Showing posts with label mspi. Show all posts
Showing posts with label mspi. Show all posts

Monday, August 22, 2011

March 2011

I think of March as a transition toward easier times until I stumble across an email in my drafts box like this one:

"Harper is getting worse again.  We are wondering if this liquid prevacid is not working as well as the solutabs.  She has had screaming fits the past couple of nights... also tougher to get her to sleep.  Thurs night she screamed at 8:45 and last night it was all of the sudden at 11:45 then all throughout the night - like she couldn't get settled.  We unswaddled her so she didn't sleep as well and I've been up since 6 with her.  I just want her to feel better.  I feel like if this isn't working, then what?!  I can't imagine if we have to switch to that expensive formula :("

My heart aches as I remember that again.  It was a special kind of hell.  3 months of trying to soothe Harper as she screamed.  By March she had stopped screaming every night.  She was still fussy, cried a lot, and had some screaming fits but she didn't seem to be in as much pain as previous months.  The dairy and soy should have been FULLY out of her system, her digestive tract was likely continuing to heal, and she was on consistent reflux meds.

In March we took Harper to Johns Hopkins.  The doctor switched her to a liquid Prevacid and at first it didn't seem like it was working.  The doctor also prescribed Zantac for use before bedtime because some studies show Prevacid doesn't work in the middle of the night.  We didn't notice a difference in Harper's (lack of) sleep if she had the Zantac or not so we stopped giving it to her.  We tried it out of desperation during screaming fits some nights but still, there was no difference.  The doctor also prescribed Erythromycin to see if helped to have Harper's stomach emptied faster.  We discussed this medication with her doctor.  Matt and I never felt comfortable giving it to her.  It is an old antibiotic that is no longer used as an antibiotic but used for the side effects it caused - emptying the stomach.  The doctor said that it wasn't necessary to use so we didn't.

Mornings continued to be Harper's happiest time.  Throughout the day she napped in her swing, swaddled, with her pacifier, and hairdryer running or in the car or while I wore her.  We continued to try putting her down while asleep in an elevated bassinet, bouncer seat, or cosleeper but she woke after only a few minutes.  At night she slept next to me and nursed usually every hour.  If we tried to give her the pacifier at night she screeched and cried.  And she's a princess so I gave her what she wanted.
 Harper's first tiara, 3 months old.
Kidding (well, sort of.  I didn't let her continue to screech so I nursed her).  Her grandmother gave her this little tiara. 

During March Harper's cry turned from sounding like a newborn to an infant.  She weighed over 14 pounds.  She giggled for the first time, started chewing on her hands a lot, and started blowing raspberries/spitting.  We took her to the chiropractor that I saw during my pregnancy.  He was incredibly helpful to me.  Unfortunately, we didn't see similar results with Harper.  Actually, Harper seemed to be even more upset in the days following the appointments so we stopped taking her. 

Some photos from March.
Harper enjoyed bath time.  She relaxed until you tried to wash under her neck rolls, then she cried.
Ethan loves bath time too. He requests bubble bath and blowing bubbles.
Relaxing, watching Mickey after nap.
Grabbing and batting at toys for the first time.
3 Month photo with cute shoes.
"I thought things were supposed to get better after 3 months/the fourth trimester?!".
Still doing newborn-like leg lifts and keeping her hands and feet clenched closed most of the time.  A quick stretch here to reveal she's still storing lint in between her toes.
Fussy or not, Ethan adored his sister.  He was trying to help her put her sock back on here.
Do you see that SUPER long single eyelash?  It nearly touched her eyebrow when she had her eyes wide open.  Crazy long and Matt probably thinks it's crazy that I took a picture of it.  I used to show it to him all the time.  
When Ethan's love of matchbox cars began.  Have you ever stepped on one of those bad boys?  They are EVERYWHERE!
Both Matt and I think one of the cutest sights to see is Ethan eating. 
L.O.V.E.
 Ethan mimicking Harper putting her hands in her mouth.
And wanting to be just like Daddy.
A favorite outfit
Another (so much so that she has those pants in size 12 months too)
And another.
 My heart could burst. 

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!



Saturday, February 27, 2010

12-13 months

I decided to break Ethan's development recap into one month rather than two this time since he's met so many milestones/had so many firsts over the past few weeks.

-We started off with his first stomach bug after his first birthday party :( He was quite a trooper through it all. He was hesitant to eat for a few days afterward. He only nursed and ate apple sauce for about two days. My poor baby.

-He started a phase where he loves to push buttons (including mine). If a toy has a button to push, he finds it, although his favorite buttons are on the DVD player.

{This is the Little People School Bus. Thanks Emily, John, and Brynne! He loves to push the driver's head and make the bus honk or sing.}

-We witnessed his first attempted to feed himself with a spoon. We're continuing to work on this skill.

-He learned the twinkling hand motions for "Twinke, Twinkle Little Star". He does it when you ask him to get his twinklers out.

-Ethan started stacking blocks



-He experienced more snow! 22 inches on Feb 6th and about 12 more inches on Feb 10th.









We have a great video of him laughing at Matt throwing snowballs at the storm door. I need to figure out how to upload videos to a post or upload it to our youtube page soon!

