Post-Birth Story (NICU) | 2012 Edition

This was copied from my previous website. It was originally posted April 27, 2012.

Today is my son's due date. He is almost a month old.  

I read this out loud the day before I went into labor with great emotion to my unborn son. I find comfort in it every time I read it.

"Where can I go from your spirit? Where can I flee from Your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast. If I say "Surely the darkness will hide me and the light become night around me," even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. For You created my inmost being; You knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, I know that full well. My frame was not hidden from You when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be. How precious to me are Your thoughts God! How vast is the sum of them" Psalm 139:7-17

After giving birth, I thought that was the worst part of my hospital stay. I thought, that was so painful I am not ever doing that again. Nothing prepared me for what came next.

I was holding him after he was born and I wanted to nurse, it was always my intent to nurse within the first hour. I had heard there is a better success rate with nursing and it's of course great for the baby. The nursing staff was busy running around. I kept asking "Can I nurse him now?" I remember asking a few times. I finally got a response and I continued to ask "Can I have help?" As a new mom I had no idea what I was doing. I was confused since I had to talked to my midwife from the beginning about doing this and they said that there would be a lactation consultant available. I had no help.

They took him for his initial vitals and such. He had excellent Apgar results, but his temperature was low and so were his glucose levels. They then preceded to give him formula to help with his glucose. I didn't want him to have formula, but I just wanted him healthy.

They kept him under the heaters while we were still in the delivery room. They wrapped him up in a few layers and a hat, and we were off to the post-delivery room.

I was so exhausted I can't remember every detail of that day. I remember trying to continually nurse him with no luck. I kept mentioning it to the nurse that he wouldn't eat as we transferred rooms and when we were in the new room. He hadn't eaten in probably 5 hours. The nurse came in at that point to check his glucose. Of course it was low- he hadn't eaten. They called lab to come up since his numbers were below 40.

They tried formula feeding him again. His blood sugar was so low he didn't have the energy to do anything. He wouldn't take it. The nurse said she had to go get a feeding tube. And comes the first heartbreak of being a mom. I watched her shove that feeding tube down his throat while he choked and coughed, and then choked and coughed once again as she injected formula through it. All I wanted to do was cry, but I just tried comforting him with my voice.  

I was so exhausted I could barely keep my eyes open, but all I wanted to do was hold him because I knew he was cold. I called my mom and asked her to come back to the hospital and I needed to sleep since I hadn't slept since Saturday night. Kyle was already asleep right next to me. I dozed off.

I woke up and looked around the room. My mom was sitting quiet in the room's rocking chair rocking Hudson. For a moment I felt better. Then the nurse walked in again with a mobile crib.

"Say goodbye we need to take him to the special nursery"

Wow. Overwhelming emotion for an overtired, scared, new mom. It has taken me a couple weeks to even think about this moment in my life without crying.

My mom stood up with tears and her eyes as she kissed his forehead and walked towards me. I was doing everything I could not to breakdown. I took him in my arms which felt less than a second. Kyle had been sleeping since before the feeding tube and had just woken up. I looked at him and held our son out to him and told him to say goodbye. Then I lost it. Kyle had no idea what was going on. I had no idea that Hudson would be okay. Kyle said goodbye and they took him away. I rolled over and sobbed, blaming them for not feeding him. I fell back to sleep.

I woke up to a room full of family. I felt numb and tried to not let my emotion show. My exhaustion blocks my memory of the rest of the day. They brought in a pump for me. I was so fatigued that I can't even remember if I got to see my son that night, or if I had to wait until the next morning. I believe it wasn't until the next morning.

I was feeling a little better the next day with some sleep. I was so excited to go visit the nursery and see my son. He was in a heating incubator with an IV in his arm wrapped in tape, and machines hooked up all over him. He had scabs all over his little feet from all of the pokes. My son must have been experiencing such pain, and there was nothing I could do to comfort him. I caught this quick reflex of a smile in the photo below. It was like a small reminder that he was a fighter, and he would push through this quickly. 

I had the opportunity to hold him and feed him. He finally had an appetite. They let us come up every three hours for feeding time. His numbers slowly progressed for the better. I am so thankful for a great nursing staff. They made us feel welcome and that our son was in good hands.

