A Tale of Two Preemies

Leanne shares her story of journeying through her own physical problems and then her preemie daughters.  The differences in hospitals dedicated to getting human babies human milk is highlighted in this touching story of struggling to get preemies the milk they so desperately need.  I am honored to be bringing you this guest post and appreciate Leanne sharing her story.  Leanne has a personal blog, No Spelling Required, and she would love for you to come say hi.
I believe that sometimes we, as humans, go against what is or should be possible.  I am a prime example of that.  Genetics has not been kind in my family.  I’ve survived three genetic illnesses that are incurable.  Two being autoimmune.  Silent diseases that no one else can see, but I can always feel.  I was diagnosed with Juvenile Diabetes when I was barely 5 years old.  At the age of 17 I was then diagnosed with Grave’s thyroid disease.  5 years later I had a secondary diagnosis of Fibromyalgia.  It’s been proven that people who suffer from one genetic, autoimmune disorder often suffer from another at some point in their life.  I was also a rare case with the Grave’s Disease because of my young age when it happened.  Most people who get thyroid disease don’t get it until they are into their 40’s and 50’s.    The Diabetes I’ve always been able to deal well with.  The other two illnesses, on the other hand, have wreaked a lot of havoc on my life, making me sick for years on end and also causing problems with my two beautiful girls.
My first had breathing problems due to being born early and having underdeveloped lungs.  She spent about two weeks in the NICU back in ’96 when she was born.  Surprisingly enough, she came out of it with flying colors even through the horrid radiation treatment I received while I was pregnant with her.  Her only mishap being that she had a heart murmur which had resolved itself by the time she was 6 months old.

Breastfeeding with Jordan was short lived.  The hospital at the time had taken total control of her feeding “schedule” and immediately put a bottle into her mouth when she was no longer feeding from her IV alone.  I never even had a chance to latch her on once.  This is the happenings of hospitals bought out by formula companies.  I tried repeatedly to get her to latch on and gave up quickly with lack of proper support and knowledge at the time to do much more to help her become used to breastfeeding.  I pumped for a few weeks afterward and still felt it was useless because of how little I was able to produce at the time.  Our entire breastfeeding relationship had been sabotaged right from the beginning.  I was only 20 years old at the time and did exactly what I thought every mom eventually did anyway and of course started her immediately on formula.  I regret every day that I didn’t have the information I do now.  I would have made sure I succeeded at the one gift I could have given her that was so very important.  
After Jordan was born, I had also decided I didn’t want to ever try for another baby as well.  I felt like I had been through enough with her to have her be my only little star.  In 2006 I knew I was never going to have more children and did something that, at the time, felt very right for me and had breast reduction surgery.  At 5 ft. even and being a DD bra size, it was way too much for me and I wanted to finally be comfortable, therefore I went through it.  For 3 years I was in love with myself all over again and felt great!  Little did I know that last Christmas I had a small gift in the beginning stages of pregnancy starting.  I found out two days before Christmas day that I was pregnant with my second daughter!  I just about went through the roof when we found out.  My first baby was now 13 years old!  I had not expected this ever.  Fate had different plans for me than to be only a mother of one though.
After the initial shock wore off, I spent many of my months of pregnancy doing a lot of homework, joining online mommy groups, and studying up on how I was going to attempt breastfeeding again after my reduction.  I dove into this feet first and learned how much things had changed.   I had the internet this time around to guide me and boy did I ever utilize this ability!  The thought of donor milk and milk banks had crossed my mind after learning about them, in case I couldn’t produce enough.  I expected not to produce enough, but was adamant to make sure I was able to at least breastfeed a little this time around. Little did I know at the time how expensive buying breast milk was!  
Sam and I ended up have little Zoe almost 7 weeks early because of my illnesses.  Once again, I had another baby in the NICU.  Only this time with many more problems and a much more intense situation.  Zoe was born with thyroid issues as well.  She was another very rare case.  Something that almost NEVER happens to babies of women with thyroid disease did indeed happen to her and I.  The antibodies that I still carry in my body, even after treatment, had crossed over the placenta and started attacking her thyroid gland.  This is only supposed to happen with a woman who is actively hyperthyroid while being pregnant.  I was not.  My thyroid function has actually gone deeply the opposite way.  I can no longer produce thyroid hormone at all on my own due to I-131 radiation treatment I had received during my first pregnancy.  The case of this happening runs at only a 2% chance that the baby will be affected.  That would mean about 1 in 25,000 babies would be born with Neonatal Thyrotoxicosis like Zoe was born with.  The fact I was no longer hyper with my thyroid function makes this almost an anomaly type of situation as well and that much more of a rare case!

