Sunday, January 19, 2014

Lizzy's Feeding Journey

My lactation consultant (LC) asked me to write a blog post detailing the difficulties that we've had with breastfeeding and getting Lizzy to eat.  She wants to be able to share it with other families who are struggling as an example of a success, because Lizzy has never had formula a day in her life.

Disclaimer:  I do not judge or think less of parents who use formula. Sometimes the baby needs it because of food allergies.  Sometimes the mom doesn't respond to the pump very well and has a low supply because of it.  Some mothers are on medications that pass through to breast milk and are harmful for the baby.  At times, some babies are too sick and need the weight gain that comes better through formula than breast milk.

At the end of the day, we can all agree that breast milk is best overall for the baby.  There are antibodies and nutrients in there that no amount of formula can quite make up for.  This blog post is designed to give encouragement and hope to those who are going through feeding difficulties and are ready to throw in the towel.  I hope that I can inspire and uplift those who are struggling but want to continue.

Lizzy was born with a severe posterior tongue tie and could barely lift her tongue off the bottom of her mouth because it was attached all the way across.  I also have flatter nipples, so between the two, Lizzy was not able to latch on without a nipple shield.  Even then, she had a difficult time sucking and eating.  The shield began to be extremely painful, and I would have to switch sides with Lizzy about every 5 minutes because the pain was so intense.  The problem with this is she developed a foremilk-hindmilk imbalance and was only getting the low-fat part of the milk.  This can lead to weight loss, and she was having lots of green diapers.

 Look at how little she was!  She weighed 4.5 lbs.

After two weeks of this, we went to see an LC, who has turned out to be a strong support and a good friend through this entire journey.  I am so grateful and blessed that she was the one who was assigned to us:  she is the head of the lactation department at Texas Children's Pavilion for Women, and was extremely knowledgeable.  It was she who diagnosed the tongue tie, which the regular doctors weren't able to fully figure it out when Lizzy was first born.

Normally this would require surgery and anesthesia to fix, but thankfully my LC knew of a pediatric dentist who could it with a laser cutter.  There was only one in the city of Houston, and I found out later that there aren't very many in the U.S. who can do it.  I feel like it was a miracle from Heavenly Father that this particular dentist was not just in Houston, but only about 30 minutes from our house.

We took Lizzy in right away; at this point she was three weeks old.  To make a long story short, the laser cutting went well (and by that, I mean it was horrible and worse than shots, but it worked).  After three weeks, however, we noticed that it had re-attached and we had to go back a second time.  For this entire story, please see this blog post I wrote.  Finally she completely healed, but at this point she was 9 weeks old and was so traumatized by our attempts to breast feed that she just cried and cried whenever she saw my breast or her lips touched my skin.  This time period was probably one of the darkest, most heart-breaking times of my life.  It's all detailed in that blog post.  It was traumatic for both of us, but I also learned a lot about the Savior, my Heavenly Father, and Their love.

Throughout all of this, I was really hoping that we would eventually be able to latch on.  I did not want to create nipple confusion, so we syringe fed her milk that I pumped - she would suck on one of our fingers while we used a syringe to slowly push milk into her mouth through the corner.  We got a pump through the insurance company, and every time she ate, I would pump afterwards.  This led to me having a great supply, and I was making almost double what she ate!  She would eat about 16-20 oz per day, and I was pumping around 45 oz.  We bought a deep freezer and began storing the milk in there.  By the time Lizzy was 4 months old, we had frozen about 1500 oz of milk (about 60 days' worth)!



Feeding Lizzy with a syringe.

This whole part was very difficult, though.  Each syringe only held about half an ounce of milk, and she would eat 3-4.5 oz each feeding.  It was a time-consuming process, and it took her about 30-60 minutes each time she ate.  At night, it was always an hour long because she was tired.  This was especially difficult for me because she would wake up, I would get her syringes ready (15 min), feed her for an hour, put her back to sleep (15 min), pump for 30 minutes (that's how long it takes me to empty), and then clean up by washing all the pump parts and syringes by hand (15 min).  This whole process would take almost 2 1/2 hours, and then I would only get 30-45 minutes of sleep before she woke up again wanting to eat.

For about two weeks I did this until I was so completely exhausted I had a breakdown.  One of my mom's friends, an extremely dear woman whom I love, flew down from Denver for a week (her husband is a pilot and her kids are all grown) to help me out.  She would get up and feed Lizzy at night, and I would pump during that time.  It was amazing!  All of a sudden, I was able to sleep in two hour blocks instead of 30 minute blocks!  When she left, I asked Phillip if he wouldn't mind taking over the nighttime feedings while I pumped.  He is such a dear, dear man - he didn't even have to think about it.  He just did it, without complaining or murmuring at all.  He never threw the "I have to work full-time" card at me, which I love him dearly for.



