Lip Tie Update

It has been one week since little man’s lip tie revision. I’m still amazed at the difference it has made for nursing. The hardest thing right now is making sure we are doing the stretches. After a lip or tongue tie revision most doctors will recommend stretching the site for one to two weeks to promote healing and discourage reattachment. For a lip tie this consists of holding the edge of his lip and flipping his lip up toward his nose. Or if grabbing on is hard, I just slide my finger under his lip and push up gently. Massaging the site is also said to be useful. Little man didn’t mind at first but I think he’s getting tired of it. I always tell him what I’m about to do so I don’t shock him by just sticking my finger in his mouth. I try to make a game out of it so he associates it as something good and not something that just has to be done to him. He gets lots of kisses while we do stretches and kisses are his favorite thing.

Here are some links to other great blog posts about lip and tongue tie revision after care:

http://jayesimpson.blogspot.com/2012/10/tongue-tie-gentleness-and-compassion.html

http://jayesimpson.blogspot.com/2012/10/tongue-tie-gentleness-and-compassion_12.html

http://nurturedchild.ca/index.php/breastfeeding/challenges/what-to-expect-after-tongue-tie-and-lip-tie-release/

Little man had his three month pictures taken yesterday. I loved that this picture of him sticking out his tongue was the first one I saw.

Photo by Rouse Photography

Photo by Rouse Photography

We also got some great breastfeeding shots like this one.

Photo by Rouse Photography

Photo by Rouse Photography

Chiropractor

After the lip tie revision breastfeeding has been so much better. There is very little clamping down where there had been clamping at every feeding before. With the clamping down gone I noticed pinching on the right side. Very painful pinching at times. I explained this to the chiropractor today. After examining little man, he noticed that he didn’t have full range of movement in his neck. After a few clicks with his instrument he moved his head fully back and forth. It was pretty amazing how easily that worked. He has to go back twice next week to keep his neck from tensing back up. Nursing after yielded no pinching! If you are having problems with one breast and not the other, I highly recommend chiropractic care. Baby could be off kilter. I recommend it anyway as we go every other week for maintenance. I’m just amazed at the difference such an quick easy adjustment can make. It makes me think of the people who don’t go to the chiropractor that would just keep suffering through that pinching or even worse quit breastfeeding. And poor little man not being able to move his head all the way. We will hopefully be getting cranial sacral therapy next week.

Lip Tie Part Two

We are on our way home from Illinois as I type this. Dr. Margolis was amazing. He is caring and calming to be around and very informative. The experience as a whole was great.

We arrived early and went to find his office while we waited. One of the assistants saw us outside the door. She came out and welcomed us in and let us know he could see us early.

While I was filling out the paperwork Dr. Margolis introduced himself and asked about his history for why we were there and he remembered the email we had sent as soon as I started telling him about little man’s ties. He went back to the procedure room to make sure everything was ready while I finished the paperwork.

He brought little man and I back to the room and had me sit with him on my lap. He examined his mouth and confirmed the class IV lip tie. He also checked his tongue tie revision and said that it looked great. He explained how the procedure would go and how to care for him afterwards.

He introduced me to both of his assistants who have both been working for him for more than 25 years. Little man laid on my chest with his head on my shoulder facing up. We both wore glasses to protect our eyes from the laser. I held his hands while one assistant held his head and the other suctioned liquids. The procedure took about three minutes. Little man cried a lot but I think it was more from being held down than from pain. He hates having his arms held. He stopped crying as soon as it was done and he could move again.

Dr. Margolis explained that some mothers feel relief right away when nursing and others take a few weeks. He was surprised I was still nursing with the tie he had and said most mothers quit because of the pain. He told me to email him pictures at two weeks so we don’t have to drive back just for him to take a look. Then they gave us a room for me to nurse in.

Amazing. Honestly. Night and day difference. He is able to suck in my entire areola. Before he could barely get in half. The pressure from his top gum is now faint and on the edge of my areola instead of extreme and on the base of my nipple. He didn’t clamp down like he usually does. The pressure was so much lighter all around. I was wondering if he was actually sucking at first because it felt so different. Before he sucked so hard I could feel it clear into my armpits. Now it feels soooo good. I knew it would be better. I didn’t know it would be this much better.

I will update with another post about his healing process and how his latch progresses in the coming weeks.

If you are considering having this procedure done, do not wait. And I highly recommend Dr. Margolis.

