We Made It!

I can’t believe an entire year has passed. Even before becoming pregnant I knew I would want to spend at least a year breastfeeding my child. This goal seemed almost impossible only a few days after Little Man was born. In that dimly lit NICU room I began the stages of grief, mourning a relationship I would never have with my son. I had moments of weakness where I thought it was all over. I thought I would never experience that bond that I desired so much. That relationship that called from my inner being.

But I also grew strong, so strong. I vowed to never give up. I would do anything, anything. I was determined to not let this stop us. I pumped around the clock. I offered my breast around the clock. No one told me why he couldn’t latch. They gave me “tips” here and there but nothing relieved the pain and nothing allowed him more than a few seconds of nursing at a time. I left that NICU floor with my baby in one arm and my pump in the other. We would do this together, the three of us. At that point I was exclusively pumping. The pain was too much and we needed him to continue to gain weight.

After returning home we started our journey back to the breast. The next morning I visited my IBCLC, Julie. Without Julie I don’t know how far we would have gotten. She has been a huge part of our journey. That visit was the first time Little Man nursed again. Julie helped us with positioning and getting a deeper latch. It was bearable and he seemed to be getting more milk. But it still wasn’t right. I spent hours nursing and crying and cringing in pain. Then I’d pump and bottle feed until I thought I could stand it again. Then I’d put myself through the pain all over again. This isn’t how it was supposed to be. It wasn’t supposed to hurt like this.

I eventually started going to breastfeeding groups in addition to seeing Julie weekly. I went to two different groups every week. At the first group the first week I held it all in and bawled once I got back in my vehicle. I cried and cried thinking I would never have what those ladies have. I would never be able to just pull my shirt down and nurse my son without feeling like I needed three extra hands. I would never be able to sit there and smile while my son latched on. That would never be me.

By the next week nursing had improved. We were probably nursing about 60% of the time and bottle feeding and pumping the other 40%. We were far from perfect but we were on the upswing. I still cried. But this time it was at the meeting. I met with the IBCLC after. She gave me some more tips and helpful advice. We continued to improve. But something was still not right.

I returned to Julie and asked her about something she had mentioned at our very first meeting. She had mentioned he had a “short frenulum” but quickly moved on. I asked her if she thought it could be the cause of his shallow latch. She admitted it was possible but didn’t have much more information for us. I went home and researched as much as I could about tongue ties and breastfeeding. What I found astounded me. There were all these mothers out there fighting to breastfeed and fighting for their babies.

By the time my son had his next well baby visit only a couple days later I was convinced this was the root of our problems. But I had no idea where to go to fix it. I asked his doctor about it. She tried to open his mouth to look but he would not let her. She said it was unlikely but I could have a referral to an ENT if I wanted one. I said yes and she set up an appointment. The ENT office called me back to tell me when the appointment was. It wasn’t for another three weeks. I could not wait that long. They told me I could get an earlier appointment at a location that was farther away. I took it and we went to see the ENT a couple days later.

I went over our symptoms with him. He was kind and gentle and confirmed that my concerns were valid and after looking in Little Man’s mouth he recommended a revision. He did it right there in the office that day. He used a special pair of scissors while I held him in my lap. There was a little blood and I nursed him right away. It was amazing the difference. There was still a little discomfort which I figured was normal after what we had gone through for weeks. I was relieved that I could now nurse him more and he would probably start to gain weight faster because he could nurse longer now.

A few days later I noticed a white patch under his tongue where the revision had been performed. I had no idea what this was so I made another appointment and went back to the ENT a week after the procedure. I also wanted to ask him about lip ties because it appeared Little Man also had one of those and I had read that revision of the lip tie could also help. The ENT said the healing under his tongue was normal and told me he wanted to wait to revise the lip tie because I had seen some improvement after the tongue tie revision. He told me to wait a couple months to see if improvement continued.

I wasn’t sold on that answer. I didn’t want to spend a couple more months in pain when I was fairly certain another revision would help. I found out about a pediatric dentist a few hours away that did laser revisions on lip ties. I emailed him pictures along with a list of symptoms. He quickly responded that he thought a revision might help and recommended that we come to his office. We scheduled an appointment for the next business day.

We drove up to his office along with my husband and mother. While there the dentist confirmed the lip tie and did the revision. I immediately nursed Little Man with amazing results. I couldn’t believe the difference. As I watched him and felt him take in so much more breast tissue I finally realized what nursing was supposed to feel like. I cried. Again. These were tears of release and tears of joy. I couldn’t understand why this couldn’t have been done weeks ago but I was also so glad that it had finally been done and we could have that relationship I so desired from here on out.

But the rest of the story isn’t all sunshine and roses. The tongue tie journey is a roller coaster full of ups and downs. About a week after revision Little Man’s latch became shallow again. I couldn’t understand why he was nursing so well but now was back to old habits. I looked into what we could do now. We went to the chiropractor which we had already been doing anyway. There would be relief for a few hours after but then the shallow latch and pain would come back. We went to a craniosacral therapist and that didn’t seem to help. We went again to the same craniosacral therapist and this time she also included infant massage which she taught me how to do at home. This was the ticket.

After a massage Little Man was calm and able to latch well without pain. I would do face and neck massages several times a day and a full body massage once a day. I slowly reduced the number of massages while keeping a close eye on his latch. He soon needed just a couple massages a day.

Not long after, I returned to work. Thankfully I work in an infant classroom where my son is with me. I was able to continue nursing him around the clock and did not have to pump. We also have an amazing speech therapist at our school. I contacted her about the slight discomfort I was still having and about facial sensitivities I thought he had. She evaluated him and gave us some exercises to do. His sensitivities improved along with his latch and we were able to lessen the massages some more.

