that I will get to term or darn close.  The MFM doctor couldn't guarantee that I would make it to 37 weeks but felt like I could make further than 27 weeks.
We are also planning ahead on some things this time around.  Trying to get some projects done now.  I will have a bag packed in the car once I get close to viability (lets face it husbands and dads pick out really random clothes when you are not there to direct things.).  I am still working out as I anticipate my activity level drastically dropping once I get to my second trimester.  I feel a great need to get things set up and put in place sooner rather than later.  I want to get the room set up this time, there is something special about this that you don't realize until you don't get to do it. 
Does this make me a pessimist?  Perhaps but I prefer to look at myself as a realist. 
So here's hoping for the best.

Hellllloooo Ladies!!

Lets just say that the last month has been interesting and entertaining for Justin and I.  Once Oliver became a toddler his social butterfly tendencies and personality have come out full force.  Oliver has always been interested in other people and has never minded being held by unfamiliar people.  Now that he is starting to make different sounds and can change the volume and pitch of his voice he enjoys using it.
We recently returned from our first family vacation out in Estes Park, Colorado.  Oliver spent the hikes in a carrier on our backs.  I think he thought it was a throne.  As soon as we hit the first trail Oliver started his welcome wagon routine.  He "talked" to everyone he saw.  He was so excited a few times that he sprayed the back of my neck with spit after demonstrating his outstanding raspberry blowing abilities.  He kicked us, pulled our hair or hats, and screamed in our ears in his excitement to see all these people.  If someone did not acknowledge him he would stare them down until they were out of his field of vision.  He would eventually pass out and take a nap, usually about 10 minutes before we arrived at our destination.  After his brief catnap he was refreshed and ready to continue his greetings.
Fast forward to this past Sunday.  Oliver pulled out all the stops to impress the 7 month old little girl sitting behind us.  She was very serious and unimpressed with Oliver's efforts.  As soon as she and her mother sat down behind us Oliver's eyes lit up.  He got a HUGE grin on his face and began "talking" to her.  She did not respond.  He started his peek-a-boo routine in an effort to win her over, once again he fell flat.  He decided that perhaps she just hadn't heard him so he increased the volume.  Again he got nothing from her.  He was getting desperate.  He figured that he might as well show her his A game and show her just how much he can drool while eating crackers and talking at the same time.  She was unimpressed.  He tried to give her a dose of her own medicine and ignored her for a whole 5 minutes (yeah that would show her!).  Finally he couldn't stand it anymore and whipped around and stood holding onto the back of the pew staring at her and showing her all of his teeth and proceeded to grind them together in his effort to impress her.  He ran through his act again only at a much, much louder volume.  I think his plan was to wear her down over time.  My husband and I tried to distract him and keep his professions of love to an inside volume.  He would not be deterred and we began to sweat and think about taking him out to sit in the library for the remainder of the service.  Then a lovely distraction happened and the offering plate was passed.  Oliver was enthralled with the ushers and could not take his eyes off of them.  Ahhhh sweet silence.  Once the offering was done it was game on again.  Thankfully the service was almost done at that point.
I think Justin and I will have our hands full when our social butterfly gets older and can walk.  I would advise parents to lock up their daughters. 

Happy Birthday Baby Boy!

Dear Oliver,
One year ago today you entered this world.  It was not how either of us wanted to start off our relationship.  I so wanted to snuggle and kiss you and let you know that all was right with the world.  Unfortunately, you went from me to a plastic box.  Your daddy was so proud to have a son, and walked with you to your new home.  We both had to wait to have those special Hallmark moments with you.  Perhaps Hallmark should develop a line of preemie cards to celebrate those unique preemie milestones. 
I was allowed to hold you long before I worked up the nerve to kiss you (I was so afraid of giving you germs).  Your daddy and I were terrified of you getting sick, you were so tiny and fragile, but you had a feisty side.  You were such a strong boy through all those weeks laying in your fish tank and hooked up to various noise makers.  You took all those needle pokes, ultrasounds, and eye exams in stride.  I felt like I needed to witness these events as they were part of your story.  It made me ache inside to hear you cry in protest and pain and know that I could not comfort you. 
I know in so many ways you were so much stronger than I was.  Most days I just wanted to grab you and take you home and forget about the nightmare our life had become.  You had so much to overcome and you did it!   
You came home and did wonderful.  You kept daddy and I on our toes.  Daddy and I love to give you snuggles and kisses.  Your personality is coming out everyday and we love to watch you explore your world. 
We are so glad that we were chosen to be your parents.  Your daddy and I have loved to watch you grow and change in this past year.  You are a true survivor and have shown us just how precious life is.

We love you so very much,
Mommy and Daddy 

Moo

A few months ago I submitted my story of my breastfeeding experience to a blog I follow.  You can check it out here.   I wrote it on a whim and didn't really think that it would be selected.  Well it was, and I was excited and nervous I hadn't yet opened up to others about the struggles I was going through.  Writing this post was my first step towards starting this blog.  The feedback was positive and I heard from many mothers who had similar experiences and thought they were alone.  The most important thing for me was a feeling of letting go of some of the baggage I had been dragging around.  I was in therapy at this point, but writing this really helped me feel like healing emotionally was possible.

An Empty Tank

Jean Watts

When a woman embarks on the adventure of pregnancy she never thinks about the struggles she may face.  I was that woman, I had visions of a natural childbirth and a baby that would latch on and start nursing within moments of birth.  I had plans to breastfeed my baby for at least a year, because that is what the women in my family all did.  Unfortunately, that easy natural birth was not to be.  I began having complications at 20 weeks and by 21 weeks was on hospital bedrest an hour and half away from home.  I delivered my son, Oliver, at 27 weeks 4 days by emergency C-section. 

My mindset had to suddenly and violently shift, I was no longer pregnant and my focus was now on producing milk for my tiny son.  I remember being propped up by my mother and a nurse to start pumping hours after the c-section.  I was determined to provide milk for my child.  I was terrified about my son developing NEC and knew that preemies that were formula fed had 18 times higher chance of developing this devastating infection. 

I had visions of producing gallons of milk for him.  The reality of my supply slapped me in the face the next day.  I would hook myself up to the pump and think about my child and hope for the milk to flow.  I was unprepared for the few drips that deposited themselves in the bottles.  I felt like my body had let me down on so many levels.  I was unable to carry a child to term, and now I was struggling to produce milk for him.  Matters were further complicated by a nasty infection I was fighting that had caused me to deliver early, each time I spiked a fever my already meager supply went down.  It would take a day or two for it to return to “normal” which was only at the most a half ounce from both breasts.  I was also concerned about the massive amounts of antibiotics and pain medications in my system being in my breast milk.  The doctors and nurses all assured me that they would not hurt my baby but it still worried me.  My life revolved around pumping every 3 hours round the clock, I had a love hate relationship with my pump.   

The lactation consultants were my angels, one in particular kept a close eye on me.  They followed all the NICU moms who were pumping.  They introduced me to the lactation room once I was finally discharged.  It took me a few weeks before I was fully comfortable pumping with other women in the room.  The lactation room was somewhat of a haven from the craziness of the NICU.  It was dimly lit and quite.  The women I met in that room became my support network.  We were all going through the same things and understood the emotional rollercoaster when you have a baby in the NICU.  It also showed me how low my supply was when compared to the other women.  I discussed this with my lactation consultant and embarked on a new adventure of trying to increase my supply.  I started taking fenugreek, keeping a log, hot showers, massaging my breasts, eating oatmeal, and drank a few beers, kangarooing when possible, and power pumping.

