Pray for Brae

When Addison was in the NICU at UMMC we had the honor of meeting Braelen. In fact they were roommates for a brief period of time. His mom is simply amazing. She has been faced with so much but has never given up hope. Braelen's story is nothing short of amazing and I am afraid even I wouldn't be able to depict the details and amazing miracles this amazing boy has endured.

But I want to share Braelen's story with you. Visit the link below to learn about Brae and his progess:
 https://www.facebook.com/PrayForBrae/info

Spotlight on Preemies...Emily & Norah and their Mommy

Both of my daughters were premature. Norah (3) was born at 34w2d because of severe preeclampsia. She was 4lbs 11oz at birth. She had a 23-day NICU stay in which her main issue was learning how to eat. To this day, she remains an unenthusiastic eater. However, she is a smart, silly, affectionate preschooler who keeps me on my toes.

Emily (7.5m) was born at 35w0d because of low amniotic fluid, IUGR, and early signs of preeclampsia. She was 3lbs 8oz at birth. She had a 14-day NICU stay. Like her sister, learning to eat was the main focus of her NICU stay. Because of her low birthweight, it took nearly 2 months of hard work to transition her to breastfeeding, and now she is an eating machine and has quadrupled her birth weight! She loves to smile, but saves her biggest smiles for her big sister.

Being a mother of preemies has definitely changed my life and parenting. Even though my girls were late-term preemies, I'm more cautious about things. I also feel like it's given me more empathy for any mom whose birth experience didn't live up to their expectations. My faith is stronger because of the experiences I've had.

Prior to my daughters, I was clueless about preemies. I knew only one person whose late-term preemie was only in the hospital a few extra days. I had absolutely no idea what I was doing in the NICU. Having a second NICU stay was easier in some ways and harder in others. I had a very good idea of what to expect. I knew what I wanted, what I needed to do, and how to advocate for me and my child. I didn't have that culture shock like the first time. I spoke the language. However, it was so hard to have a NICU baby and a child at home. No matter where I was, I had to be apart from one of my babies. Having my whole family under one roof is something I don't take for granted anymore.

 handled the NICU experience better the second time. I was shocked by the whole experience the first time and it took a while to get my bearings. The second time I focused on what needed to be accomplished to get my baby home. The emotions took a few months to catch up with me.

To a new preemie mom in a similar situation, I'd recommend that you gear up for some frustrating days (especially if you choose to breastfeed). Dig into whatever backup supply of patience you have. Ask questions. Know that it's okay to feel overwhelmed. Take any help that's offered to you. Snuggle that tiny baby close and know that even though it feels like an eternity, she will come home soon.

Spotlight on Preemies...Tristan and his Mommy

From one of my favorite preemies... Check out Tristan and his Mommy over at www.urbanflowerpot.blogspot.com

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...
I started out with one preemie, but now I have many. My son, Tristan, was born at 30 weeks. We’d had a house fire one month prior and lost everything, including my cats. The doctors speculate that the stress from that is what caused me to go into premature labor; I had a textbook pregnancy until the night I delivered. He was almost born at the tequila bar/restaurant where I was working but luckily we were a few blocks away from our hospital and we made it just in time for me to deliver. I was in shock.

How would you say YOUR experience with this preemie(s) has affected you?
I never knew babies so little stood a fighting chance. I see babies tough fighters now; they are so strong.

How were you able to handle the NICU experience?
By crocheting. I’d drop Tristan down my shirt to “kanga” or “go roo’ing” as I’d say, then my hands would be free to hook. I made a huge pile of flowers. Some were turned into coasters for friends, and the rest hang in our living room like a pennant.
I also took a lot of photos and decorated his isolette/crib. Sleeping with his hats and “quilts” brought me strength and comfort and doing his laundry made me feel like a mom.

Before this experience what did you know about preemies?
I knew that it meant they were born before their due date; and I had a Cabbage Patch Kid Preemie when I was little.

What have you learned from all of this?
Never underestimate a child weighed in grams – or the parents who love them.

What advice would you give another person in your situation?
Focus on your child and not the machines. Do whatever makes you feel like a mom – take their temperature, give them baths, tuck them into little outfits and cozy blankets. Read them stories, sing them songs. Find a support group of women who will understand. You won’t fit in with people who don’t have children – nor with the moms who had full term babies for a while. Don’t let yourself become isolated. Community is so important.

