Saturday, July 16, 2011

Difficult months

I've started this post and left it in drafts.  I need to finish it.  Like pulling off a band aide.  Only a few months later and I am already thinking that it was easier than it really was.  Soon I'll think "oh it wasn't that hard.".  Oh, yes, yes it was.  Having a newborn is hard.  Having a toddler and a newborn is hard.  Having a toddler and a newborn who cries, needs to be held/bounced/walked/shhh-ed literally 24/7 or else she cries, who screams in pain, turns purple from crying, and has broken blood vessels on her face from screaming and crying is HARD.  And for those who will say "it could be worse" because we heard a lot of that, YES, I know it could have been worse.  My child was healthy (for the most part) and we thank God for that. 

I started this blog as a therapeutic tool and for documentation purposes when we were having a difficult time trying to conceive a child.  I had been through difficult times before.  I knew I would have difficult times again.  But I believe that the first few months of Harper's life were perhaps the most challenging months of my life so far - and like I said, I've been through things ...dysfunctional family, hurt, loss, more moves than any child should endure, foster care, etc... but this... this beautiful child... was a challenge.  She was in pain and we were so desperate to help her.  To help all 4 of us. 

We kicked off the New Year with a screaming baby and in result... a cranky family.  January, and February for that matter, were especially difficult.  I stopped ALL forms of dairy (yes, even hidden dairy) on12/31/10 and knew that we had a long road ahead of us until all the dairy was out of our systems.  I kept soy in my diet and even tried a little soy milk over my oatmeal but quickly realized that was a BAD idea.  Harper was in even more pain.  I cut soy out of my diet with the exception of soy oil and soy lecithin because typically MSPI babies can handle those two.  Harper's bowel movements looked "normal" most of the time.  Mucousy stools were one of Ethan's main symptoms but Harper's were rarely mucousy at first (it arrived some later on but not near the extent of how long Ethan suffered from them).  Ethan was fussy and cried a lot before I cut out dairy but Harper continued screaming even after mShe was also showing signs of reflux.
We tried everything to get her sleep somewhere other than on us - even on her belly for naps.  This lasted a few minutes.  Occasionally she slept longer - usually when friends came over and could have held her :)

I'm trying to recall everything by date but I can't.  What I recall most is the way my baby girl cried in pain, as if she was begging me to help her.  Her body stiffening as she pushed her legs out in pain and frustration, kicking me as I held her.  When we finally did get her settled she cried as soon as we pulled her away from our bodies to put her down.  Add all day fussiness and crying to the nightly screaming sessions and we were grasping desperately for reasons, for a resolution.
I wanted pictures of Harper in outfits that we had chosen for her, outfits that I loved on her and I kept waiting for happy times to take them.  She was outgrowing everything so we took photos even though she was upset.  Reality.

During the first week of January I called the pediatrician and took Harper in to be seen.  We had a long wait at the doctor's office and Harper cried nearly the entire time.  I tried shhhing.  I tried the pacifier.  I tried nursing her.  I tried walking.  Bouncing helped a little.  Other patient's parents who were waiting commented on how unhappy she was, like I was oblivious to it or something?!

The doctor suspected reflux and sent us with instructions for Harper to have an upper GI performed the following day.  The first bottle she would consume was filled with nasty barium solution.  Not only was I sad about that fact but I was also concerned about that setting us on a difficult path.  Ethan refused bottles after 4.5 months, resulting in me racing to the daycare every 4 hours while trying to work.  Was this going to set us on a path with another bottle-hater?

Harper took the bottle of barium solution down like a pro.  The upper GI showed she refluxed and we were sent on our way.  The pediatrician's office called later instructing us to pick up her new medication.  Very little instructions were given besides giving her a half tablet of prevacid once a day.  WHAT A PAIN.  Cut the tablet in half, try to make sure it was perfectly even so that she would have the same amount of medication in her system, dissolve the tablet in water in a syringe, make sure all of those darn little beads get into her mouth (again fear of inconsistent dosage)... I am frustrated just thinking about that process again!

