Overcoming Breastfeeding Challenges...Against All Odds.

[asherraifsmom]

I hear all the time of people switching to formula because of hurdles of various kinds, and then they said "I just couldn't do it. I'm so glad you could breastfeed, but my body just wasn't made for it"

this breaks my heart, because knowledge (and support) is POWER.

I am a huge breastfeeding advocate, for too many reasons to list in this journal entry. In addition to the indescribable bond it causes between a mother and baby that you cannot understand until you breastfeed, the breastmilk itself is so chock-full of goodies that if you buy it from a milk bank it costs LOTS more than formula, and cancer patients are paying top dollar for it because it is being shown to cure...yes CURE cancer. As in, there are ingredients in breastmilk that have caused cancer cells to commit suicide in every clinical trial they've tried it on, no matter what type of cancer cell it is. Breastfeeding lowers obesity rates (or rather, babies on formula are more likely to become obese as adults), increases immunity, the list could go on all day.

But few people who gave up on breastfeeding would really listen to me because with my first child, while i nursed him successfully for 2 years, I didn't really encounter too many major trials. Sure, nursing hurt like hell for the first week...my breasts were not used to nursing round the clock. But that went away after a week and Motrin was my saviour for a while. And getting through teething with a baby had its challenges (I was only bitten twice...when baby realizes if they bite you they wont get to eat anymore that session, they quit real quick-like). I even nursed during pregnancy, which was eventually the reason Asher self-weaned. He had no use for it at 22 months anymore once my milk dried up (by the way, 2 years is the recommended minimum for breastfeeding according to the World Health Organization, and most babies around the world nurse longer than that), though he nursed once or twice for just a suck or two once Audrey was born; it was more for the attention and he quickly got over that. But all in all, nursing was easy for me with my son. My breasts were FULL of milk; i could pump easily, and despite a cesarean and delayed nursing because of it, my son had a perfect latch from day one. In fact, lactation consultants in the hospital asked me how many kids I had at home (he was my first) because I looked like an old pro at breastfeeding.

Because it was so easy for me, i've always admired people who've overcome huge odds in breastfeeding. It shows that you can still successfully nurse your baby even if it doesnt come as easily as it did to me and my son. A friend of mine here on Cafemom successfully breastfed 2 kids who were both born very premature and were in NICU for many weeks. She had to pump exclusively at first and feed them by bottle (and NG tube? not sure...). I'll leave her name off for her privacy but perhaps she'll comment on here and share her story if she wants to but I'll leave that up to her.

But I can gladly say that I am now succeeding with breastfeeding with my 2nd child, Audrey, despite extreme challenges. Our nursing relationship has been FAR from easy.

Audrey had the best possible start to breastfeeding. She was born drug free with zero interventions, at home, with no complications (drugs, and cesareans can impair a baby's ability to latch well in the beginning). Yet, though she was healthy (or so we thought), she had a hard time latching properly. She was a colicky baby in general, and the air she swallowed from an improper latch only made that worse. She was a lazy nurser. But I kept at it. I never used a bottle, because I knew that with her already having a difficult time, that would sabotage our nursing efforts. There were times she was so colicky I could not get her to nurse (or take a bottle!) for twelve hours at a time. At the time both her doctor and I thought it was just extreme colic or perhaps reflux. She would.not.eat. These spells never lasted too long at once though so she didn't lose weight but it was still scary and i had to pump regularly to keep my supply up when she would not eat.

She did do better with the colic for a while when I put her on a probiotic, but after a few weeks the colic started back, though not as bad.

Then my life turned into a living hell. My daughter started having spasms...which, to make a long story short, after lots of tests and a week in the Children's Hospital, my daughter was diagnosed with Tuberous Sclerosis Complex with Infantile Spasms (the most damaging form of seizure a baby can have, that leads to brain damage). It is a DEVASTATING diagnosis. It is caused by a dominant genetic mutation which leads to benign tumors in all areas of the body. The tumors are not harmful in and of themselves, but they can cause damage when they get in the way. Tumors in the brain interrupt electric activity leading to seizures, tumors in the eyes cause blindness, tumors in the heart can block blood flow and cause cardiac arrest, especially in newborns. Almost all babies with this end up with severe to catastrophic mental retardation. I saw the MRI; her brain is full of tumors, and she has a tumor on her heart as well.