Anything else you want to share?
I began by saying that when I began I had one, but now I have many. He is a toddler now, but along the way I met other preemie moms to lean on. We have shared our joys and sorrows, our aches and pains, our delight over any little thing – whether it’s an ounce gained, a mL swallowed, a step taken, or a first word. They are my best friends and their children matter very much to me. I delight in hearing from them every day and meeting up with them when I can. I call them Tristan’s Gang o’ Preemies.
It’s hard being a preemie mom – but the community will embrace you.

Tristan Then & Now (6 months and 18 months)

Spotlight on Preemies... Ty and his Mommy

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...

Tyler is my son. He is 21m actual and 18m adjusted. He is the happiest and most awesome little guy I know. He is hilarious, mischievous, smart, and a total joy. He is an amazing, strong, and determined boy.

How would you say YOUR experience with this preemie(s) has effected you?

How has it not effected me? Once I was asked to choose 4 things that defined me as a person. Having a preemie was one of the 4 that I chose. I know WAY more medical terms than I ever wanted to know. I know pain, heartache, stress, sadness, frustration, and loss in ways that I never wanted to. I also know joy, happiness, excitement, and gains in ways I didn't expect. I take nothing for granted with it comes to being a mommy. I have also met the most amazing women because of having a preemie... and without those women, I wouldn't be who I am today either.

How were you able to handle the NICU experience?

I had a lot of support from my friends, family, co-workers etc. It was really really rough... but one thing that also helped was that we were transferred to a smaller, local hospital pretty early on and at times we were the only family in the Special Care Nursery. The most babies we saw there was 6 and 3 were triplets. Having a closeness and a wonderful relationship with the doctors and nurses was also key.

Before this experience what did you know about preemies?

I had a friend who had 27 weekers and lost one of the twins at 2 days old. Her experience was about all I knew.

What have you learned from all of this?

Everything. But what stands out is that I have learned it's ok to be strong and weak, happy and sad, scared and excited all at the same time.

What advice would you give another person in your situation?

Find support of those who have been there. People need to know that their feelings are validated and normal. They want to hear stories and thoughts and ideas. The only people who understand, are those who have been there before.

Anything else you want to share?

Although I wouldn't wish a premature birth on anyone, I know that it has changed me for the better.

Spotlight on Preemies... Zach and his Mommy.

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...

"My" preemie is my son, Zach. He was born at 26w3d gestational age for unknown reasons. I was having a picture-perfect pregnancy right up until the point where I walked into the hospital and had a baby. He was born 300 miles from home while I was on a business trip, which made things extra complicated. He spent 70 days in the hospital and turns two in January.

How would you say YOUR experience with this preemie(s) has effected you?

I will never be the same person I was before having my son. I'm a completely different person. I divide my life into my naive pre-Zach life and my more aware post-Zach self. I appreciate him so much more than I would have if he had been born at term, I think. And I have so much more empathy than I did before my son was born.

How were you able to handle the NICU experience?

"You never know how strong you are until you have no other choice." People commented frequently that we (my husband and I) were such strong people for dealing with the NICU experience, but, at the time, it felt like it was the only option. We had to just survive day-to-day.

Before this experience what did you know about preemies?

I had a fair amount of preemie knowledge before Zach was born. I have a friend whose daughter was born at 24 weeks. After struggling through 8 days of life, she passed away. I also have another friend who had a 28-weeker. While the baby was in the hospital for many weeks, he was generally fine in the long run. When Zach was born at 26 weeks (right in the middle of these two preemies), I was very aware that it could really go either way with him. Luckily, he was one of the lucky ones.

What have you learned from all of this?

I've learned how to be a health advocate for my child (and myself). I've learned to have faith in myself. I know that, no matter what happens in the future, I'll be able to get through it.

What advice would you give another person in your situation?

Just take it an hour at a time at first. Then, take it a day at a time. Try not to look too far ahead, and try not to be disappointed by any setbacks. Those things are almost impossible, though. You will look ahead, and you will be disappointed by setbacks. That's okay, too.

