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Monday, December 22, 2014

preemie strong by Crystal Tenney

I am so honored to feature this STRONG MOMMA Crystal Tenney, who delivered her little one 6 weeks early. This little preemie fighter is the love of her life - and her difficult story shows you exactly why. I cried reading this, then felt so empowered... like if this momma can beat this situation, any of us can get through whatever else we are worried about or fearing with our babies. Seeing this picture below makes me smile just thinking about all this mom went through to bring this handsome guy into this world. They are glowing together! 

Thank you, Crystal, for sharing such a personal yet uplifting story to the rest of us. It's definitely made me see pregnancy and all those other mom-related things with a new light, seeing that for some it's a struggle that doesn't come easily, and how much moms may be seen as FIGHTERS like you. 

Above all, I looooove Crystal's advice to be Mommy Proud! She wants us to compliment ourselves, to accept compliments from others, to know how great we are and strong we are as mothers. We deserve to take moments out of our days to realize how AWESOME we are. I love this philosophy! 

Moms, you will need tissues to read this. It's very powerful. 

All images from Crystal Tenney

1. When was your baby born - how early from your due date? What is his/her name?
It was odd because my son’s, John, due date kept changing from the very first day I found out I was pregnant, however he was born 6 weeks and 4 days early from the last due date we were given. It we went off the very first due date then he would have been nearly 9 weeks early. John was born on July 22, 2011- that week we were in the hospital we had hit record high temperatures, the hospital lobby had to turn off the AC so they didn’t blow out any generators. They were only pumping AC to the rooms that needed it; luckily I was in one of those rooms!

2. What was it like those first moments realizing your baby was on its way too early? How were you feeling? Was there any reason why you went into labor early? Can you describe how this went for you, what happened to make you know you were having the baby then?
I was told to be prepared for premature labor/baby around the same time I found out I was pregnant (in my second trimester). High risk pregnancy pretty much right off the bat! So I made sure I had a great support system and didn’t go to any appointment alone, “just in case” and for a second set of ears. For some reason, any time a doctor would talk to me about something serious, their voices would sound as though they were trying to communicate with me while my head was submerged under 100ft of water. Probably because there always seemed to be bad news with every appointment, so it seemed. 

We had just had an appointment with the Fetal Specialist JUST a day before and it went surprisingly very well, a good appointment was few far and in between. So, I assumed ‘not much could change in a day’ when it came to my next appointment and talked my fiancé (at the time) into going to work and saving his time off for when the baby was really here. Of course the ONE appointment I went to alone had to be ‘THE’ appointment I would receive the news. I realized something wasn’t right when the appointment was taking a lot longer than the previous ones and I began to worry when the technician had me go back to the waiting room to wait for the doctor. Typically the doctor would come into the room after the technician was done. Not to mention, the Fetal Specialist had always been VERY through AND efficient with his time. I started to get a ‘this isn’t going to be good’ feeling. So, there I sit in the waiting room alone; naturally the longer I wanted the more anxiety was brewing inside me. When the Fetal Specialist came out to get me, the look on his face (gosh I’m tearing up as I write this!) was blank and incredibly worrisome. We had always joked before; he had the best personality (perfect for his job!). 

His serious demeanor caused instant tears; he hadn’t even spoken a single word but I was already crying. “Is there someone we can call?” He asked calmly. WHAT? WHY? I started to panic as I explained I had driven OVER an hour to make the appointment (he had two locations, one in Dover NH and the other in Manchester NH), since I had to have an appointment at the furthest location there wasn’t anyone to call that was a quick drive down the road. Side note- At this point I had been on bed rest since I was 28 weeks (and partial bed rest at 24 weeks prior) already fighting pre-eclampsia, gestational diabetes, my kidneys were shutting down and my pancreas was also in rebellion. To top it off, my body had been attacking the baby (literally, trying to kill this little life growing inside me) since before I learned I was pregnant. At this point in time by body could do one of two things in a heavy effort to kill my baby- 1. Remove all of his blood from his body or 2. Give him too much blood where his blood would turn thicker than molasses and cause him to go into cardiac arrest while I was still pregnant. 