Soothing Harper... Due to her reflux we could no longer bounce her to soothe her.  It had worked initially but then she would wake screaming in pain just a few minutes later ... likely due to the bouncing, sloshing milk around, and refluxing up her esophagus.  The sound of the hairdryer stopped her from crying and soothed her.  The sound machine wasn't loud enough to calm her down.  We used it on it's highest volume at night while we slept but it did nothing for her when she was crying.  Recordings of a hairdryer weren't loud enough either.  Sometimes the vacuum helped.  Music did nothing which made me sad because Ethan had loved listening to music from the time he was a newborn.  She didn't care for her carseat so car rides were not relaxing for quite some time.  The swing, which had been a blessing with Ethan, was not used much during Harper's first 2+ months.  It didn't soothe her and we were also fearful that it would aggravate her reflux.

So, if you can't bounce but have to keep moving to calm a baby, what do you do?  WALK.  And not just any walk.  We had to walk a certain way (I won't even attempt to explain it because I don't know how!) to calm her all the while continue shhsing in a rhythmic pattern or blast the hairdryer.  We figured out the walk (and everything else) through trial and error.  Every day seemed like a new stress inducing adventure.
Just under a month old in the Baby K'Tan.  I don't have it over my shoulder all the way here but it's very comfortable.  This carrier helped me keep my sanity during these difficult months.

The morning was Harper's best time.  She started smiling and cooing in the morning.  She fussed but didn't cry as much in the morning.  I was always happy to see morning arrive after the long nights.  I slept propped up on the sofa with her on my chest for the first 2 months.  I saw the clock on the cable box throughout the night.  A few nights we accidentally turned the tv off but not the cable box and I thought it was the time showing but it was really the channel (a channel in the 500's).  I was actually disappointed that it was only 3:30am and not after 5am.  
Almost a smile caught on camera!  The poor dear has a rash all over her face here.  We were concerned that it was caused by allergies but her pediatrician knew as soon as he looked at her that it was a heat rash ... from sleeping on us at night!
This was one of my favorite newborn outfits that she outgrew so quickly.  I bought it out while I was very pregnant with her.

Lunch time was a challenge because it was difficult to keep her asleep on me while I ate, even if I wore her.  Sometimes I tried to eat lunch while wearing her and swaying in the kitchen.  By late afternoon she melted down and I walked.  Most afternoons I put a show on tv for Ethan or set him up with an activity in the living room while I put the hairdryer on in the bedroom for Harper.  I walked up and down our hallway so I could watch Ethan and keep Harper calm. 
I have not decided what I will do with the sweatshirt Matt is wearing in this picture.  He must have worn it often during this time because whenever I see it, I remember (almost flash back to) how stressed Matt looked as he paced back and forth trying to soothe Harper from her purple crying (some nights she cried so much she turned shades of red and purple).
 Still, I love the look on Ethan's face in this picture and seeing Matt with our babies.

There were some evenings that I sat in the bathroom and cried after Matt arrived home from work.  Those few moments were the only moments I had to myself.  I could hear Harper crying and Ethan trying to get Matt's attention.  I wasn't sure if I could handle much more.  It was wearing us down.  Matt took care of Ethan's bedtime routine while I took care of Harper.  We quickly learned that this division wasn't healthy for any of us.  We needed to be consistent but give each other breaks.  I remember walking around the dining room table, with Harper screaming in my arms, the hairdryer on, and feeling jealous that Matt was snuggled up with Ethan reading books as a part of his bedtime routine.  Nights were the worst.  After Matt completed Ethan's bedtime routine he came out to help me.  We took turns walking with Harper while she screamed, until she fell asleep.  We'd often turn the Game Show Channel on with closed captioning since it was easy to watch with the hairdryer on because we had to leave the hairdryer on for a while after Harper fell asleep.  If we turned it off too early she woke up crying.  It was quite a dance every night.  Matt would often be the one to get Harper to sleep.  I sat up on the sofa with pillows propped behind me and Matt transferred Harper to me - just so- then we could enjoy a few moments of watching tv or talking before I fell asleep.  Sounds dreamy and really, those were the few small moments of relaxation ... with my baby girl snuggled up on me, my sweet boy sleeping in his crib, and my loving husband supporting us.  It took HOURS to get to those few sweet moments before I fell asleep.  I tried not to worry about how soon she would wake or how long the night would be.  Harper woke every 2-3 hours to nurse and have her diaper changed.
Finally asleep.  Snuggled up with her Daddy while we listened to the hair dryer and watched tv.