Spotlight on Preemies...Bryn and her Mommy

My preemie is my daughter Bryn. She was born at 32 weeks because of low fluid. At 3lbs 15oz and 16 inches long, she was just about the biggest baby in our NICU at the time. She spent 3 weeks in the NICU and was then transfered to Mt Washington Ped Hospital for another 10 days. Before Bryn was born I didn't know much about preemies. Everything was very new to my husband and I. We had a son already but he was full term and even though he had some issues when he was born they were VERY different than those of our preemie. My husband was scared to hold our daughter. It broke my heart. I felt like it was somehow my fault that our baby was so small and fighting for her life. I suffered for a liong time with depression. I was able to some how pull it together to care for our son at home and finish my college courses with 3 B's and 1 A. After our daughter came home, I didn't go anywhere unless she had a doctor's appointmet (which we had alot of) I even have people still telling me they didn't know I had another baby....She's a week shy of 2!!! Having a preemie has made me so much more thankful for the hard work of the doctors and nurses. I am more aware of what is going on with my children, I will see a rash before it's there and I can hear if they breath harder than normal. I sometimes over react but I think that is normal of any parent....lol I was able to make it through the NICU with the support of my husband that knew I was stressed and when I started a fight about the color of his socks one Sunday morning he just smiled and said "Ok you don't like them, I will change them." I also cried more than once to the doctor and nurses that cared for my daughter. I would cry to a complete stranger if I thought I would feel better when I was done. I prayed harder and more in those 31 days than I think I ever had in my whole life. I have learned how to be a better person and a better mother. I now know what a PFO and what SVT is. I know how to feed my baby through a tube thats sticking out of her nose. I can check her temp with my eyes closed. I know how to check her heart rate with her even if she is screaming. I also know now that no matter how hard my life is, someone out there has it worse. Nothing that anyone says can prepare you for what you will go through in the NICU. People can tell you what they went through but what you go through will be based on your child. Each child is different but the power of prayer is amazing!!!!

Spotlight on Preemies...My Preemies

Today is WORLD PREMATURITY DAY... We are wearing purple for preemies all around the world.

In honor of today I guess it's only fair that I answer my own questions right in my Spotlight on Preemies?

Here goes nothing:

Who are your preemies? Tell me a little bit about them...

My preemies are Addison and Blake. Born at 26 weeks (14 weeks early), weighing (Addison) 1lb 10ozs & (Blake) 1lb 14ozs. Addison had quite the rough start...her sack ruptured at 20 weeks and against the odds I was blessed enough to stay pregnant until 26 weeks (just two short weeks past what is considered viability). And infection is what ultimately caused me to go into labor on Valentine's Day no less. Addison had Chorio and my OB mentioned that had we waited any longer we would have lost her and that Blake was coming close to being infected too.

Addison spent 153 days in the NICU and atleast half of those days were spent on a ventilator or some type of O2 equipment. Within her first day of life she had coded upon admission to the NICU, was on the Oscillator and had a chest tube for a collapsed lung. I will never ever forget that first night, starring at Dr. K as he asked us "How far do you want me to go? Things are not looking good and even if I do all I can it may still not be enough." And being asked if it was our wish to have our daughter baptized that night, as it was a grave situation. But I will also never forget that next morning when he said "I cannot explain this. All I can say is will we take it minute by minute and do all we can to support her in anyway we can."  Nor will I forget day 153 when Dr. K walked in her room as the other Neo was writing her discharges papers, with such pride and amazement, congratulating us on defying the odds and bringing our baby girl home. She suffered bilateral (3 & 4) brain bleeds, that were resolving at discharge but their long term effect has yet to be seen.

Blake had a slightly shorter stay at 105 days. He too did some time on a ventilator, extubating himself on more then one occasion, CPAP and Nasal Cannula. In fact he even came home on oxygen and a monitor for feeding. (Addison did not.) For the most part his stay was mostly uneventful. We had a MRSA scar and a Grade 3 brain bleed which resolved on its own prior to discharge. To date he doesn't seem to have any lingering effects of his prematurity and we hope that this will hold true for the future.

How would you say Your experience has effected you?

I would say this whole experience has changed me dramatically. It's made me a better person for sure (atleast I think so anyway). I found strength I never knew I had. Suddenly little things that I thought were important didn't matter. I discovered what really was important. And I learned to love beyond measure, never take a moment for granted. Things change in the blink of an eye. And I also found a renewed faith in God. And it made me tougher, and not as easily manipulated. I knew I had to stand up for my babies, advocate for them and be their voice. I hated confrontation but suddenly my mother bear instincts kicked in.