Initially, I refused in-utero blood transfusions (all of them) as this was the cause of everything my baby and I were suffering through! I had a lifesaving surgery when I was 16 years old (over ten years ago at that point) that would have turned deadly if it weren’t for a massive blood transfusion I had received. Unfortunately the blood I received wasn’t compatible with my blood and it’s been a battle inside my body ever since, completely unbeknown to me! So, here I stand in the corner of the cold lobby (that all of a sudden got incredibly hot), I remember thinking, ‘…. Here it comes….’ I honestly don’t remember much of what the Fetal Specialist said except he spoke in a slow voice, not breaking eye contact, “Your baby, right now, is severely anemic and needs a Level three NICU where he WILL receive a blood transfusion upon his birth. I have called every hospital in the North East with a Level three NICU and there is one hospital who has the space for your son.  I have called an ambulance for you and you will be headed to Beth Israel Decanis Hospital in Boston. Your baby is very sick right now and we need to get him out… Nod your head if you understand what I just said.” I nodded but also shook my head in disbelief. I wasn’t prepared! My first thought was, ‘MY BABY!’ followed by ‘I don’t have the diaper bag with me (which was packed three weeks prior), the car seat, a bag for me, my car, I can’t ride in an ambulance, THE BABY!’… I looked at the doctor and said, “How long does he have?” Those words still echo in my mind to this day. We were down to the wire and a race literally against time to save him. The Fetal Specialist looked at me, I don’t think he has blinked yet, “You have less than 24 hour to do this on your own or we are going in after him”. I was grateful the Fetal Specialist was trying to recognize my birth plan and help me realize I could have SOME control over the situation (so as long as my body cooperated). I said, “OK. I can do this! I will be driving myself to Boston. Thank you for the ambulance however I will get there quicker if I leave now and drive myself.” The look on his face was disbelief and ‘you got this’ all wrapped up together. I had to sign a waiver rejecting the ambulance and off I went. 

I remember being SO swollen from the pre-eclampsia that I could barely flex my foot for the gas pedal. To top it off I drove a standard! But, I had over an hour drive to Boston (from Manchester WITH commuter traffic!) and limited time to start preparing to have a baby, 

so I fought through all the pain, swelling etc and kept talking to my baby, “It’s OK. Mommy can do this. You’re going to be great! You’re going to be fine. Mommy loves you!! Mommy won’t let anything bad happen to you. Mommy loves you!” Over and over and over I would repeat this promise to him. I realized that I wasn’t quite emotionally prepared for this, despite thinking I was; I but I wasn’t even close…. 

Actually, I wasn’t emotionally prepared at all!! I made all of my phone calls on the way, notifying family, friends, work, etc. Made the arrangements to get everything to the hospital for myself and the baby. When I finally made it to the ICU Maternity Ward at the hospital I could hardly stand, let alone walk. Luckily, they started everything right away, didn’t waste a single minute! Even though I started having contractions early around 24 weeks, I wasn’t dilated (which was good, at 24 weeks), except I STILL wasn’t dilating despite all medications inserted into me. They couldn’t start the petosin unless I was dilated. The window for a natural child birth was closing rapidly. 

When I came to terms (shortly before the doctors) that my birth plan was completely out the window, every comfort thing I needed, NOT happening. Nothing I wanted was happening. I  had a horrible anxiety attack, emotionally I felt like I was spiraling out of control. I felt like I had not only failed myself but I was failing my baby!! I felt that if I could control the birth (which was MY responsibility) my son would be OK, he would be born healthy and we could take him home that day!  So when I realized I did not have an ounce of control over the situation and it was NOW officially out of my hands I feared for my baby, I felt helpless towards him. I felt helpless towards myself. 

