Friday, December 14, 2012

I peed in the holy water!

There is an old joke about 3 nuns who had lived completely sinless lives. One day the monseigneur came to them and told them that only Jesus could be perfect so they were going to each have to go out and commit a sin.

They all went out to commit their sins. The first nun returned sobbing. She said, "Father, I did as you said. I went out and I crossed the street against the light." The monseigneur said, " very good Sister, now go drink some holy water and you will feel better."

The second nun returned also sobbing and said, "Father, I did as you told me. I went into the convent and tore the tags off a mattress." The monseigneur comforted her and said, "Go drink some holy water and you will feel better."

The third nun came back laughing and laughing. The monseigneur said, "Sister, did you did as I told you?" she replied "Yes Father, I did." He asked, "What did you do?" She answered him, "I peed in the holy water!!!"

I remembered this joke the other day when I was changing Andrew and after I changed his diaper, I changed his clothes. As I was snapping up his outfit I felt his diaper and I asked him, "Did you already pee in your new diaper?!!" He grinned at me, the biggest grin I've ever seen on his face, and all I could think of was, "I peed in the holy water!!!"

Tuesday, December 11, 2012

Someone's gotta have the homely baby...

The first time I was hospitalized I had a conversation with one of my nurses one night. I told her that I kept having these lingering fears that I was going to have a homely baby. She said, "Oh, your baby will be beautiful!" I looked at her and said, "Come on. We all know there are homely babies out there, and the law of averages says that someone has to have the homely baby." She paused for a moment and then she said, "Yeah, we call them FLK's. It means 'Funny Lookin Kid."

I laughed really hard at that, and we spent the next several minutes discussing what you say to the proud parent of the homely babies. She said that she usually picks a feature and focuses on it, for example, "Look at those adorable little toes!!"

Matt and I made mental notes to listen carefully for the term FLK when our son was born. When I got sent down to Seattle, I talked with some of my nurses there about the FLK's and picked up on more of their "code." Apparently the "pick a feature" method is quite popular. At my one week checkup, the nurse told us that she can't lie if she doesn't think a baby is cute, so she will simply say, "Congratulations!! You must be so happy!"

So of course I had to pull out my phone and show her a picture of Andrew to see her reaction. We laughed and said that after telling us that, she would have to lie to us if she didn't think Andrew was cute. Thankfully she is either an absolutely fantastic liar, or she really thought Andrew was cute.

In our 4 weeks in the NICU we never heard an "FLK," and believe me, we listened for it. My fears of having the homely baby were allayed rather quickly. Obviously every baby is beautiful to their parents, so I wasn't sure that I wasn't just seeing what I wanted to see. But as the days passed we overheard enough conversations to know that wasn't the case.


Monday, December 10, 2012

A Journey of Faith, a Story of Hope Part 2...

When I went in for my 1 week check-up, and again at my 6 week check-up one of the things that the doctors talked to me about was post-partum depression.  At the 1 week check I had to take a little test to see if I was depressed.  Apparently my responses ranked me at a mild depression, which I don't actually agree with, and my doctor in Seattle wasn't too concerned.  He agreed with me that the wording of some of the questions was debatable and that I was probably just fine.  But I had a lot of factors in play that made them want to watch me closely.  First of all the abruption, and then the extended bed rest, and then the traumatic birth, and finally my baby being in the NICU were all things that made me a higher risk for depression.

When I went in for my 6 week check back at home, my doctor explained it a way that I would never have thought of.  He told me that I could very well be mourning a loss.  I hadn't lost my baby, but I had experienced a loss in a different way.  I didn't have a "normal" birth.  I didn't get to have that moment after the birth of my son where they lay him on my chest and I could look at him.  To this day, I have absolutely no clue who cut Andrew's umbilical cord.  I wasn't able to see my son until he was over 3 hours old, and I didn't get to hold him until the following day.  It was perfectly normal to grieve over these things, but I don't think that I really did.  I don't feel like I was cheated out of these moments because I knew all along that if any of those things had been possible, they would have happened. 

Every birth story is an amazing event, and I don't think that mine is any more special than anyone else's.  I do however think that when your child begins their life in a NICU, there are aspects of your birth story, and the hours, days, weeks, and sometimes months that follow that only a fellow NICU parent can truly understand.

