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.
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.
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.
The 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.I 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.
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.
I 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.
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.
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.
Visitors 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.He 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.Monday 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.