I want to share our journey with all of you.
Not because I need or want sympathy, but because I would love to help someone else catch this sooner than we did. I was on bed rest for the last month of pregnancy due to high blood pressure & low amniotic fluid. Ashyln was born via c-section because of being breech throughout the pregnancy. My mom came a week earlier because Joel’s Grandpa Layman passed away 3 days before the scheduled c-section. We started off breastfeeding with a bang. I had no fears or concerns with breastfeeding. It was painful from the start (which should have been our first clue)...but I thought that I just had to give it time to toughen up. She made it back to her birth weight by her 2 week checkup, so all is good, RIGHT!?!
At 2 weeks 2 days, she started fighting the latch & would yank off multiple times per side per feeding. I dreaded this constantly... I would try to sing and always ended up crying with each feeding. It KILLED! I was told that I was too stressed with life and that she could sense it. . I just needed to relax. Also that she was just a lazy eater & just wanted instant gratification of a bottle. I had the worst cracks, you could have put a quarter sideways into them.
At 2.5 weeks I came down with the first round of mastitis. It felt like I was hit with a MACK TRUCK! Horrible feeling & think you are dying. I started using a nipple shield to protect me from getting damaged more. The very next night my mom said she's acting like she's still hungry. She gave her a bottle and she downed it. This was our first clue something was wrong. We thought that the antibiotics were affecting my supply. Here we were on a Sunday night at 12:30. We had no milk for her! Every local store was closed for the night. The hospital had given us a diaper bag, but somehow they never put a can of formula in it. I happen to remember that there was a close friend who I knew had been pumping and freezing her extra milk. We woke them up and she kindly shared her supply with us.
The next morning she called me to tell me that she had just told someone that day that she had so much milk. She wished that she could find someone that needed it, but didn’t know how to start searching. Here we called within 12hrs with the request for milk! THIS WAS A TOTAL GOD MARICLE! I had felt bad because I thought I was originally taking from her baby. I started pumping the side with mastitis to give it to her in a bottle and breastfeed Ashlyn on the other side. I was pumping nasty stringy mucus with the mastitis. We had to strain all the milk because it was plugging up her nipples of her bottles. My parents left the day I took her to the chiropractor, since mom had noticed that she favored holding her head to the left & always had her chin tucked. We also thought maybe she couldn't latch properly because of her head position. Breastfeeding didn't get any better.
Ashlyn would constantly fall asleep as soon as she would latch. We were taking cold wash clothes and pressing them on her legs, back, and face to try waking her up. I thought that since I was done with my antibiotics my milk supply should be better so she shouldn’t be hungry. I took the bottle away for one day to only breastfeed. Made myself available all day to put her on as often as she wanted, but it ended up that she was only getting enough to maintain.
The next morning, I saw an orange streak in one of her slightly wet diapers which means that she wasn’t getting enough and was dehydrated. I went into Labor & Delivery to have her weighed to check her weight. Praise God she was still gaining! They sent me home with a syringe and tubing to put in her mouth with my nipple to make a faster flow to keep her interested. That was a no go. Since that didn’t work either, we decided to only pump and bottle feed since she wouldn’t nurse. We started to notice that when she sucked on the bottle she had a high click sound (now we know that it was caused by her losing suction because she couldn’t elevate the back of her tongue because the thePTT). She also couldn’t hold on to a pacifier. It would always pop right back out.
My mom had posted a link to my Facebook wall concerning upper lip ties (ULT) and the problems that they could cause. I had never heard of it before. Started looking into it and sure enough Ashlyn matched the pictures of being ULT. She wasn’t able to get a deep latch with these ties, which caused me to get a lipstick nipple and leads to serious cracks. We previously had her tongue clipped at 3 days old by the family doc because of her not being able to move it passed her gums. I so appreciated her doctor. He didn't agree with us on her being tongue tied, but was willing to do it anyways!
After I discovered her ULT, I went back to her doctor to get a referral to an Ear, Nose, and Throat Specialist (ENT) in Yakima. I was told by a friend in OR (her children had these ties) to have the ENT check her for a posterior tongue tie (PTT) also. PTT usually go hand in hand with an ULT. He told me that she wasn't ULT & he could clip her tongue more but didn't think it was necessary since she could move it passed her gums. I left the appointment not satisfied with the results. I wanted a 2nd opinion. This same day, Kyle and Shanna flew in to visit us for a week. The OR friend gave me information to an ENT in Portland (Dr. Ghaheri, who specializes in PTT and ULT, which had helped her. He was willing to see us within 4 days! We made the appointment for the day after we were in Seattle to have an ultrasound done one her hips for dysplasia. She was as developed as a 3 month old!