                                             Andrew Christopher - on the night he was born

The first time I saw my son was not right after he was born.  In the OR I was able to glimpse a little bit of his leg through a sea of scrubs and gowns.  This picture was shown to me in my recovery room a couple hours before I was able to meet my son.  On this night, I still had no idea what was in store for us.  I honestly didn't think that he would be in the hospital for more than about a week because they told me that he was breathing on his own, but just needed a little help.  

The next morning, after a short and mostly restless night, I was anxious for 3 things to happen.  1.  I wanted to go see my baby  2. I wanted those damn squeezers off my legs!!! 3. I wanted my catheter out.  The "Squeezers" are the things they strap to your legs following surgery that inflate every few minutes and squeeze your legs to maintain circulation and prevent blood clots.  They made me so miserable because I was just getting the feeling back in my legs from the anesthesia wearing off and I already had that "Pins and needles" feeling, and having my legs squeezed on top of that was terrible.  Also, I had a reaction to all the drugs and was incredibly itchy all over for several days after Andrew's birth.  (This got worse when I developed an infection under my incision and then had an allergic reaction to the antibiotics and got a rash all over my abdomen and legs.)  The nurse told me that I couldn't take the Squeezers off until I was up and walking, and I couldn't get up and walk until the catheter was out.  I said, "OK, take the catheter out and let me get up."  She said that I couldn't get up until at least 12 hours post-op, except I could move to a wheelchair and go up to the NICU.  Matt got me in my robe and took me up there.


Upon my arrival in the NICU I asked if I could hold him.  Because he was so little, and had all his monitors, IV lines, and CPAP machine hooked up, I had to hold him wrapped up in his nest of blankets they had him in.  When they placed him in my arms, I started to cry.  It wasn't the typical new mother, brand new baby, tears of joy moment that is seen in every TV show or movie.  In my case, as I cried and looked at my tiny son, I was apologizing to him.  I was saying over and over again, "I'm so sorry.  I'm so sorry.  I tried so hard to keep you safe, and I wish I could have done better."  This was one of those moments where the rational part of me was AWOL.  Every time I look at the picture of the first time I held him, I remember those words I said to him.

I know beyond a shadow of a doubt that I did everything I could, as did the doctors, but that Andrew just wasn't able to make it full term and that he needed to be born early in order to survive and eventually thrive.

Andrew did thrive.  He continually amazed all of us with his strength and determination.  He was off the CPAP machine in less than 36 hours.  I was at his bedside when they took it off and put him on a high flow nasal cannula instead.  I watched as my tiny newborn son immediately and deliberately reached up and grabbed that tube and pulled it out of his nose.  I thought, this had to be a fluke or an involuntary movement because no baby that new could have that kind of motor skill.  The nurse replaced it and Andrew again reached up and pulled it out.  Twice.  In 10 minutes.  The respiratory therapist who placed it was puzzled.  He had to come and redo it and re-tape it more securely.  Within another 24 hours, Andrew was off the nasal cannula and just breathing room air all on his own.

At all times there were at least 2 other babies in Room 6 with us, and usually there were 3 others.  The occupancy of Room 6 was 4 babies, and sadly we were never at less than full occupancy for more than about 12 hours.  We got to know some of the other parents, and we knew all the babies' names and a little bit about why they were there.  

Every single day Matt and I talked about how grateful we were that our son was just so small and needed to get bigger and stronger, because aside from that he was perfectly healthy.  The same could not be said for so many of the other babies that came and went from that unit.  Some were transferred to Children's Hospital, some were stabilized and released, and sadly one poor little baby died.  We counted our blessings and knew how very lucky we were.  Even though Andrew's "events" seemed like the biggest and scariest thing in the world to us, we were continually reassured that these were all normal occurrences for a preemie.

I worked around the clock to make sure that Andrew had enough milk for every feeding, and in the beginning it was very hard work, and before too much longer, I probably could have fed all four babies in the room.  I spent all day every day at his bedside, leaving only to eat, use the restroom, or go to the "Quiet Room" to pump more milk.  

The wonderful night nurse that took care of Andrew for his first few nights was such an encouragement to us, and she urged me to spend as much time holding him and doing "Kangaroo care" (skin to skin contact) as much as I wanted because it was so good for both of us.  I took a few naps that way, with Andrew and his wires and tubes carefully arranged and tucked in, and both of us wrapped in warm blankets.