We were having challenges anyway from birth on with nursing, from, what I now know, was caused by tumors in her brain....but it got much harder when she was hospitalized. Being given that diagnosis, seeing my baby put through a bettery of tests, hooked up to EEG's, watching her scream as they poked her numerous times to draw blood, being scared of how well she would respond to the anaesthesia when they sedated her to do an MRI, having people int he room at all hours of the day and night, along with a roommate...the most frightening thing happened to me, almost overnight.

My milk dried up. Almost completely, from the stress. I could not get a single ounce out of the pump. And,. for those that don't know, how much you get with a pump is NOT indicative of your milk supply. sometimes your breasts will not respond to a pump where they will respond to your child. but my child was not getting anything either. If i pulled on my nipple, nothing, not a drop would come out, my daughter was hungry, screaming nonstop, and not having wet diapers (the only true indication of how much a baby is getting to eat). I was forced to feed her her first bottle ever of formula. Something I swore i'd NEVER do. Never did I think that my body that had already nursed her brother for 2 years would run out of milk. In fact,. when Audrey was born I had signed up for an account at MilkShare.com, an organization that connects donating mothers with mothers in need of breastmilk for their infants, so their babies can receive the nourishing healing of breastmilk when their mothers cannot supply it, without having to use formula, and withotu having to PAY an arm and a leg like you do with breastmilk banks. Since I could produce so much milk, I intended to find a mother to donate my milk to, the excess that Audrey did not need, to help a baby out there who needed it. And here I was, in Audrey's hospital room, in NEED of milk. I found several friends and people I knew online who offered to pump and donate to me, to whom I am eternally grateful. Some were online friends, some were people I hadn't spoken to since college who had read Audrey's story on facebook and felt moved to offer their breastmilk for my daughter.

I should add here, that while in the hospital, Audrey was started on ACTH, a steroid, to help stop her seizures before they did any more damage. She is still on ACTH but is about to start weaning off of it slowly. Steroids impair one's immune system, and I was told she could easily die from a diaper rash, a paper cut, the common cold, while on ACTH. All the more important she be on breastmilk---her own immune system was temporarily shot, during cold and flu season, I might add. She needed more than ever to rely on the immunity that breastmilk alone can provide.

In the meantime, while i awaited breastmilk donations--many were not already donating so they had to up their supply to get enough to mail--I continued to work at nursing my baby. It was not easy, and at times I cried, and so did she. It was hard for her to latch on. Partially because of the TSC, partially because at times she was heavily sedated on loading doses of phenobarbital, and partially because my supply was all but gone. But we kept at it. I nursed her when she'd let me, even if there was no milk, and when she wouldn't, I pumped. I started downing tons of Mother's Milk Tea (containing galactogogues: herbs that increase milk supply). A few days she had maybe only an ounce of breastmilk, and the rest were formula bottles. I began to notice that for some reason, she nursed more easily, with less fuss, in her sleep, so i began laying her beside me on my cot in her hospital bed and letting her suckle throughout the night....with her attached to 4 leads to check her vitals, an IV, and at times 25 other cords for a 24 hour EEG. Slowly, as if by some miracle, my milk supply began to return. But she would only nurse at night. By the time we got to go home, a week later, she was reverse cycled (nursing all night, not eating during the day). Slowly but surely she adjusted to her medications and I was able to get her back to nursing during the day more than at night. And I am so happy to say that I went from having no milk and feeding her formula exclusively to nursing her again exclusively before my donors even had a chance to send me any milk.

