Monday, February 28, 2011

Leashing Your Kids

Let me preface this post with a controversial statement:  I can't stand animals.  I have no desire to be a pet owner whatsoever, much to the dismay of all three of my girls.  Especially Darcy.  I've never seen a child love animals more than she does.  Now, don't get me wrong, I like going to the zoo just as much as the next mom.  I just don't want to own animals.  I have four children.  That's enough responsibility for me.  I can't even keep a plant alive.

A few weeks back, I posed the question on my Banned From Baby Showers Facebook page, what topics would you like to see on the blog? Several of you asked what I thought of leashing your kids.

So, what is the politically correct response to this question, especially from an advocate of Attachment Parenting?  I'd have to say, surely it is to not leash your child, like you would your dog, right? 

I've written a bit about my life here and I think you've gotten the picture that I was a pretty rowdy teenager.  Definitely a rule breaker.  Apparently I was the same as a toddler.  When I was 18 months old, my dad kept me on a leash every time we went anywhere.  He gave it to me as a gift when I had my own children, only partially joking.

The only time any of my children were leashed was when Vena (#2) was about 18 months old.  We were at "Breakfast on the Plaza" for a 4th of July celebration in my hometown of Santa Fe, NM.  My dad insisted that I put her on my old leash because there were so many people.  I absolutely refused and told him that if he wanted her on a leash, he was going to have to do it.  He got her harnessed up and it lasted, maybe, 5 minutes.  She screamed her head off!  (I thoroughly enjoyed it.)  With everyone staring, he agreed that maybe it wasn't the best idea.  He said that if only I'd started her off that way as soon as she started walking, it would have worked.  Yes, this was the parenting I was raised on.

I have no doubt that my dad was just concerned for Vena's safety, and mine when I was a toddler.   It is a scary thing for any parent to have a small child in a large crowd.  It only takes a split second to lose them. 

As you can imagine, I carried all my babies in a sling and rarely even used a stroller.  When they got older and we were on all-day outings, I would definitely take a stroller too.  But sometimes, let's face it, the kid wants out -- and needs out -- to run around, to stretch their legs.  Obviously, the parents have to watch them every single second and it can be a stressful event.

All kids are so different too.  When my son was about 2, we lost him in a Super Target in Orem, UT.  OK, wait -- David lost him -- I was in a dressing room.  He let him out of the cart "for just a second," and he was gone.  One thing about Daymon, when his feet hit the ground, he was running!  For 10 minutes we had no idea where our son was.  He had made it to the very back of the store when a very nice lady picked him up.  Yadda, yadda, yadda, David learned his lesson!

I read a funny story one time about a mom who was in the front yard with all the neighborhood moms and kids.  Her 2 year old boy took off down the road.  She had a baby on her hip and another one on the way.  She was wearing "the cutest clogs" and had no idea how she was going to chase her son down the road.  She got a great idea and yelled as loud as she could "ETHAN!  ICE!  CREAM!"  Sometimes we have to be resourceful.  Each child is so different and cannot be treated the same as the next.

I think it's really easy to judge a parent that has their child on a leash -- I know I've done it -- but in the end, we don't know the parent's frame of mind at that point.  (Maybe they've lost a child before, maybe she's pregnant and not feeling well, maybe the kid hates the stroller and screams in it, etc.)  There could be a million reasons why they made the decision to use a leash.  Ultimately, if the child is happy (not screaming like Vena was), mom or dad is probably happy, everyone is safe.  I don't really care.  I'd rather see a happy toddler walking around on a leash than a parent trying to keep a child in a stroller, cramming a bottle in his mouth trying to keep him quiet. We've all witnessed that, I'm sure.

One of my former students was at the zoo recently and she sent me a picture of a father holding up a stroller with the child in it to see the animals.  Heaven forbid he should take the child out and actually hold him up to see.  They obviously wanted the child to stay in the stroller.  A leash would have been so much better and have forced the parents to have more interaction with their child.  

So, I don't think this is so cut and dry.  It must offend us because we see it the same way as leashing a dog.  But why do people leash their dogs?  So they don't run away.  It's all the same.  People love their dogs.  People love their children.  They want them to have the freedom to walk, but they also want them to be kept safe.  Besides, the leashes I've seen lately are so cute, like animal backpacks!  Mine was just a rope, like a hanging.

What I'd really like at this point in my life is a leash for my 14-year-old son.  That's another story for another day.