The addition of power pumping made for interesting evenings.  I would watch late night television and I would pump in 5 to 10 minute increments for one hour.  Power pumping gradually increased my supply and after a few weeks I was able to pump about 2 ounces each time.  It was a slow increase but an increase none the less; my son was getting breast milk for half of his feedings.  I was hopeful that I would be able to increase enough so that he would not need supplementation.  My other goal was that I wanted to have a supply so that when my son was strong enough I would be able to nurse him.  I desperately wanted that experience.

The day finally arrived when his neonatologist gave the okay to nurse my son one time a day.  I was beyond excited, but very nervous.  I had never breastfed and didn’t know how to start, plus he was still on oxygen and had an oral gastric tube.  His nurse called the lactation consultant to come and help me.  I was told to not get my hopes up since he was still so little and had all the tubes which might affect his ability to sufficiently suck.  The lactation consultant came for his next feeding and helped me position my son and he did the rest.  He surprised us all by latching on like a champ.  It was a wonderful experience and felt so much better than the pump.  Everyone said that once he could nurse my supply would increase, unfortunately that did not happen.  I still nursed him whenever I could, but mostly had to pump when he was in the NICU.  He was on a high calorie diet so we had to fortify the breast milk to 27 calories.  Once he was discharged I would nurse him then offer him a bottle.

At my 6 week post partum visit my midwife prescribed Reglan to help my supply.  The medication worked for me but unfortunately I also suffered from some of the side effects mostly horrible anxiety.  I took the medication for two months and then decided that I needed to stop taking it since I was not sleeping due to the anxiety.

Ultimately I was able to give my son 5 months of breast milk before my supply dried up.  It was a difficult and sad decision to stop nursing him.  I still wrestle with my feelings of failure and inadequacy.  I know that he got breast milk when it counted the most, and he is now a healthy, thriving, formula fed little boy.  Someday I will be at peace with my struggle.

Does time REALLY heal all wounds?

In two short days Oliver will be 11 months old.  I keep thinking about how I am feeling.  Yes, the acute phase of the "wound" is over.  BUT there is still pain associated with it, especially when someone pokes at it.  I find myself thinking of how a wound heals thin scab, thicker scab, pink new skin, and finally a firm scar.  I think right now I am in between the thin scab and the thick scab.  When you push on it or pick at it, it hurts and sometimes bleeds.  Yesterday I found my "wound" bleeding a bit.  I was looking through a catalog of cloth diapers and all the babies were super cute and super chubby; typical Gerber babies.  Some were so chubby that they looked like the Michelin man.  I always thought that I would have one of those babies.  Let me tell you that my genetic pool is filled to the brim with big, strong, German stock.  Yes, I know that Oliver still has the potential of truly expressing those genes.  It is just hard to see that when he still fits nicely into 3/6 month shirts, he does wear 9-12 month pants but only because we use cloth diapers so his bum is fluffy.  Just a warning, if one more person tells me that I am lucky because Oliver will get the chance to wear out his clothes, I will scratch your eyes out.  I did laugh a bit when his pedi told me to limit his formula intake so that he would eat more solids.  Personally, I feel that Oliver eating some extra calories is not going to harm him.  I make his food and I try and give him higher calorie foods, not that he always eat them.   
I was reading the Baby 411 book last night and there is a section about preemies in there.  I am seriously, seriously hoping that what I read was a typo.  The author wrote that parents should not worry since most preemies catch up to their peers by the time they are 1 year old!!!  Ummmm....Most preemies I know barely catch up by the time they are 2 years old.  It has been my observation that more of the preemie population catch up by the time they enter kindergarten.  Some of the micro preemies take even longer, and some do not catch up at all.  It is the general rule of thumb that preemies are given a cushion for looking at their development until they are 2 years old.  After working in peds for 8 years I found that for preemies born before 30 weeks that 2 year mark is not enough.  We have to take into account that when this magic cushion was put in place micro preemies did not survive.  As an OT I had many discussions with parents of preemies about how once their baby turned 2 they may suddenly see a significant delay on paper.  Most of these children did keep following their own developmental curve so in fact I feel they were not actually delayed.  Perhaps we as a population need to take another look at how we evaluate  the developmental milestones of our preemies.  Is it really fair to assume that a baby born at 34 weeks and a baby born at 24 weeks will both acquire 2 year old skills at the same time?  The answer is simple, NO.  It is my hope that in the near future the medical community will acknowledge this and make some changes.

So I am wondering, how much time will it take to heal my wound?  I operate under the assumption that the larger the wound the longer it will take to heal.  Some wounds never fully heal and some heal on the surface but still cause pain.  I worry that this wound will keep reopening and will never fully heal.

Reflections

As some of you are aware today marks the day I was admitted to the Antepartum unit at OSF last year.  I was nervous of this day, I wasn't sure how I would feel.  Last year this day was so charged with raw emotion and terror. There are a few days this summer that make me slightly apprehensive, the big one being Oliver's birthday.  I had discussed this with my therapist during my last session with her.  She suggested acknowledging that there is still some residual sadness, but to not allow myself to dwell on it.  I will admit that this morning I got a little teary thinking about what happened last year.  After that brief moment I decided to continue with my day.  There was laundry to be done and a little guy to take care of.  Oliver and I also took a bike ride to enjoy the sunshine.
As I was reflecting on things this morning I remembered some silly things people have said to me over this past year.  My favorite is: "I could NEVER be on bedrest for 6 weeks!  I don't know how you did it.  I would be going crazy."  I still get this response when people find out about my bed rest.  I just smile and tell them "Yes you can and you would."  I know that I did not go crazy because I went into survival mode.  Basically, my brain shifted gears and took all that junk that I couldn't deal with at the moment and put it away for me to process much later. 
I could not have imagined how different and yet the same my life would be.  There is no way you can go through an experience like this and not be changed.  I acknowledge that I needed a lot of help to get through this past year.  I have learned a lot about myself and other people.  I have moved through different stages of grief.  I now feel like I am at a place of acceptance about what happened to Oliver.  That doesn't mean that I don't still feel sadness and guilt, I think there will always be some of that, but I have been able to let some of it go.  I still hold my breath each time he is placed on a scale, hoping that he is gaining weight at an acceptable rate.  I feel a sense of relief each time he does something new.  At the same time I still watch him like a hawk for atypical movements and behaviors.  I also still check on him every night before going to bed to make sure he is okay.  I am slooooowly relaxing about him and sitting back a bit so that I can enjoy him in all his baby glory.  It has taken me a year but I am really looking forward to the future with Oliver and Justin.  I am enjoying doing "normal" kid things with Ollie: bike rides, swimming, playing in the sandbox, reading books, sitting in the grass, blowing raspberries on his tummy, and getting slobbery kisses.   
This time last year I could not let myself dream of these things. 