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

Coming Home Take Two

I was mentally prepared to return home with little man. I knew I had everything I needed and the knowledge and support to help me through anything. But I was emotionally wounded. I was shaken to the core. I cried a lot. I was so worried I would do something to send him straight back to the NICU. With every day I have become more and more confident. Each day proves to me that I am capable.

WP_20130509_002The day we came home my mother also returned home. I valued her help more than anything but this was the moment when it felt like the three of us were our own little family. It was just hubs, little man and I. No more visitors. No more help. It was time for us to make it on our own.

The morning after we returned home little man and I had our second visit with Julie. I don’t remember much of this visit. I am actually struggling to recall what we talked about. I feel like so much has happened since then. We have come so far.

Little man was having almost exclusively bottles of my breast milk at this point. Our meeting with Julie was the first time since the NICU that I put him to my breast. He actually did quite well. I’m sure I cried. It gave me hope. There would be a day he would exclusively nurse again.WP_20130522_011I went home and nursed him as often as I could until it became too painful. Then I would offer him a bottle of pumped milk. I pumped and pumped until my nipples were able to take nursing again. Then I would nurse until it hurt. This was the cycle over and over.

I met with Julie again the next week. Each time we nursed, I checked his latch. I made sure his mouth was open as wide as possible. But it was still painful. Julie said his latch looked great. She could tell I had been working on it. Why does it hurt if he is latched correctly? Maybe my nipples were still healing. She gave me some tips to help with the pain. Coconut oil. Warm compresses. Cold tea bags. Rest. I went back to pumping more and nursing less to give my nipples longer breaks. The pain lessened. A little. Breastfeeding isn’t supposed to hurt. Right?

Since I know how this story “ends” I’ll give you a sneak peak. We are on day three of no bottles as I type this. Stay tuned to find out what has happened in between then and now.

All Night Long… All Night!

You have to sing that title Lionel Richie style to get the full effect.

No bottles last night! We have been doing bottles, one or two, at night to give my nipples a break. Last night little man slept with me after he fell asleep nursing. And when he stirred at 4 am instead of getting up and giving him a bottle I just popped a breast in and he nursed back to sleep. And guess what. My nipples didn’t fall off and I’m not experiencing toe curling pain! Oh it is the little things these days that I celebrate.

The NICU Days

We arrive at the NICU before the ambulance, before little man. They tell me to wait in the family waiting room while they get him settled in. I sit there crying. I can’t take it. What is taking so long? Why do I have to wait? When can I see my son?

A nurse finally comes and gets us. He is ready. I can see him now. When I enter the room he is sleeping on his little warming bed, still naked. I wrap him in his blanket. I cry again. I feel so guilty. He is here because of me. I did this.

The night nurse is so kind. She calms my fears. She lightens the mood. She comforts me.

They bring a recliner to our room so I can use it to nurse him. He has to be woken up to eat. I use the nipple shield. He nurses. It hurts so bad. But he is nursing even if it is just for a couple minutes. He goes back to sleep. I pump a few ounces. My mom goes home to take care of our dog and get some rest. It is parents only after visiting hours.

The machine goes off all night. I wake up each time. I try to sleep. I think I may have slept for 15 minutes this first night. Early in the morning little man finally has his first regular bowel movement. I cry. I never thought I’d cry over poop. After I change him we sit in the recliner and I cry and cry while I hold him. I’m so happy and so sad all at the same time. My mom returns in the morning. She brings with her all the things I need to stay for the long haul. I’m not going anywhere. I won’t be without him again.

The day nurse, Cyndi, the stickler, arrives. Only two adults in the room at a time. One adult must be a parent. My mom and hubs take turns being in the room with us. Little man is so sleepy. He is still on fluids from an IV. I wake him every four hours to nurse. He only nurses for a couple minutes at a time with the nipple shield on. Cyndi informs me that the NICU does not allow cups or syringes. I have to use a bottle. A what? A bottle. She brings them to the room. I don’t use them yet. I don’t want to.

No food allowed in the NICU room, only water. No toilets in the NICU ward either. So each time I need to use the restroom I have to bring my bag of witch hazel pads, diapers, peri bottle and other various postpartum items. Using a public restroom each time I toileted at this delicate time was not fun. But this was the least of my concerns. My own comfort went on the back burner for now.

Dr. Kim visits our room. He is glad that he had a bowel movement. He tells us that he looks improved and his sodium levels are decreasing. I wonder why they are keeping track of his sodium. He tells me that to leave he needs to be taking in more fluids, his sodium levels need to be lower, and he needs to keep having bowel movements.