Monday, February 21, 2011

Vaginal Tearing -- What You Should Know For Your Next Birth

When couples show up for the first night of childbirth classes, they want to know 3 things:  1) When do we go to the hospital?  2) What if my water breaks?, and 3) My mom says an episiotomy is better than tearing.  I don't want either.  Of course, I make them sit through 4 weeks of classes before we get to "the good stuff."  By the time we get there, they have a really good foundation.  For this post, we'll concentrate on item number 3.  (Yes, I've been inspired by my good friend, Sarah Clark, aka Mama Birth, with the humorous photos.)

Obviously, the tearing of the vagina as the baby is crowing does not sound enjoyable.  There is a lot of fear surrounding the possibility of this occurring.  The good news and bad news is all rolled into one sentence concerning this fear:  You'll think you tore, even if you didn't.  Some women feel better after learning this and some don't.  The skin typically burns (thus, the "ring of fire") as it stretches over the baby's head.  Once it is stretched, the skin is pretty numb, but before this, you will likely think that you tore.   I thought that with every baby and I've never torn. 

So what can you do to prevent tearing?

I live in the Fort Worth area now, but I lived in Albuquerque before moving here.  NM has almost the lowest  c-section rate in the country.  No coincidence that one in every three births is attended by a midwife.  When I taught Bradley® classes in Albuquerque, I had a number of students participate in a study that the midwives were conducting at UNMH (University of New Mexico Hospital).  The study was trying to find out what method at the time of birth was the most effective at protecting the perineum.  If you chose to participate, you were given one of three envelopes at the time of birth with one of the following options written on it:  1.) Do nothing as the baby emerges; 2.) Use perineal massage; or 3.) Use warm compresses on the perineum as the woman is pushing.

I always like to share a funny story in class from my third -- and hardest -- birth.  As I was pushing, my midwife was applying pressure to the perineum. She asked me if I wanted her to keep doing that -- actually, her exact words were, "Do you feel like your butt is going to blow out?"  Yes, that's exactly how I feel, and yes, please keep doing that!  Emotionally and physically I felt like I had something to push against.  I think women are always surprised at how hard they are pushing.  I have always been a big fan of warm compresses or support of the perineum, much more so than perineal massage.  I must admit, I thought warm compresses would be the big winner of the UNMH study.

I have someone in my current class that recently looked up the study.  Yes, I'm embarrassed to admit that I never looked it up to see the results.  Let me give you a few more details about the study before the exciting results.

Data was collected from 1211 births over a 3 year period.  There were several bits of data collected including maternal age, parity, race, years completed of education, body mass index, weight gain in pregnancy, and use of antepartum perineal massage (during the pregnancy).  Variables included use of pitocin and epidural, length of 2nd stage, style of pushing (coached or self-paced without prolonged breath-holding), position of the baby (compound presentation or posterior), and complications or unexpected birth events.

The most interesting thing about this entire study is the probably the c-section rate:  Of 1211 births, 98%, or 1187 had a spontaneous vaginal birth.  Only 25 of these women -- 2% -- had an operative delivery!  Nine cesareans occurred in late labor, and 16 women had vaginal operative births (3 by forceps and 13 by vacuum).  ONLY 9 CESAREANS IN 1211 BIRTHS WITH THE MIDWIVES! 

Take a minute to recover from that and let's move on.  There are a number of other items I found interesting within the study.  The first one is that 13% of the women that were receiving perineal massage requested that the midwife "stop."  With the other two methods, it was 2.2% (warm compresses) and 1.7% (hands off).  Again, I'm not a fan of perineal massage (I think I've said that a time or two!) and neither were 54 of the 400 women who drew this envelope.

*Less than 40% of the women in each group had an epidural and the use of pitocin was between 32-36%. 

*At least 77% from each group gave birth sitting upright.  About 10% were flat on their backs with stirrups.  Less than 1% in each group gave birth in a squatting, hands and knees, or standing position.

*The vast majority (each group over 77%) did not participate in Valsalva pushing (holding breath excessively long causing capillaries to burst, etc.) and between 30-34% of the mothers delivered the head between contractions.

*Approximately 94% of the babies was born in an occiput anterior position, while about 10% were born with a compound presentation (hand by the baby's head).

Other things that should be noted:  40% of the participants were first-time mothers.  There was a wide range of ethnic diversity as well.

Some interestingly low numbers include:

*92 births with nuchal cord
*42 births had meconium
*34 with extreme fetal heart rate abnormalities
*10 with postpartum hemorrhage
*9 with shoulder dystocia (.7%)  -- Side note -- I hear this all the time for a reason for c-section or induction.  True shoulder dystocia is rare!
*2 with manual removal of placenta

The Results:

*Only 10 episiotomies were performed, due to severe fetal heart rate abnormalities.

*23% off all women experienced no trauma at all to the genital tract, regardless of which envelope they drew.