Perhaps I should stop watching documentaries

My husband and I recently subscribed to Netflix and I am addicted.  I love finding all these documentaries and I cannot get enough of them.  Well last night I found The Business of Being Born.  It was a movie I had been wanting to watch for awhile.  I thought it was a great piece of work with a lot of good information.  I was not prepared for all the memories that washed over me when I was watching it.  It brought me back to the place I was a year ago, pregnant and planning on an unmedicated, midwife assisted birth.  As I sat there I couldn't help but feel a sense of grief over the way my birth happened and all future births will have to happen.
I totally identified with the woman in the film who wanted a home birth and ended up with a section due to her baby being breech.  Her baby ended up in the NICU due to growth restriction.  She discussed her struggles with bonding and difficulties with breastfeeding.  It was refreshing to hear someone give voice to those feelings that so many of us NICU mamas feel and don't talk about. Breastfeeding in the NICU is EXTREMELY difficult.  I will get into that in a different post.
Don't get me wrong, I know that the only way Oliver was coming out was through my abdomen.  I am not in denial about the seriousness of the situation that caused him to be born that way.  I know that it was written in the stars that this was the path he had to take to come into this world.  If he had arrived any other way then he would be a different person.  Due to the type of incision I had to have all future babies will have to be sections as well.  Sometimes I feel like I almost have to justify why I had a section.  I have to remind myself periodically that there was no other option.  Positionally there was no way he was coming out and his butt was acting much like a cork in a bottle.
I have already written about how I let my fear get in the way of making better decisions.  I know so many women who let fear guide them in their decisions about their birth plans.  As a society we let fear influence a majority of our decisions.  Fear of pain, fear of being sued, fear of the reactions of others, fear of the unknown, fear of loss of control.  It is a shame that we as a country have go so far away from letting women's bodies do what they were designed to do.  Sometimes you can intervene too much.  It was not that long ago (my mother's generation) that women were tied down during labor.  Talk about not being helpful and how degrading. 
So perhaps the medical community needs to take a deep breath and take a step back and support women in their decisions to have a more natural experience.  As a society we should be preparing women more for labor to help take some of the fear away from giving birth.  I remember discussing birthing classes with my midwife and she told me that the one offered through the hospital was more designed to teach women how to be good patients and not how to birth.  I feel there is something very wrong with the fact that a "birthing class" would not properly prepare a woman to give birth. 
As a society we seem to be losing touch with the natural rhythms of our bodies.  Births are primarily done in a hospital setting on a strict timeline.  Breastfeeding is still not fully considered the norm.  Look at it this way if there were no doctors or hospitals babies would still be born.  If there was no more formula, babies would still be fed. 
Okay stepping down off the soapbox now.

To everything there is a season

Lately some events have occurred that have both saddened and given me peace.  It has really brought the concept of life seasons into focus.  Two very dear people in my life have recently departed this world.  My grandfather and a good friend.  Papa had been slowly approaching the end of his life for sometime.  As it was clear that he would not be with us much longer I made in effort to take Oliver over to see his great grandfather.  We would usually stop in to see he and my grandmother after our morning workout class.  I always found it amusing that Papa thought that he had gotten to hold Oliver at one time.  He was very shaky and weak so we didn't let him hold Ollie.  He would tell us from time to time "I've held him, but Anna hasn't."  It was almost like the child's chant na na na boo boo at my grandmother.  We just let him think that he had held Ollie because really what was the harm in it.  Papa was adamant that he did not ever want to be put in a nursing home, and he got his wish.  He was able to stay at home with 24 hour care and in the end hospice became involved to keep him comfortable.  He died early one morning in his home with his wife and two of his children and a daughter in law by his side.
One of my cousins took a picture of Oliver and Papa the day before Papa died.  Papa was in his bed and my mom had put Oliver in bed with him while Papa was eating a banana.  Bananas are Oliver's most favorite food and he did not feel it was fair that Papa got to have one and he didn't.  So in those last few hours of life Papa and Oliver shared a banana.  It is a wonderful picture and I am so glad to have it.  It was such a special moment that at Papa's funeral the pastor talked about it.  How in that one instance there was the beginning of life and the end of life.  The taking of first breaths and the taking of last breaths.  The pastor discussed the sharing of the banana as similar to communion.
I have been forever grateful that Papa lived long enough to meet his great grandson.  I have discussed my fears in the early days of Oliver's life where I was not sure that he would be able to come home. 

This week we said goodbye to one of Oliver's "aunties".  Jan was a member of our church and for as long as I can remember she has been a friend of ours.  Jan was such a special woman and always so happy and kind.  Jan was part of the prayer group at church and also visited people who were sick.  She and our other friend Sunny made the trip down to Peoria to see me before Oliver was born.  She would send me cards in the mail as well during my time in pregnant lady jail.  The thing that I will remember the most about Jan was that she was so excited and happy to hear of Oliver's birth.  She was the only one and I think it was because she knew that he would be alright.    Since she passed several people have told me that she was so excited to spread the word of Oliver's birth and just thought that it was wonderful that he was here.  That is not the usual reaction for a baby born so early.  Jan and Sunny came to visit Oliver in the NICU when he was about two or three weeks old.  My mom and Jan sat together beside Ollie's fish tank while I went and pumped.  When I got back I stayed out in the hallway with Sunny visiting with her and looking at mom, Jan, and Ollie through the window.  Sunny told me that Jan was so very excited to come down and see Oliver that it was all she would talk about for days leading up to the visit.
During Jan's funeral service Oliver was mentioned again.  During Jan's last few months my mom would take Oliver over to visit when I went to the Y.  The pastor discussed how holding Oliver would give Jan a feeling of peace.  I am glad that she was able to have some comfort in her final moments.  Once again I was presented with the dawn and twilight of life.  It is my hope that Oliver will be able to continue to provide peace and comfort to others as he progresses through the seasons of his life.  

Breathing Room

I feel like a tremendous weight has been lifted from my shoulders.  Looking back over the past 10 months I feel like I have been holding my breath.  Now I am able to take a breath and let go of some of the worry I have had.  We had a good, informative appointment with the high risk OB.  He was the same as we remembered and upon entering the room he asked us if we were ready for another one already.  HA!  We were honest with him about wanting to know what the course of action would be if we wanted another biological child and told him outright that if it was guaranteed that I would be on bed rest in the hospital again with another extremely premature baby that we would pursue adoption.  I told him that summer camp at OSF was really not that much fun.  He was honest with us in return and basically laid out his recommendations.  While the doctor could not give us firm answers about the outcome of future pregnancies (he forgot his crystal ball).  Justin and I feel so much better after talking with him and having our questions answered and diagrams drawn.  He was honest about not knowing how long a pregnancy could go for me, but was pretty sure that with the interventions suggested that I could make it much further than 27 weeks.  He was also unable to tell us if I would end up on hospital bed rest again.  I know that no one can tell the future and I have to keep reminding myself that every pregnancy has a certain degree of risk and there are no guarantees of a healthy baby and mom in the end.
I think that I feel so much better because I was constantly wondering and running hypothetical scenarios about what the doctors would do to prolong a pregnancy for me.  Now that I have this information I can let go of some of this tension that goes along with wondering what if.  Any future pregnancies will not be easy relaxed affairs.  He recommended that we wait until Oliver is at least 18 months old because this is when studies have shown that a woman's body has fully recovered from a previous pregnancy and there is a significant decrease in the risk of unforeseen complications such as placental abnormalities.  I will first be seen by the high risk doctors between 6 to 8 weeks and then a Shirodkar cerclage will be placed between 12 to 14 weeks.  This will hopefully keep my cervix closed for the pregnancy.  I will also receive progesterone injections starting at week 16 and will get them every week for the remainder of the pregnancy.  I will have weekly to every other week appointments with the high risk doctors in addition to seeing my regular OB.  He also told us to NEVER take fertility treatments.  Even Clomid which only has a 15% chance of causing twins.  He told us that multiples and I would not work very well.  This was something that we had never thought about, but it made sense since I struggled with only one baby two would be even worse. 
Justin and I will someday have to make a decision about future children, but not right now.  For now we are free to sit back a little and just enjoy watching our little boy grow up and discover the world around him.  