-He went bowling for the first time at his cousin Scotty's 4th birthday party


{See our ball way down there next to the gutter?}



-He went through a stage where he wanted to use his pacifier more during the day and I think it was prompted by teething. We try to limit pacifier use to naptime and bedtime.

-Speaking of teething, his Upper Left Cuspid, Upper Right Cuspid, Lower Left First Molar, and Lower Right First Molar broke through... All in a 4 week time span. The Cuspids tips have broken through but they haven't come in completely yet. It seems those are taking forever compared to his other teeth.

-His language development is progressing. He continues to say "a dat?" and point when he is inquiring about everything. He says "is dis?" too. For a few days his favorite phrase was "O Gawh" which sounded like "Oh God". At nearly 13 months Ethan said his first unprompted, very clear word which was "Bubble". We were reading this book before bed. We got to the page that says "Where are Baby's hands?" and under the flap it says "Under the bubbles". Before I could even say it, he took his pacifier out of his mouth and said, in the sweetest voice, "bubble". He is also showing word association as he said bubble when I had a bottle of bubbles out to blow for him. Most recently he has been saying "bapple" for apple, one of his favorite foods. He has started to sound like a monkey when he says "eh, eh, eh". He says this when he wants something but can't communicate what it is.

-Ethan's new foods this month were black beans and turkey lunch meat. Both are also current favorite foods. We attempted chicken breast, ground turkey, and ground chicken but he didn't care for the textures. As soon as we put them in his mouth he spit them back out. While grocery shopping one day I asked the deli counter if they had any dairy and soy free lunch meat. They suggested "Just Turkey", no butter injected, no added flavoring, no preservatives. I worry about cross contamination but so far Ethan doesn't seem to be showing any reactions and he absolutely loves it. He ate an entire slice as we finished our grocery shopping and continued to sign for more. Also on the food front... I have been able to introduce decaf coffee with coconut milk into my diet. What a treat! Unfortunately, Ethan showed a reaction to rice. We attempted giving him bananas and rice. Although he enjoyed eating it, he had black bowel movements afterward. Ethan's pediatrician stated that it was not a good sign and for both of us to stop consuming rice.

He loved the tastes of the homemade marshmallow he had for his Valentine photos.

-He also started making a cute, scrunchie nose face when he smiles. I love it.



He started sharing his food with us too. I can't tell you how many slightly soggy Kix I've eaten from his hands.


-He crawled backwards for the first time and started crawling on his hands and knees much more often. Now, at the end of the month he has almost completely given up his army crawl. Once he realized that he can crawl just as fast on his hands and knees he stopped moving to his army crawl. I miss it.

-He learned to cruise around the furniture very quickly and has gained enough balance to stand on his own for a few seconds

-He was given a ride on/walker toy as a first birthday gift from friends. It's an ice cream truck and has treats under the seat. He loves to hide just about anything that will fit in there. He started walking on his knees while pushing it and is up to his feet now. After he became more comfortable walking with this toy he allowed us to hold his hands to help him walk. Previously he wanted nothing to do with that. If we attempted holding his hands and encouraging him to walk, he would plant his feet or sit down in refusal. He knows what he wants and doesn't want and is not afraid to voice it.




{The serious, determined look on his face makes me smile.}

-Unfortunately he started having more aggressive tantrums. He started hitting me, toys, and friends out of frustration, curiosity, and anger. This has been a challenge because of his age. He isn't quite old enough for the discipline methods we had in mind for dealing with behaviors like these (think timeout). At first we tried holding his hand and saying "We don't hit." or "No hitting." in a calm but stern voice. That only seemed to encourage the behavior. He would hit again and more forcefully. If we continued to address the behavior that way it lead to a full-on tantrum with arms, legs, and head flailing. At that point I put him down and the tantrum intensified. I sat on the floor next to him. Once he calmed down and wasn't aggressive, I picked him back up. We took opportunities when his hands were near our faces to say "Nice" and show him soft touches. That worked for a while. Anytime I said "Nice", he stroked my cheeks instead of hitting me. We decided to try to ignore the hitting. This tactic seemed to work much better. His hitting has decreased tremendously. Sadly, he still hit a friend several times last week (so sorry Jackson!). I can't ignore that so I took Ethan away from playing and encouraged him to play nicely when we returned (BTW, Kim, I really liked how you said "Welcome back Ethan" each time. That is a great positive tool). We had a play date yesterday with Reagan and he did not hit her once. He patted her head when he was trying to move around a toy and she was blocking his way. Either it was a good day or he knows not to hit girls :) Either way, I'll take it!

I didn't anticipate having to deal with these behaviors this early. At his one year appointment his pediatrician stated "Children like Ethan grow up to be wonderful, productive, successful adults ... but they're difficult to raise.". I wasn't really surprised by her observation because I know he can be a challenge. A wonderful challenge but still, a challenge. He is determined. That determination can be difficult to handle but at the same time it gives me so much pride and hope for him. If he had a different personality then we could have had even more problems during his infancy. I believe that he survived so well through all of the digestive issues and allergies because he is a fighter.




{First facial bruise as a result of his tantrums. He threw his face to the floor three times during two separate tantrums. Natural consequence?}