*20% had major trauma, defined as 2nd, 3rd, or 4th degree tearing.

*57% had minor trauma, defined as 1st degree tearing, affecting the external genitalia, or the outer vagina.

Other studies have defined an intact genital tract as "no trauma, or minor and unsutured trauma."  If this definition was applied to this study, the midwives' rate of "intact" would be a whopping 73%!  In all fairness, too, these 12 midwives who were involved in this study already had a high degree of expertise at minimizing trauma in vaginal birth.  I met with a couple of them when I was teaching in Albuquerque and was extremely impressed.  In fact, the obstetric culture at UNM teaching hospital is patient, calm and controlled, and emphasizes slow expulsion of the baby. 

Ultimately, there were 2 care measures that were associated with a lower risk of genital tract trauma.  1.) "A sitting position allows the mother greater comfort and autonomy at delivery.  It allows face-to-face proximity and direct visual contact between the mother and midwife."  2.) "Delivery of the head between contractions requires communication, synchrony, and shared responsibility for a slow and gentle expulsion of the infant."  


So ladies, be patient at the time of birth.  Ban the cheerleaders!  Don't let anyone count to 10 for you like they do in the movies.  Just let the baby come.

As for the 3 methods?  It's really up to the woman and her midwife.  The results were all similar in findings.  If you'd like to read more about the study, you can find it here.



Saturday, February 19, 2011

An Oldie But Goodie: Sarah's Amazing VBAC



I have contemplated how I want to present this for weeks. Sarah herself joked about how much she had to say to about her very fast labor! In the end, I've decided, who am I to edit this amazing woman's birth story? I thoroughly enjoyed reading it, and I think you will too.

Why is this VBAC so special? I have chills as I write that question. About a year ago, I posted a picture of Sarah right after her c-section that took place 2 years ago. Without going through all the details, it was a nightmare. They had taken my class by DVD, and while I had met with Sarah a number of times, I had never met her husband, Kip, until that day on the phone. We spoke for about 30 minutes and it broke my heart. I could feel the love that he has for Sarah, and he had felt so helpless as their birth spiraled out of control, ending in a c-section. If you would like to read what she wrote about her previous experience, you can find it at the previous post titled "Ah, the Glorious C-Section."



Sarah and Kip, like so many couples, struggled with depression over the event and went through an intense healing process. Breastfeeding was such a struggle with the first baby, and when Sarah started the baby on formula, she went through tremendous guilt and more depression. Kip wasn't sure he ever wanted to go through this again, but Sarah knew her body could do this. When she found herself pregnant again, she hired a midwife at Gentle Beginnings Birth Center and planned for an out-of-hospital birth.

I love the look on Sarah's face and I have no doubt that she was saying a silent prayer of thank- fulness, healing, and amazing power. What a strong woman. Enjoy her story in her own words:


Jackson’s birth story
Born 8/29, 9 days past EDD by VBAC waterbirth


“I love you Lord,
And I lift my voice,
To worship you,
Oh my soul, rejoice.

Take joy my king,
In what you hear,
May it be a sweet, sweet sound
In your ears.”

This was my song during labor… it helped me to survive the hardest 4 ½ hours of my life! Compared to my first labor and eventual c-section w/ Kate, this was short and 100 miles an hour – less to tell (so why is it so long!) 9 days past EDD, my mantra of “Be still and know that I am God,” from Psalm 46 was starting to waver and I was starting to be anxious. After speaking w/ my midwife and starting Master Gland on 8/28, I went to bed grouchy w/ no contractions. My husband & his parents went to a high school football game & I stayed home w/ Kate.

I woke up at 4:30am and felt terrible, but assumed it was food related again since I had developed a sensitive tummy around 38 weeks to many different foods. By 5am I was starting to believe I was in labor, but not worried. I wasn’t experiencing contractions as I had expected them to feel, but still believed that things were starting to warm-up. (I never went into natural labor w/ Kate, but was induced due to high BP at 41 weeks.) I couldn’t go back to sleep, so I made myself a big bowl of rice krispies & strawberries since it was easy & sat down to relax & catch up on facebook and emails. I also found an online contraction timer, but the contractions I was experiencing were irregular and all over the place & impossible to chart well. I felt frustrated, and unsure if I was really in labor of wondering if something might just be wrong.