Zoe ended up spending a little over a month in the hospital to take care of these issues with her.  My heart just aches for her and what she went through prior to being born and after as well.  I remember having Thyroid Storm myself, and feeling like I was having a heart attack during the entire thing.  The anxiety it creates, the rapid heart rate, palpitations, loss of hair, and weight, all things I remember all too well.  To have to endure this when not even born yet, and have it affect you so badly your heart stops at birth as well as your breathing, it is so painful to my heart to know she had to go through this.  It is painful to never know how a normal birth would have been for her or my oldest either.  
The one wonderful thing about the hospital we had Zoe in was the milk banking they did.  Huge amounts of stored breast milk donated by local mothers for all these NICU babies!  I was petrified that I’d again be doomed to have to deal with formula pushers, especially after my previous experience.  This time I came in knowing exactly what I didn’t want though!  I knew I wanted to breastfeed her exclusively for as long as I possibly could.  I knew I’d probably have to supplement, but I wanted to her to have MY milk first and foremost!  The hospital agreed!  I was so shocked when the doctor started trying to talk me into signing the consent form to have donated milk given to her.  I think I shocked him as well by grabbing his pen and signing the form before he even had a chance to finish what he wanted to tell me.  The lactation consultants were also amazing.  They knew the hard road that Zoe and I were facing with trying to produce enough milk after reduction.  They did everything they could to keep me going with pumping for her while she was in the NICU and when she was finally able to start latching on, they continued with the amazement.  Everything under the sun was tried to make this work for her and I including giving me my own SNS to supplement her with.  The consultants, nurses, and doctors were all so diligent in helping us succeed in this.  Zoe exclusively breastfed for a full month as well as she was on the donor milk.  I will be thankful every day for having that hospital staff during her traumatic birth just for the fact that they were so supportive of all our needs and wants.

I eventually gave them the go ahead to start bottle feeding her my pumped milk as well when I could not be there for all of her feedings.  As much as we mothers would love to move into the NICU with our babies, that’s just not reality and there were times I had to go home too.  Nipple confusion amongst young babies happens very quickly.  It did indeed happen again in our case as well.  I’m OK with this though.  I had a choice to make, either feed my baby so she can go home with me finally, or salvage a breastfeeding relationship while she continues to be fed through her NG tube.  You can imagine what my choice was immediately.  I did choose the easier way out.  I wanted her to be home with us, not stuck in the hospital for a longer period of time.  I will not regret it.  She did so well breastfeeding even only for the 5 to 10 minutes intervals that she did in her first month.  For such a little baby, that is hard work!  Born at 4 lbs. 9 oz. and weighing just over 5 lbs. when she was finally able to go home, I was so proud of her for trying so hard.
I continued to pump when I got her home.  Eventually it became too frustrating for me to pump like crazy and only get, on average, 10 ml for both sides.  I was taking Reglan from the doctors, Fenugreek, and eating oatmeal like crazy.  I would produce the milk and become engorged like a mad woman, but never be able to get anything more than tiny bits at a time.  Throughout a 24 hour period I’d pump just barely enough to fill a full 4 oz. bottle.  It was too stressful at the time to continue to do this.  I did give up completely.  However,  I was then on the search for a donor.  Two weeks ago I finally found the lady for my little girl!  A woman who had donated before to an adoptive mom and is willing to donate to Zoe all the extra that she gets.  She fills her freezer up, and I come when she calls and take it off her hands.  It’s an amazing, beautiful gift that this lady has give Zoe and I and I could never be thankful enough to find someone like her to help us.  It takes someone so very special to be able to part with something so personal such as breast milk.  I am completely amazed every time I meed such a selfless person in my life such as this lady.  She gives such a precious gift to my little girl of her own free will.  For that, I am just plain thankful, again amazed, and completely honored.
Through all of this, and with the help of everyone who has in the past few months given so much to us, we are coming out on top.  The antibodies of mine that invaded Zoe’s tiny little body are finally starting to die off.  Hopefully by the time she is 6 months old they will completely die.  Until then, we will continue to care for her special needs and delicate situation.  The amazing people who have joined us in keeping up with what’s best for her will never ever be forgotten, even when I grow old, I will always remember.  Zoe may not, but I will always be forever thankful!