They continued to poke him in his feet to check his glucose every time he ate and in-between. He was also borderline jaundice, which required filling a vile of blood every time they checked his levels. He was such a trooper and would only cry for a second. The tape was so tight around his little arm where his IV was, I could see where it was cutting into his skin.

He is such an impressive baby. I can't believe how well he did through all of his testing. It was a victory moment every time they were able to take him off of another machine. Everything finally resolved. He was in the NICU from Monday to Thursday, and we finally were able to take home a healthy little boy. He was perfect for being 4 weeks early. We are blessed it was only 4 days. We saw many sick babies there weren't able to experience a release so quickly; one being a 3 pound baby of a cancer patient. I loved being able to tell that mom how beautiful her daughter was. 

I am so thankful for a healthy, strong, little guy. He is so amazing and I can't wait to watch him grow and see his personality come through.

Lymphedema

I wrote this post on a previous blog I had in my early 20's. I haven't been able to come across much information on this diagnosis, but I have had the opportunity to connect with quite a few women on the topic. I believe so strongly about not being alone through our difficulties, and although I have lived with this diagnosis for 7 years, I still struggle with it. Here is my journey through diagnosis.

After two months of no answers, I received a diagnosis. I have had an urgent care visit, an ER visit, and hospital appointments with two different cardio-vascular surgeons. I have had an x-ray, ultrasounds, a CT scan, and lastly, a lymphoscintography test. Its been quite the ride. And it all comes down to this: I have Lymphedema. 

I have had swelling in my left foot since March 11th, 2011 with no relief in sight. I rushed off to the Urgent Care 5 days after my symptoms began. Being quite confident in what she believed it to be, my doctor immediately sent me over to the hospital to receive an ultrasound. At that point, it was believed to be a bloodclot. Being sent to the hospital was the longest ride I have ever had; it was the most anxious I have ever felt. My grandfather died of a bloodclot lodging in his lung in his 40's- I couldn't take my mind off of it. 

I finally got in to see the technician. She checked one area of my leg. "Good." She checked another. "Good." She check another. Silence. Fear then began to sweep through my mind. I am going to die. It sounds so dramatic reflecting back on that moment, but it was the scariest moment I have ever experienced. The technician finally finished. "Alright, everything looks clear." Breathe. After uttering repeated prayers, joy again returned. Thankfully my best friend was there that night to encourage me and stand by my side, Thanks Lindsay. 

I then began a series of appointments and testing with no answers. I finally saw a cardiovascular surgeon at Park Nicollet Methodist. He sent me in for one last ultrasound that was once again clear. In parting, he mentioned that I might have lymphedema. He said not to worry, that it would just be a nuisance especially for a 23 year-old and I may have problems with swelling when I become pregnant and that was it. This was the first I had heard of it, and didn't think much of it. He ordered a prescription for compression socks, said to make an appointment in two weeks if my condition didn't improve, and sent me off. Three weeks later I found myself at the ER at Mayo Clinic. 

Before my appointment, I decided to research lymphedema. I had no idea what it was. Have you ever heard of elephantitis? How about the elephant man? He had a severe, untreated case of lymphedema. Terrifying. I had no idea this could actually happen. No Cure. The pictures were even scarier. But my symptoms aren't this bad...

My mom is a medical secretary for a few doctors that work in the Mayo Clinic ER. There was one specific doctor that was following my case. He agreed to see me. He ordered some blood work, he was convinced I had DVT in the lower part of leg (bloodclots). These would be less serious and would just need to be monitered. My bloodwork came back negative. Still not convinced, he referred me to a cardiovascular specialist at Mayo. In two weeks I would be able to get in. 

It had now been 8 weeks of slippers, uncertainty, and swelling. I prayed the doctor would be able to look at my leg and just know what was wrong. He did and he was confident- finally someone was. He was still going to order a test to confirm, but he just knew. Answered prayer. We talked as though it was already confirmed. "Are you worried about self-image with the swelling?" I was having trouble blinking back my tears. "A little..."

I spent that night beside myself. There was so much uncertainty, so many questions. They ran through my head a million miles a minute. Finally morning came. 

