Our Tongue Tied Baby

Our fifth baby was born with a posterior tongue tie and a top lip tie.   

This story may bless someone else so I will tell it here as we journey along...

Timeline>>

Friday, April 8, 2016 - Lillian Malama Ke Akua is born plump and beautiful at 6:30 in the evening.

Lillian was born with a Posterior Tongue Tie and a Top Lip Tie

12 hours later:  Her blood sugar is checked because of her high birth weight (8lb 10oz).  We are told we need to supplement with formula immediately or she could get brain damage.  My reaction was: What! Can't I just breastfeed some more?  She'll be fine, really.  I lost.  In the end she got about 6 oz of formula in the next 24 hours before her blood sugar stabilized and they let me go back to exclusive breastfeeding.

Sunday, April 10 - Yay, we're going home!  The doctor requested Lillian come see her 2 days after discharge to check her bilirubin numbers which were borderline.

Monday, April 11 - We've been seeing pinkish/orangeish discharge in her wet diapers (that's weird:/) and she is not pooping hardly at all. 

Tuesday, April 12 - In to the doctor for bilirubin check.  Her weight is also checked.  She's lost 10% of per birth weight already.  Doctor wants to see her again in 2 days to monitor her weight.  8-O  Mom's not happy.  I'm trying to keep my baby home and well and breastfed! What is going on?

Wednesday, April 13 - Mom is getting very anxious in the complete absence of poop diapers and only a couple wet diapers in the last 24 hours.  Mom reads info on the internet indicating that the discharge probably means Lillian is dehydrated! Mom begins pumping milk and bottle feeding that evening.

Within 24 hours:  Lillian has had 6 wet diapers and a few poop diapers.  Praise God!

Thursday, April 14  - We call a private lactation consultant to come do a home visit to figure out why Lillian isn't getting enough milk from mom.  I'm drinking fenugreek and eating oatmeal to try to increase my milk supply.  Maybe that's the problem??

Friday, April 15 - Awesome consultant from simplylactation.com comes over for a home visit.  Bad news:  After doing a pre and post breastfeeding weight check it is discovered that Lillian has transferred NO MILK at all.  8-O  Good News: I don't have a milk supply or latch on issue.  

Other news:  The consultant looks in her mouth and sees a posterior tongue tie (PTT) and a thick top lip tie.  She tells us that even though the tongue tie is not obvious to us it is probably keeping her from doing the proper "wave like" motion with her tongue that is required to pull milk out of mom.  

Let the round the clock pumping and bottle feeding begin!! While we figure out where to take her to get her ties released.

We did some fingerfeeding as well, as recommended by our lactation consultant.  But that takes a LOT longer.

We are drawing an immense amount of strength and perseverance from our friends and church family who are bringing us meals, sending us gifts, and PRAYING!  God is also sending us invaluable resources and direction through these same people.  Sugar Land Bible Church (slbc.org) - We love you!!!

Thursday, April 21 - We take Lillian to see a pediatric dentist about 45 minutes from our house.  She was on a list of recommended doctors for this kind of thing.  We get there and have a great experience with the staff - very friendly and attentive.  HOWEVER, the doctor determines that her PTT is not really that bad and a lot of times it doesn't really help to get it released.  Additionally, she determines that she is not comfortable attempting to release her tongue tie which is "way back there."  She does a halfway release of her lip tie - she says if we need more done we can come back at no charge.  She didn't want to cause too much trauma on her lip.  Ok?  I guess.  

30 minutes after arriving home from the doctor's office - The lactation consultant is over for a second visit so we can see how the procedure helps Lillian with transferring milk.  A pre and post breastfeeding weight check shows NO MILK TRANSFER has occurred.  The consultant was hesitant to say anything bad about the dentist's decision to not release the PTT.  She recommends a speech therapist so that Lillian can get oral motor therapy.  Maybe she just needs to be retrained.  

Saturday, April 23 - Lillian is recovering very well from her procedure and doesn't seem to be in any pain.  HOWEVER, there is still absolutely no improvement in milk transfer while breastfeeding.  

Sunday, April 24 - Some awesome friends, one of which is a retired dentist, really encourage us to get the PTT fixed.  It could cause speech issues down the road, we are told.  

Monday, April 25 - Calling around to find an oral surgeon or pedi dentist with extensive PTT experience proves to be a challenge.  In steps Dr. Ghaheri from drghaheri.com - a website given to us by a friend.  I emailed him to ask for a referral in the Houston area.  He emailed back within 30 minutes!  He's awesome!  He said his top choice was the Infant Dental Center in Corpus Christi.  The doc, Marilyn Brodeur, only does lip and tongue tie procedures and only sees patients under 1.  We couldn't have found a better candidate to do Lillian's PTT.  We get scheduled for 3 days later and are thrilled that she is only 3 hours away.  

Thursday, April 28 - We drive to Corpus as a family.  Mom and Lillian go see the doctor.  She is extremely efficient.  She releases Lillian's tongue tie and the rest of her lip tie with her laser in less than 2 minutes.  Lillian doesn't even bleed and calms down right away, just like the first procedure, which was also done with a laser.  The actual trauma for the baby during this procedure is pretty much non-existent.  It's so quick!  If you see someone as quick and efficient as Dr. Marilyn Brodeur:)

11pm - We're done driving home and I try latching her on for the first time post - PTT release.  She latches on and stays on for about 20 minutes.  I hear a little bit of swallowing.  Off to a great start.

Friday, April 29 - We have one of the best breastfeeding days since her diagnosis, considering that we've had a terrible time with latching on.  We have 2 or 3 sessions where she latches on for over 10 minutes and I hear some swallowing.  The PTT release worked! 

Saturday, April 30 - She latches on real well for her first feeding in the morning and repeats yesterday's performance.  And then things go down hill.  The rest of the day she refuses to latch on.  Lots of screaming and a frustrated mama.  She wins each round and gets her bottles without latching on. 

Sunday, May 1 - We battle it out during her first feeding in the morning.  Thirty minutes in I get a latch.  I hear a good deal of swallowing.  The process is exhausting.  Can I really keep this up?  And still pump and make bottles and then start all over again?  This is challenging and my family is suffering in my absence!  Let's press on!  We've come this far haven't we?  We are still waiting to be scheduled for her home visit with a speech therapist.  There is hope!

To be continued...