By 5:30am, I really needed to focus much more on my contractions instead of my computer work and started to feel much more uncomfortable. I so badly wanted to wake up Kip and call my doula, Camron, but decided that I should wait until 6am to wake them. It was a Saturday morning, and I figured that 6am was a ‘reasonable’ time to be awakened compared to 5:30. I also figured that since my last birth was more that 30 hours, they would probably need all the sleep they could get since I was sure I was going to have another marathon labor. By 6am I woke up Kip, and my contractions were getting painful at this time, to the point that it was difficult to talk. I remember specifically saying, “You need to get up, and you need to eat some breakfast. Like, right now.” I called Camron, and told her that I thought I was in labor, but that things were inconsistent. She told me she’d get ready and come over, and ordered me into the shower.

In the shower, though the pain was relieved due to the hot water, I could still feel the intensity building. “For out of the overflow of his heart his mouth speaks.” – Luke 6:45. Suddenly in the shower my heart was just swelling with a praise song (lyrics above) and I remember leaning on the wall of our shower and sort of muttering this praise song. Hadn’t heard it in a long time, and not one of my favorites or anything but it appeared on my tongue and I lifted it up to the Lord! I felt calmer instantly. Kip called Camron to tell her that I was getting serious, and that she should probably hurry.

I told Kip that he needed to call his mother to come get Kate. His response was “Aren’t we going to drop her off on the way to the birth center?” I quickly said ‘No way!!” to having enough time to do that because of the intensity of my contractions and his mother headed our way. At this point, Kate woke up which was really hard for me. She’s very sensitive to my physical feelings and I didn’t want to show her I was in pain. (She was 21 months old at the time.) I labored on my yoga ball on my hands and knees until Kate was picked up.

At this point, Kip and I began to argue and bicker. I still wasn’t positive that I was in labor, which in retrospect is just silly. I was experiencing strong contractions that I couldn’t speak through, and my train of thought was all over the place and I wasn’t making sense of finishing thoughts & sentences. Kip kept asking me questions, and my answers were mostly “I don’t know.” In hindsight, this should have clued him into the fact that I was really in labor and focused inwardly, unable to carry on a good conversation. Instead, it just really frustrated him because he thought I wasn’t communicating my needs well to him. Oh well – now we know better for next time!

Camron arrived at 7:35 to see me laboring on the side of the bed, w/ my contractions 2-4 minutes apart. She wasn’t sure what was going on w/ my irregular contractions; they were all over the place, and only lasting about 30-45 seconds, and a few minutes apart but super intense and I wasn’t able to speak during them. Camron started to think I was farther along than we had originally thought, and asked me to go to the bathroom and asked Kip to help me to try & relax. Relaxing and peeing was totally out of the question – I felt like I had to pee so badly but just couldn’t relax and this was really starting to bother me. At 8am I had a 1 minute 45 second contraction and Camron asked if I was pushing and I told her ‘no’, but in retrospect I think I might have been ‘trying’ and didn’t know it yet. At 8:02 Camron called our midwife Ann and they decided it was time to head to the birth center so we started collecting our things.

At 8:09 it was DEFINITELY time to go to the birth center, the waves of contractions were short and hard, almost angry feeling. I remember crying from the pain, thinking that I couldn’t be that far along and that if I was feeling so much pain how could I make it another 30 hours like my last labor? Camron and Kip just kept reassuring me, and she gave me a pad to wear in case my water broke in the car. The walk to our car was absolutely the longest and hardest walk of my life, and looking back at it I now absolutely see the benefit of homebirth and never having to leave your sanctuary when you are at that point in labor! By 8:15am we were standing outside, leaning on the car until the contraction was over to leave and I yelled at the 2 of them “JUST GO!” in the middle of the contraction. I knew it didn’t matter how bad it felt, we had to get moving before this baby came.

At 8:30am Kip picked up the speed and we hit 90mph down 820 towards the birth center. Praise God that the cops weren’t around! I remember telling Kip that either my water had just broken or that I had finally gone pee. (It was my water breaking, thanks for the help Camron – you saved our car!) I kind of went to another place mentally in the car – I had no concept of time or distance other than it was taking too long for my liking. I had one hand down on the middle console pushing my bottom up and the other hand pulling my whole body up from the handle bar attached in the ceiling. Kip asked me if I was pushing and I kept telling him that I didn’t think so, that I was trying not to, but I really had to go to the bathroom. Piece of advice – transition in the car stinks, so try to avoid it!!