I walked into my testing not knowing what to expect. I laid on the paper covered table and glanced at the counter with the cup of syringes. He explained what he was going to do: inject radio-active tracer between my big toe and the next toe over. On both feet. I laughed out loud. I passionately hate needles. The other technician said "This will hurt a lot, the tracer burns when being injected."Great. Thanks for the words of encouragement. She then went on to hold down my leg. They did my right leg first. Pin prick, burn, okay not so bad. They then did the left leg, my swollen side. That was a terrible moment.

I then sat still for an hour and half while a machine took pictures of the tracer moving up my lymph system. I laid there stiff. Thoughts were running through my head. Yesterday the doctor had said "Its not like we are saying you can never be pregnant..." What will my leg look like then? What if its both? Will I be able to ever be pregnant? If I do, will this be passed on to my children? Will the swelling ever go away? Can I ever wear normal shoes? Will I ever feel or look normal again... After finishing the first portion of my test, I was so distracted I forgot to push the button on the elevator. I had to come back twice that day for return scans only lasting 15 minutes each. 

Immediately following my last scan, I went in to see a lymphedema therapist. Thankfully, she was one of the sweetest, most encouraging ladies I have ever met. She saw and she knew. At this point, I was wondering why I didn't go to Mayo in the first place. She showed me a massage technique to reverse my changing skin texture (like wrinkles) and fit me for a wrapping boot. She showed me how to wrap. She got me an even better compression sock. "Wrap day and night for two weeks and the swelling should go down, yours will be easily controlled." Best news yet. "I have lymphedema and I have been able to control it and have no need to wear support garments" Also great news. I then finished my day with a follow up appointment with my doctor.

"It's confirmed, you have stage 1 lymphedema". Okay now what... Between listening to my therapist and the Doctor, I have a new view, Everything's going to be okay. One of my favorite lines from that appointment was "So if you are out mountain biking and you get a scratch on your leg..." Whoa. Wait. Mountain Biking? MOUNTAIN BIKING? I am going to be normal. 

Lymphedema is a chronic condition that may always stick around or it may go down and never show up again. There is no rhyme, no reason. There is no reason why mine decided to show. I had no indicators for it beside my symptoms. Normally, it is hereditary or from injury or following surgery. I take from it that my "channels" in my lymph system weren't fully developed at birth. The lymph fluid has a difficult time making it through my leg and gets "stuck", hence the swelling. I'm just thankful there is treatment. But since it is sticking around forever, I have to be careful. No cuts to that leg due to risk of infection, I constantly have to moisturize, and will be stuck wearing a compression garment the rest of my life. Oh yea, and there will be swelling. 

I am thankful for my situation. Sure, at times I will be self-conscious, but I am thankful its nothing worse. I am so thankful for everyone that supported me and prayed for me. This process would have been a lot more difficult without you. 

Update 7 years later:
I have learned to live with this nuisance. I am still so thankful that is all it is- a nuisance. Long hours standing, heat, stress; all triggers for swelling. I don't need to use treatment at this point, most of the time its not very noticeable.

My biggest help in maintaining this "nuisance" is to keep my weight down. I gained 50 lbs with my second son and the swelling was out of control. Other key factors in maintaining include occasional wrapping, exercise, and I use a couple Essential Oils. Please directly contact me if you are looking for the names and oils I have used. I do not sell them, but don't want the FDA to be unhappy :) 

If you are struggling with this, I would love to connect with you!

Tomorrow

A few years ago, I heard someone speak on the names of God. (Some of you may have heard this recently!) In the Old Testament, depending on their circumstance, people would give God a name. For example, Jehovah Jireh (provider), Jehovah Rapha (healer), etc. This speaker decided to give God a name for his circumstance, and his was Jehovah Frugal. His meaning was along the lines of "He does not waste my pain". I have decided to use this for my own life and know that no matter what I go through, my pain will not be wasted. I am sharing my pain in hopes that it will help another.

Dear Friend, my story is nothing; a waste of breath. It is a void if not shared with the intent of encouragement. Hope. Redemption. So please, share my story with those in similar struggles. Share it with those that feel hopeless and lost in any situation. God is faithful, just, and always right on time.