Then I got an overwhelming feeling that something wasn’t right with the baby, despite the calm reassurance from the doctors. I felt something they couldn’t see on the monitors.  It was 4:30am when a doctor came in to calm me down (they nurses must have warned her about my complete and outrageous freak out!) she started to have the “let’s go over your options” conversation and I remember interrupting her and kept repeating, “It’s time, he has to come out. I feel that something isn’t right, get him out NOWWWW!! I have until THIS time to get my baby out and there isn’t anything you are doing that is getting me closer to this… please, listen to me, something is WRONG!!” She tried repeatedly to calm me down and I kept explaining that I had been right about my baby this entire time. When something was ‘off’ it’s because there was something wrong. I told her to get my medical records and I recited everything for her- when I felt a certain way, I went to the doctor or ER and sure enough something was wrong. She looked at me and said, “OK. I’ll be right back.” An hour later another doctor came into the room, I remember singing papers and an hour after that I was being wheeled into the OR. I remember being fixated on the clock; every minute that went by it meant I was quickly approaching the deadline I needed my baby out. I closed my eyes and put faith into strangers (who were all VERY nice!); I relaxed myself (it was the only thing I could control at this point) in hopes of relaxing the baby. Actually, one of the nurses looked at me and said, “This is the most relaxed I have seen you since you came in!” It was actually reassuring to hear that. It was explained that they would do an initial assessment on the baby, if he looked good I could see him for a split second then they would have to take him away. If he didn’t look good I wouldn’t see him until they felt he was ready (which could take DAYS!!). He cried right away, HE CRIED!! That was the most amazing sound I could hear!! I got to see him for a quick minute, but the doctors boasted about how great he looked, his color was great and a nurse screamed out his weight  with relief “SIX POUNDS AND THIRTEEN OUNCES, MOM YOU ARE AMAZING!!” No one could believe how great he looked. It was VERY reassuring. Then they whisked him away. He was born 7am on the dot and our deadline was 8am. 

After the procedure I was brought into recovery for a couple of hours, which is typical. However, after a couple of hours I went from being number from the waist down to being completely numb (can’t move or feel anything) from the neck down. I couldn’t lift my hands. I felt as though I had been buried in cement with an extreme case of Elephantitis. No joke! It was discovered my spinal cavity is narrower than expected therefore my epidural needle was placed too far in. Despite my epidural being removed things only got worse for me, and my breathing was starting to get difficult, as I couldn’t expand my chest and was put on oxygen. It was explained that if the epidural didn’t wear off in 2 hours it was possible my entire body would be paralyzed! I was more upset at the fact I couldn’t hold my baby. The news was surreal to me. How can I bring this beautiful baby into the world and NOT be able to ever hold him or care for him, I’m his MOM that is MY job!! I remember the look on my (then) fiancé’s face. I demanded that he “pump my legs” like I was riding a bike. He worked on each leg switching it up every five minutes. My hope was the “pump” this through my body, and I would be fine. We had passed the two hour mark; I still couldn’t move my body. BUT I didn’t give up! I made my fiancé pump my legs for over an hour (bless his heart), I think he thought I was crazy but did it to make me feel better! I was given a drug that knocked me out (I started to have another anxiety attack!). My fiancé went to have time with our son, while I tried to sleep off this epidural. Finally, after being in recovery for over 8 hours, the epidural medications were wearing off, and I was slowly gaining feeling and movement!! One more hurdle to overcome was scooting myself off the gurney to my hospital bed with limited help and out of ICU Maternity. I was ONE step closer to being able to hold my son in my arms!

3. What were your fears about having a baby come earlier than expected?
I knew having a premature baby also meant A LOT of special exceptions! I did a lot of reading while on bed rest, which was both good and bad. I knew his immune system would be very weak, so I did a lot of reading on how to keep him healthy and how to get his immune system to get stronger as the days went by. That forces you to walk a tight rope of trying to keep him away from germs, but NOT far enough to where he couldn’t slowly build his immune system. 

It was hard, constantly second guessing yourself, “it’s a little windy, maybe I won’t take him outside today”. Or, “today he seems OK maybe I can go to the grocery store with him; I’ll make it a quick trip”. You want to do what’s best for your baby while receiving (unwanted) comments from ‘those who know best’ that try to force you to alter how you take care of your baby. “Take him outside; fresh air will be good for him”. Sure, that’s probably true in some aspects however it can ALSO be harmful for him. Most times, trying to weigh those waters was probably harder than actually having a newborn! 

