Sunday, December 22, 2013

Another progress report

Today I just cried. Pretty much all day. The sadness surrounding our nursing situation is some times so overwhelming. Some days are okay but today is jut hard. It seems sometimes like he is getting worse.

I met with a lactation consultant Jennifer Tow,one of the leading people on tongue ties via Skype. She thinks there may be a few reasons for Lane's issues. First she thinks he may still be compensating by using different facial and neck muscles that haven't yet been released by chiropractic or cranioscaral. I had the cranioscaral lady, who also happens to be a friend who comes to my house to do it ( totally lucked our on this one) talk to jennifer before a session. Jennifer was able to tell the chiropractor what muscles are usually tight and need release on a tongue tie baby. I am hoping this will he him chomp less and suck more. He is very tight on the left side of his neck and jaw. she also had me learn to rub his pterygoid (a muscle of the jaw). She also wants us to be using a at breast supplementer. I bought the lactaid but his suck is still not good enough to draw the milk out of it effectively. Plus it is a pain and I feel like his latch is so bad on it. The next thing she wanted me to try was the medela sns. It runs more on a gravity flow. We are still struggling very very much with it so we have resorted back to finger feeding and squeezing his cheeks at times. I am always fearful he is not getting enough food and I know he is struggling because he is still very sleepy. Some babies deal with not having enough to eat by shutting down.

Jennifer and I also talked about my milk supply and how to increase it. She wants me to continue moringa, goats rue (she said this on was especially important for my grandular tissue), more milk, marshmallow root, and milk thistle. She also wants me to add in shatavari, anise seed, and a pregnancy tea made by a former client of hers.  Yes, it's a lot of pills!

Lastly, we talked about the possibility of his tie reattaching or a submucousal cleft. Either way would be so difficult so I am hoping this is not the case. After ten weeks I am tired!! Unfortunately I am not ready to give up yet. The thought of giving up is too hard. It gives me a sense of anxiety, sadness, and guilt. The thought of giving formula makes me sad and the thought of continuing this way makes me equally sad and anxious. Really it is a no win situation. That little tiny and faded glimmer of hope is keeping me going one day at a time.

Tuesday, December 17, 2013


For those of you wondering about how things are going with the breastfeeding I thought I would give a little update. You can find the first part of the story here.

 We had our appointment with speech therapy this last week. They want me to pump while I feed him with the haberman special needs bottle, then put him to an empty breast. They also recommended a soothie pacifier to strengthen his suck. It scares me to give him a pacifier but I am hopeful it will help not harm his suck. He has been doing great with the finger feeding (suck training) so I decided to do all of his feedings this way instead of using the bottle. I have been doing it since Friday night and I cannot even explain to you the difference in his suck. When we first started he didn't even know how to suck. All he wanted to do was chomp on the finger which of course doesn't get him any milk. I also had to hold his cheeks for him to obtain any suction at all. Now he isn't chomping as much anymore and doesn't always need cheek support. He still however gets overwhelmed at the breast so I am only putting him to an empty breast and feeding him in a reclined or laid back position.

 He still has his good feedings and his awful feedings. The awful feedings are hard for me mentally but I am in a way better place than I was with Scarlett at this point. I am looking at it as a marathon, not a sprint. One foot in front of the other and one day at a time. I feel I owe it to Lane to keep going.

 It is A LOT of work but I feel good knowing we are going forward and he is doing great. He is gaining well and I am making enough for him so far thanks to all the herbs. I had to dip a little into my freezer stash this last week due to a bout of mastitis (yeah, I can't seem to catch a break). I was so thankful for a husband who could work from home and my brothers girlfriend who helped out while I was shaking with a fever. My supply dipped a little but is now back to normal. Of course I still have to take all of my supplements.

I have so many things to be thankful for this time around that I have to keep my mind focused on them. Lane is such a good little baby and rarely cries unless he is hungry or wants to be held. He also sleeps great at night going for about 2 four to five hour stretches. Unfortunately, I still have to get up and pump so I am not getting much sleep yet. I am also thankful my milk supply is better this time around. Right now I am making about 28-30 ounces a day plus nursing him a little. I have to take all my herbal supplements but haven't had to take domperidone yet. Lastly, I am so thankful I figured out why Lane had a dysfunctional suck and we are working on it much sooner than I did with Scarlett so there is hope for us yet!

Sunday, December 1, 2013

Breastfeeding : Round 2

It's happened again! I did everything right this time. Ate healthy throughout pregnancy, had a homebirth with no intervention, skin to skin with baby for 48 hours and I still got a baby with a dysfunctional suck. I now know the reason for this dysfunctional suck was a wonderful little thing called posterior tongue tie.