There were days that we listened to the hair dryer on and off for hours.  We even borrowed an old one from my mother in law because I didn't want to burn out my favorite hair dryer.  It took her a while to get used to the replacement hairdryer.  At first it didn't calm her down but she soon adjusted to it.  We still had to use my hairdryer to get her to sleep every night but were able to use the quieter one for naps. 
Each week as a part of our grocery shopping routine we stop and smell the flowers with Ethan.  He often chooses a single flower to take home.  This yellow rose bloomed so big during some of our darkest days in January.  Every time I walked into the kitchen I saw this big, bright, beautiful yellow rose and it made me smile.

We saw a slight improvement after starting the reflux medication but then she regressed.  We called the pediatrician again who increased her dose to a half tablet twice a day.  Oh joy, I get to do that whole process twice a day.  Sweet.  It didn't matter.  I just wanted her to feel better.  2 weeks later we called again.  She had improved but still screamed every night.  We moved the dosage time up.  We scheduled another appointment with her pediatrician.  He increased her dosage again and had her stool sample tested for blood.  It was positive.  We were sent to see a local Pediatric GI and I cut ALL soy out of my diet, hoping that would help.

Harper fussed, cried, and screamed for a week after her 2 month immunizations.  That happened to be the week of our appt with the peds GI.  That was a colossal waste of time. He drew pictures of the GI tract, he listed and crossed off possible reasons for Harper's issues, he went on and on and on but took us NO WHERE.  Did I mention Harper was having a most difficult week during this appt?  Ugh, the man was clueless.  He wanted my unhappy child to stop crying so that he could tell me what he DIDN'T think was wrong with her.  He told me "you have a very unhappy baby on your hands".  Seriously?  I live with her 24/7, I know this.  This guy tried to tell me that he hasn't seen eliminating dairy and soy from a nursing mom's diet help babies who cannot tolerate milk and soy proteins even after I told him what I eliminated to be able to nurse Ethan.  He pushed prescription formula and ended our very long visit with "I haven't seen it work.".  Well, I have.  We left there with a enormously long list of testing that he thought we should have done, including about 25 stool sample and blood tests and a barium ENEMA on a TWO month old -to rule out a rare disorder that she wasn't displaying symptoms of.  Needless to say, we didn't have those tests done and we never saw that crazy man again.  Harper had visible blood in her diaper the next day and I panicked.  I can look back now and realize that it was likely caused by a small fissure due to the exam.  Ugh! 

We sought a second opinion.  Fortunately we were able to get an appointment with a Pediatric GI at Johns Hopkins who specializes in reflux.  It was more than worth the trip!  The doctor we saw listened to our concerns and supported our decision to continue breastfeeding Harper.  She made suggestions regarding Harper's MSPI and provided new prescriptions for her reflux.  The prevacid solutabs that we had been giving Harper contain lactose and aspartame that may have been irritating her system even more.  The doctor suggested a liquid prevacid.  From what I've read from others experiences, liquid prevacid did not work for their children but it has worked for ours.  I have read complaints about pharmacies not mixing it properly or the flavoring that is added having a negative effect but we have not run into this problem.

I'll continue the story in my March update because our problems weren't solved completely by February but this post is getting long enough. 

Before I close Jan and Feb 2010 I need to address how my sweet boy, Ethan handled all of this... he was a trooper through these struggles.  He has loved his sister from the moment he met her.  I will say that a thousand times and still my heart will beam over it every time.  He surely was affected by the adjustment of having a sibling and especially by having a sibling who cried all the time but he took it in stride.  His catch phrases came to be "baby sister upset"  and "baby crying".  He even told his teachers at school about it.  He often asked me to turn the hairdryer off because it was "weally, weally woud".  Ethan showed some difficult behaviors through this but considering the stress that was obviously occurring, no matter how much we tried to keep things normal for him, he did very well. 

Fun with Daddy!

1 comment:

  1. Whew! If it's that difficult to read about it, I cannot begin to imagine the hell that you went through. Look how far you've come!! Love you guys!