“Breast is Best” my team of lactation consultants pushed on me my week of recovery in the hospital. He was too weak to latch and suck, so I pumped then bottle fed him. This was great as I knew the breast milk would help his immune system gain strength. I wasn’t expecting to have my breast milk come to a screeching halt around the same time as my son’s original due date. Yes, that happened despite ALL of my best efforts to prevent it. So, I went back to the drawing board with other options to keep him healthy with formula; more reading and research. There was the fear of his feedings, because he was premature he had to eat 1oz every hour on the hour for the first 2 months. Then he was to be fed 2oz every two hours for two months. Then increase the amount to 4oz every two hours. The hard part is that because he ate every hour since he was born, he pretty much always had to eat every hour ON THE HOUR until he was about 5 months old. If you were a minute late feeding him he was hysterical for 20 minutes, too hysterical to eat. So, that was very hard. To watch your baby in hunger pains. Luckily, with the ‘cluster feedings’ he was sleeping through the night by 5 months. I was thankful I to have been a stay at home mom, therefore I was able to make sure my son had his around the clock feedings for his first 5 months. I was a stickler (more like neurotic!) when it came to his feedings! But we got through it, together!  Also, I realized when John was 4 weeks old he wasn’t “tracking”, when he was first born one of his eyes wouldn’t open, if it did it wouldn’t stay open for long. Just before he turned 6 months he had to see an Eye specialist every 4-6 months, who monitored the eye and its development. Up until a few months ago we didn’t know if he was blind in that eye; turns out he has perfect eye sight! Also, as he got older I helped with him meeting his mile stones early if not on time. I wanted to help him with his development. Which now that I think about, was in its self a premature thought; babies will develop on their own time regardless when they were born.

4. What sort of practical things did you not get to do before baby came that you had planned on doing?
Practical things? I pretty much threw that out the window when I found out I was pregnant and already in my second trimester, the same week found out my pregnancy was high risk and my baby was fighting for his life. 

It seemed every week from there was bad news followed up with more bad news. My body was killing my baby and my baby was killing me. I was so sick. I was so tired. I was so weak. There wasn’t anything I could do to help the situation but there was a very long list on how I could make it worse; the list seemed to grow each week. I remember one appointment with the Fetal Specialist he gave us a ‘heads up’ to get ready for the baby. Therefore, we had to bump up our baby shower by 3 weeks. Actually we had our baby shower one weekend, moved to MA the following weekend and had the baby the very next weekend. Talk about a roller coaster ride! My (then) in-laws went to our house in MA (It was over a 2 hour ride for them) during the middle of the summer to unpack and set up the baby’s room. Bless their heart! 

5. How long were you in the hospital with your baby? How long after you left was your baby still in the hospital? 
We were in the hospital for 7 days, exactly. I was very fortunate that I had amazing health insurance for the baby and me. I was recovering from a cesarian section for a week and that was also the length of time my son had to stay in the NICU, although they allowed him to be with me for visiting hours during the day, but wanted to keep him in the NICU throughout the nights. Mostly so I could rest, my body went through a whirl wind throughout recovery. Although, toward the end of our stay, I was able to have John in my room the last few nights. 

6. What was it like being away from your little one so quickly after his/her birth?
When he was brought into this world I got only a few seconds with him, he cried in my face while I kept whispering “I love you, I love you, I love you” over and over again. I didn’t know what else to say to him. I just wanted him to feel my love so he would fight harder. Turns out, being born into this world was the easier part for him; it was being inside me that was the actual hard part. 

I’m blessed I didn’t have to stay away from him that long (mostly the recovery from the epidural). Luckily, his dad was able to spend time with him in the NICU also, I wish it could have been me; however as long as he had one of us, that is all that mattered! 

7. What is your advice to anyone who has to leave their child in the hospital after birth and go home? What helped you? 
Fortunately, I got to go home with my son. I don’t know if I would have been strong enough to leave him alone in the hospital. So, I can’t offer any advice on this; although I imagine, because he is my first, I wouldn’t have left his side NO MATTER WHAT. 

8. What have you learned from this experience of having a premature baby?
Honestly, I have learned a lot about myself mostly. I am a lot stronger than I give myself credit for. I think back on everything I went through and try to wonder what my reaction would be had I heard my personal story as though it happened to someone else. It really puts things into perspective on how strong of a woman I am capable of being, but even more so how strong of a mother I am for my son. There isn’t anything I wouldn’t do for him even to this day and he’s just over three years old. Also, putting faith and trust into the medical professionals- they really do know what they are doing, even if I don’t. 