2015. What a year. I cannot believe all of those I have spoken to that have experienced the worst year of their lives. Nothing light- serious, serious matters. Life altering situations. I couldn't help but think, "What is going on?"

Our year started out exciting, new house and new projects. All quickly turned in to a difficult situation, which is another story in itself. The year started on a dim note.

Kyle and I had finally come to the decision, since we were in a bigger house and we were ready, to start the process of growing our family. In early June 2015, I was able to experience that unbelievable moment of seeing a positive pregnancy test. A few tears, a smile, and a giddy laugh made it a memorable evening. I had nausea before the positive test, a craving for pickles and pepperoni, and tired as could be. We were off to a great start.

I noticed my symptoms waning within a couple days of our news. I didn't think much of it, but knew that it was off. 6 days after finding out, I started to spot. I didn't think much of that either, since I had similar, yet different problems with my first. I had a call in to the doctor's office and let it be. I was told to come in the following day for blood work. Hours passed. A nurse finally called me, setting up a second draw 3 days later. My numbers were low, but still in an appropriate range. She gave me instruction in case I passed the baby over the weekend. I'll never forget how brash and matter-of-fact her words were. I hung up. Tears.

I have always been a believer in preventative prayer. "Please let us arrive safely", "Please keep us healthy", "Please don't let me get pregnant if it will end in a loss". Miscarrying was my biggest fear. There is not much else on this earth I wanted to experience less than that. The weirdest part is that I remember very specifically praying over my stomach- that everything would implant where it was supposed to go. I never thought one of those "side note" issues could become reality.

I was put on pelvic rest for the weekend. I didn't get out of bed much. I would have random bouts of hopelessness and tears, followed by confidence that everything was fine. I kept reminding myself that I was allowed to have a normal pregnancy. I had no more spotting, for the time being. I remember breaking down to my husband, weeping, saying " I don't want to lose this baby". His embrace comforted me for the moment, but I felt fear always creeping back in.

Monday came, and another blood test. What seemed like forever passed again before there were results. Your numbers should double with a healthy pregnancy, decline or barely increase with a loss, but mine was none of the above. I was up 1,000. Ultrasound. Empty sac. Mass in my ovary. I met with the doctor and she let us know of 3 possibilities. 1. Early pregnancy and cyst. Maybe my dates were off 2. Miscarriage 3. Abnormal pregnancy/ectopic. We set up another blood draw for later that week.

I went home and will never forget a life altering moment I experienced. A lesson I would never forget. I was taking a shower. Angry. I had tears streaming down my face. I felt betrayed. I felt abandoned. I yelled at God. I told Him how mean He was. I pounded my fists against that shower wall as if I was beating against His chest pleading my case. I said "you're mean" one last time, and my anger began to dissolve in defeat. My fists slid against the tile as I fell slowly to my knees. I uttered the words, "but I can't do this without you." I can't even describe to you the feeling that washed over me. Like peace; a flood of peace and calm. I had a strength I didn't know I could possess. This journey looked a lot different for me after that point. Not perfect, big guy and I were still fighting, but I had strength and peace to move forward. I knew that no matter how angry I was, He loved me through my pain. He was going to carry me and walk me through it, even though I kept Him an arms length away.

God has created us to feel a spectrum of emotion. He knows how you feel, what you think before it is thought or even spoken. Do you trust Him enough to speak it aloud? Can you bring those dark feelings into the light? He knows your inmost being. It is ok to yell. It's ok to tell Him how you feel. You can be angry. He can absolutely handle it. Just remember He didn't do it to you, and He's the only one that can truly bring you through it.

