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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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.