It was a very strange thing to come to terms with, having a baby in the NICU.  Andrew wasn't sick, per se, but he also wasn't totally healthy.  He wasn't able to leave that room, and even though the nurses and doctors constantly told us how great he was doing, every day the reality of it would hit me.  He wasn't just in a hospital nursery, he was in the Neonatal Intensive Care Unit.  

My son was 13 days old before I ever saw his whole face with nothing at all attached to it.  He was 27 days old before I could pick him up and move more than 6' away from his bed because he was tethered to the monitors.  It took 3 tries for him to pass his carseat test.  

Most people I know will never have to worry about those things, and I am so happy for them.  I pray that no one I know will ever have to worry about these things.  Most of my friends and family were constantly commending us for how well we were dealing with all of this, and as they did, I felt almost guilty that we had it so easy down there.  My heart was breaking for the other families in the NICU, for the babies who were so much sicker than Andrew.  Every day I thanked God for my beautiful son, and I prayed for the health of the other boys in the room, and for their parents' state of mind.  I would feel guilty for feeling like we were going through so much when so many others were going through so much more.  

It's a very bizarre thing to spend so much time there, and have that unit become your whole world.  Matt and I would go for walks to get some air and we would laugh at the smallest things because we were so tired and so overwhelmed that the littlest things were hilarious to us.  For example, when you get in the elevator in the parking garage, if you don't press a button, the elevator won't actually go anywhere.  Sadly we stood in that elevator for a good 30 seconds before we realized that we weren't moving and that neither of us had pushed a button.  We would sit by Andrew's bed, both playing on our iPads or texting or doing something and we would hear an alarm go off and immediately we would look at Andrew's screen and if it wasn't him, we'd go right back to what we were doing, while silently saying a quick prayer for whichever baby it was that was alarming.  It got to the point where we would be talking with our visitors at Andrew's bedside and an alarm would go off somewhere in the room, and Matt or I would say, "Oh, that's just a Brady," (The screen would say "Extreme Brady" which means Bradychardia, their heart rate would drop alarmingly low) or "That's just an occluded line on an IV.  Nothing to worry about."  It became completely normal for us to toss around those terms and think nothing of it.  It was more difficult for us to imagine leaving that room for good and not having all those monitors and alarms around us at all times.

All the doctors and nurses would tell us, "This will all be a distant memory for you before you know it."  And each time we heard that, we would think, "Yeah right."  In that moment it is hard to imagine ever being out of there, or ever putting this all behind you.  We would watch those lights flash, and hear those bells going off and encourage Andrew to pull out of it by himself, because if he required intervention, it was an automatic 5 days more in the NICU.  Each time an event happened we would feel more and more uneasy about taking him home, because how would we know if he had one at home without all the monitors?

I know that the doubts and fears we had were universal in the NICU.  It's a strange sort of paradox.  Each family's NICU journey is simultaneously unique and the same.  None of us thought we would be there, all of us worried about our babies and how we would cope, all of us wondered how long our lives would revolve around those rooms.  And while I can't say this with any authority, I am guessing that all of those other mothers also had moments of fear and guilt and self-doubt where they berated themselves for not being able to do more for their child.

On the first day that we came home and left Andrew there, it was a Friday, and one of the worst days of my entire life.  It was the day after he was originally slated to go home, but his events and failure of the carseat test had made that impossible.  I knew that leaving the hospital was the best thing for us to do because we needed desperately to have a little time away.  But as much as I knew that, it couldn't penetrate the wall of doubt and guilt surrounding me that day.  I took Andrew out of his bed, and sat down in the recliner and held him.  I broke down in tears and sobbed, "I'm so sorry Baby.  I wish that I could have kept you in and safe and growing big and healthy.  I wish that I could have done better for you.  I'm so sorry.  I love you so much, and I'm so sorry."

The nurse taking care of Andrew's neighbor heard me and she got up from her charting and came over to me and said, "You can't do that to yourself.  You can't blame yourself.  You did everything possible, there was nothing you could have done differently and none of this is your fault.  You need to believe that."  She told us that we needed to enjoy our time away and not feel guilty, that we needed to take advantage of the most expensive babysitters we would ever have, and just let them take care of Andrew while we took care of ourselves.  She got me a box of tissue and gave me a big hug and told me again to stop blaming myself.