How were you able to handle the NICU experience?

I was able to handle it with a lot of support. From my husband, our family and our closest friends. I also needed to talk to other people like me who knew what I was going through. Finding a good support system is truly what helped me survive.

And truthfully that is all I did... survive. I ran on pure adrenaline for months. It wasn't until after they came home from the NICU that I truly began to process it all.

Before this experience what did you know about preemies?

Before my water broke? Little to nothing. I knew preemies existed and what "defined" one. I also learned that a friend of mine had a 32 (?) weeker just after I made it into my second trimester, and that she survived and was doing well. I didn't know all the details but I knew she had a NICU stay.

After my water broke? Maybe a little too much, and maybe not enough. I immediately started googling statistics and success rates and a million other things. I reached out to other mom's on bedrest and even other preemie moms, because at that point we pretty much knew it was going to happen, we just didn't know when. In some ways I feel like those 6 weeks of research and wondering gave me hope and prepared me for things that some preemie moms didn't get the chance to prepare for. Did it make it any easier? I am not sure, but I think it did impact the way I looked at somethings. But I was still in no way truly prepared for what laid ahead of us.

What have you learned from all of this?

One, not to be brass, I learned who my real friends were. Who was going to stick by us no matter what and who would really "understand" (as much as one did understand without first had experience).

I also learned that even the best laid plans do not always work out. Things were way beyond my control and there was very little that I actually did have control over. I learned that I had to have faith.. in God, and in my fellow man. Faith that someone other then me could save my babies.

What advice would you give to another preemie parent?

Find a support group. Advocate for your child. Only gather information on things that effect you or your child in the moment. Don't read too deep into other preemie conditions or what ifs. Stay focused on the moment. Even though it is extremely hard to do, take a moment for yourself. If it means you don't wake up in the middle of the night to pump breast milk, take that break. You have to make time for you, because you will need that energy to keep going. And be prepared for the roller coaster. The first few days can sometimes be the honeymoon phase, be prepared for it to get worse and be surprised when it gets better. There will be a million ups and downs and then things will stay status quo and it will feel like years before you baby is home. Trust me that this too shall pass, and it will get better.

My babies alone have impacted the lives of many around them. They have a purpose in life and a story to tell. They have changed my life in so many ways.

If you someone you know has a preemie, be there for them. Offer to bring them dinners, clean their house, cut the grass, walk their dogs or simply just listen. Don't ask questions just let them talk to you.

Spotlight on Preemies...Paddy and his Momma

My preemie is my son Kevin "Paddy". Paddy was born at 26w, 4d due to pre-eclampsia and had a 128 day NICU stay. He had lots of lung issues and reflux and his ongoing issue is Failure to Thrive. He's now just shy of 23 months and weighs 18 1/2 pounds. However he is a dynamo. All energy and charm - always on the go but quick with a hug and kiss too.

It effected me in the short term - just the total crisis with the pregnancy and his NICU stay. The first year after discharge was quite a ride but my husband and I were able to draw on the help of family and friends, especially my mom, to get through. Now that we're into his second year at home things have settled down a bit and I feel like we're moving out of preemie mode and into normal parenting mode with a dash of special needs for his food issues.

I keep waiting for the other shoe to drop with the NICU stay thing. The first few weeks were rough as were the last few weeks but for the long haul in the middle I handled it fairly well. It was what it was and - other than worrying about his survival - I wasn't sad that Paddy was in the NICU rather than home with us since in my mind (and reality) he wasn't supposed to be at home with us because he shouldn't have been born yet. I'm 32 weeks pregnant now and expected those emotions to kick in but so far nothing. Maybe I'll have something pop up once the new baby arrives.

Before having Paddy my only exposure to preemies was a cousin's twins born at 34 weeks. Since having Paddy I feel like preemies are everywhere.

I was a planner before I had Paddy and I'm now much more a take things as they come person. It's also improved my patience.

Make friends with the nurses and support staff at the NICU and beyond. These people will tell you what's what more so than most neos (and don't get me wrong, I loved our neos). Let go of the guilt (and go to counseling if you can't let go or are experiencing PPD or PTSD). Chances are there is nothing you or anyone else could have done to prevent whatever landed your child in the NICU so accept that and move forward.