9. What sort of medical situations was your baby placed in from being premature - tests they ran, equipment hooked up to, frequent doctor visits, things doctors were concerned about after you went home even, etc.?
It was weird because we were always told from the moment we found out we were pregnant to “hope for the best, but expect the worst.” I wasn’t expected to get pregnant and there I was 12 weeks pregnant. I wasn’t expected to carry past 24 weeks and there I was at 34 weeks. I wasn’t expected to deliver a healthy baby and there he was 7lbs 13oz and 21 ½ inches of big cut babyness. 

It was expected he wouldn’t be healthy, but no one knew what that meant. He was born with a heart murmur (benign). He was born expected to have a blood transfusion the moment he was brought into the world. I begged and pleaded the doctors hold off. I knew he was a fighter, I knew he was strong; unless it was a life or death situation, I wanted him to have his chance at a normal life before they injected him with someone else’s blood. People get upset with me and say “Your baby was born premature, severely anemic and you withheld a blood transfusion!!” what people don’t understand is THAT is what got us in the mess to begin with! 

My red blood cells do not carry a certain protein antigen, I was born without it. This is FINE, until I am given blood that does not carry this protein antigen. This has caused both types of blood to fight each other; they will continue to fight until the day I die. Due to this fact, I am always sick; reoccurring cancer cells because my body is too busy using its strength to fight a blood transfusion that it will never get along with. I’ll contract a cold or flu from you before you show symptoms. If I do get said cold or flu within days it will turn into pneumonia. I’m always tired. I am always weak. My work vacation days have always been used for sick time. Unfortunately, my body will never stop fighting the transfusion; there isn’t anything anyone can do. I remember crying to my doctors saying “How is it possible for a blood transfusion that literally saved my life is capable of ending the one growing inside me?” Refusing those blood transfusions was not an easy decision, I second guessed everything!  I was preventing my son from being forced to live a life that I had been living for over 10 years. I wanted him to have a chance at a healthy normal life. Therefore, I am extremely blessed and lucky to say the doctors carried out my wish, they held off on the blood transfusion for my son (although the line was drawn just in case, all they needed to do was hook up the bag). My request was they wait five hours before inserting the line, unless it was a life and death situation, then of course I would rather my baby receive the blood transfusion. Around the hour three mark my son proved to be the fighter I knew he was! He made doctors a believer as they said this was something they’d never really seen from a baby in my son’s initial state. My son’s body kicked it into high gear and his own bone marrow became an instant ROCKSTAR increasing his red blood cell counts at a rate that deemed his levels normal by his three day birthday. AMAZING! All of the doctors and specialists were beside themselves! I knew he could do it, I felt the strength of his kicks and punches inside me; he was strong! Once we were home he was happy and healthy. His only complaint about being brought into this world was that he relies on mommy, which I was/am MORE than happy to oblige to. He’s three years old now and this is still the case; I wouldn’t have it any other way! 

10. How old is your child now, and how is s/he doing? Give us 5 words to describe this little wonder!
John is now 3 years and three months old (almost three and a half!). He is doing amazing, healthy as can be! Five words to describe him: Smart, Happy, Funny (He loves to make people laugh!), loveable, sarcastic, inquisitive, sensitive, understanding… Oops, that’s more than five, sorry!

11. How do you think this experience has made you a stronger mother?
I learned from my personal health issues to be my own advocate during certain situations.  You know you better than anyone, regardless of any degree. Therefore, the same goes for your child. 

Finding a doctor that will listen to you is KEY. There are some things our children will go through and we want to be able to feel comfortable seeking an answer, and if we aren’t satisfied with that answer to follow forth until we are. My son has had a few health concerns (not issues), but to be OK with asking questions (even if we think they were dumb) but always having a piece of mind when it came to my son. I never wanted to be that mom who brought her child to the doctor for every single reason and made it into a big deal. At the same time I didn’t want to be that mom who brushed off certain signs and then ended up with a very sick baby, when it could have been easily prevented! I realized I asked more questions to my son’s pediatrician than I did my own doctor. Always being prepared, equipped with questions, doing my own research and knowing some answers before asking the questions. I want to make sure I don’t have any outstanding questions, concerns or worry after leaving a doctor apt with my son. This has turned me into my son’s biggest advocate, his number one fan and his fighting partner and the BEST mother I can possible be for my son!