I also wanted to mention that Audrey, while in the hospital, had a roommate. A beautiful little girl who was born premature, in NICU, discharged, then upon arriving home contracted RSV and stopped breathing and was readmitted to NICU. Her RSV was gone by the time we shared a room with her, but she was still having breathing difficulties. And, I thought I should let you know that throughout all that, her mother pumped and fed her breastmilk.That little girl continued to grow and thrive, and after a month in the hospital for the second time in her two months of life, at 7 lbs, she got to go home. :-)

There are only 2 instances I can think of where a mother cannot breastfeed her baby at all: 1) a double mastectomy, or 2) if she is on strong medications that can pass through breastmilk, and the mother cannot be put on another safer medication or stop the medication (for instance, some antidepressants are safe for breastfeeding while others are not). Even women with hypoplastic breasts (too little breast tissue/milk glands) can usually produce SOME milk though they will have to supplement with donated breastmilk or formula.

Babies that have developed an incorrect latch due to being tongue tied, women with flat/inverted nipples, babies given a bottle too early, mothers who've had surgery, mothers who've gone back to work early....I know stories of women in all of these situations succeeding at breastfeeding, despite seemingly insurmountable odds.

However, I also know of women who wanted so badly to breastfeed, but ended up switching to formula when I know their situations well and know for a fact they could have succeeded at breastfeeding if only they had been given better support and information, yet, because of that lack of support and information they were left feeling that their bodies were broken and simply "could not" produce enough milk to feed their babies.

I write my story not to knock on women who formula feed, for whatever reason, but to share with women out there, that in almost EVERY situation, no matter your struggle, you were made with those breasts for a reason. And your baby deserves the very best, which I am sure you would agree with. Where there is a will, there is a way. find a certified lactation consultant; ask a breastfeeding friend; do whatever you have to do. because it truly is that important.

P.S.- I do not know that our breastfeeding trials are over. Thankfully, even miraculously, Audrey continues to stump the doctors at how well she is doing with her condition, but we do not know what tomorrow holds. What I do know is that my resolve is even stronger now to continue to nurse her, even if she gets so sick that at some point she can only receive breastmilk through NG tube, God forbid.

You can follow Audrey's progress, if you are interested, at www.caringbridge.org/visit/audreylittle, where her entire journey with TS has been documented, from her first seizure over a month ago, til now.

*UPDATE*- August 3rd, 2010. Audrey has been through a lot, has had her seizures return, has switched several medications, some of which cause decreased appetite. She continues to nurse, almost exclusively. We are just now starting solids with her. She has slimmed down a lot since getting off the steroids but is still obviously "well fed" from nursing. She is 28 inches long and 20 pounds, at 10 months old. I plan to continue to nurse her for as long as she wants.

*UPDATE2* January 2nd 2012- Audrey is now 2 years and 3 months and still nursing happily. We are now looking at brain surgery for her, and I am more glad than ever that she is still nursing, as the immune benefits for her will be so important after 3 stage brain surgery. I will probably nightwean her once she has fully recovered from surgery...probably midway through this year. I won't force wean her but i will probably cut back some once she is through surgery too. I believe nursing is a relationship. Because it is a relationship, I acknowledge her desire to continue to nurse, and will not throw her desires out the window, but I also acknowledge that while I don't want to be totally done nursing her, I'd be happy with just once or twice a day. So we will see how it goes. I am so glad we've made it this far. Her brother self weaned at 22 months so this is all new territory for me!

[yakamoz]

Feb. 17, 2010 at 8:45 AM

You are lovely, mama.  Simply lovely.  Thank you for sharing your struggle with us--it is so very inspiring.  Best wishes to you and your little girl.  She is lucky to have a mama like you!

[abbysmommy71707]

Feb. 17, 2010 at 10:14 AM

Heather, I am so sorry for little Audrey and you and this journey the Lord has you on right now. it must be so tough, i can't even imagine. I am so thankful for your determination in doing what is best for your baby. I will be praying for all of you, and that God's glory is shown through you and Trevor, and most of all through Audrey.

I also get sad when i hear som emothers stories, and wish myself or someone else was able to offer more info and support so they could succeed.

I had to stop nursing Toby about 2 weeks ago, because of medication that i need to be on. I did tons of research, and was devastated that there was no way i could nurse with the medicine i needed to be on.  Like you siad that is only one of a few reasons why moms cannot BF.....