Anyway, by the time Lizzy was healed and it had become clear to us that she wasn't really going to latch on anytime soon, we had to start looking at other options than syringe feeding.  She had gotten a bit "lazy" with it  - her suck was really weak, and she just would lie there with her mouth open, waiting for us to just push the milk in.  This was a problem because it would cause difficulties with solids and speaking later in life.  We saw an occupational therapist, who gave us some exercises to do and suggested we start using a bottle.

The bottle we settled on was the Medela Calma bottle.  The reviews showed that it was the best because it had a series of chambers that opened to allow milk to come through the nipple ONLY if a vacuum was created.  This mean Lizzy had to actually suck.  She was pretty angry with it the first time we used it, but she figured it out after about 10 minutes.  It turned out to be worth the expense (about $20 for 1 nipple and 2 8-oz bottles).  Her mouth and tongue are a lot stronger now - she can now finish a 6 oz bottle in about 10 minutes, whereas before it would take her over an hour to get 3-4 oz down.

Lizzy using her new bottle.
Around this same time I started having symptoms of thrush in my breasts (itchiness and red, shiny nipples).  I just ignored it because I didn't want the hassle of trying to have to go to the doctor.  I didn't have a car, and we were trying to save money.  I got a cold, though, that started to turn into an ear and sinus infection.  Because of my Crohn's Disease and having no immune system due to my Remicade infusions, infections can get bad quickly in me.  I had c. diff. three times in 2012, though, so antibiotics are now only used as a last resort.  Instead, my primary care physician (PCP) gave me a week of prednisone to try to lower the inflammation and let everything drain out.

I hadn't told him I thought I had thrush, and what I didn't know is that prednisone will make yeast grow completely out of control.  Next thing I knew, within about two weeks, the thrush had gone systemic.  It was in the milk ducts, making my breasts burn and ache.  The areola was completely red, raw, and bleeding every time I pumped.  I had white patches in my mouth, as well as a yeast infection.  I put a call in to my PCP, who gave me two weeks' worth of diflucan (an antifungal).  After a week, though, I was feeling worse so he admitted me to the hospital so I could get IV antifungals for a week or so.

Visiting Mommy in the hospital.

Through all of this, I kept pumping.  We checked with the pediatrician and LC each time I got a new medication to make sure that it was ok to still give Lizzy the milk.  Surprisingly, very few common medications are bad enough to have to "pump and dump."  I also downloaded the app LactMed, which gives information on how medications affect breastmilk and also milk supply, among other things.

Two weeks after I got discharged from the hospital - about the middle of November - I still wasn't certain the thrush symptoms were gone, but my PCP said it was fine.  I then promptly got influenza, in spite of having the flu shot the month before.  Luckily, I did not have to hospitalized for this.  I did have to wear a mask for a few days, which Lizzy hated.



The next weekend, I got mastitis really bad, probably as a leftover from the thrush causing so many bleeding cracks in my nipples.  I still had one that would re-open and bleed a bit each time I pumped.  The oral antibiotics were not clearing it up, so I had to be hospitalized again until the day before Thanksgiving.  We then made a quick trip to Denver, where I had to go to the ER to make sure the symptoms I was having were Crohn's and not c. diff.  I had been on a lot of antibiotics for the mastitis, and antibiotics always makes my Crohn's flare up.  Since c. diff. is extremely contagious, I didn't want to be flying with it.  The test came back negative, so I was given prednisone to help get over this hurdle.

Unfortunately, however, the prednisone made the thrush come back with a vengeance.  Along with this came a problem:  the Crohn's flare had caused a perianal abscess to form.  I called my PCP because my GI was on a 2 month break as she switched practices.  He had me come in and insisted it was just a swollen gland.  I disagreed with him, but he kept insisting.  This was a Friday afternoon, and by the time Friday night hit, I was in so much pain I could barely walk.  The next morning was a ward (church) Christmas party.  Not only had I volunteered to make a couple of breakfast casseroles for it (which Phillip ended up doing, bless his kind heart), but Santa was coming!  There was NO WAY I was going to not have a picture of Lizzy with Santa for her first Christmas!






After a quick stop at the party, we went to the ER.  Yes, it was an abscess!  (Told you so!)  I was sent in for emergency surgery, which went well.  The next day (the second Sunday in December), I got an extremely high fever:  I had gone septic.  I was immediately given two different IVs with 5 different antibiotics going into me until they could figure out what bacteria was behind the sepsis (it turned out to be e. coli.).  This was the first time that I had to pump-and-dump, and Lizzy began using some of the milk we had frozen.  It was heartbreaking to watch that "liquid gold" go down the sink.  But that many antibiotics at once was just too much, the pediatrician said.