Be nice to your partner. The first year with any baby is hard. You may want to clobber him or her over the head with a frying pan occasionally. Trust me - they want to do the same thing to you every once in awhile. Get a babysitter and take a nap! One night my husband and I met friends for dinner and then, on a whim, went to our local casino to just blow off steam. The casino happened to be across from our son's hospital and I had to talk my husband out of stopping by on our way home at 2am.

Spotlight on Preemies...Preemie Grandparents 2

A Grandparent perspective from my mom...

My preemie grandchildren are Addison and Blake. Addison is the one we like to call our "wild child" she never sits still, is always on the go and has no fear of nothing and is a bully to her brother, lol. Blake is the cry baby he is fearful of everything but will overcome it all with just a little guidance. To me they are the sweetest babies I have ever met.

My expereince with these preemies has affected me to say that all things are possible with prayer and God although I had no fear about this one. Somehow I always knew in my heart these two would survive and strive, I knew all they needed was to hear their Mommy and Daddy's voice to give them strength. I was able to handle the NICU experience because I knew I had to be strong for my daughter, my son in law and my grandbabies. I knew I could fall apart later in my own space and believe me I did. I learned that time is most precious and enjoy ever day, try not to miss a thing. My advice to another grandparent would be to follow the wishes of the parents as they know best even though you may not agree with it, don't cause more stress on the parents. To other parents I ask them to be mindful of the grandparents as we have feelings also and although these may not be our babies they are our grandchildren and we love them just as much.

Spotlight on Preemie... Gabe and his Mommy

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her... Gabe. He was born at 31w3d weighing 2lb 3oz due to placental insufficiency and partial placental abruption. After he was born, we discovered the reason for his early delivery was because I have a clotting disorder.

How would you say YOUR experience has effected you? It has effected me in a lot of ways. Mainly, I don't take anything for granted. I know how much can change in a very short period of time. My pregnancy was "textbook" until it all went terribly wrong at 31 weeks.

How were you able to handle the NICU experience? Looking back, I didn't handle it well at all. People seemed to think I did, though. Both my husband and I went into ourselves and our marriage. We didn't let a lot of people in during that time. Self-preservation I suppose.

Before this experience what did you know about preemies? Well, I was a preemie. So, I would say I knew some of the basics (jaundice and trouble staying warm). But, other than that. Not much. I definitely didn't know a 2lb baby's prognosis.

What have you learned from all of this? Well, more than I ever wanted to know about neonatal care, that's for sure! Other than that, I've learned that I am stronger than I thought I ever could be and that I can be an advocate for my son.

What advice would you give another person in your situation? Do what feels right for you. Each of us deals with the NICU experience and becoming the parent to a preemie in his or her own way, and that's okay.

Spotlight on Preemies...Ryan and his Mommy

First let me just tell you how absolutely amazing Ryan is... and his family. This little guy had a very very lengthy NICU stay and did nothing short of amaze those around him. He is now at home with his family and doing very well. I look forward to seeing all the amazing things this little man does in life.

Who is your preemie?

My preemie is my son, Ryan. He was born at 25 weeks exactly and spent 7 months in the NICU. He just came home with us 2 weeks ago!

How would you say your experience has affected you?
I don't even know where to begin. I am definitely not the same person I was before all of this. I have a lot of sadness about missing out on the last trimester of my last pregnancy, missing out on the easy newborn experience where you just get wheeled out of the hospital with your baby, etc. But I have learned A LOT. I am definitely stronger and I'm proud of my ability to advocate for my son.

How were you able to handle the NICU experience?

It took a village. I leaned on family and friends for support. I accepted help, which is really hard for me to do. I asked lots of questions and made sure I understood everything. I wrote everything down on a Carepage.

Before this experience what did you know about preemies?

I knew a bit about preemies, but not a whole lot about micro-preemies. MY first baby was born 3 days after her due date, so this was a whole new world for me.

What have you learned from all of this? 
I already kind of covered what I learned about myself, but I'm also amazed at how much medical information has stuck in my brain. I've learned terms and acronyms I never thought I'd get the hang of, but they come out
like second nature now.