944664_10151647484622792_1871510544_nI continue to wake little man every four hours to change and eat. He is still not nursing well and my nipples get worse and worse. Even with the nipple shield they bleed. Cyndi suggests I have a lactation consultant come by. I agree and she calls one up.

The lactation consultant watches his latch. It is too shallow. She also recommends supplementing with my pumped milk. We discuss pumping. So now I know that his latch needs to be corrected but I have no idea how to do that. I finally get out a bottle. I cry again. I am so worried this will lead to the demise of our breastfeeding relationship. I’ve read all the nipple confusions horror stories. “He likes the bottle better than my breast. He won’t latch anymore. He cries when I try to nurse him.” I don’t want this to be me but I know I need to get liquids in him.

The hubs isn’t much help in the NICU. He is so nervous and is not handling sitting around very well. And we are wasting away his paternity leave days. I suggest that he go back to work. My mother agrees to come and stay with us during visiting hours. Hubs comes back when visiting hours are over to spend the evening with us then goes home to sleep. My mother returns again in the morning and we continue this schedule for the remainder of our stay.

The night nurse gives a bath and weighs little man each night. After his first full day there he has actually gained enough weight to return to his birth weight. They weight him again in the morning to make sure it is correct. And it is.

I continue trying to nurse him through the night, supplementing with pumped milk in a bottle only every so often. My nipples are bleeding so bad by the morning. Cyndi calls the lactation consultant again. His nursing sessions are still very short. Dr. Kim returns to tell me how little man is doing. He is continuing to improve. He wants to wean him off the fluids but he concerned he is not getting enough to eat since he is only nursing a few minutes at a time. I can either supplement with a bottle after each feeding or he can stay hooked up to fluids longer. I finally cave and give him the bottle as directed, still with breast milk of course.

The lactation consultant visits. Little man is sleeping this time, he had just eaten. She recommends I stop using the nipple shield, it is making things worse and not helping his latch. She shows me how to get him positioned in different holds. After a couple more nursing sessions I decide to do just the bottles. My nipples are in too much pain. I need to let them heal. I pump every four hours after I wake and feed him.

I cry every time I give him the bottle. I cry because I am sad I can’t feed him at my breast and I am happy that he is getting my milk and he is getting healthier with each drop. I cry a lot while I am there and even after we get home. I still felt so guilty even when people tell me I did everything right. Did I? If I did everything right why did he end up in the NICU? If I wasn’t so stubborn about not using a bottle would this not have happened? Did I know? Was my desire to breastfeed what caused him to be there? I deal with all of these questions one at a time. I cry them out. I cry them out hard. Eventually I come to a place where I am okay with myself and I know that all I wanted was what is best for my son. I come to a place within myself that I know this will not happen again. I thought I was educated before. I was only skimming the surface. And not only will this not happen to me again, but I will find a way to help others from landing here. This doesn’t mean I don’t have my crying moments. I still do. It is sad to think about. But I am able to move on and not dwell in the muck.

The nurses keep a detail record of how much he is eating and eliminating. Dr. Kim allows them to start weaning him off of his fluids. At midnight it is at half and by the morning his IV is disconnected. He can go home today!

Dr. Kim visits us again before we leave. My mom asks him about his sodium levels. He tells us we don’t have anything to worry about. Our nurse is in the room and hears this exchange. When he leaves she tells us more. “Since he didn’t answer your question fully, I will. His sodium levels were high because of the bag of saline he received.” I had a suspicion this was the cause. Now I know it was. So that doctor that said my son could have died if he went home actually made him sicker? That doctor who tried to push formula because my breast milk wasn’t sufficient enough gave him fluids that actually harmed him? Yes. He did. Now I am as mad as I can get. I am furious. Hubs is even more furious when I tell him when he gets home.

248167_10151650055447792_1033340867_nBefore we leave, little man gets to put his footprint on the wall outside the NICU. It’s a proud mommy moment.

394311_10151650300822792_1336767118_nI’m just grateful to be home with little man and hubs.

Side Note: There is so much I left out and I’m sure the timeline is off. I try to keep little man’s stay in the NICU a distant painful memory so it took some time to try to get it all written in the right order. I’m hoping there is just enough information here to give you a glimpse into our stay there. I also want to say that I am so thankful for Dr. Kim, Cyndi and all the other nurses at the NICU. They were amazing and so supportive of breast feeding. And before anyone asks, we did look into what legal actions we could take because of the saline and it really wouldn’t be worth the hassle.

Worst of Times

As I stared at my beautiful perfect son while I held him close I never could have imagined the fear and pain that would rush over me only a few days later. He was healthy. He was strong. I was capable and competent. What could go wrong?