Nerves

This week I have been a bundle of nerves.  Justin and I have an appointment with the high risk OB tomorrow.  I made the appointment to get some answers about the possibility of adding to our family.  No, we are not planning on having another child any time soon.  I am nervous about the appointment because depending on what the doctor says will determine the course we will take to our next child.  I want to hear what he says and at the same time I don't.  Part of me wants to go and hide under a rock but the other part of me knows that I will be more relaxed knowing the options.  Since I am a planner I need to know what he is thinking so that I can research and make a decision that both Justin and I can live with.  We will be meeting with the doctor who delivered Oliver, we like him and know that he will be honest with us. 
I am dreading rehashing my history.  I really hate discussing the horrible decision that I made in college that has lead us to this point.  I know that they need to know the details of my procedures, but they have all that information from last summer.  I feel like I am wearing a neon sign of shame and guilt for all to see.  I mean Justin and the doctor know what happened do we really need to go over every aspect of it.  I just wish I had a magic wand to make this an easy appointment.  The reality is that it will not be easy or quick and ultimately we will have a difficult decision to make in the future.  We know and understand that there are no guarantees with either decision that we make, which makes it all the more difficult to come to a conclusion.   I think I will go and vomit now.

Here Comes the Sun

Okay, lets all take a deep breath and relax after that last post.  I know it was not what people were expecting to hear from me.  So why would I want to share that awful time with all of you?  My point in sharing it was that a lot of people assume that once a healthy preemie baby comes home that everything is rainbows and glitter.  Justin and I acknowledge that Oliver was very, very lucky to come through this experience relatively unscathed.  He did not have any major complications due to his extreme prematurity.  We did have weekly home nursing visits for weight checks and Synagist injections, we had doctors appointments locally and back in Peoria, we had a few retina exams until Oliver's eyes matured enough to determine if there was any damage from his early arrival and the oxygen he was on.  All, in all not a lot of appointments for a 27 week preemie.  With that being said I felt that since Oliver was a very healthy baby that I had no right to complain about the trauma I suffered.  People find it easier to accept a parent struggling to come to terms with a child who has life threatening complications.
I want to let other parents know that it is okay to give voice to your feelings, there will always be someone who has a story more tragic than yours, but your feelings are your own.  You have a right and responsibility to take care of yourself, and do not compare your story with others and feel like you are any less worthy or deserving of help and support.  Through this process I have learned that it is okay to feel sad and mourn the expectations that were not fufilled with the birth of my child.

I think my healing truly began when I first reached out for help.  I really began to take steps to reclaiming my life around that time.  I used the following strategies to help get my life back on track:

• Routine  One of the most basic things to do to help combat depression is to structure your days.  Since Oliver had arrived home my routine went out the window.  I basically lived in 3 hour chunks of time.  When I wasn't feeding him or pumping I tried to sleep.  Once Oliver began to sleep for longer stretches of time so did I.  Most days I struggled to change into regular clothes by the time Justin came home.  At the end of January or the beginning of February I began to set an alarm to wake up and get out of bed.  It was a simple step but it made a huge difference for me.  This alarm gave me the moments in the morning when I could eat breakfast and have a cup or three of coffee by myself.  I have always needed to take some time for myself in the morning to kind of get myself together.  I also worked to get Oliver on a napping and bedtime routine.  Prior to this we kind of took cues from him of when he was ready for bed.  I began to pay attention and noticed that he got sleepy around the same time so I decided that he would take his morning nap after he had his first bottle and then his afternoon nap at Noon.  His bedtime was no later than 830.  Once he was on this schedule I knew more of what to anticipate during the day.  When he napped I could get some housework done and relax a bit. 
• Exercise  Prior to getting pregnant I had always been a fairly fit woman.  I enjoyed working out and seeing what my body could do.  I have run a few half marathons, I have climbed several mountains, I have gone on all day bike rides.  Once I became pregnant I stopped working out because my intuition or that voice I sensed told me that I shouldn't be hopping and running around because the baby might fall out.  How true that was!  So, add that significantly decreased activity level with 7 weeks of bed rest and another 6 weeks of limited mobility when we spent our days sitting in the NICU and you get cottage cheese body.  After my C-section I forced myself to walk from my room down to the NICU, I usually got a ride back because I was too tired.  I was so sore from my incision that moving was painful and slow.  Once I was discharged I slowly began to get some of my strength back and after two weeks out in the world I could walk from the car to the NICU and back.  My mom usually encouraged (forced me really) to walk around the outside of the hospital everyday after lunch.  I was not enjoying dealing with this weakened jiggly body, add that to the depression that was creeping up on me and my self esteem plummeted.  For Christmas my parents gave me a membership to the local Y so that I could start working out again.  I chose to go to some beginning aerobics classes thinking that I could handle that level of activity.  Ha!  I barely made it through the warm up, I didn't know how I could do the whole hour class.  I basically sucked it up and told myself that it had to end at some point and all I had to do was hang on and follow along.  The aerobic portion was followed by abdominal work, my incision had healed well but it sure got sore when I did abs.  I also joined a mom and baby exercise class at the end of January.  One of my friends had told me about it and I waited to join until Oliver was allowed to leave the house.  I was hesitant to join this class since I was so out of shape.  Once again I basically sucked it up and tried to complete the exercises as best I could. I slowly felt my body getting stronger over the next couple of months.  Attending the Y classes and the Stroller Stride classes also help to keep me on my routine.  SS classes are in the morning so I have to get up and get going.  the Y classes are in the evening so I have to kind of get dinner prepped before I go.  These classes give my days structure which I desperately need.  I still have a long way to go to get my body back to where it was prepregnancy but it is slowly going in the right direction.
• Diet  When Oliver was in the NICU we (mom and I) ate the free breakfast at the hotel.  It wasn't bad we usually had oatmeal and yogurt.  Lunch we usually ate at the hospital, I did not make the best food choices there.  Comfort food is called that for a reason people.  Dinner was always take out from one restaurant or another.  A few times we made the trek across the city to the new Hy-Vee grocery store that had just opened and would get huge plates of salad, veggies, and fruit to take back to the hotel.  Once Oliver was home I struggled to find the time and energy to cook dinner most evenings.  Take out and pizza became a staple for us.  Let me say this, eating crap makes you feel like crap and look like crap.  As I have gotten on a more stable foundation I have started to clean up our diet.  I cook a lot more and make healthy food for us.  Does that mean that we never eat pizza and Whitey's anymore?  Nope, we just eat it less often, like not everyday.  Last week I was finally able to get the garden planted so that we will have some fresh veggies and I need to start going back to the farmer's market to get local produce and meat.  As we have been eating better I am feeling better.
• Sharing our story  I feel that part of the healing process is the ability to put words to what happened, whether it is written, spoken, or both.  When Oliver was first born, I gave simple updates and didn't really disclose much about what really was going on.  Part of that was the fact that I was in survival mode and was putting everything away on a shelf to deal with later.  This is a normal protective response that humans do for self preservation.  After Ollie was home I would tell people the abbreviated version about what went on.  I remember the first time he went to the pediatrician it was 2 days after he was home.  He was laying naked and screaming on the scale when a mother and her toddler daughter walked behind us and I heard the mother say "oh my what a tiny baby".  It took all my strength to not turn to her and say: Hewasa27weekpreemieandIwasonbedrestinthehospitalallsummerwejustgothomeoneWednesdaynight.  When Oliver was first home his size was shocking, he came home below 5 pounds.  I developed a knee jerk reaction when people would comment on his size.  My response was always "he is a preemie".  I slowly began to share bits and pieces or give the abridged version of what happened last summer.  My instructor of the basic aerobics class figured out very quickly who I was, my mom worked at the Y and had put up pictures and updates of Ollie during his time in the NICU.  One of those updates was hanging up in the room where the class was taking place.  The instructor had us introduce ourselves and when I said "I'm Jean", she excitedly asked me if I was the Jean with the baby in the pictures.  I said that I was and she announced to the class that I was the mom of that tiny baby in the pictures at the back of the room.  Some people did come up to me and ask some questions after class.  As I became more comfortable with his story I also became aware that some of the details might make people uncomfortable so I just kind of gave a glossed over version of the story, especially to people I did not know.  Each time I shared his story it became a little easier to get the words out.  When I told one of my friends that I would be starting therapy soon, she sent me a journal.  She is a writer and really feels that writing can help people heal and move through difficult times.  She was right, telling our story without glossing over things for fear of making people uncomfortable has really helped me let some of this go.  I have also joined a support group for families who spent time in the NICU.  It is a new group but I am hopeful that it will be a good support of me and all the other people who are struggling to deal with their time in the NICU and the after effects.
• Reading I have always enjoyed reading.  I love going to the library and just looking through the books and deciding what I would like to read.  With the depression I found it difficult to concentrate on books, I would be reading a few books at a time because I would get bored with one and switch to a different one.  My therapist started recommending books for me to read to help me deal with this depression and PTSD.  The one that I found to be the most helpful was When Bad Things Happen to Good People.  It really helped me look at things in a different light.  The author is a Rabbi so some of his perspectives are slightly different from what I was brought up with in the Christian church.  I also read Man's Search For Meaning.  I liked the book but found it difficult to apply to my life.  I am currently reading Expecting Adam.  I really like the authors honesty and candor about what she was feeling about carrying a special needs baby.  I am beginning to enjoy reading again and have incorporated it into my daily routine.  I always take time before going to bed to read.  