What advice would you give another person in your situation?
Try to keep your thoughts as positive as possible. Have faith and ask lots of questions. You'll hear it a thousand times, but you are your child's best advocate and you know them better than anyone else.

Anything else you want to share?Just that this journey doesn't end when you get home from the NICU. It's a long raod, but you'll find a way to make this into your new normal.

To follow Ryan's story head over to their blog at: http://watchingryangrow.blogspot.com

:)

Spotlight on Preemies...Caroline and her Mommy

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...

My preemie is Caroline. She is my daughter, born at 28 weeks. She is without a doubt our miracle baby. She is beautiful, hilarious, intelligent, and sweet. She fought her way through 10 weeks in the NICU and has fought ever since to become a big, strong, healthy girl. She loves peaches, being outside, NICU pacifiers, chasing our cats, and Mickey Mouse Clubhouse. She is the most amazing person I have ever met.

How would you say YOUR experience has effected you?

The experience of having a difficult pregnancy and premature birth changed me to my core. It has made me run the spectrum of emotions; joy, excitement, terror, faithful, happiness, pride, defeat, depression, victory. I will never underestimate a premature baby because those tiny little humans can do extraordinary things. I feel envious of those who experience "normal" pregnancies, or those who are completely in the dark about what can go wrong. I worry that I may never see anything past 28 weeks 4 days.

How were you able to handle the NICU experience?

I was in survival mode. I prayed, about a hundred times a day. I leaned on my mom & my best friend. I struggled with communication and patience in my marriage. I used the Preemie page on TB as a tool to reach out to others to find out how THEIR NICU experience had been. I saw a therapist.

Before this experience what did you know about preemies?

I knew that I never wanted to have one, because it would be so incredibly scary. I distinctly remember telling my husband's aunt (who is an OB-GYN nurse practitioner) "I am worried about pre-eclampsia... I mean, I am so scared I'll have like a 28 weeker!" and...then I did.

What have you learned from all of this?

God puts you exactly where he needs you to be when he needs you to be there. For example, the nurse I had the night I got very sick was my aunt's childhood best friend and an incredible nurse. The doctor I had (who didn't know me until that wknd because I switched hospitals upon admission due to needing a high risk OB and a Level III NICU) was on call the entire Thanksgiving weekend, so she "knew" me and knew I was getting sicker by the hour. The first NICU nurse Caroline ever had ended up being one of the BEST nurses in the NI and one of our primaries. The pieces fell into place the best they could. I have learned patience. Compassion. Acceptance.

What advice would you give another person in your situation?

Learn to be an advocate for yourself and your baby. If you are pregnant and something feels off, call your OB. Go see them. ALWAYS trust your gut. If you don't like a nurse, or a doctor, or a plan of care -- talk to someone. Change it. They may be experts in medicine, but you are the expert in your baby. Don't count your chickens before they hatch. Don't use the words "discharge" or "going home" - its a jinx! Call the NICU as much as you want. Visit as much as you want - you are NOT a bother. You are that baby's Mama and they need you there. Any good nurse will respect your worry.

Anything else you want to share?
Celebrate EVERY milestone, as minimal as they may seem. Oh, she gained 0.5 ounces! WOOHOO! Oh, she got a bath today? YAY!!! Oh, you have gone four hours with no desats! YES!!!! No milestone is too small for the NI! :)

Spotlight on Preemies...Nora and her Mommy

Renee is my guest blogger today, she can be found over at: http://purtylittlefowler.blogspot.com/

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...

My daughter Nora was born at 25weeks due to a bicornuate uterus that caused me to go into preterm labor. In her 97day NICU stay we experienced a lot of the normal preemie related issues, she had a lot of blood transfusions, chronic lung disease, a PDA (heart murmur), weight gain issues, and we also had two major infections that could have taken her life (strep epi and group b strep), also a bi lateral grade 3 & 4 IVH (brain bleed). Nora is now 9 months old, 5.5months adjusted and doing well. She still has her PDA, but she is off oxygen and happy as can be. We are still struggling a lot with weight gain. She is a tiny little thing, but she is a determined little fighter and our miracle!

How would you say YOUR experience has affected you?