I am so glad that she was one of the nurses working the day we took Andrew back to visit, and she got to see how big and healthy he is now because she helped me through one of the darkest moments of my life, and I will always be grateful to her.

We have been home for almost 12 weeks now and Andrew is absolutely thriving.  He is gaining weight at a rate that both stuns and pleases the doctors.  He is a happy, healthy boy, and a smile from him makes my entire world better.  And, just like everyone said, those weeks in the hospital have faded to a memory.  Every day that passes, those first weeks fade further and further, they have lost  their sharp focus in my memory, and I don't think about it as often.

My hope is that other NICU families who are in the midst of their journeys would know that they are not alone.  That the feelings they feel, the fears and doubts they have are all a normal part of this process, and that there are many others who have been where they are now.  As corny as this may sound, I often thought of the Barry Manilow song, "I made it through the rain." The line, "I made it through the rain, and found myself respected by the others who got rained on too, and made it through" played in my head a number of times.  I don't know about the "respected" part, but we made it through the rain, and we know others who got rained on too and made it through.  And that is what I would want to share with those going through it now, you can make it through.  I know that not every family has a happy ending to their NICU journey.  I know that to some, we had it really easy.  Andrew was only there for 27 days and he came home with no monitors and no serious consequences of his premature birth.  We were incredibly blessed, and I will never take that for granted.  

I've heard the old saying that there are no atheists in a fox-hole, and while I don't know how true that is, I know that the NICU was my fox-hole and that I could not have made it through without my faith in God and my ability to trust in His plans for Andrew and me.  






Sunday, December 9, 2012

A Journey of Faith, a Story of Hope... Part 1

I have been meaning to write this for quite some time now, but I haven't been ready.  However, for the past week, since we made our first visit back to the UWMC to show Andrew to his doctors and nurses, I have not been able to stop thinking about writing this story.

There will be some overlap to previous posts in writing this story, but bear with me, it all plays a role.

When I found out I was pregnant, I experienced the usual thoughts and emotions that I imagine any expectant mother would have.  You think lovingly of this tiny little being growing inside of you, and you touch your stomach all the time looking forward to the day you will feel those first movements.  You worry about the possible problems and then you focus on the joy of your new baby to come.

I knew from the beginning of my pregnancy that I was "High Risk."  I had a big red dot sticker on the front of my chart that signaled that fact to all the doctors and nurses.  I was high risk for several reasons; first of all my mother had a very difficult time carrying a baby to term due to an incompetent cervix and a tilted uterus.  My sister had blood pressure problems in both her pregnancies that led to early deliveries (4 and 3 weeks respectively), I had a history of high blood pressure and heart issues that had been under control for the past 5 years, and last but definitely not least, I was in the Advanced Maternal Age Group.  The fact that I would be 36 years old when the baby was born bumped me into that group.

My very first appointment ruled out a tilted uterus, and it was determined that we would monitor my blood pressure closely and also have more frequent ultrasound appointments to check my cervix.  At 12 weeks I had the first round of genetic screening done, and my risk factors came back the lowest that any woman of any age can have.

We progressed along, and all my tests were good, and my cervix was showing no signs of incompetence.  I was relaxed and feeling like we were going to cruise along through this pregnancy just fine.  

                                                   12 Weeks - All is Well

About halfway through my second trimester I began having contractions.  Nothing serious, just Braxton Hicks, but the doctors told me that if I had 6 or more in an hour I had to call them.  And they said that I could not continue to work the hours I was working, I had to cut down to only 8 hours a day.  Later that week, I arrived at work and promptly had 8 contractions in the first hour I was there.  I called the doctors' office and was told that they wanted me to come in.  I called Matt and told him and he said he'd meet me there.  I took Lucie with me just in case I wasn't coming back to work that day.  Sure enough, my instincts were right.  After an exam which determined that my cervix was still closed, I was told to go home for the rest of the weekend and take it easy.  I was not on bed rest, but I was supposed to sit down with my feet up as much as possible.  On Sunday I decided to go to church, and it was my week to sing on the Worship Team.  I explained to everyone that I was supposed to stay off my feet as much as possible, so we brought a stool on stage for me to sit on.  All morning long I was having some fairly sharp pains in my cervix.  It worried me a bit, and I talked it over with my friend Rachel.  We decided that I should call the doctor just to be on the safe side.  After talking with Dr. Mallory, I decided to go get checked out at the Childbirth Center because my motto was (and still is) "I'd rather over-react than under-react.  It was determined that I was fine, I had an irritated nerve as a result of the exam I'd had on Friday.  At that check though my work hours got cut from 8 a day to 6 a day, and I had to take at least 4 15 minute breaks during that time.