I feel like these steps combined with therapy and medication have really helped me to begin to come to terms with what happened.  I feel like I am more fortified to take on this challenge head on and to regain control of my life.  I have to keep reminding myself that this is a process, some days are good and some days are not so good.  It is so very important to not let the bad days overwhelm the good days.  I try and reflect on the good in each day and take the time to sit back and enjoy playing with my baby. 
   

The darkest days

I have been debating about how to write this for several days.  What happened after Oliver came home is not that easy to put into words.  The simplest way of putting it is that things went bad, very bad.  Let me begin by saying that I had studied mental health in college.  I even worked on the psych unit for one of my student rotations and liked it so much that I got a job there after I had graduated.  I knew the signs and symptoms of various mental illnesses.  I just could not see these same signs and symptoms in myself.
I began to experience symptoms of post traumatic stress disorder (PTSD), shortly after Oliver was born.  The day I took my first shower after having Oliver I experienced my first flashback.  As I was standing in the shower letting the hot water hit my back I was suddenly right back in the delivery room experiencing all the sights, smells, and sounds.  That flashback left me sobbing, shaking, and slightly disorientated.  I brushed it off as it a fluke from the stress of the delivery and all the hormones.  While Oliver was in the NICU I usually would have flashbacks when I took showers.  I do not know why the shower would trigger these, but it was a common occurrence.  I didn't really talk about them because I had rationalized them to myself and figured that they would go away once we were home and the stress decreased.  Once he was home the frequency did decrease but I continued to have them.  I remember one time standing in the dish soap aisle at the grocery store when I had one, it wasn't severe and only made me weepy.  Nothing like trying not to cry in the grocery store to really make you feel like a freak.  Usually I could not fully remember what event I had just relived and just dealt with the emotional break down that always followed.  As time went by the flashbacks did begin to lessen, but I never knew when I would have one or what would trigger it.
This is also when I began to experience the anxiety and depression that would rule my life for the next 6 months.  I have written about the anxiety that I experienced with any changes that occurred with Oliver.  Once he was home it increased dramatically.  I was also taking Reglan at this time to help my meager breast milk supply.  Anxiety and depression are known side effects of this medication.  My midwife had warned me about it when I was given the prescription for the medication.  I began taking the medication a week before Oliver was home with no noticeable change in my anxiety level.  Once Oliver was home things began to go downhill, but I thought it was normal new parent worry.  I can remember laying in bed at night exhausted beyond belief and being unable to fall asleep because I was positive someone would break into the house and hurt us, or that the house was going to catch on fire.  I devised elaborate escape routes for us to get out of the house.  As a result of this anxiety I developed insomnia.  The nights that Justin was at work were by far the hardest for me to get through because then it was only me and Oliver and I had to be awake in order to hear if something was happening in the house.  All along I KNEW these thoughts were irrational and I knew that I could not voice them because I was worried that people would think that I was weak and couldn't handle things.
After two months I stopped taking the Reglan and my anxiety level decreased dramatically.  This decrease in my anxiety allowed my depression to fully gain a strong foothold.  My depression was strengthened by my sense of shame, guilt and failure about having a premature baby.  At this time I was also struggling with a very negative self image.  My depression took on the form of a negative voice in my head.  It repeated and convinced me to believe every negative thought that I had.  I eventually gave in and believed this voice, it sounded so rational and was very convincing.  My depression really twisted my thinking, but I thought that I was being rational.  I began to see myself as a horribly inadequate mother, I mean I couldn't even carry a baby to term.  I felt like I was being punished by God for being a bad person.  Let me say that this is not the image of God that I was brought up with or how I normally see God.  Each time I took Oliver to the doctor I felt like he was judging me and could see just how awful of a person I was.  Each time someone did something around the house to help like dishes or laundry, I felt like they thought that I was a lazy, fat, dirty, and disorganized person.  What person could not put the damn dishwasher away and put the dirty dishes in it?  I was after all, a stay at home mom these were the things that were expected of me I have all day to do these simple tasks.  I was highly irritable and snappy mostly this was directed at Justin.  Usually he did nothing to deserve this.  I hated myself, I hated that I was a burden on people, I hated the fact that more often than not Justin would come home to frozen pizza or take out because I could not find the time to cook.  I hated that I could not figure out how to clean my house.  I hated that all my friends found it so easy to have clean houses, get back their prepregnancy bodies quickly, play with their children, and worked!  I had zero energy to do any of those things.  I struggled to walk around the block.  I felt like I could no longer use the excuse of being on bed rest since my baby was 3 months old.  I was a slug.
Once Oliver came home I knew that no one wanted to hear me whine.  I mean I had a healthy beautiful baby, I shouldn't be complaining.  I kept my mouth shut and put on a good show for my family and friends that things were going really well.  I was also jealous of the women in my life who were pregnant and went on with their lives like it was so easy to carry an unborn baby. I felt like God was showing me that I was such a bad person that I should be surrounded by these happy, carefree women as part of my punishment.
My breaking point came when my nephew was born at the end of January.  My sister in law was having a scheduled c-section so we knew the day he would be born.  The week leading up to his birth I became more and more depressed, I could literally feel this black cloud descend on me.  The day he was born I was this seething pit of anger, jealously, shame, and irritability.  Not exactly the feelings one should feel with the birth of a new healthy baby.  I was happy for them, I was glad that he was healthy and full term.  That evening I locked myself in the bathroom and sat on the edge of the tub and really thought about cutting myself.  I had such mental and emotional pain inside that I was desperate to let it out.  The rational part of my brain wrestled with my depression and eventually won, I did not cut.  That was my only instance of wanting to physically harm myself.  I was so ashamed that I had even thought about doing this that I did not tell anyone.  I would also like to clarify that NEVER did I once think about harming Oliver.  That evening was my lowest low point and I felt awful.  The next morning I contacted my friend's mother who works in mental health to get a name for a therapist.  Once I had taken that first step to getting help I felt this huge relief and a sense that some of the baggage I had been carrying around for the past 6 months had started to lighten.  I knew things would get better.
My first appointment with my therapist I let it all out.  I didn't stop crying that whole hour.  My therapist did a wonderful job guiding me back to a place where I started to see the light again.  She gently nudged me to try taking an antidepressant medication once she found out that I was crying everyday and felt stuck by these depressive thoughts.  I was very honest about my fear of taking the medication.  Many of the side effects were things I was already struggling with so I could not see the point of taking medication that would make those things worse.  I was given a medication that does not have the side effects I was worried about.  I wrestled with taking the medication for a few days, and eventually decided to try it.  I am so glad that I made that step, the medicine gradually helped me feel better.  It was not a quick change but rather a gradual change that I was not fully aware of until I realized it had been several days since I had cried.  My flashbacks have disappeared since starting the medicine.  I feel like the fog and spiderwebs in my brain are clearing out.  I am starting to feel like myself again.  The medicine is not a cure and I still have work to do on myself and my relationship with Justin.  We both carry a lot of pain and sadness with us, but we are slowly figuring out how to let some of it go.  For the first time since Oliver was born I am starting to feel truly happy again.   
Now before you get all up in arms about why wasn't I being watched for depression.  I was being watched, I was given the postpartum depression (PPD) screening tool at least 7 times in the first 3 months.  I was first given the screen a few days after Oliver was born.  I was given the screen by my insurance caseworker a few times.  I was given the screen by Oliver's insurance caseworker a few times.  I was also given the screen by my midwife.  Each and every time I passed.  I feel like I passed because I rationalized all the questions.  Most of the questions on that screening tool end with the phrase "for no good reason".  I felt like I had a very good reason that I had anxiety, or felt sad, or didn't sleep well.  At this time I did not have any thoughts about self-harm.  This tool also did not address the symptoms of PTSD.  I know that most of the mothers in the NICU passed this test, we ALL had depression and or PTSD of varying degrees.  I feel like there needs to be a different depression screening tool used for mothers who have been through a traumatic birth, or have a special needs baby.  We are a population very much in need of mental health support after the birth of our children, but since the current PPD test relies heavily on self report, we fall through the cracks.
I was further able to fly under the radar since I put on a smile and acted like things were fine.  I was unable to speak about my feelings to others because of my sense of shame and guilt.  Deep down I knew I needed help, but I was so scared to reach out.  Who really wants their family and friends to see what kind of monster they truly are.  Depression is an awful and twisted thing.  It so clouded my thinking that it took a major scare for me to realize that I was not dealing with this.  I was also able to see that my usual coping skills of dealing with problems were not working.  Sometimes taking that first step in getting help is admitting you have a problem, that step is the hardest one of all to take.