Phillip and I called our moms, and they came down from Denver and Washington to help take care of Lizzy and me when I was released from the hospital.  I was still pretty weak for a while afterwards.  Again, though, I kept pumping.  I made sure to pump my normal 5 times per day (although some days in the hospital I only did 4).  My supply dropped a ton because my health was poor and I wasn't eating much.

Grandma Lindsey
Grandma Lindsey, Aunt Annie, and Aunt Rachel
 Grammy Celeste and Zoe


Slowly I was able to build my supply back up to 35-40 oz per day.  I brought it up by eating more, drinking at least a gallon of water per day (literally), and by power pumping a lot.  This is where you pump a normal session (in my case, 30 minutes).  Then I stop for 10 minutes, then pump for 10 minutes again, then stop and start, and then stop and start (so I'll finish an hour after I finish a regular pump, actually pumping for a total of 30 extra minutes).

Phillip and I celebrated our two year anniversary on December 17, just a few days after I got out of the hospital after the sepsis.



We had a bit of a break for Christmas.  Lizzy got to see Santa, and she had a blast with opening her presents and wearing her pretty Christmas dress again.






About two weeks after the sepsis, I was still on antibiotics and prednisone, and the thrush was really coming back at this point.  I was taking diflucan off and on per doctor orders, and he had me postpone my Remicade infusion.  The problem was that the prednisone was feeding the thrush more quickly than the diflucan could kill it.  My PCP felt like some of my symptoms were related to a mental illness and insisted I try an anti-anxiety medication.  Since I don't have anxiety at all, I had a bad reaction to it and was hospitalized for a couple of days.  This was at the beginning of January.  At this point, I fired my PCP- it was the second time he had misdiagnosed me and I landed in the hospital because of it.

As you can imagine, me being gone so often and Lizzy being watched by some ladies in our church, it was all a bit traumatic for her.  She would have night terrors during her naps.  It was so heartbreaking to hear and watch.  I wanted so badly to be able to just stay at home with her all of the time and take care of her.

At times I wanted to try to latch her on - she would sometimes root around my breasts when she was tired or hungry - but with the thrush, I didn't want to pass it on to her.  Instead, she has become my pump buddy and tries to chew on the flanges!



In the middle of January I was three weeks overdue for a Remicade infusion.  I started having awful lower abdominal pain.  I had suspected for about a month that I might have a urinary tract infection (UTI) because I was constantly having to pee, urgently, and then never feel completely empty.  Once again, I ignored it, until this last week the pain suddenly became really bad.  We went to the ER

That same day I was FINALLY able to see my GI again!  I was so excited to see her, I almost cried.  As I told her everything she missed out on by being gone, she got tears in her eyes on my behalf (and Phillip's and  Lizzy's behalf, too).  She said what I had been trying to talk the PCP into:  just do the Remicade infusion to get the Crohn's under control and get off the prednisone, and then we would worry about getting rid of the thrush once and for all.

I had my infusion on Friday, but it really wiped me out this time.  I was exhausted all day Saturday, and then the thrush really went wild.  More so than we anticipated....the pain was so bad, it hurt my breasts to breathe.  They would get shooting, stabbing pains every time I inhaled.  We went to the ER Saturday night (last night) and I was admitted to get IV antifungals.  So here I sit, missing my husband and baby girl so much.  They are perfection and the most wonderful, priceless thing to me.

Lizzy is such a good, happy, well-behaved baby, and I really appreciate that a lot.  She is now 6 months old (and 2 days), and I can't believe how tiny she was compared to how big she is now!
Just a few days old.
 3 months old, laying next to one of her preemie onesies
6 months old!

Finally, I have to say that I absolutely could never had done any of this without the support I have gotten from friends and family.  I have felt your prayers on my behalf.  I am grateful for those who give up their time and other talents to help give us rides to doctor appointments and baby-sit Lizzy.

Throughout all of this, I am most grateful for my incredible Superman of a husband, Phillip.  He is my rock and strength.  I am in awe of how well he has stepped up to the plate in taking care of Lizzy, working, and supporting me.  He amazes me.  I have been so blessed to have him as my husband.  I can't imagine how hard this would be if I had a husband that murmured or complained.  He takes care of Lizzy so well - I don't have any worries about her being with "single" dad.  He is just the most incredible father.











"Camping" on the landing while the ward had a Daddy-Daughter campout 



The two left are Lizzy.  Zoe is Phillip's sister.