At 8:48am we pulled up to the birth center, and Ann and Marsha (my midwife & her assistant) met me at my car door and unbuckled my seatbelt for me. They lovingly and swiftly escorted me into the back bedroom to check me. I remember walking past the sign they had put up front, “Ssshhh! Mother in labor.” I thought, “wow! That’s for me!” When we got there I was calm and seriously working hard, feeling like I was going to lose control soon. I told Ann I needed to push or go to the bathroom. She checked me and said, “Honey, you feel like you need to push because you are complete and +1, and this baby is ready to come! If you want to do this in the tub you need to go there NOW, or we can just do this right here on the bed!” I remember Kip asking if I had heard her, and hearing how encouraged he was at her words. Everyone suggested I get in the tub if I felt like it, and I really wanted some pain relief if possible. As I walked to the birth tub, I remember seeing the copy of my scriptures for labor laying on the table. I remember feeling so relieved that someone else had seen them, that the midwives and looked at them and prayed for me even before my arrival! I had a suitcase full of gear for labor and scriptures with lots of good intentions but my labor was going too fast to use any of it!

I walked to the bathtub and stopped to push really hard for the first time on the side of the tub. Then I got in, and pushed while sitting on my hands and knees. I remembered Donna (my birth instructor) suggesting this position in labor, and once I got into it I felt like I couldn’t get out! It just felt right, and even though I felt like I had a little less control since I couldn’t see what was going on I fully trusted my birth team who were literally right behind me! I remember Ann praying for me, Marsha coaching me, Camron keeping my hair out of my face, and Kip right above my head whispering encouraging words as I pushed. As I was pushing, Lynsey (the best birth photographer!) showed up just in time to capture Jackson’s arrival. He was born at 9:15am, less than 30 minutes after our arrival! Praise God! My midwives had to use suction to get some of the meconium-stained fluid out of his mouth but then I turned around in the water and took my baby boy! They gave him to me, and he was quiet for just a moment and then cried out to let us hear his voice. It was so wonderful to relax in the birth tub with him and hold him in my arms while the midwives helped me to deliver the placenta. Kip got to cut the cord. I remember being in total shock and disbelief about what I had just done. Only 4 hours before I wasn’t even sure I was in labor!

We got out of the tub for the midwives to check us over (no tearing!) & clean up the tub, and then we got back in for our herbal bath, which was just amazing and so relaxing. Jackson was quiet, opened his eyes so wide for us, and sucked his thumb sweetly in our candlelit bath. Ann told me that thumbsuckers are sweet babies and she was sooo right! Kip helped me to clean the little bit of vernix that he had in his hair, and we went back to the bedroom where we had breakfast in bed and I nursed him. Kip’s parents brought Kate down to meet her little brother, and Lynsey captured their first meeting in a sweet photograph. My birth team kept asking us if Kip and I wanted privacy w/ our new baby but I didn’t! I was so happy and proud that we had accomplished our vbac, and I felt SO GOOD that I was glad to be in the presence of everyone that had helped us to get there! I remember laughing quite a few times after he was born, knowing that I had been surrounded by successful VBAC’ers (Lynsey & Camron) and that I had just pushed my baby out! They took Jackson’s measurements, 10 lbs, 11 oz’s and 21 ½ inches long! I remember laughing at the look in Kip’s eyes when he held up the scale to weigh him – you could tell he was thinking “Am I reading this thing right?!”

It was so strange, just 3 ½ hours after his birth, being gently escorted by my midwives back to my vehicle. Hadn’t they just taken my seatbelt off?? Was I really done and going home with my baby? It just didn’t seem real! I can’t begin to describe how great I felt after his birth – physically, emotionally, spiritually. I’ve never felt so ALIVE as I did that afternoon (and hungry, too!)

The differences between my 2 birth experiences are night and day, especially in the care that we received as a family. Within 48 hours of Jackson being born, we had house calls from our midwife, our chiropractor, and our lactation consultant. I really had a team of people surrounding me with Christ’s love and support, helping me to figure out the ‘new mom thing’ with Jackson. The care that we received from these women was a true testimony to the rest of our family as to the reason we made our birth choices to a family that hadn’t been too confident in our choices to use a midwife & birth center.

Physically, recovery is so different w/ a VBAC than with a c-section. Ann warned me and was correct, you feel SO GOOD compared to your c-section that you have to be really careful not to overdo it & exhaust yourself. Breastfeeding has been so successful with Jackson, and I haven’t struggled with feeling blue like I did after my c-section. Jackson is a sweet-natured baby who slept so much during the first day or 2 that I worried about him! His gentle beginning has surely affected his temperament in a very agreeable way. Kate just turned 2 this week, and she is a firecracker that lights up our life with her vivacious spirit. She came into this world with a bang and is a spitfire for sure, and I look forward to see how Jackson’s personality develops and to see if his labor and birth experience shape his character. I can’t even begin to describe the healing that has taken place since my vbac, and I now feel so alive and encouraged about our family and look forward eagerly to see if God blesses our quiver with more arrows!