Bonding

Bonding, attachment whatever you want to call it.  It was my expectation that I would feel this connection with my child, I should have known better.  I thought that once we were home that it would happen like snapping you fingers.  I will be honest that I had kind of held myself back from developing a true bond with Oliver while he was in the NICU.  I had once again let fear guide me instead of the gentle voice telling me that it would all be okay.  I was so scared that he would die that I didn't want to get too attached, I thought it would hurt less if he did die.  Looking back I do regret that decision to not try harder at developing that emotional bond with him.
Once Ollie was home and I became his primary caregiver I thought that I could just turn on those feelings.  The whole time he was in the NICU I had lived by their rules: only holding one time a day, touching him a certain way so as not to overstimulate his developing sensory system, keeping the doors closed in his fish tank to keep the heat in.  I waited to do his cares until the nurse gave me the go ahead.  I did try to develop some sort of a bond with him while he was in the fish tank.  I did all his cares when I was there.  I kangaroo'd him every chance I got.  I read to him a few times a day while he slept.  I did not know if he had developed a recognition of my voice when he was in the womb, so I was desperate for him to know my voice now.  Once Oliver was able to stay in an open crib I could hold him more, but I still felt fear every time I held him, worried that he would suddenly stop breathing.
When I didn't feel those feelings right away in those first few days I figured that it was due to my mental and physical exhaustion.  I felt like I was going through the motions of cuddling, kissing, feeding, bathing, changing, and rocking him.  I kept hoping that each morning I would wake up and feel that deep love and connection to my child that I had heard other mothers talk about, I felt affection for him but not that deep, deep connection.  This added to the layers of grief, guilt, and shame that had wrapped themselves around me.  I distinctly remember sitting on the couch next to Justin one evening watching television while Oliver ate.  I worked up the courage and asked him "when will it not feel like we are babysitting someone's child?".  I felt like a horrible person for giving voice to what I was feeling, I mean what mother feels that way about her own child?  Justin turned to me, and I noticed that he looked so tired and just kind of said "I don't know".  Justin was showing the strain and stress and lack of sleep over the past 3 months.  He was involved in the start up of a large project at work.  He would be working swing shifts for the first month that Oliver was home.  I HATED this schedule, 12 hour shifts sometimes during the day and sometimes during the night.  When he worked the nights it was the hardest because he would be gone all night and then come home and eat breakfast and go to bed for about 6 hours.  It was so hard, but I couldn't complain because his work had been so understanding this whole summer and Justin was always able to take days at a time off without anyone saying anything.
I remember feeling that I had made the right decision to not return to work after having Oliver.  I spent my days trying to develop a bond with my son.  I found that wearing him worked the best for me.  I had a Moby wrap that I would tie him to my chest with.  I liked this wrap because it allowed me the flexibility of positioning him how I wanted and how he was the most comfortable.  It also allowed me to position the wires from his apnea monitor without kinking them.
Nursing him also helped me to feel more attached to him.  When he was in the NICU I was only allowed to nurse him one time a day.  Once we got home and his doctor gave us the go ahead to feed him as much and as often as Oliver wanted, I would nurse him for most feedings and would then offer him a bottle.
The bonding did eventually happen, but it took a monumental amount of effort on my part.  I had to learn to let go of the fear that was holding me back.  I once again had to take another leap of faith, I had to trust that feeling telling me that Oliver would live and that he would be alright.    I am so very glad that I did take that leap.  I only regret that I did not do it sooner.  Today I feel like I have fully bonded and developed that deep love that a mother has for her child.

Springing Oliver from the big house

The days in the NICU blended together one into the other.  I much preferred the new NICU for the privacy and quiet.  My days had a new routine only that I was staying much later in the room with him.  Oliver was making strides and we were getting ready to go home.  He was having a difficult time getting off the oxygen and his doctors were preparing us that he might come home with it.  Justin and I were okay with that, we just wanted our baby home.  To prepare to take Ollie home we had to complete several tasks to prove that we were worthy of this great honor.  We had to take CPR, learn how to draw up and give his medicine, watch several educational movies, lean how to use his apnea monitor, and bring in the car seat for inspection.  Usually the NICU makes the parents room in for 24 hours and have them complete all the cares to make sure they can do it.  Since I had been there everyday since I was discharged and had been very involved in his cares we were allowed to skip this step. 
Oliver had a much more difficult list of tasks to accomplish.  He had to keep gaining weight, maintain his body temp in an open crib, take all his meals by mouth and finish at least 90% for a 24 hour period, be brady free for 48 hours, and pass that damn car seat test.
Thanks to a very high calorie diet Oliver was slowly gaining weight and had finally tipped the scales over 4 pounds at the beginning of September.  He was finally able to maintain his temp in an open crib on the second try.  He looked so tiny in that big crib.  Oliver worked really hard and so did I to eat all his food by mouth.  Sometimes he found it exhausting to drink his whole bottle of 30 ml's (that is slightly less than an ounce).  Toward the end he threw in a brady or two just for good measure so he was restarted on caffeine.  He was having some trouble with his breathing at this time too so he was given another blood transfusion to see if that would help both of these.  A few days after that transfusion his chest x-ray was fuzzy so he was trialed on a diuretic to get rid of some of the extra fluid to see if that would improve his breathing.  The drug worked and he was able to come off the oxygen a few days before we went home.  This meant that we had two more drugs to add to his list.  The day they took off his oxygen he decided to pull out his feeding tube.  The pressure was on to really get him eating everything by mouth since they didn't put the tube back in.  Oliver got to stay a few extra days because he could not pass the car seat or car bed tests.  The test consisted of strapping him in his car seat and he had to keep his oxygen levels and heart rate up for 90 minutes without us doing anything to him.  Once he failed the car seat test he was tried in the car bed and if he failed that he had to wait 24-48 hours to try again.  He failed these tests a total of 7 times, it was so frustrating! 
On September 15th, 2010 I went to the afternoon breastfeeding support group and Justin hung back in Oliver's room waiting to hear the results of the latest car bed test.  By this point I was not overly hopeful.  When I got back to Ollie's room Justin started crying and said that he had passed the test and we were going home!!!  We went back to the hotel to pack up and check out of my home for the past 6 weeks.  We said good bye to the wonderful staff there and headed back to the hospital to collect our child.  We called our parents and told them the news they were so excited.  Once we were back in the NICU his nurse had all these papers for us to sign basically saying that we were being given the correct child.  We also had to sign papers agreeing to take him to the doctor appointments that had been set up for us back at home.  Once that was done I put on his apnea monitor and changed him into his teeny tiny going home outfit.  It was a preemie size and was baggy on him and the hat was super huge on him.  His neo stopped by to say good bye and told him that he had a lot of growing to do to fit into that hat.