12. If you were pregnant after this experience, did you fear going into preterm labor again? How did you handle that during the pregnancy? 
This question is hard for me to answer. I haven’t been pregnant again, as I was told another pregnancy could result in one of two things- the same thing happening OR worse, where my life would be affected (again, pre-eclampsia, gestational diabetes, pancreas functioning below level and my kidneys beginning to shutdown) and there would be no guarantee my body would be strong enough to fight therefore any damage caused by a second pregnancy would not only be irreversible but also deadly for both baby and myself. I was told I was lucky, my baby was nothing short of a miracle and to count my blessings. I am not with my son’s father anymore however have been in a long term relationship with my boyfriend. I know he would want his own baby someday (as I would want another one also), however he truly understands that may not happen.  There have been conversations about adoption or surrogacy, but nothing for the immediate future. Honestly, I’m greatly enjoying my son at this age and I wouldn’t be too upset if he ended up being my only one and my boyfriend feels the same way. 

13. What is something you think others don't know when it comes to premature babies?
You are stronger than you think. Your baby is stronger than you think. Everything happens for a reason, there are no guidelines or rules and everyone is pretty much winging it just as much as you are. Listen to your gut! The doctors and nurses ask me “What made you want to hold off for the blood transfusion? How did you know!?” and all I could say is, “I just knew”. You know your baby even as they are growing inside you what type of person they will be. Be their voice they don’t have. Also, be willing to accept medical advice/compromises even if you don’t agree with it- this was hard for me.  

14. People refer to preemies as little miracles and #preemiestrong. What does this mean to you when you think of your own child?
When I look at him today, those days of him being a preemie aren’t what I see… He surpassed everything and blew doctors out of the water. He’s so strong, smart (SO very smart!), witty, loves to make you laugh, will do anything to make you proud, helpful and you simply wouldn’t know he was born premature! He amazes me every single day! I am grateful for everything about him!

15. What is your hope for premature babies and their mommas? 
My hope is that the medical technology will continue to expand and become more and more invasive so when our little miracles are brought into this world early our first emotion isn’t fear, but relief. That we trust our baby’s medical professionals to the point we don’t have to feel helpless for our fragile babies but hopeful for the day we take them home. That we are equipped with more answers than questions. Also, for moms to never feel alone or isolated. Every story is different just like every premature baby or full term baby. I feel unbelievably fortunate that I have a happy ending once my son was born and that he/we didn’t experience further complications and we were able to leave the hospital at the same time.  Also, that we continue to be healthy.

16. Anything else you want to add?
Never give up. All babies need love, period. All moms need love, period. All families need love, period. We are all in this together, to support one another through all trials and tribulations, through all ups and downs, through all the heart break and heartfelt and we are here to lift up one another. 

Being a mom (it the context that relates to you, whether you adopted, you’re a step parent, you chose surrogacy, you had a natural child birth, had a sectarian section or you lost a child, etc) it’s the most sacred of all rewards and accomplishments you will ever receive in your life; we are part of a super top secret elite club. We cannot be replaced!  We are all special, unique and amazing- just like our little ones! Everyone should take time out of their day to give themselves a complement out loud followed up with a pat on the back. Think about it, we complement our children, our significant others, our friends and family, even complete strangers. Let’s learn to complement ourselves OUT LOUD especially when you’ve had a bad day! Be MOM proud every single day, even when you feel completely defeated. 

No matter what you are going through, you are not alone! YOU are amazing! YOU are a rock star! YOU deserve that little piece of chocolate. YOU deserve that last piece of cake. YOU deserve that hug from that someone special. YOU deserve that “just because” little gift. YOU deserve that little think you just bought for yourself, even if you feel guilty for it. YOU DESERVE IT- GOOD DAY OR BAD DAY-ACCEPT IT!!

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