Monday, February 14, 2011

Part III: Mellanie's Story -- Breastfeeding Bekah

I have the privilege of working with Mellanie Shepperd, an amazing lactation consultant, as Chapter Leaders for the Tarrant County Birth Network.  I had at least known of Mellanie and spoken with her on the phone for about 4 years before actually meeting face to face.  She has been a regular visitor in my Class 12 for quite some time now.  She has helped so many women in and around Tarrant County over the last several years.  She also runs a free weekly breastfeeding support group, For Babies Sake, with another LC every Tuesday night in Arlington. This is her touching story of breastfeeding her baby born with Kabuki Syndrome.  She had never written the story before and she told me it was much harder than she expected.   Mellanie, I am honored that you would share it here.  Thank you.

When I was pregnant with Bekah, I had a sense that something was different about her.  It wasn’t something I put into words often, but I knew.  We were planning our first homebirth and had all of the supplies ready.  The day I turned 35 weeks, my water broke.  That put me out of the running for a homebirth, much to our disappointment.  After consulting with our midwife, we needed to make the decision to either go to Dallas and deliver with her back-up OB or go to Ft. Worth and deliver with a hospital-based midwife group.  After some debating, we decided to go with our midwife’s backup.  We assumed that if he was her backup, he must be natural-birth friendly and supportive of our wishes.  How wrong we were!  He was far from supportive and was NOT happy with me expressing my own desires & opinions.  Needless to say, we were not friends by the time Bekah was born!  I am so thankful that God gave me the courage to stand up for myself and my baby.  She would not have fared well with the interventions that the OB kept pushing.  Anyway, I guess that is a story for another day.  Now, on to the breastfeeding part of this story.

Despite the fact that Bekah was coming 5 weeks early, it never occurred to me that she would have difficulty breastfeeding.  After all, I was a lactation consultant.  Of course she would breastfeed!  (In hind sight, I wish that I had at least made sure I had access to donor milk, just in case.)  She was born weighing 5lbs 12oz and initially appeared to be very healthy.  She latched on shortly after birth, but didn’t feed well.  When it was time for her newborn exam, her blood sugar was very low.  After much debating and trying to express colostrum without any luck, we ended up allowing her to be supplemented with formula.  Over the next 5 days, we battled low blood sugar, difficulty maintaining body temp (which, much to the amazement of the nursing staff, was remedied by almost constant skin-to-skin contact) and jaundice.  We dealt with so much misinformation about breastfeeding that it was astounding.  One nurse even told us that Bekah was having trouble having bowel movements because colostrum is constipating!  My amazing hubby took her out into the hall and lectured her for 15 minutes.  To make a long story short (the hospital stay could be a blog post all its own!) we left AMA on day 5, still struggling to breastfeed.  It was a real eye-opener for me on how even the strongest parents can make poor decisions when they are constantly battered by medical professionals.

For the first five weeks of her life, we nursed, pumped and finger-fed her pumped milk.  It was exhausting.  She was barely gaining weight, spit up A LOT and could not be put down without instant screaming.  In desperation, I did an elimination diet and determined that she could not tolerate dairy or soy in my diet.  I eliminated these foods and the spit-up decreased dramatically.  Chiropractic care took care of the rest.  She began gaining weight a bit better, but was still on the very low end of normal.  By that time, she was past her due-date and “should have” been doing much better with breastfeeding.  We finally got her to the point that she could breastfeed well enough that I didn’t have to pump and supplement her with expressed milk, but she couldn’t maintain the latch for more than a minute or two.  She popped on and off and would nurse for 30 minutes or so before she fell asleep, exhausted.  She was nursing every hour or two.  By her two-month appointment, we were really questioning the pediatrician on what was “wrong” with Bekah – why was she still so floppy, why was she gaining weight so slowly when my other two kids had gained very rapidly, why did she still have almost no head control, why wasn’t she smiling or making any eye contact with us?  They had no answers, other than “she was a preemie, she will catch up.”  I remember thinking that 5 weeks was not that much of a preemie.  At about that time, the OB who had delivered her called to say “Oh, by the way, you had a two-vessel umbilical cord, which can be associated with mid-line birth defects.”  He recommended that we have her kidneys & heart checked.  We had an ultrasound done of her kidneys and a full check-up on her heart.  Thankfully, these tests came back normal, but we still had no answers.

