Boob Camp

I spent this past week at what my classmate affectionately referred to as “Boob Camp”, a week long intensive that will hopefully result in my becoming a Certified Lactation Counselor. I’ll know for sure in six to eight weeks when I get my exam results but it’s looking good.ūüėČ

It was an amazing, grueling, informative experience. What I learned this week will allow me to help mothers and babies even more than before. This week has given me the resources and knowledge to counsel to the best of my ability and then some.

For those of you wondering how Little Man is doing, he is great! He enjoyed spending this week hanging out with his Nana while I was in class all day. We are looking forward to celebrating our second Big Latch On in just a few days.

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First Birthday Party

Today is Little Man’s first birthday party. It is also the one year anniversary of waking up next to him in our own bedroom for the first time since the NICU. I wake up every morning grateful to have him in my life. I greet him every morning with a smile no matter how tired I am. I am beyond thankful to every doctor, nurse and lactation consultant at the NICU for supporting us through the hardest most gut wrenching time of my life. It is because of them that Little Man is here today. It is because of them we are able to celebrate. Today I will not only be celebrating him, but you. For everything you do for every mama, dada, baby, everyone who walks through your doors. And especially for the ones who walk out empty. You will not easily be forgotten by any of us.

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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.

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Happy Birthday, Little Man!

This very minute, just one year ago I held you for the first time. I looked into your eyes and saw the unbridled potential they held inside them. I soaked in every moment of you. My life has never been the same. So much has happened this past year. So much heartache. So much joy. So much worry. So much celebration. So much you. So much us. Words cannot express what I feel for you. I want to be your everything always but I also want you to be your own man and grow up strong and courageous and independent. Each step you take that moves you away from me hurts just a little but it also feels so good. I am so proud of everything you have already become. I couldn’t ask for a more wonderful person in my life than you. I love you, Little Man. Happy Birthday!Image

Dorothy & Noah’s Story

A great source of information and a wonderful supportive community is the Tongue Tie Babies Support Group on Facebook. https://www.facebook.com/groups/tonguetiebabies/ That is where I met Dorothy. Here is her story as she shared it in the group (shared here with permission from Dorothy).

Hi, everyone. Noah’s ULT/PTT was revised Tuesday morning (at 0830). I just thought I’d let everyone know what we are experiencing because I personally couldn’t read enough personal experience stories when I was trying to decide what we should do.

Pre-revision symptoms: Hour long STRESSFUL breastfeeding sessions. Noah would only stay latched for a minute or two thrashing around, pulling on my nipple, turning his head, crying, frustration, lots of stopping to burp and spit up. Coughing, choking…(Sound like Over Active Let Down? – my problem, right?) Very uncomfortable latch and nursing sessions, depression, wanting to quit, crying…

Early post revision: I am holding back the joy because I feel like this is too good to be true. Noah is CALM at the breast. He stayed latched for a marathon NINE minutes this morning, and came off the boob SMILING and CALM. I wanted to cry tears of joy. I’m afraid to be happy because I’m afraid to jinx anything – I’m afraid to make this post, but you all need to know this because you helped me get here.

Some things I learned for post revision care that might help others: Be ready. I bought gloves (Noah will associate stretching with the latex in his mouth – I’m hoping this will make suck training with a bare finger easier later if he needs it – I’ll let you know how it goes). I put on a glove and Hyland’s teething gel for stretches. He screams, but calms down quickly as the gel takes effect. I don’t do the stretches in the same place or before or after any specific activity in hopes that there will be no other associations. It’s not as bad as I had prepared myself for, but it’s tough.

We started arnica the morning of the revision, and I make sure he get it on time, every time. His lip was pretty swollen, but coming down quickly. I gave him acetaminophen twice yesterday – at 2pm and 8pm (he hasn’t needed it today). We have used Rescue Remedy a few times after the stretches as well. A drop on his lip is distracting enough to calm him down a bit – he focuses on licking it off and the taste of it instead of what just happened to him. He’s wearing his amber teething necklace today. Not sure if it helps, but he looks darn cute in it.

Have a “nurses station” with all your gloves, arnica, teething gel, acetaminophen,… and pen and paper. Write down across the top row “Arnica, Gel and stretch, acetaminophen…” then underneath you can keep track of what time you give each thing. Remember when baby was newborn, and you couldn’t remember which boob you gave or at what time? This is like that. Write it down and you won’t have to worry.

Check with your provider on correct dosage for acetaminophen based on the concentration of the suspension and the baby’s weight. Remember that herbal remedies are not regulated by the FDA. Do your homework, be prepared, and you will make the right choice for you and your family – which will almost never be the same as what’s right for someone else.

Dorothy was also kind enough to continue to update the post with how Noah’s revision is going. The following update made me cry. I remember this same wonderful feeling as she is having. The feeling that finally came when my son was able to nurse without causing me pain. That feeling of joy instead of pain.

We just got back from a walk. Did stretches (horrible), and he’s been on the boob for FIFTEEN minutes. This is a record for us. It was about 7-8 min of eating. Now he’s just comfort nursing, but I don’t mind it He snoozes a bit, then eats a bit, snoozes a bit, eats a bit… Normally I would have taken him off the breast, put him in his crib to get away from the intensity – I would have been ‘touched out.’

I looked forward to hearing updates from Dorothy. Having been through the revision process myself I knew some posts would be happy and some would be sad. There can be so many ups and downs after revision. It truly is a two steps forward one step back process. Then came this update:

I feel sometimes like there might be some sort of placebo effect. Like right now he’s nursing, and it feels SO different. But then I wonder if it really does or if it’s in my head. I want this revision to fix things for us SO badly. I want to know that my guy isn’t hurting for nothing… Does me even thinking that mean that it’s real? I know his response to revision (longer times staying latched, less gas, less spitting up, calmer at the breast-little to no thrashing) are real. I don’t think babies can have any placebo effect. Conclusion: even if nothing changes for me in the long run, if the changes for him remain, it was worth it. I think I’m just afraid to believe these results-I’m afraid they will vanish.

Bawling again. There are so many mothers out there like Dorothy and I who are ready to do anything for our little ones. And not only will we do anything for ours but for others as well. November has been Tongue Tie Awareness Month. Tongue Tie Awareness lives with us all year long, though. We have been through so much and we can’t help but to reach out to other mothers to help them where they are. Thank you, Dorothy, for sharing your story.

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Dorothy’s Profile Picture – Another Testament to Her Desire to Help Others