I was told to go to the emergency room if I had persistent pain on my right side. We ended up making a trip the next day as my pain increased. I was calm. I couldn't believe it. It was out of character. I was still in a lot of emotional pain. I laid in the hospital bed, being questioned and tested. The on-call OB arrived and confirmed the early suspicion of having an ectopic pregnancy. I was in no danger or in need of medical intervention immediately, so I was sent home. It was late at night, and we picked up Hudson at a friend's house. He was fast asleep. Our car climbed the last hill before we turned into our country home's driveway. We stepped out of the car  and there was something I had never seen before. The northern lights. An amazing array of dancing lights. A gift of beauty amongst our ashes. I was staring out in amazement as I decided to give my baby a name. Aurora. After Aurora Borealis, the northern lights. I needed my baby to have an identity. Even though we had a short time together, this child was mine. This child mattered to me. They were apart of me, and I needed to recognize that. I am grateful that peace was covering me in that moment. I celebrated a little life that night that would never come to be. Regardless, I dreamt about what could have been.

The next day more blood tests.This time we waited in the waiting room. Still Abnormal. Went up 1,000 again. We set one more round of blood work and would make our decision.

Friday came. Last set of tests. 1,000 again. I remember the doctor saying that something is happening in there. There is something growing. The pregnancy was not viable and needed to be taken care of. It became a medical concern before I could truly mourn my child. I am a researcher, so I looked, searched, and read. I understood about my ectopic pregnancy. I knew my options. I was also hoping for a ovarian ectopic, I read that generally those babies pass at around 4 weeks. That's when I had lost my symptoms. That means I wouldn't have to chose to end my child's life. They would have been taken naturally, but we just didn't know.

They gave us two options. Methotrexate, or surgery. Methotrexate is a chemo drug used to stop rapidly growing cells... like a baby. There would also be a chance it wouldn't work. However, my fertility would be saved. Surgery would be the most successful. She wasn't sure where the ectopic was- tubal or ovarian, so she wasn't sure what could be saved. My fertility would be lowered 15%. We asked for privacy to talk it over. We couldn't bear the thought of choosing to end a child's life, even though it would save mine. The doctor entered the room once again and we told her our fears. She tried to comfort us  in the fact that regardless, the "pregnancy" would never make it. That still didn't make our decision easier. As a parent, one of your most important jobs is to protect your children. I didn't have an option to protect this one, and I felt so helpless. Through tears, we decided on surgery. It was not going to be my fault to end this child's life. I would let her be the one to take care of it. I would go in for my surgery in the next two hours.

I prayed that this little one was no longer living; that nature had already taken its course. I prayed it with everything in me.

I was being prepped for surgery when one of the nurses brought over a folder full of "grieving materials" She was required to go over them with me, and I lost it. I could't handle it. It was the first time with medical staff that I felt like I had a sweet soul next to me understand my pain. Most of the medical staff would look at me, waiting for me to cry or react. She shed a few tears right along side of me. Bless her heart.

I can't remember how long the surgery lasted, but while I was in recovery the doctor came out to speak to Kyle. She proceeded to show Kyle the photos of my ovary and the difference between the two. My right ovary was 4 times the size of my left. She was unable to save any part of my ovary, and removed it in its entirety.

It was ovarian. A 1 in 3,000-7,000 chance.

I took a couple days to recover at home. My husband wasn't kidding when he vowed to me "in sickness and in health." He was there for my every need.

I was still numb from the events of the last couple weeks. The emotion of what I have experienced hadn't fully set in, but was beginning. We started watching Parenthood on Netflix to pass the time, and I'll never forget the moment Jasmine told Crosby they were expecting. I felt all of that emotion burst through. I am ashamed to say it, but it being a show with so much real emotion, I was waiting for her to lose the baby. I felt like I needed it. I needed to watch someone walk through that pain, because I was just so lost trying to navigate through what I was experiencing.

I had an amazing small group of friends come beside me during those couple days of recovery. Gifts, cards, and treats. I needed you. I needed that support. Thank you for being there for me. You were an amazing support and helped carry my burden. Thank you from the bottom of my heart. Life is too hard without good friends.

We were able to head up north while I continued to physically heal. The second day we were there, I received a call from my doctor. "The tissue inside your ovary did not confirm pregnancy." What does that mean. "We may not have gotten everything, even though we searched your abdomen thoroughly." The nightmare wasn't over. They sent the tissue into a different lab in the cities and had me return for more blood work.

I had my blood drawn the following day. Another long wait for results. If my Hcg dropped, we were good to go, if not, Methotrexate it was. The nurse called us in and gave us the news. It dropped. I replied with, "That is the best, worst news I have ever received." I walked out smiling. It was over, and I could focus on my emotional healing.