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Comments

  1. Oh, how amazing! Thank you for sharing your beautiful story!

  2. What an amazing story! You have done so much to ensure your daughter's best health. I am also touched by the generosity of your milk donor. My, how times have changed. This is such a wonderful post for Prematurity Awareness Month!

  3. Jackie Cotton says:

    This story brings tears to my eyes, being a premie mother myself. Thoughout my pregnancy I felt as though something was wrong. Doctors only advice was it was my first pregnancy, I was miserable. Needless to say I gave birth a month and a half early. My instincts were right, I was septic. My body wasnt getting rid of her waste properly, it was truley a miracle we both lived. She came out not breathing at all, they forced a powder down her throat, she finally started to scream. She was born with full blown pnemonia, various skin problems, and because of sitting in her own waste for so long no one knew what else would come up. Doctors told me it would be months till she was healthy enough to come home. I started pumping, and demanded they feed her my milk. A week later, she came home. Amazing the doctors and myself. I shared my story to share another. A friend of mine, while i was in the the hospital, gave birth at 25 weeks. Her son was only 1lb, with 2 brain hemorrages, heart problems and very underdeveloped lungs. Even though she was haveing a worse time than I, she wrote me a story. This story gave me answers to the "why" questions I think every mother ask when something is wrong. To a premie mother, from a premie mother. P.S: (Her son is doing great, and a has made a quick recovery) : Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint … give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness." The angel gasps, "Selfishness?! Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice.

  4. Leanne, I've seen you through lots, but this was the biggest and by far the most important. I love you and Miss Zoe and I'm so proud at how you've handled all of this. You've been so strong for Zoe and instead of asking "why me?" you've just dug in and done whatever had to be done to make sure you brought your precious baby home safe and sound and healthy. I am so proud to be a member of Team Zoe! 🙂

  5. Preemie Mami says:

    A friend of mine told me about you. I'm so happy you stuck to your guns the second time around. I had problems with my milk coming in and I was ready to give up when it finally did. I never did make enough for both girls, but at least they got breast milk for the first 3 months. It's the best!! Following you now!

    Preemie Mami
    preemiesandme.blogspot.com

  6. I have GD. I saw this story on a blog by a lady named Christy–thanks Christy! Wow…Thanks for sharing. God bless.

  7. Awesome to read and understand why some mothers end up bottle feeding. It's important for me, a young first time mother who's super zealous about breastfeeding, to hear this story. It's so easy to judge someone for not trying hard enough or not wanting to breastfeed their baby when I see them out in public w/ bottles. But I don't know the reasons why some women choose to, and some like you don't have a choice! Thank you for sharing 🙂 This helped me grow as a person!

  8. Wow, your story brought tears to my eyes. Im a brand new mum and my baby was born preemie. At 26weeks i went into labor and was 3cm dialated before they stopped it, unfortunately i was too far for them to put in a stitch and i ended up on bedrest. I spent 2weeks holding onto him and in that time i had a corner of my placenta broken off and my membranes were funneling out through my vagina. I gave birth at 28.5weeks and we’ve been in nicu for 7weeks today, hopefully looking at going home soon. Being that early hes been exclusively tube fed till a week ago anf so ive been expressing. Its really hard and my milk started to dwindle once my hormones left he was almost to the point of needing formula before the lactation consultant had me go and get a script for domperidone. It worked brilliantly but once i finished the course it was dramatically decresing. Ive been getting 10-60ml per express and im trying everything to have enough for him. Hes had some formula over the last few days as his demand has outstripped my supply. But as hes breastfeeding 3 times a day now he gets his fill and i still express some afterwards. Theres a big difference between expressing and. Breastfeeding your child. its been a long hard road but im not giving up!!!