 All ready to go home!!!  Thank you OSF for taking such good care of both of us.

Yes that buckle is basically the same size as his chest.  I always felt like it was shoebox with straps.

Justin went ahead with some of our things (mostly a very full bag of books) and pulled the car around to the front.  A PCT carried Oliver out of the hospital and I pushed the cart loaded down with more of his stuff, for a little baby he had a lot of things.  He nurse had filled bags with bottles and nipples for us and even found us a can of his formula. 
We packed up the car and installed the car bed then I got to place my little baby in the car, it was glorious!  We were so excited and so scared at the same time because the nurses would not be coming with us.  Oliver slept the whole ride home and was pretty hungry when we got home.  We basically unpacked the car and tried to get the necessary things in place in his room. 

First diaper change at home.  Notice all the stuff in the crib?  I think everything that had been given to Ollie was in that crib. 

I made up a list of all his medications and at what times they needed to be given so that we could cross it off each time he got medicine.  Oliver was on a 3 hour schedule and different meds were due at different times of the day and night.  Needless to say we had alarms going off round the clock for feedings and medicine.  The three hour window for his feedings began when he started eating so I always said a prayer that he would eat quickly so that I could get as much sleep as possible before I had to feed him again. 
Once he was home I began to notice things about myself  that were different and somewhat troubling, but just kind of brushed it off thinking it was due to lack of sleep and everything that had happened over the summer.  I had no idea of the very dark days ahead.

NICU mamas

After I was discharged I began to use the lactation room when I needed to pump.  I was very uncomfortable to use that room at first, because there was usually at least one other woman in there at the same time.  As time went by I began to see the same women as some of us were on the same pumping schedule.  We hardly knew each others first names we all knew each other by our children's names, I was known as Oliver's mom.  These mothers who were all struggling with their own troubles became a great support system for me.  The relationships developed in that room were different than any other I have experienced.  I think mostly it was due to the nature of why we were all there and the intimacy of the lactation room.  We felt safe in that small, dimly lit room to share our thoughts and feelings.  We celebrated the smallest step forward and we gave support and encouragement as best we could when there were steps backward.  Sometimes I would go there when I just needed a break and to be by myself.  That room was always empty when I needed it to be and I am grateful for that.  We helped the new mothers and gave them suggestions and told them about some of the things we had learned along the way that made life easier.  You could always tell who was new.  Not just by their struggle to walk and their slow careful movements.  They all had the same look, the look I am positive we all wore when we were the new ones.  When you looked into their eyes you could read the shock, the sadness, the asking of why, the struggle for comprehension.  When I look in the eyes of a veteran NICU mom I can still see traces of these, but I also see a hardness and a sharpness that comes from seeing too much.  
I have stayed in contact with some of these women who I met in that room.  They continue to be a support for me.  We continue to encourage and support each other and our children.  We have walked, talked, laughed, and cried together.  So, thank you NICU mamas for helping me navigate through these troubled waters.  I know without a doubt that I could not have done it without you.

Ch-ch-ch-changes

The whole time Oliver was in the NICU I was so afraid of changes.  Any change brought on so much anxiety for me, I didn't want to rock the boat.  One morning during team meeting Oliver's doctors told Justin and I that we could have him transferred to our local NICU since he had stabilized.  We didn't even look at each other, we both refused.  He was doing so well we did not want to chance it.  It wasn't that we didn't think he would receive good care at our local NICU, we just did not want to get used to a whole new medical team.  We were also worried about him tolerating the travel.
I remember one morning when Ollie was about 2 weeks old, my mom and I arrived at the NICU at our usual time.  She got scrubbed in first and went into the room where he had been since he was born.  She came back out shortly and in a low voice told me that he had been moved and they were looking to see where he was.  I instantly felt a wave of anxiety wash over me.  What had happened during the night that they had to move him?  I almost started crying.  We found out shortly that he was next door in the less critical room.  His nurse explained that they had gotten some new babies during the night and they had to shuffle some kids around.  Ollie was kicked out of his spot because he was the most stable of the critical babies.  I will be honest I HATED his new room.  He was the smallest and still in his fish tank, while a lot of his neighbors were in open cribs.  It was so much noisier in that room.  One baby would start crying and it was a domino effect until many other babies were all crying or setting off their alarms.  Oliver was much more restless in this room and would often pull at his tubes.  I felt like this was the room for the teenage parents, there were so many of them.  Some of them were very involved with their babies and others only came to see their children sporadically.  I felt so bad for those babies who never got held by anyone other than their nurse.  Some of these precious little ones were going through drug withdrawal, and were so irritable.  Some days when I needed to distract myself I would wonder how these very young parents, who were children themselves, could possibly deal with all of this.  I mean I have a very strong medical background and was struggling to get through this experience.
The whole time Oliver was in this room my anxiety was increased significantly.  I just wanted to go back to his other room where it was quieter and I knew the nurses better.  At the same time Oliver made some big strides in this room: he started wearing clothes, and began oral feedings.  These events are huge in the life of a preemie.
Another huge source of anxiety for me was the looming date of the "big move".  OSF had recently completed the construction of a new children's hospital and the NICU would be moving.  I didn't know how I would handle it if I couldn't deal with him moving 50 feet to a new room.  The parents were prepped for the move and given tours of the new NICU to help set our minds at ease.  A big concern for everyone including the staff, was that we were all going to be in private rooms.  The babies were currently in a big room and there were about 4 nurses in each room so if your nurse was busy you could simply ask another nurse for help.
The night before the move we were informed that Ollie would be in the first wave of babies moved, so we needed to be at the hospital by 730 when the move would start.  Thankfully the move day was one that Justin had off so he got up extra early and drove down to be there for the move.  The morning of the move my mom and I arrived at his bed and saw a large sign on his fish tank with his new address, he was going to the Airplane neighborhood.  Justin got there about a half an hour before Oliver was moved.  We could see some of the very critical babies being rolled down the hall with a team of staff, it was about a 10 minute walk to the new NICU.  When Oliver's time came he was transported with 4 nurses and 1 respiratory therapist.  We walked with him to the elevator and said good bye and then we were escorted to a different elevator and shown how to get to the new NICU.  When we arrived we were given ID's in order to get on the unit.  After scanning in we found his room and gave a sigh of relief that he had made the trip and was in his room safe and sound.  Once we were settled in we loved the new unit.  Everything ran smoothly and there was not a problem of not having help when you needed it.

All the babies got shirts for the move.  Ollie's nurse thought he should wear his that day and we agreed, one must dress for the occasion.  To put his size in perspective that shirt is a newborn size and it went down to his knees and past his elbows.  