I frequently got comments about how tiny she was.  A stranger at a restaurant said “You need to feed that baby!”  At every well-child visit, we would ask the same questions but no one ever addressed the hypotonia, or any of the other issues we were seeing.  Finally, at her 4 month visit, the pediatrician acknowledged that there might be some kind of issue but said we just needed to wait and see.  Shortly after that, I went to a La Leche League Conference and had the privilege of hearing Catherine Watson-Genna speak on two issues that ended up having a big impact for us – sensory processing disorder and tongue-tie/suck dysfunction.  I had brought Bekah along with me to the conference, and after the session on tongue tie, I went up to talk to her about Bekah.  She held Bekah and immediately noted her low tone, the way she held her hands, the lack of eye contact, the “funky” way she moved her tongue (my term, not hers) and I felt so validated!  Finally!  She wasn’t sure if Bekah indeed had a tongue tie or not, but recommended having her evaluated by an Ear, Nose & Throat doctor.  As soon as we got home, I made an appointment to see Dr. Biavati in Dallas.  He walked in the room, briefly looked at her tongue, then started looking at her hands, her eyes, and asking about my other kids.  I thought it was very strange that he was examining these other areas when I was there to see if she was tongue-tied.  He finally said, very gently “Well, she is not tongue-tied, but I believe she has something called Niikawa-Kuroki Syndrome” (more commonly known as Kabuki Syndrome.)  I was so relieved!  Finally, we had a name for what we were dealing with.  I think Dr. Biavati was a little confused by my reaction.  I think he expected me to break down and cry, but I was just so relieved to know what was going on that it didn’t occur to me at the time to be upset.  He recommended a geneticist in Plano who was familiar with the syndrome, which is pretty rare.  We saw the geneticist, who agreed with the diagnosis.  



Once we got a diagnosis for Bekah, it seemed that the pressure to give her formula increased exponentially.  Something about being labeled “special needs” seems to insure, in the minds of many people, that breastfeeding is not adequate.  Somehow, people seemed to think that formula would be the “magic cure” that would make her grow.  Thankfully, I had connected with a group of other parents of kids with Kabuki Syndrome.  Two things became very obvious to me, very quickly.  One is that kids with Kabuki Syndrome just don’t grow very fast when they are little.  This holds true whether they are formula fed, breastfed or even tube-fed.  Virtually every parent expressed their frustrations with the gain-lose-gain roller-coaster that our kids were on.  The second thing that was obvious to me was that some of the issues that kids with Kabuki Syndrome struggle with could be helped by breastfeeding – immune system dysfunctions, poor oral motor skills that made eating and talking difficult, digestive issues,  IQ, etc.  It made me more determined than ever to make sure that Bekah got as much time breastfeeding as she could, even if it meant that she had to nurse all day and all night to get in enough calories.  (Lest people think that we could have made things easier on her by giving her a bottle, she struggled even more with bottles.  If we had not worked so hard to make breastfeeding work for her, she would have been on a feeding tube.)  We spent quite a bit of time educating therapists, doctors and nurses.  It was frustrating to feel that we were always telling them what they should already know.  The older Bekah got, the greater the pressure got to stop breastfeeding – we were frequently told that if we would just stop breastfeeding her, she would eat more solid foods and grow more.  What I knew in my heart was that if we stopped breastfeeding her, we would be taking away her best source of nutrition and protection for her immune system with no guarantee that she would do any better with solid foods.  Our persistence paid off though and I am so very glad that we stuck with it.  Bekah is sick far less than most other kids with Kabuki Syndrome and has never been hospitalized, she eats well now and has a very healthy diet, and she talks up a storm!  Breast milk is not magic and she still struggles daily with many of the effects of her syndrome, but I know without a doubt that she would struggle so much harder without the good foundation that 25 months of breastfeeding gave her.


There were several people who supported us throughout the first two years that still hold a very, very special place in my heart.  Some gave regular support and validation, like my dear friend Mary Ann and our amazing chiropractor , who we saw very frequently those first 2 years- Dr. Betsy Taylor. Some were there for a few months, but made a huge impact, like her first OT, Merrit Kazda and others, who answered our questions without judgment and supported our desire to make alternative healthcare decisions for Bekah.  We could not have done it without them!

Some people feel sorry for us because we have a child with special needs.  We don’t feel sorry for ourselves though.  We are so incredibly grateful that Bekah was chosen for us.  We have learned so much from her and have been very blessed to have her in our lives. 

As a lactation consultant, I have also learned a tremendous amount from my experience breastfeeding Bekah.  I have learned in a much more personal way how breastfeeding is about so much more than just the food, or even the bonding.  Breastfeeding is a normal developmental milestone.  Just like any other developmental milestone, if it is skipped, it has an effect on many other developmental processes.  I have learned that, even when breastfeeding doesn’t look like we thought it would, it is definitely worth the effort.  I have a special passion for helping other parents with special-needs infants to breastfeed and I am thankful for the experience with Bekah that has enabled me to help even more mothers and babies.