If I even mention that I want something, Phillip is all over it.  He is so sweet, kind, tender, and loving.


Tootsie Rolls - one of my favorites and a big pregnancy craving.  He left this for me one morning before going to work.


I can't put into words the depth of how much I love him and am amazed by him.  The words just seem so.....cheap when compared to how I feel in my heart.  I love him.  I love him more than anything and anyone in this world, and I am so grateful that we get to spend eternity together.  I found this poem online and I think it helps a little bit put into words what I want to say.

Amazing man, You
by Riggs
I never thought I'd be where I stand
It was only in dreams where I could hold your hand
I never thought that you'd be my man
I never thought I could, or would, or can

It's the things you do that make me wonder how
How we made it through
How it could be you
To love me...

And as I lie here, sitting in my bed
Listening to you breathe close to my head
I smile, I sing, I thank God you're with me
And pray that it'll last for eternity

You make me feel loved, in so many ways
You make me smile each and every day
You care for me, you listen, you're always here for me
And in return everything you are to me, I wanna be

Thank you for the good times
And even for the bad
Thank you for understanding
Everything I am

I know it's hard sometimes
But you always get me through
It's amazing what love can really do
And it's amazing that it brought me to you



Untitled
How do I begin to tell you how lucky I am
To have you in my life?

I'll start by saying what an honor it is
For me to be your wife. 

You're my best friend in the good times
And my rock in times of sorrow. 

You're the reason for sweet yesterdays
And my promise for tomorrow.

I never thought I could feel this loved
Until I became your wife.

You made this year and every year
The best one of my life.

This was our song we danced to at our wedding.  No amount of time will ever be enough to spend with Phillip.  I hate being away from him, and I love it when we're reunited again in the evenings.  He makes me happier than I ever could have imagined being.


Some fun pictures of us.  Oh goodness, how I love this man!
















16 comments:

  1. Melissa Wilson OwensJanuary 19, 2014 at 9:41 AM

    Wow! You are a very strong woman and your perseverance is so inspiring! It makes my struggles seem so small.

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  2. Do you mind if I share this on my la leche group's page?

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  3. I read this because I had trouble breastfeeding and then Connor developed a milk allergy so he takes formula. Your post was amazing-you've been through so much and I can't imagine. I admire your strength and faith and hope things are only up for you from now on. :)

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  4. Laura Slack AndersonJanuary 19, 2014 at 6:58 PM

    I had to rent one of those heavy duty breast pumps and pump after every feed when Kate was a newborn because a pediatrician had given me AWFUL feeding advice that caused Kate to lose weight and put my milk supply in jeopardy. I only needed to do it for a short time, but that was hard enough. I really admire your strength and courage. Lizzy is very blessed to have you for a mommy. :)

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  5. Thank you for sharing your journey! Lizzy is so blessed to have parents like Phillip and yourself. ♥ You really are a hero for all the sacrifices you made so Lizzy could have the best start to life possible. I wish I could hug you and tell you how amazing you are! God Bless you and your family.

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  6. You are quite possibly the strongest person I know despite your struggles. :) I admire that.

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  7. You're amazing, Tiff. And Phil sounds like an amazing husband. You're blessed to have each other, and Lizzy is lucky she's yours. :) I think of you guys often. Hoping things get easier one day soon.

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  8. Oh, Tiffany…. I am literally at my desk with tears in my eyes reading your story. Just, wow. I cannot thank you enough for sharing it- your strength is so inspiring to others, whether breastfeeding or not! Would you mind if I shared this with the rest of the lactation staff?

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  9. Thanks for your blog post Tiffany. I wept both tears of sadness and gratitude. So blessed to have your sweet family in my life!

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  10. Tiffany, I loved reading these posts. Thank you so much for sharing. I pray the next six months will be easier for you guys than the last six months!

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  11. Katie Thornburgh ChristensenJanuary 20, 2014 at 9:19 PM

    Thanks for sharing your story! You have gone through so many trials in such a short time! You are so strong and resilient! This story will help me get through my "hard" days! I hope so badly that things will start clearing up for you and you can catch a break!

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  12. This was a touching story. You're such a strong woman. Great job! Your little girl is beautiful too. :)

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  13. Tiffany! Sorry you have had to go through all you have. Glad to know Phillip is such a trooper and there for you. Good to hear that you have so much help. Hope all will be well soon. Love and miss you!

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  14. Loved your blog post. It was great to see those cute pictures, and hear of your struggles and triumphs! we love you and miss you and pray for you!

    Aunt Tami

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  15. So sorry you went through that. You are so strong Tiffany Lindsey Thomas!

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