I should have listened to myself. I didn’t want visitors. I wanted a quiet, secluded babymoon. I knew how important that was. I gave that up not wanting to ruffle any feathers. What an awful decision. My son is more important than their feelings. This taught me that I need to listen to my mommy instincts. They are strong and they are right.

936977_10151637527132792_143893635_nVisitors started the day after he was born. He and I should have been cuddling, naked, bonding, nourishing. We should have been getting to know each other. Instead there were these people in his face. There were these people wanting to talk, to hold, to disturb. All I wanted was to be alone with my son.

We went home and they came back. Sitting around making me feel uncomfortable in my own home. I know they didn’t mean to make me feel this way. But they did. I felt like I had to act a certain way, be a certain way. A way I didn’t want to be. I wanted to hold my son to my chest and cuddle in bed and allow him to learn to latch and eat whenever he needed. But instead I was covered up and sitting in a chair while he was passed from person to person until he cried, screaming, upset. Now I had to undress, undercover, trying to stay decent and trying to give my son what he needed at the same time.229643_10151641792887792_1389564446_nHe screamed and screamed. He would not latch. He would not eat. I cried. I didn’t know what to do. I felt so disconnected. This isn’t how it’s supposed to be. People! Get out! I wanted to push them all away and give my son the space he needed. But I didn’t. I am so sorry little man, so so sorry. I should have been stronger. I should have stood up for you. Instead I cowered, weak in the corner. Never again, little man, never again. Your mama bear is here for you now. Never again.

I became very worried as the days started to pass and he ate less and less. Something was very wrong. Why wouldn’t he eat? What did I do wrong? I pump to relieve the pressure of this precious milk flowing from me that he wouldn’t take. Why would he refuse this? It’s for him, just for him. Perfect for him. But he wouldn’t drink. He screamed and screamed. I was at a loss.603384_10151644735277792_1317246604_nMonday came and I called the lactation consultant. I fought back tears as I told her I needed to come in. I was having problems breastfeeding. I was so inadequate that I could not do what comes natural to every woman and has for centuries. She must have heard the desperation in my voice. We scheduled an appointment for that day.

I remember vividly taking him out of the car seat when we (my mother and I) arrived at the hospital where Julie, the lactation consultant, has an office. I smiled at him and talked to him about how big his clothes were and how soon they would become too small. I told him where we were and how Julie was going to help us.

When we went inside, Julie took us to the mother’s room. In here the room was quiet and dimly lit with a couch and tons of pillows. I told her how he would not latch and he would scream and not eat. How he hadn’t pooped since day two. I showed her how I tried to latch and he refused to eat, only resting his mouth on my breast. She opened his mouth wider and pressed his face against me. Was I really supposed to be that forceful? It didn’t seem “natural”. Wasn’t he supposed to be able to do this on his own? Why would I push that hard? He needs help doing this? Why? Why didn’t anyone tell me before?

He began to slowly become more tired and more pale as our visit went on. Julie decided to weigh him. He had lost well over a pound. She asked me when his first doctor visit would be. I told her the next morning. She suggested that it be right away. She was calm but showed her concern. I knew now something was not right. But I had no idea how truly not right it was. She called my doctor’s office for me, located also in the same hospital, and got me in right away. She also suggested I use a nipple shield. I told her I’d get one right away.

We took the long walk to the doctor’s office on the other side of the building. She gave me a hug as I cried. She comforted me and told me to contact her if I needed anything at all. I didn’t know I’d be calling her again so soon, within the hour. They took me right away at the doctor’s office. We sat waiting anxiously in the exam room.

The doctor finally came in. He was not my son’s doctor but another in the practice. I was uneasy but I had heard good things about all of them so I was okay with this. He laid him on the table and poked and proded. He said, flatly, that he was dehydrated. He did not ask very many questions. He stood near the door as he said his next unemotional droned out line. “He will need to be admitted to intensive care.” What?!?! The ICU is for deathly ill people. My son doesn’t belong there. It was as if he didn’t want to tell me. He was standing at the door like all he wanted to do was escape from his responsibility of explaining to me what was going on. For how long? “Oh a couple days.” A couple days?!?! I was in shock. I was angry at him for being so cold. But the worst was still to come.

We walked the long walk back to the other end of the building. This time it seemed even heavier and harder. We stopped in the bathroom. I sat on the toilet as I broke down crying. Call Julie, I managed to utter to my mother. Tell her what is happening. Tell her I don’t want them giving him formula. Ask her what I need to do. What do I say to them? How do I convince them that I have the milk he needs? She calls and Julie listens and answers our questions. She is comforting still. She will meet us when we get to the ICU.

