Last Updated on October 6, 2020
Before I begin, allow me to explain “Nemo”. No, I was not breastfeeding a clown fish; however, he is somewhat of a clown now…lol. He adores Nemo and that is my little nickname for him. This is a very emotional story and I’ll do my best to get through it without shedding too many tears.
We had just moved to a new house that was much larger than our previous. My favorite part of the new house was a fenced in back yard! My 4 year old (Bookworm) and 1 year old (Turtle) didn’t mind the extra space but were more excited about being to actually play in the backyard at their leisure, instead of waiting to go to the park. Life was busy but life was good! I was losing the maternity weight I had gained from having “Turtle”, which was an added plus with the new home.
I was having the usual “pregnancy sickness” when I took a pregnancy test. Then I took another one. Then another one. I called my husband and he rushed home. We were both excited for another miracle that God had blessed us with! Good thing we moved because we needed the extra space for our newest addition. This time, I was determined to not gain too much weight. I put a plan in place to continue walking and working out to keep the unhealthy weight off. I remained disciplined with this plan and, at 20 weeks, I was doing GREAT with this.
At 20 weeks we went in for our routine ultra sound. I knew we were having a girl. I was determined we were having a girl. Why else would I tell my husband to “think pink”? Besides, after giving birth to 2 boys this one had to be a girl, right? Surely the odds were in my favor. Well, not so much. I learned that day that God must have a sense of humor. Needless to say, my Nemo was 100% boy! After a little bit of crying by me (another boy? seriously?) and consoling by my husband….as well as my husband laughing because we were having another boy….we left the hospital. Everything was good. God had given us exactly what our family needed and we wanted this baby boy so much.
Because my other pregnancies resulted in large babies (11.5 lbs and 8.3 pounds), my doctor wanted to monitor me more closely. A few days after our ultra sound, the nurse called me in for a sugar test. While taking the sugar test, my doctor’s nurse walked into the room and said she wanted to speak to me about the ultra sound. I had no idea what was so concerning to her. Immediately I thought my husband said something rude or obnoxious and it bothered the ultra sound tech. 🙂 But that would’ve been too simple. Instead, the nurse wanted me to know that the ultra sound tech noticed something during the ultra sound that was concerning. The nurse finally told me I was having a 2-vessel cord. Because of my knowledge and work experience in the labor and delivery field, she didn’t have to go into an explanation. I knew the risks. There was a possibility that my son could have downs syndrome but they wanted me to go to Ohio State University where I could have a 4D ultrasound and meet with the high risk staff.
The wait for the consultation at OSU seemed like eternity. My doctor wanted to run more tests; tests that we declined. There was a part of me that was very concerned, but there was another part of me that was at peace. I knew that God had a plan for this baby. He knew this baby before he was growing inside me. I knew that while doctors and nurses were there to guide us and to give us knowledge, God was the ultimate healer. He is the Author and the Finisher. God knows what we need and He knew what this baby needed. So with God as our guide, those tests were not going to change the outcome for this baby. Also, there is so much room for error in those tests. We felt it was silly to spend the whole pregnancy worrying about the “what ifs” when we should be embracing the pregnancy and trusting in the Lord.
The day finally came and we travelled to OSU for the 4D ultrasound. The high risk doctor came in and met with us. She determined he did in fact have the 2 vessel cord. She wanted to admit me and have more testing done, including an amnio. We asked her what good the amnio would do. She tried to explain that the test would determine if our baby had downs or worse, Edwards Syndrome. Once we determined if our baby had either of those, then we could determine our options. Options? What options? So I asked her what options she was talking about (some times I can be a bit sheltered). The options, according to the doctor, was to continue with the pregnancy or terminate the pregnancy. I was an emotional wreck. I looked at my husband and I could see he was furious! I will never forget what my husband said. He told her, “Ma’am with all due respect, abortion is NOT an option! If God has given us a child with downs syndrome, then so be it! If our child lives only for a few hours, then that’s a few hours we have with him! But this is the child we are meant to have!” So my husband grabbed my hand and we chose to leave there. Our trust in God increased that day. God blessed us with an overwhelming peace.
I continued to go often for 4D ultrasounds so my son’s growth and development of his vital organs could be monitored. The doctor never again brought up the “options”. My last appointment at OSU was when I was at 38 weeks. My son’s vital organs were fully developed. I thankfully was able to enjoy the rest of my pregnancy.