Monday, February 7, 2011

Part II: Alisa's Story - Sweet Baby Luke - Born with a Cleft Lip and Palate

As promised, here is Alisa's story of pumping for Luke, her third baby, born with a cleft palate and lip.  Yes, this is the Alisa -- the one that started my road to natural birth, my dear friend for almost 16 years now.  This was a crazy time in her life.  It's one thing to read it and another to experience it.  I hope you enjoy her story and gain strength from her words.  I'm certain some of you have endured, and are enduring, similar trials of providing breast milk for your babies.  You are not alone.  Alisa, thank you so much for sharing your story here.

"I sat on the ultrasound table willing my eyes to not see what was there. Or not there. Before the tech could say, "Did you say your husband had a cleft lip?" I knew. I saw the dark space between my baby's top lip. A quick reply to the tech, "Yes" and he confirmed what I already knew; my third child would be born with a cleft lip and palate.

I gathered my thoughts and two children and went to the car to call my husband. As I made the call to Jay, who was working out of state at the time, I made a decision; This baby would not be treated any differently. I would not find out if this baby was going to be a boy or a girl. I would still have an unmedicated birth. This baby would still receive breast milk.

I had nursed my other babies for as long as they would. 11 months and 15 1/2 months. I would give this baby the same. For as long as I could.

I started reading about breastfeeding a baby with a cleft lip/palate. I knew it would be a difficult thing to do alone. After a good amount of research I realized I would probably need to pump to help things along. I taught myself about pumps and what I would need to do to build up a supply of breast milk. I will be forever thankful to the woman who gave me a high quality pump. I assembled my kit and waited for my baby to be born.

We welcomed our big healthy baby boy of 9 lbs 10 ounces! … oohing and ahhing over him and announcing his name immediately, “Luke.” When our pediatrician came to check on us he stuck his finger in Luke’s mouth to inspect his suck. "Great!" he said, "Luke will be able to nurse."





But latching on was difficult. Luke had only one side of his palate intact. Like drinking through a straw with a hole in it, he just could not make a complete seal to latch on. I started pumping round the clock. Every 2-3 hours. Before we left the hospital I had started finger feeding Luke. I had a syringe with the milk that I had pumped with a tiny tube attached and taped to my pinkie finger. I would let Luke “suck” on my pinkie while I would slowly press the syringe to "let down" the breast milk. It became a cycle. Pump --> Wash pump parts --> Finger feed --> Start all over again.


The hope was that by finger feeding, Luke would not get attached to a plastic bottle nipple, and that eventually we would succeed in getting a proper latch. But how long could I keep doing this? After a week of pumping and finger feeding and trying to get Luke to latch on I made a very important decision. Was it more important for Luke to receive breast milk, or to breastfeed? I wanted both. But I chose breast milk.


I pumped and pumped and pumped some more. Luke drank it up with a bottle created for babies with clefts, using a pigeon nipple. I was ecstatic when I was able to pump enough to put some in the freezer. I cried when I would spill the "liquid-gold." I was thrilled when I would fill up a bottle enough to feed Luke and have some leftover. I was satisfied when we saw him grow steadily and maintain his healthy weight.


I pumped in the car, I pumped at church. I pumped at the mall. I pumped in hospitals during Luke’s surgeries. I pumped in the movie theater. I pumped while I fed Luke. I pumped on a road trip across 6 states and back again. I pumped when I didn't want to. I pumped while eating dinner. I pumped  A L L   T H E   T I M E.


Luke grew and grew. I had times when I didn't think I could do it anymore. I thought I could not keep up with what Luke needed. I received a few bottles of donated breast milk and constant encouragement from family and friends. I drank a lot of water. Ate oatmeal. I smelled like maple syrup from taking fenugreek supplements. I did all that I could. All the while keeping the goal in mind. I wanted Luke to have breast milk just like my other kids. I had to fight the urge to blurt out when others saw me feeding him a bottle "this is breast milk, not formula!"


After almost a year I knew when it was time to be done. When I had done all I could do and it was time to be finished pumping. We celebrated. Friends threw a "Pump No More 2004" party for me compete with breast balloons.


I said goodbye to that pump and all of its parts. I said goodbye to the rhythmic song I’d listened to every few hours all year long ... “a-boom-dee-yea-a-boom-dee-yea.” I said goodbye to washing pump parts. I said goodbye to the round the clock 2-3 hour cycle. I said goodbye to that year of pumping and I was thankful to be done. Thankful to have given Luke exactly what I had given my other two children. The best start."