It has affected me tremendously. I always say I walked into that hospital on Feb 1st one person, and walked back out on May 10th a completely different person. The days and hours leading up to her birth were the most terrifying times of my life. When a baby is born at 25 weeks they are only given a 50% chance of survival, so we had absolutely no idea what to expect and there was nothing we could do except to hope and pray a lot! It has definitely made my faith stronger, my marriage stronger and made me a much better Mom than I ever would have been. It has made me a stronger person over all, and a more compassionate and grateful person.

How were you able to handle the NICU experience?

I have absolutely no idea. My only answer to that is God, the power of prayer and my husband. Nora has been home for 6 months now, and I look back and have absolutely no idea how I left that hospital every night. I can't stand to even leave to go to the grocery and come back, so I honestly have no idea how I left my sweet baby girl for 97 days. I do know that you find strength you never thought you had in situations like this. There were some really rough days in the NICU, days when we had no idea if Nora would survive, and the only way you can get through those days are prayer.

Before this experience what did you know about preemies?

Very little. I had absolutely no idea what it meant to have a 25weeker. I had no idea what it meant as far as a NICU stay and no idea what it meant for years after she left the NICU.

What have you learned from all of this?

I learned how small a 1lb 14oz baby really is. There is much more to a NICU stay than just feeding and growing. Also There is so much more to prematurity than a lengthy NICU stay. Prematurity can affect a baby until they are 3 or 4, or in some cases a lifetime.

What advice would you give another person in your situation?

Find a good support system. Your family and friends will say they understand, and most of the time they will try... but they really can't understand it until they have lived it themselves. Find a few people, or at least someone else who has been through it, or going through it to lean on. Someone who will understand all your frustrations, heartache and will celebrate the teeny tiny milestones with you as if your child has conquered the world! Also take it one day at a time, always remember how far your child has come, and remember all the issues of prematurity do not stop when you leave the NICU. Do not be afraid to ask questions, trust your gut instinct, and always remember you have to be an advocate for your child.

Anything else you want to share?

I think one of the biggest misconceptions of prematurity is that once the baby is cleared to leave the NICU, everyone thinks that everything is ok and the baby is healthy and just like a newborn baby. This could not be farther from the truth. Nora has at least 2 appointments per week and sometimes up to 5 in one week, they can be anything from cardiologist, ophthalmologist, NICU follow up, Pediatrician, PT, OT, EI, and Nephrologist and these are just the appointments we go to on a regular basis. Nora is 9 months old and we currently deal with a PDA, high blood pressure, very low weight, ROP and she is on 3 different medications. She cannot roll over, sit up, eat cereal, or crawl yet. Currently we are working on lifting her head up off the ground for tummy time. Prematurity is a very very long road, but we are so thankful she is here...and getting stronger and stronger everyday! Nora is so perfect to me, and I couldn't possibly love her anymore than I do right now!

Spotlight on Preemies...Preemie Grandparents

Up next is the perspective of Grammy & Pop to preemie twins...

THE PARENTS OF THE DAD OF TWIN PREEMIES:

It all started at 20 weeks of pregnancy and this started the difference in Grammy and Pop Pop handling of this situation, I wanted to read and see everything I could about preemies and what week was the magic number of survival was and when I tried to talk to Pop Pop about this info and pictures he would not participate in any such subject, and I starting praying to the Dear Lord and DAD'S GRANDMOTHERS IN HEAVEN TO PLEASE NOT LET ANYTHING HAPPEN TO THESE BABIES. Then at 26 weeks the phone call came that Addison and Blake were coming into this world. I CAN NOT RELAY THE FEELINGS THAT THIS NEWS BROUGHT BECAUSE FROM ALL I READ 27 WEEKS WAS THAT MAGIC NUMBER SO I WAS SCARED LIKE I HAVE NEVER BEEN BEFORE. When my son came out of the OR with the news that they had survived birth, OVERJOY of being a grandparent crept in for a second, then the fear hit. The pictures even though I had looked at so many trying to prepare myself completely surprised me as they looked like beautiful tiny babies. Then the next day MOM AND DAD DECIDED TO LET US SEE THEM, NOTHING CAN DESCRIBE THE FEELING OF SEEING THEM FOR THE FIRST TIME, INSTANTLY I BECAME A GRANDMOM, WITH VISIONS OF ROCKING THEM ASLEEP, GOING TO SCHOOL EVENTS AND TAKING THEM PLACES AND SHOWING THEM OFF, ETC. AND A FEAR LIKE NO OTHER HIT ME AND THE SILENT PRAYERS STARTED AND THE THANKS TO THE LORD FOR KEEPING THEM SAFE STARTED AND REMAINS TO THIS DAY. IT ALSO HIT ME THE FIRST TIME I SAW THEM THAT FROM THE LOOK IN MY SON'S EYES HE WAS A DAD. The only advice I could give any friend, , neighbor, family member is to always take the time to let mainly preemie mom's talk, men just don't talk it all out like women do, You may not know all the medical stuff and what they are going thru but sometimes they just need to talk.