Nemo was born about a week after my last 4D ultrasound. His lungs were fine and he was a whopping 9 pounds and 7 ounces! Such a big boy!!! Right after the birth, the nurses took him and my husband to get Nemo cleaned up. When they brought Nemo back, I immediately noticed issues. He would not suckle. Most babies are usually rooting and ready to latch on to just about anything. Not him. He was so sleepy. I tried and tried to get him to nurse. We were both tired. All he wanted to do was sleep. I finally got him to latch. Woohoo! Wait…not so fast! He only latched once. I was able to get one..ONE…nursing picture before he went right back to sleep. He was already stubborn as a mule :). The nurse finally suggested that he was just sleepy. Some babies are like that she said and I should just be patient and that he would eat soon. Did I mention that I was a certified Doula? I participated in several deliveries and I have NEVER saw a baby this tired…..not even formula fed babies!
Our time in the hospital was spent mostly trying to wake him up to nurse. We tried everything. Feeding times would last forever!!! When I would get him to latch, he wouldn’t suckle. Instead, he would drift off to sleep. Did I tell you that I tried everything? I stroked his check; I took his clothes off; my husband changed his diaper regardless if it needed changed. I finally asked for a box fan in the room and would turn that on him while we wiped him off with wash cloths. We tried to make him mad enough to eat. I was in tears. I was exhausted. My husband was exhausted. I had tried every trick I knew to do. Finally the Lactation Consultant (LC) came by and encouraged me to pump. I did, thankfully. I tried to get him to take drops with a syringe after the whole nursing ordeal. I would try to nurse first before we offered the syringe of breast milk. The LC came back through and said some babies are just sleepier than others and that was probably his case. She said in a few days he would be ok. In the meantime, down’s syndrome and Edward’s Syndrome were ruled out.
The day came that we were finally discharged from the hospital. Now I could get the baby eating within the comforts of my own home. However, we had strict orders to get regular check ups at our Peds Dr because of his weight loss and feeding issues. As time continued, my baby continued to lose weight. We were going to the Dr almost every day or every other day. Nothing. What else could be done? Why was my baby not eating?! The only way he was getting any milk is because I was literally squirting it in his mouth. We even tried to cup and eventually bottle trying to and get him to gain weight. My husband was trying to wake him up one day and held him up on the kitchen table. That’s when he called me over. He said something was not right with his tongue. I came over to see and sure enough…there it is. My baby is tongue-tied! Could this be it? He’s not eating because he’s tongue tied? Of all the things that it could have been….tongue-tied?! We took him back in and the Dr clipped his tongue where he was tongue-tied. Finally we can put this behind us and get him fattened up. Yea, not so much. His weight still dropped with each visit.
( The Above picture has sent me to tears almost every time I see it since. This was when we really realized how sick he was. We had an early Birthday party for our other 2 and he slept for over 4 hours and never woke once. the only reason he woke when he did is I took him outside to try and get him to eat)
After 3 weeks of visiting the Peds, they finally said enough and admitted us to the hospital. I was scared they would try and force us to formula feed. I knew that breastmilk had more fat in it, which is what he needed to gain weight, so I wasn’t going to give up. They poked my poor son, they prodded him, they put an IV in his head. I was not sure how much more I could handle. I remember my husband praying with me and over our son. I remember I have never saw him more upset either. We both just wanted him to be ok.
We spent several days in this local hospital. They continued to run tests. They continued to weigh him before and after each feed. Then they decided that they would not be able to help him. They said he needed more testing done. Testing that they just didn’t have the capability of doing. We were transferred to Children’s Hospital in Columbus. During this time my husband was at work. I drove my baby and my other two boys to Children’s. I cried. I prayed. I reminisced. What did I do wrong? What did I miss? I had successfully nursed 2 other children. Why was this one so difficult? What was wrong? How can I fix this so my baby can thrive? I was still convinced breast milk was the best thing for my son. I was determined that unless they could test my milk and prove it unfit for him, I would continue to try to nurse him.