 His moving crew packing him up.

 He made it!!!

Each room had a couch that folded out into a bed and a rocking chair.  It was so much easier to pump in the room, I loved it.

A's and B's

Unfortunately I am not talking about grades.  As Oliver's need for respiratory support lessened he began to have episodes of apnea and bradycardia, basically he would stop breathing and or his heart rate would drop drastically.  The apnea was caused by three things, his brain, his trachea, and reflux.  Since Ollie was so early his brain was not quite ready to keep all his systems going at the same time.  He simply would stop breathing, without intervention he would die.  His nurses explained to us that the cartilage his trachea was super flimsy so it was like a bendy straw and would sometimes get kinked.  They showed us how floppy his ears were and said that his ears and trachea would firm up at the same rate.  So the fact that you could bend his ear in half and it would stay that way was not a good thing.
His brady episodes were directly related to his apnea episodes.  We would get him breathing again and seconds later he would alarm for low heart rate and we would once again have to stimulate him to get him going again.  Somedays he would have several cycles of these, I hated those days.
To counteract the A's and B's he was started on caffeine.  We made jokes about him being a Starbucks junkie and how I would have to get him his morning coffee along with mine.  In the early days when he would set off his alarms nurses would quickly pop open the portals in his fish tank and shake him to try and trigger his brain to breathe.  As he got older they would wait a few seconds to see if he could "self correct".  They would watch the numbers on his monitor and if they continued to go down then they would stimulate him.  I hated sitting there and resisting the urge to reach in there and flick his foot to get him to take a breath.
Once Ollie was stable enough to start kangaroo care with us he had apnea each time we held him.  Kangaroo care was where Justin or I would hold him skin to skin for as long as he would tolerate it.  We could only hold him one time a day so we would take turns and on the days Justin was visiting he got to do it.  I loved it and was scared @%$&less at the same time.  I knew that it was just a matter of time before he had an episode.  Usually it was because his head was too far back or too far forward, we would try and gently reposition his head to realign his trachea.  That act in itself was scary too since he was so premature his skull bones were so thin and fragile and you could feel them shift slightly under your fingers, ugh.  I found it very difficult to relax and enjoy kangarooing with him.  I was afraid that if I shifted the wrong way or moved too much that he would stop breathing.  

 Justin and Oliver's first time kangarooing. 

 My first time kangarooing the day after Justin.  Yep doing it during a mealtime.

Once Oliver started having larger meals he started to have reflux.  His reflux was due to the feeding tube that was put into his stomach that did not allow the valve that connects his esophagus and stomach to fully close.  The reflux was also caused by him being a preemie with lower muscle tone.  Each time he had a reflux episode he would spit up and stop breathing.  The first solution was to place him on his tummy when he was being fed.  That worked for a few days.  When that stopped working they took him off gravity feeds and his milk was pumped in over an hour.  This was how he was fed until he could nipple all his meals.  After he was eating by bottle if he refluxed his eyes would roll in the back of his head and he would turn blue and pass out.  Then it would happen again a few seconds later when he would have a brady.  He did eventually outgrow the bradys while he was in the NICU.  He had to be brady free for 48 hours before being allowed to go home. 
Each morning when I arrived at his fish tank I would ask how his night had been and how many episodes he had had overnight.  I basically spent my days holding my breath waiting for when he would stop breathing and how long it would take to get him back on track.  There was so much anxiety around holding him and feeding him, that I approached each with a sense of dread, but forced myself to do them.
As we got close to discharge we were told that since Oliver was still about a month away from his due date that he would be sent home with a monitor and caffeine.  Studies had been done that showed that most babies stopped having apnea by the time they were 44 weeks gestation, so we were looking at a minimum of 2 months with a monitor.  Oliver had his for 3.5 months and it was so very scary to turn it in.  The monitor gave me a sense of security so that I could sleep, knowing that it would alarm if he stopped breathing.

Our support system

I can honestly say, and I know Justin would agree with me, that there is no way we would have made it through this nightmare without all the support we were given.  There were many times that we needed others to hold us up when we were too exhausted or discouraged to keep going.
Family:  Our families were amazing during this.  As you know several relatives came and sat with me when I was in the hospital.  My mom basically gave up her whole summer to sit with me and then she sat with me and Oliver.  She took a leave from her job and made it home on the weekends to see my dad.  My dad we nicknamed the zookeeper.  He would take in our two dogs and our special needs cat every weekend, and those weeks that Justin stayed in Peoria after each crisis.  The dogs ate a few pairs of his shorts during their time visiting.  Our cat loved my dad, I mean loved him.  Buzz would sleep with my dad and my dad even made a space for Buzz on a table next to the couch so they could watch tv together.  Buzz had diabetes and that summer he became insulin resistant so he was getting pretty wacko.  He would wake my dad up sometime between 3 or 4 am to feed him.  Sometimes Buzz would stand on my dad's clock radio and turn it on in the middle of the night.  Dad got a little cranky about that.  My aunt, uncle, and cousin would come and visit me as well, although I think my cousin was only there for the student nurses.  They and my parents stripped and stained our back deck.  It was a horrible project and took a lot of work.  They also helped to put together the nursery and my uncle did some plaster work in our bathroom.  Justin's mom came and visited a few times and she and his sister also helped around the house and with the nursery.  Once Ollie was here they basically purchased his wardrobe.  Members of both of our families sent care packages to both myself and to Ollie.  Oliver got a lot of mail while he was in the NICU.
After Oliver was home our families continued to help us.  Mostly they were an extra pair of arms so that we could sleep or take showers or put the dishwasher away.
Friends:  Our friends  kept tabs on us.  Our neighbors mowed our grass and watched the house.  We got a lot of emails and phone calls from friends along with come care packages.  Many of my former clients kept in contact with me or called my work to check on me and the baby.  I felt awful leaving everyone in a lurch when I was admitted.  Those families that I once helped now turned around and helped me.  Some of the mothers of my clients had gone through similar situations and understood all to well what it was like.  Some of my former clients are part of a support group that I now attend.
The first week I was admitted I met a nun who worked for pastoral care.  She explained that if I wanted she would stop in once a week and visit with me and pray for me and my baby.  I enjoyed her visits, she was this tiny woman from the Philippines.  She would talk with me and who ever was my visitor that day then she would pull out her prayer book and recite a prayer.  The morning after I delivered I saw her on the mother baby unit.  She told me that she had already been to the NICU to see Ollie.  I asked her how she had known that he was down there and she told me that she was given a printout of who was in what room and that my name was now in the mother baby unit so she figured the baby was in the NICU.  It gave me some peace that she had been one of the first to see him and that she prayed for him.  She would continue to see Ollie once a week while he was in the NICU.  She is on our Christmas card list and we send her updates every now and then.   
Church:  Justin and I belong to a wonderful church.  Several of the ministries became involved with us when I was first admitted.  I was put on the prayer list and received many cards from other members.  My pastor visited me before Oliver was born.  I also was visited by other members.  Some meals were made for Justin so that he didn't have to eat take out all the time.  The morning after Oliver was born his birth was announced during the service.  He was put on the prayer list as well.  The church started the "prayer bear" for him.  It was a great idea, basically there was a stuffed bear with a backpack placed on a table during coffee hour and people would write Oliver or us notes and put them in the bear.  Each week we would receive an envelope containing several notes of well wishing.  Pictures of Oliver, one of his tiny diapers, and a note on his progress were placed next to the bear.  Oliver also received visits from our pastor and some other dear friends of ours.  Once we were home we received some meals and Oliver continued to be on the prayer list.  I strongly feel that all of the prayers and positive thoughts for Oliver made a huge difference for him.  Justin and I and most people who know us feel that God smiled on our child.