Lane's first latch on after birth

After I had Lane I was so so excited and nervous to start breastfeeding. I tried biological nurturing and had him skin to skin for 48 hours and let him self attach. However he would never really do it correctly. He would go down the the nipple and sloup it in. From the start I was feeling something was off. Then one night he started the dreaded chomping. I remember so vividly with Scarlett this action. He would do fine drinking the first letdown all the while flicking my nipple (which I now know means he held it in his high palate and wouldn't bring it back to the soft palate) and then he couldn't get anything more. So he began to use his gums. It is one of the most awful feelings in the world!! My nipples and areola were getting bright red and sore from the dysfunctional suck pattern. He would also gag, choke and gulp on the letdowns. He could not coordinate his suck swallow breathe. After the first week of oversupply and engorgement we started the 3 hour long nursing sessions in the evening along with the fall asleep after 5 minutes at the breast only to be hungry again 5 minutes later. It was exhausting! Plus his poops were continually green which is a sign he was getting too much foremilk and not enough of the fatty hindmilk. He gained fine in the beginning because I had a slight oversupply  to begin with and he got enough on the first letdown. All the while I was trying to keep it together but was failing miserably.  I could feel the anxiety and depression creeping in. It was so reminiscent of Scarlett. Everyone kept reassuring me everything was okay but I knew in my gut it wasn't. They told me maybe I had a lazy baby who was efficient and got what he needed quickly. But I just knew something wasn't right.

 I was doing lots of research to try to find the answer and came up with posterior tongue tie (PTT) and upper lip tie (ULT). I had never heard of it before but all of my struggles with Scarlett and all of Lane's struggles seemed to point to this problem.

The problem with PTT and ULT is that many ENT's are not aware of it or don't feel it is of any benefit to cut it. Many of them also use scissors instead of lasers so sometimes they have to put the baby under general anesthetic to get deep enough. We visited the ENT in our hometown just to see. He told me that Lane did have a minor tie but it would not cause issues because he could stick his tongue out. So being the persistent person I am I found the website of a great dentist, Dr. Kolow who deals a lot with PTT and ULT. I emailed him the best pictures I could take of Lane's tongue and lip tie and told him all of the things we were experiencing. He said based on these symptoms and the pictures he would expect to find a PTT and ULT. So I got on a plane to New York by myself with a 2 week old the day I talked to the doctor. We had to quick book tickets and drive fast to make it to the airport. Thankfully my flight was delayed or I wouldn't have made it in time. I kept thinking that I couldn't believe I was doing this and my anxiety was high. What if I was flying all the way to New York just to be told there was nothing wrong. But I also knew if I didn't I would never have been able to give up breastfeeding without feeling like I had done everything in my power to make it better.

So we arrived  in New York at close to midnight and made our way to the hotel. I barely slept because I was so anxious. The next morning we made our way to the dentist office. I was given a room right away, filled out paperwork, and Dr. Kotlow came in not long after. He did a quick check of Lane's tongue and upper lip and said he definitely had both and lip and tongue tie and couldn't believe the ENT wouldn't cut it. I then was given a video to watch on what they did during the laser surgery and the post op instruction for stretching the site. They then came in and took Lane. My heart was beating so fast watching my little man leave the room with the nurses. Not even 10 minutes later I heard his little cry coming around the corner. They brought him to me to nurse. I was slightly disappointed when I didn't feel much of a difference. I was hoping I would be one of those that I was reading about where things got better right away. However, I knew I had to be patient. After the appointment we were back on the plane home. Lane slept pretty much the whole time and for this I was glad.

Lane is now almost 7 weeks old and I wish, oh how I wish I could say things have gotten better. I have had a few pain free feeds here or there but mostly he is still nursing incorrectly. Also despite stretching the site (so awful to do) it re healed 3 weeks after the surgery and I had to open it back up and start the stretches again. Also he refuses to do suck training (which is basically finger feeding) to help him strengthen his tongue and learn to move it right. I thought by this point we would be nursing well but we are still struggling. My supply decreased a lot at 2 weeks postpartum and Lane didn't gain much weight from weeks 3-5 so we are now supplementing with expressed milk doing "paced feedings" from a Dr. Bronners bottle. The haberman which we used with Scarlett to strengthen her suck is still too difficult for him. He poops out really quick on it. I am mostly pumping and doing the paced feedings. I put him to the breast a few times a day after I pump. I have been working with a lactation consultant online who works with tongue tie babies and she says this is the best way because he is struggling with the suck, swallow, breathe and reverts back to old habits (bunching up tongue in back, flicking nipple into high palate, and chomping) when the letdown is to strong for him and he chokes. I know for sure I definitely don't have oversupply but might have a strong letdown due to the herbs I have to take to keep my supply up. I wonder if I will have to continue them if he ever nurses correctly? However, if his oral motor skills are off even a normal letdown is too much to handle. We have also been doing craniosacral therapy and chiropractic care which is helping so much with his latch and tension. He still has a sensitive gag reflex and won't bring my nipple back to the soft palate but craniosacral is supposed to help with this by helping the high palate to come down.

So at this point in time my nipples are still sore, my milk supply is decreasing, and my baby still isn't nursing correctly. I have my days where I seriously consider giving up. I have had my days where all I do is cry and cry. Where I feel like it is all to much to handle and is affecting my bonding with my son. I so desperately want to give him the best and I so desperately want to just nurse him. To be able to nurse him at night without having to move him to get up and pump afterwards. To throw the pump out the window(I have seriously considered this) and just nurse him to maintain my supply. I am feeling myself slowly falling into the deep dark pit of depression. It is so hard for me to stay optimistic sometimes because of what I experienced with Scarlett. It never got better with her and it is hard for me to think it will with him. The thing that keeps me going are that he got his ties fixed so there is hope for retraining and strengthening his suck. I am hopefully going to get a referral back to the speech therapist and continue to work of suck training. I have to be content now to just keep pumping, feeding him the bottle so he gains weight and strength, and nursing him a couple of times a day.