My husband and mom met us at the hospital and my mom took my other 2 kids back home. My husband and I watched as our baby got poked and prodded again, although here they were much better about getting an IV into him. The nursing staff was extremely nice. They brought us blankets and welcomed us both to stay the night. The nurse brought me a pump so that I could continue to pump. I was starving and hadn’t ate. The nurse sent my husband and me out to grab a bite in the hospital cafeteria. She assured us she wouldn’t leave my baby and would call if he woke to eat. We were grateful for the 20 minutes to eat and regroup.
At this point, Nemo was looking horrible. He looked really bad. He was so very sick. I began to wonder if he was going to live or die. Thankfully, my husband’s work granted him some days of emergency leave. That meant I did not have to be at the hospital alone. I was so thankful to God. While in the hospital, my middle son turned 2 and my oldest turned 5. My husband took them to the food court in the hospital and then to a family room downstairs where they could play for a bit. I was grateful to my mother who dropped everything and came and took over with our other 2 children. My Dad, who never once complained about my mom coming, just wanted the baby to be ok. I am thankful to friends who dropped everything and made the trip to bring us food, snacks, and Bible verses wrote out so they were handy for me to look at. I am thankful for friends who came and prayed with us. I am thankful for all who couldn’t be there but lifted up that sweet boy in Jesus name! I am thankful for our church family who were ready and willing at a moment’s notice to do anything we needed. They were so helpful and thoughtful in taking many meals to my mom and my other 2 boys.
The days were so long. It seemed they tested our son for everything and anything. All the tests continued to come back just fine. It was frustrating not knowing, yet comforting in knowing what he didn’t have. Finally, an Occupational Therapist came and observed my son nursing, she along with another LC. Immediately she noticed that the left side of his eye and mouth were a little droopy. My son would nurse for an hour, and that whole time would not take in one ounce of milk. Not a single drop. His weight would actually be less because of the stress and energy he was using to try to nurse. I was in tears again by the end of this session. How could I help my son? They both were so kind and assured me that quickly we would get answers. She contacted a specialist and he came in and saw my son. He immediately noticed the same things she did and said my son would need an MRI. In the end, we discovered that my son had a stroke in utero and that was the cause of his feeding problems.
Finally! An answer! Awesome…New Worry! Remember when I told you that I was relieved in knowing the things my baby didn’t have? Well, who would have thought a stroke would be my new worry? A stroke? In utero? Seriously? How? Why? How would this affect him? What would his life be like? It was determined that it was a mild stroke. The Dr told us that many times with the right care a child can recover from a stroke. He said breast milk was one of the best things to help overcome the stroke. So, now the question was how do I get him to take in the breast milk? How do I get him to eat? We had tried cup feeding, syringe, and bottle. Nothing worked.
I was still grieving the loss of being able to get my son to nurse. I wanted that closeness that I had with my other two boys. I wanted to not have it to be such a fuss to just feed my son. I wanted to just sit and hold him, nurse him, and look at him. However, sometimes what we want is not reality. Sometimes our best laid plans are not the plans God has for us. This, I believe, was one of those plans. The Bible tells us that God has plans to help us prosper and not harm us. That includes nursing. While yes, it hurt clear down to the core of my heart, the world was not going to end. Time was going to continue. Now it was time to be a big girl and put on my big girl pants and help my baby.
I had to find something that worked. Nursing? No. Cup feeding? No. Syringe feeding? No. Bottle feeding? No. Wait….bottle feeding? What about a different nipple on the bottle? Luckily, the hospital had a couple different nipples and shabam! I found one. Out of all the nipples I tried, only one was the kind he could transfer milk from. His mouth still leaked milk but he was actually eating now! Besides, some was better than none. So I sent my saint of a mother out to buy several more to have on hand. God had blessed me with breast milk and LOTS of it. Thankfully I had been smart enough to pump consistently. If I had not, my milk would have dried up and I would have been (as my husband says) “stuck like chuck”…whatever that means. I had milk but still had to increase it because the demands of a baby exclusively pumping were going to be different than one who is nursing directly from the breast. I made google my friend and researched as much as I could about babies who exclusive pump. A course of action was put into place by myself and the staff at Children’s. I would nurse him for so long on each side, regardless if he wasn’t transferring milk from my breast, because this would stimulate milk. I could only do it for so long as I didn’t want to tax him or make him more tired. After a certain amount of time, I would make sure he was awake and give him a bottle of my milk. For a while, my husband did all the bottle feedings or my mom did. It was an exhausting time. I constantly had a breast pump attached to me.