We will be praying for you. May I put you on our church's prayer chain??

[asherraifsmom]

Feb. 17, 2010 at 10:45 AM

yes ma'am most definitely! thank you :) I am so sorry you had to stop breastfeeding :-(.

(Original Poster)

[photosbyheather]

Feb. 18, 2010 at 6:06 AM I'd like to talk to your friend that was in NICU with a preemie. My girls were born 34wks. Even though I pump now I'm teaching the breast and its difficult.

[vances_mom]

Feb. 18, 2010 at 9:27 AM I have 1 hypoplastic breast and one breast that was reduced (to try and make them more even). I wasn't able to bf DS for longer than 3 months because I had no information or support. I am so proud to say that DD is 8m/o and still BF! We had to use a Lact-aid nursing system to supplement with pumped milk and formula for the first 5 months because my breasts just could not produce enough on their own. We were doing 14-16 nursing sessions a day and her diaper count was still not up where it should have been. The Lact-aid was such a life saver! I never once gave her a bottle. All supplimentation was done through the Lact-aid. It was HARD, but Harper is so worth it!

[boizmom]

Feb. 18, 2010 at 10:21 AM

Thank you for sharing your story!  My thoughts and prayers are with you and your Daughter!

Before having my third son, I breast fed my older two sons.  Unfortunately I didn't know that I could get help when I was engorged the entire time I breast fed my oldest or when he went on a nursing strike at 6 months old and I thought he was self-weaning.  Breast feeding my second son went much smoother, I did not have the overabundance of supply like I did the first time around.  However he had GERD and I was strong armed by the pediatrician to put him on formula.  Unknown to her though I continued to breast feed every other feeding and did so until he was 10 months old.

When the baby was born I thought I would have no issues breast feeding.  But when it got painful to nurse him and my supply started to tank after he was hospitalized, I had to find help.  My lacation consultant is wonderful.  She helped me get my supply back up and helped me figure out why it hurt so bad to nurse my son.  He has a high pallet and is tongue-tied which creates an issue with latching.  We've managed to make breast feeding work without getting his tongue clipped.  Our new pediatrician doesn't want to clip it unless it becomes a real issue later on with his speech.  As of right now in his 5 short weeks of life, we've been through so much already, he's a happy little nurser and going strong.

[AidensMommy608]

Feb. 18, 2010 at 10:45 AM

What a beautiful story!!  I was dead-set on nursing my son and every problem in the book got thrown our way and I still went through it until he self-weaned around 1 year.  He had thrush numerous times, had latching problems, jaundice, I went back work early and through all that, I never faltered and I will never regret it.  Thoughts and prayers with your family and your little girl!

[BrensMomma]

Feb. 18, 2010 at 12:46 PM

Thank you for sharing your story. I was young when I had my DS and just did what the nurses said to do. My DS had severe jaundice and I was told I was not supplying him with enough milk to help his jaundice subside so they told me to supplement with formula. My DS did not want my breast after he was feed out of a bottle. I tried for 2 weeks. I would try him and then pump and try again. I was told I was not producing enough, and that I was "starving" him! I was so upset to think I was "starving" my baby. So I switched. Thankfully with my baby due in May I have much support to breastfeed. I really wanted to with both my babies. This post was great inspiration for me to fight through any struggles I may have. I have also done a lot of research and know I will have plenty of help. Thank you again for sharing your story. I can't imagine what your going through. Prayers go out to you and your family. Specials prayers for Audrey!

[Pieta0227]

Feb. 18, 2010 at 12:55 PM

I commend you mama!  Your baby is one blessed little girl to have such a dedicated mom!

[Pieta0227]

Feb. 18, 2010 at 1:23 PM

I just read your caring bridge site, the last few entries in the journal.  What a tough road you are on!  I will keep you and your family in my prayers.  I'm going to add your CB site to my list of "subscriptions" so I can read what is going on with little Audrey and pray for specific needs. 

Audrey is a beautiful baby!