A couple months went by and he started tucking in his upper lip again while nursing. This is common with lip ties. I was worried his lip tie had reattached. I sent pictures to the dentist who did the revision and to another well respected dentist. They both replied that the healing looked normal and there was no reattachment. So I met with our speech therapist again to see if she could give me some exercises for his lip.

She showed me how to do some exercises that would help with sensitivity and keep his lip stretchy and able to flip out while nursing. I nursed him immediately after she did the exercises with him. He flipped his lip out the entire time with ease. I continued to do the exercises. I would do a couple of them right before each time he nursed. I slowly went down to doing them a few times a day then every so often. He is now able to nurse without them. Every once in awhile I will have to pull his lip out but it is rare.

We couldn’t have made it through this first year with out all of the support. A huge team of people helped us have that nursing relationship I so desperately wanted for us. I can’t thank any of them enough for all they have done whether it was a quick word here or there or weeks of support. Every little bit counts. It really does take a village to raise a child. I will carry this experience with me and I will use it to help others.

I already have. I play a very active role in international tongue tie support and advocacy groups. I was able to donate well over a thousand ounces of pumped milk to babies and mothers who needed it. Sharing my experience has helped other mothers and babies who needed tie revisions and even those who just have everyday breastfeeding concerns. Without our journey I wouldn’t be able to help so many.

I still feel there were moments I will never have back with my son but I feel like those moments missed were worth it to prevent so many others from losing those moments. The pain and struggle we went through makes this one year nursing milestone so much more momentous.

We still have times when we struggle and I know that our journey is not over. Little Man still has muscle sensitivities in his face that our speech therapist continues to help us through. We will continue to persevere and we will use our story to help others. And we will continue to nurse. As long as he wants. Because even at one year old I treasure those quiet moments under the moon light where I sit and nurse him and stare at his beautiful face. And I can’t help but tear up and think about how far we have come.


Lip Tie Update Week Two

It is high time for an update. I’m sure you can gather from my last post that things haven’t been going so smooth lately. I basically spent World Breastfeeding Week struggling and in pain.

Little man’s latch had been awesome immediately following the lip tie revision and for several days after. Some time during the middle of last week things started taking a turn for the worst. He started by clenching his upper lip when I would try to do his stretching exercises. Then he started doing it while nursing. I could not flip his lip out. Then the clamping came back. And his whole mouth and jaw became very tight. Awful pain again. I’m back to sandwiching my breast and pulling on his chin.

During all of this we had two chiropractor visits and one craniosacral therapy. The chiropractor adjusted his neck which was tight. This gave mild relief for a few hours then back to pain and tightness. The craniosacral therapy made no noticeable difference. I’m back to that feeling of, I’m doing everything right and it’s still not working. Why isn’t it working?

My poor little man. I can feel him closing up, pulling himself inward. I know it is because I am doing the same while we nurse. The pain has me clenching my own jaw while he sucks. The struggle brings tears to my eyes again. He sees this. He knows this and it effects him. He is still overall a happy person, he always has been. But we are missing out on those joyful, fun, relaxing, loving, bonding moments we should be having. Instead they are replaced by that old familiar pain and struggle.

I want to give up yet I want to scream that it isn’t over. We’ve come too far. I’m not stopping now. More research, more questions. New answers. Yesterday we went back to craniosacral therapy. This time we add on massage. Afterwards he is more loose than I have ever seen him. His shoulders are down from his ears and his face is so relaxed. He finally latches again without the clamping. Relief. He starts to tighten up again ever so slightly by the end of the day and I give him a light face and shoulder massage while he nurses and he relaxes again.

It is flat out amazing and horrific all the pain and suffering a tongue tie and lip tie can cause. So many things connect to the mouth. I’m finally coming to the realization that this will be a longer trial than I thought even with the revisions. I’m finally understanding what the relearning process really means not just for him but for both of us. And most importantly I know that we can do it and that all of this is for him, to give him my best.

Lip Tie Part 1

I am taking us back to the present for this post. Don’t worry, I will pick up where I left off in another post soon.

We will be going to see Dr. Margolis in Highland Park, IL next week to have a laser revision of little man’s lip tie. He will also be taking a look at his tongue tie to make sure all the tissue was removed when it was clipped. I emailed him three pictures of his lip tie and he replied immediately saying it is a class IV lip tie. This is a severe form! The ENT who did his tongue tie clipping said it didn’t look bad and I should just wait to see how it effects him. It’s amazing the difference when talking to an expert on lip and tongue ties.

WP_20130718_009 (1)The laser procedure should only take a few minutes and he will nurse immediately after to make sure he is able to get a good latch. I can’t believe that so much of the pain we’ve gone through could have been avoided if this had been caught earlier. I don’t understand why professionals who should know these things just don’t. Lactation consultants, nurses, OB/GYNs, midwives, pediatricians, ENTs. They should know how to identify lip and tongue ties. So many problems not just in breastfeeding but in other areas of development could be avoided if parents only knew.

And it doesn’t stop there. Some lactation consultants and nurses do notice these ties. But then they are shot down by doctors who say it’s not that bad or they don’t even see it at all. Since I’ve been researching and talking about ties I’ve heard so many stories about parents of infants who have had severe ties being dismissed.

There are more consequences to an untreated lip/tongue tie than just difficulties breastfeeding. http://bit.ly/untreatedties This link lists them. I don’t understand why medical professionals prefer to allow any of those things to happen to a person rather than just do a simple three minute procedure that can help them avoid all of those things.

This is not to say that there aren’t amazing professionals out there who diagnose and treat immediately. They are out there and I am extremely grateful to them. They make such a difference in the lives of many.

Here is a great informational pdf about ties from another expert: http://www.kiddsteeth.com/nursingbookaugfc2011.pdf