I was still trying to hold onto a glimmer of hope that my precious baby would latch on and all would be ok. I still went 2 times a week to Children’s to meet with the LC and occupational therapist, who I have to say were both amazing. They did all they could to help us out. Eventually my husband drove 2 hours to buy me a supplemental nurser that is used by adoptive moms. This helped us out more. I could feed him at the same time as he nursed, so this cut out half the feed time! However, this was really hard to use when out in public. I couldn’t just throw a blanket over and nurse. So I spent much time at home.
One day I was reading over the scriptures that my friend had gave me in the hospital. Then it hit me. Why was I doing this to myself? God had blessed me with milk. I literally had enough milk to feed a small army. I had a precious baby boy who was not as tired as he once was…and he was GROWING!!!! Why was I doing the supplemental nurser? Why was I still trying to force my son to nurse? This was not in God’s plan this time around.
My husband was at work that day when I finally came to peace with this. I allowed myself a good cry. I grieved over what would never be. I grieved over the loss I had experienced. I wanted to nurse him so bad. Then I looked at my son. My precious gift from God, who not so long before that, was given a failure to thrive and many had given up on. He was close to death, but God was slowly healing him. He was still droopy but he was eating, growing and very happy. He was learning new things all the time. The stroke had not affected his brain that we could tell. So I let it go that day. Even though I am a die hard breast feeder, I put away the nurser and decided I would continue to pump. I would just stop the latching process, the supplemental nurser, and all the extra time I was taking to force him to nurse. Follow God’s plan. What’s in the best interest of my baby? Nursing or getting him healthy? I also had 2 other children who needed their Mommy too.
After grieving, I felt peace. I remembered in James it speaks about the trials of our life and how they are meant to bring us closer to the God. I also remembered that all things happen for a reason. I had already learned much during this journey. I still had a lot to learn. I was judgmental. There I said it…..I was judgmental! When I saw a baby with a bottle, I would have think to myself, “Why doesn’t that mom nurse that baby”, “That mom is so lazy!” and many other thoughts. And then here I am. I am that mom bottle feeding her baby. I became the mom with the bottle. Before my Nemo came along, I would I would look at the mom and wonder if she was a nursing mom or a bottle feeding mom. What did I learn from Nemo and his struggles? This momma got an attitude adjustment! I repented of my judgmental ways and asked the Lord to please teach me to show more grace in this area. Don’t get me wrong because I still believe….I know…. breast milk is the best thing a baby can have. I have just grown up a lot in my attitude.
As time went on, Nemo continued to grow and thrive. I pumped for him for 13 months and then I hung up the horns:). I was really proud of how long we kept it up, even after my husband deployed. This year, at 4 years of age, Nemo was reevaluated. He has no signs of ever having the stroke. In the military, when a child has a problem such as Nemo had, they have to be enrolled in the Exceptional Family Member Program. This keeps a Soldier’s family from being sent where there are not services to meet the needs of the child. This year, Nemo was removed from this program. It’s as if the stroke never happened.
He talks non-stop! He eats just fine now and is just such a joy to us….except for that 4-year-old attitude thing! LOL! I am amazed at God’s grace to us through healing Nemo. I am amazed at His miracles and am blessed to have witnessed one of his miracles. I am also amazed at the power and gift of breast milk. I know that the healing properties in breast milk had a hand in healing him and every one of his doctors, consultants, and therapists have all agreed with that.
Writing this story was not easy. It takes me back to a place where it was really one of the darkest in both mine and my husband’s life. It has been difficult for me to talk about this, let alone look at pictures from this period. However, in time, healing does come to all of us. My healing came by seeing my baby boy grow and thrive and do all the stuff that boys do. My healing came when he said “Momma” and “I love you”. He is a miracle baby. He is a miracle each day. I hope sharing my story allows others to think about how wonderful breast feeding is and how healing it can be. I also want folks to see my story and see how God’s hand and healing touch were there all along. It was God who led me to pump. It was God who lead us to the right medical team; one that would not push for me to give up and give in to formula. It was God who put my husband there to tell the doctor that abortion was not an option. It was God who held my husband and me in the palm of his hands when we really felt we would fall. It was God who blessed us with our miracle.
( Caleb today…he turns 5 in January)
If you are breast feeding, don’t give up! Your miracle story awaits!