We spent the night in Seattle, with Kyle and Shanna since they flew home in the morning. Ashlyn woke up with the sniffles. Her first cold….BOOO! (This has nothing to do with Ashlyn….but he has been part of our life for 5 years. Joel’s mom called that morning to tell us that something was wrong with our dog, Willie. He had injured his back and his back legs didn’t work. After being caged up for a 1.5 weeks, he was making progress! We didn’t need to put him down.) After her revision, she started to move her tongue like crazy and was gagging on it because it was getting in her way. She is now 5.5 weeks old. I didn't start breastfeeding right after she had the revision because I had so much damage left to heal & also didn't trust Ashlyn. The next day after we got home I was pretty sure that I had a yeast infection, because my nipples smelled like decaying flesh (looking back I don’t think I had this). Since having mastitis, I had been in constant breast pain and didn't want to have anything touch me. I didn't want to hold Ashlyn, give hugs, no sheets or blankets, or wear clothes.....My life was DO NOT TOUCH ME! My cracks seemed to be taking forever to heal.
During week 6 and 7, I tried putting Ashlyn on me several times and it continued to hurt. She was screaming whenever she was awake and not sleeping any longer than 30-45mins once I would lay her down during the day. We lived like this for roughly 2.5 weeks. I was losing hope…. I started to think that her tongue tie was reattaching even though I was faithfully doing the stretches 4 times a day. She was losing tongue movement that she had gained from being clipped. I was heartbroken. I knew that the ENT is willing to release the tie again (for FREE) within 6 months of the first release. We were thinking were going to be headed back to Portland.
At 7.5 weeks old I got my 2nd round of mastitis even though I was pumping every 3 hrs. and pumping until empty (I did this, I thought, to keep myself from getting mastitis again). I thought that this was crazy to be getting this again. Joel noticed the signs of mastitis right away (THANK GOD FOR THIS) and we were able to get meds in me faster than the 1st time. It saved me a lot of discomfort. We had an appointment with the Lactation Consultant (LC) in Seattle. But due to the mountain pass conditions we had to cancel and reschedule the following week.
That Sunday evening I told Joel that I had to have a break. I was so exhausted and overwhelmed. He packed up an overnight day and off to Grandpa’s she went! The Monday morning I saw a white blister on the tip of my nipple (called a bleb). We decided that this just comes along with the mastitis and to just let it be. Tuesday we traveled to Seattle to the (LC), referred to us by the Portland ENT. She also offers cranial sacral therapy (CST). From what I understand about it, it relaxes the tense muscles. Ashlyn now moves her head side to side, tips her head back, has full movement of her tongue, and is back to having multiple dirty diapers a day! Amazing! I was very skeptical about it at first, but not anymore! Ashlyn latched right on without a fight. She said, “Girl, you got this!” But was I was having trouble getting my milk to let down because of being so tense….it didn’t feel right. She wanted me to just play around with breastfeeding over the next few days, but not to make it be something that Ashlyn got mad about. The next day, I went ahead to try breastfeeding. It went okay the 1st time, but the 2nd time it hurt.
Something was still wrong and I wasn’t interested in continuing to try! I asked the LC about the mucus that I was getting while pumping. She thought it sounded like a bacterial infection and suggested having my milk cultured. She was right! It came back as a bacterial infection called enterococcus. The two previous rounds of antibiotics from mastitis didn’t seem to touch it. Ashlyn was now 8.5 weeks old. I had this infection for 6 WEEKS! I was prescribed a different antibiotic and within 2 days all my sensitivity was gone. My cracks are healed so quickly now! Ashlyn still was not a happy baby…..the screaming spells were still happening and had gotten worse. I was able to track it down to terrible gas pains….Mommy had been bingeing on lots of CHOCOLATE!
We now have this under control and have a completely different baby. She is now taking good naps through the day. This is currently where we are in this journey. I have been able to breastfeed here and there this week with no pain. Ashlyn doesn’t like to sit still to breastfeed like she does with a bottle and doesn’t flange her lips. So, we still have some work to do, but thinking we are starting to see the light at the end of the tunnel. The one thing that stands out to me, is that it we need the Body of Christ, no matter which the denomination that they are in. There were so many different people that God brought in to our lives at just the perfect time! He promises that He ALWAYS will provide and to take care of us!
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