I call hubs. I tell him to bring all of my pumped milk. I knew we were going to need it. I finally get myself together enough to keep walking. We stop at the hospital pharmacy to buy a nipple shield. It takes forever. There are four people in front of us. Some with multiple orders. I just want to push them all out of the way. Don’t you see I am heading some where important?! But they don’t. No one knows the hell I am going through. I stand in line crying, holding my son and my nipple shield. We finally get out. We continue our trek to the ICU. Hubs has made it there before us. Stupid pharmacy. Where is my milk? It is already in the fridge. Oh. Okay.

We take little man into one of the ICU rooms. The ward is quiet, maybe even empty. It is an adult room. This hospital has no NICU, no PICU. The pediatrician on call isn’t even there. She/he is at a dinner. She/he never comes. They hook little man up to machines and begin drawing blood. He looks so sad laying there in just his diaper with a thin blanket underneath him. They finally let me hold him again. I wrap him up tight and just squeeze him and cry. Boy do I cry. Tears streaming unending down my face. I am soaked in them by now.

They had hooked up an IV. We asked what was in it. Saline. Julie arrives. She shows me quickly how to use the nipple shield. He still won’t latch very well. She brings with her little cups and syringes for me to feed him my pumped milk with. I pump some and put it in a little cup and he drinks it eagerly. She cannot stay forever and leaves. Again, if I need anything, call her.

The saline bag is empty. The nurse returns with another bag. This one is different. I don’t remember exactly what it was but I associate it with sugar water. I wonder why something different but don’t ask. The family doctor from earlier comes in. He tells me that little man needs formula. Oh here we go. NO! I tell him he will not be getting formula. I have milk. He argues with me. Really? With all the dispassionate utterances he had, now is when he becomes animated? To tell me to give my child something that could harm him when I have the precious golden liquid that will cure his every ails? Shut up and get out! Now I am really angry. But I will become even more angry still. In time.

He walks out and accidentally leaves his paperwork in the room. I read it. Failure to thrive. Allowing the child to go home to his mother will result in death. Who did this asshole think he was? My anger builds. He returns. “Uh… I think I left my paperwork in here.” Yes you did, Dr. Dick. It’s over there. He takes his paperwork and walks out again. He returns a few minutes later to tell me his heart rate and temperature are not regulating and he will need to be transferred to a hospital the next city over with a NICU. He leaves again. This is thankfully the last time I see him.

The nurses assure me that I will be able to ride over with him in the ambulance and they would be here soon. I pack up my things. He lays there still hooked up to the machine, helpless and cold. I want to take him and run away. I want all of this to just go away. The nurse there is comforting and kind. I am thankful. The NICU transfer crew finally arrives. They consist of a neonatologist, Dr. Kim; two nurses; and the driver. They wheel in a huge stretcher full of more machines.

Dr. Kim begins asking me questions. He is thrilled to learn that I have so much pumped milk and is very supportive of me continuing to breastfeed. Take that Dr. Dick! He looks at little man’s chart and talks to the ICU nurse. He asks her, “Is this what you usually do?” referring to the bag of saline. She is evasive. “That is what the doctor ordered.” Dr. Kim continues to ask over and over before she caves. “No.” I wonder what that could be about. I assume it is the speed or the amount at which the saline was given.

They finally get little man into the little incubator like box on the stretcher. This is when I find out I cannot go with him. They would be taking him away. Away from me. This was the worst of times. I followed them out of the room. I followed them down the hall. We reached our elevator. They continued down the hall to a back entrance elevator. If I had not been so determined to meet back up with him at the NICU as quickly as possible I would have crumbled right there on the floor. Watching them wheel him away as I clutched his little blue blanket. This really was the worst of times. A gut wrenching pain encompassed my whole body as determination took over and made my feet move one in front of the other.

My mother drove us down to the hospital where he would be. I felt like I was on autopilot, going through the motions. All I wanted was my son. I wanted to see him, to feel him. It felt like time was suspended.

Embarrassed by Hollie McNish

Video

I love this so I had to share. No mother should have to feel embarrassed to feed her child. We’ve been doing it since the dawn of time. This is what we are created to do. That is why we have breasts that make milk. Why people still don’t get that is baffling. Oh yeah, because the media and our culture try to convince us otherwise. It’s time that we take over and show a new generation what it means to be woman, to be mother.