I continued on that path for a few more weeks until we hit the Bump in the Road that was my Placenta Abruption.  From that night on my life consisted of hospital rooms and bed rest.  Even during my first few days in St Joes, and the subsequent bed rest at home for the next couple weeks, it never occurred to me that I would have any real complications.  I honestly thought that we'd be able to stick it out and that I would deliver a few weeks early (my goal was 37-38 weeks) and that I'd have a 5-6 pound baby.

The day I was transferred down to the UWMC I realized that the likelihood of making it to 38 weeks was pretty minimal.  But I was still determined to do everything I could to get as far as possible.

                                                       34 weeks - Bored and Pregnant

After my first few days in Seattle, all was calm and we were chugging ahead with the plan of "Stay pregnant until 35 weeks, and then look at delivery."  Then things were so stable that they bumped it out to 37 weeks.  We knew that chances were good that our son would go to the NICU for a couple days, and then we would be headed home.  I had never even entertained the notion that my baby would not follow that pattern.  Honestly I thought that chances were good that we'd skip the NICU all together.  That was not meant to be...

Throughout this whole period of hospitals and bed rest, I was completely at peace.  I was relying heavily on my faith and trusting with all my heart that God was in control and that He was taking care of us.  I don't know what I would have done without my faith.  I know that I wouldn't have maintained my good spirits during 7 weeks in bed, I wouldn't have been so at peace, and I wouldn't have been able to so easily give up any semblance of control that I thought I had over my life and my circumstances.

We had a number of doctors and nurses comment to us about our great attitudes and how well we were handling this.  We kept saying the same thing in reply, "What other option is there?  What good would it do to be angry or upset?"  If I had been angry or upset I wouldn't have been trusting in God.  That's not to say that I didn't have my moments where I doubted myself.  The logical, rational part of me knew that I had done everything I could to keep myself healthy and the baby safe, but there were a few moments where the logical, rational part of me was AWOL.

I won't go into the birth story again, but there are a few parts of that day that I didn't mention in the previous post.  From the time that I was induced, and began bleeding again, I had the 3rd (I think) verse of Amazing Grace stuck in my head.  "Through many dangers, toils, and snares I have already come.  Tis Grace that brought me safe thus far, and Grace will lead me home."  At shift change that afternoon, my wonderful morning nurse went home and my evening nurse came on.  It was a sweet woman who had been my nurse a few times in Antepartum, and her name is Grace.  I thought that was so perfectly appropriate that Grace would "lead us home" down the final hours of my pregnancy.

And I have to end Part 1 with a funny story... I knew that I would have to take my belly button ring out if I had to have a C-Section.  That was something I was not looking forward to because I was afraid that if I had to keep it out for too long that it would start healing up again, and I knew I would have to let it go because at 36 I wasn't going to wait for it to completely heal up, and get it pierced for a third time and go through that healing process again.  When Dr. Maserie gave us the news that we were moving to surgery immediately, I held off as long as possible and took it out at the very last minute before they wheeled me down the hall.  When they brought me back to recovery, I was shaking from head to toe.  When Matt came back into my room to check on me, I asked the nurse if I could put my belly button ring back in yet and she said that I could.  I, still shaking fiercely, took the ring in my trembling fingers and managed to, by Braille because I couldn't see my belly (nor could I sit up), get the ring back into place.  Then came the fun part, putting the threaded cap back on.  I tried several times and couldn't get it because I was shaking too hard.  Then my poor frazzled husband tried, but alas he was shaking too  much too.  Finally between the two of us working together, and after several deep calming breaths which stilled some of the shaking, we managed to get the cap threaded back on.  I had to laugh at how ridiculous that must have been, I was less than an hour post-op, I had not seen my son, I had no idea what was going on, and all I could fixate on was that stupid little piece of steel.