The tissue report concluded that it was in fact pregnancy tissue. I believed God not only answered, but honored my prayer. My understanding in it was that the baby had passed, and my body had already begun the process of absorbing the tissue- therefore making it hard to determine what it was.

I had a couple of women pour into me. Thank you for your words, for your journey, for your victories, and your encouragement. Your walk through your difficulty helped me make it through mine. To one of you, I will never look at a pearl the same. Thank you all for your words. When you have gone through something in your life, please, please be there for those walking through the same circumstance. It means more than you can ever know.

Most importantly, to the small group that knew, thank you for your prayers. I don't want to know where I would be without prayer and the Hand of God covering me.

The emotional journey was different than I expected. I had a lot of unexpected tears. I couldn't look at other's babies. I had a tearful breakdown in Target looking for diapers for my son. Seeing those strollers really got me. This is a heartbreak I would never wish upon anyone. It's not fair, and I don't understand why it happens. I had to distract myself from what week I would be on. I couldn't let myself think about how maybe, just maybe, my baby was perfectly fine. My baby could have been born, but my body was the reason they would never know how much I would have loved them.

We were able to start the process all over again in September 2015. Google can be bad, really bad. Why do people like to comment on forums when they only have bad news? I found ONE person in all my research that was able to conceive after having one of their ovaries removed. ONE. I was trying to prepare myself that I might not be able to experience having another child. If I was ever able to again, it could potentially be a while. September came and went, no baby.

October came and it was almost time to find out. I was impatient; so I took a test early. I knew it would be negative. I laid the test down and stepped out of the bathroom; I had to grab something. I delayed going back to look, avoiding the inevitable, and did some dishes. I was preparing my heart to handle what I knew I was going back to see. However, I spoke against it. I kept repeating "Allow God to be bigger than my circumstance." Over. And over. I walked back to the bathroom. It was positive.

Three feet away from where I fell in defeat months before, I fell once again to my knees. I sobbed. Uncontrollably. "Thank you, thank you, thank you...thank you." I composed myself and left that room with confidence and an understanding that my God has never failed me, and He never will.

I was in shock how quickly He answered my cry. I hate that I went through this, but I wouldn't give up the lesson I learned. I must have been too hard-headed and God had to really get my attention.

If nothing in my story inspires you, please take something from this. During the valley of my struggle, the Lord taught me this:

No matter how hard I try to plan my life, and no matter how badly I want to be in control of everything that happens, I can't. I can't escape the hardships of life. He promised me He would carry me, and walk through any battle I face. He'll hold me when I feel like falling, He will strengthen me where I feel weak, and He will give me peace when everything else feels like its crumbling. He spoke to my biggest fears and helped me conquer them, while never leaving my side. 

This lesson wasn't just words that were spoken. They were an experience that I felt. My God is so good, He is so real, and He is continually faithful. These words weren't just meant for me; they should be a part of everyone's lives, and anyone should be able to <insert your story here>. Doesn't matter what the circumstance is, it just matters if you are letting God honor His promises to you.

I've been waiting to share my story. I needed to completely come out of my valley and find the redemptive qualities of my journey. I have finally arrived. I am able to smile when I think about my Aurora. I can't wait to meet you one day, my love. I will celebrate this journey as my due date of February 9, 2016 approaches.

At one of my initial prenatal appointments, I asked about my scars from my surgery. They are raised and still red. I wasn't sure they were healed enough, or even properly. The doctor explained that we could do a procedure to help them heal a little better, and I declined. They are the only evidence that I carried another. That I was a mommy to another. That I will forever love another. I will proudly wear them like I will any other mark from any other one of my children.

I've had two mothers tell me that if it wasn't for their loss, they wouldn't have the next child in line, and oh! How could they not imagine life with out their next child. I may not have had been able to meet that baby, but because I couldn't, I get to meet the one currently wiggling inside of me. My miracle. My promise. God's gift.

Also, my current due date is 9 days after my one year anniversary of my surgery. God's timing is always perfect.

Isaiah 43:1-3 "...'Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior..."