Spotlight on Preemies... Sophia and her mommy Rachel

Meet Sophia and her mommy, Rachel...

Who is your preemie? Tell me a little bit about him/her...

My preemie is my amazing daughter. I was put on strict hospital bed rest at 27 weeks. She was born at 28 weeks, 6 days weighing 3 pounds, 3 ounces and 15 1/8 inches long. She was on a ventilator for 24 hours and nasal cannula for 1 week. She was born with a deadly bacterial infection, PDA heart condition, grade 1 brain bleed, and jaundice. She stayed in the NICU for 6 weeks. She is currently a healthy 18 month old, weighing 22 pounds and 30 3/4'' tall.

How would you say your experience has effected you?

Becoming a Preemie mom forever changed my life. I cherish and celebrate each and every little milestone. I feel much more educated on areas of development. I have a passion for educating others about the risks and effects of premature births. The experience has made me question her development more. I have been more cautious about the exposure to germs and other children.

How were you able to handle the NICU experience?
The NICU was a roller coaster. There were days of pure terror and days of amazing joy. There were so many questions and concerns. I relied heavily on the love and support of my family to get through the many weeks of bedside care. Many days I simply say by her beside and prayed. I am grateful for the nurses who were encouraging and helped me care for my tiny little one.

Before this experience what did you know about preemies?

I had worked in and around the children's hospital for many years. I had always seen the stories on the Children's Miracle Network and had met the parents of preemies, but it doesn't even come close comparing what it was really like to become one of the those parents. To see my baby so tiny and so fragile.

What have you learned from all of this?

I have learned so many things after becoming a Preemie Mommy. I have learned that BIG Miracles come in Small Packages. I have learned to celebrate even the smallest of milestones. I have learned that not everyone understands what it's like to be a Preemie Parent.


What advice would you give another person in your situation?

Take lost of photos, you will cherish them, even the ones with the tubes and wires. Ask lots of questions (you can never ask too many questions). Write down your thoughts and feelings. Keep a journal of your child's weight each day. Write down each new accomplishment and change. Write down what you would want your child to know about their time in the NICU. Get to know your child's nursing staff, they will be the ones that will be encouraging you and teaching you. If something doesn't feel right, say something, you are still your baby's parent. You are your child's biggest advocate!

Spotlight on Preemies...Ryan & Aiden, and Their Mommy too!

Ryan & Aiden are the stars of http://hydrobabies.blogspot.com/ and today their mommy Joanna is answering my Q & A...

Who is "your" preemie? Tell me a little bit about him/her...

My preemies are my twin boys Aiden & Ryan. They were born at 25 weeks and spent 4.5 months in the NICU. They were both diagnosed with Hydrocephalus soon after birth. They are the light of my life.

How would you say your experience with preemies has effected you?

My experience with prematurity has completely changed my life. I now think of my life as before NICU and after NICU. Things will never be the same, but I am ok with that. The time we spent in the hospital was the darkest time of my life but it was also eye opening.

I've learned more medical terms then I care to admit and I've seen more heartbreak then I can stand, but I walked out of there with my boys and that's all that matters.

How were you able to handle the NICU experience?

My husband, hands down, was my rock. Without hi I don't think I could have gotten though our time in the hospital. The NICU is a scary place, and no matter how hard they try, no one will understand what you're going through unless they've been there themselves.

Before this experience what did you know about preemies?

Honestly, I don't remember. I'm so busy learning about my boys' condition and making sure they get what they need in order to succeed in life that I forget things about my life 'before NICU'. In all honesty, I don't think that I knew babies born so early had a chance to survive.

What have you learned from all of this?

I've learned that life will had you the unexpected. I've learned that I'm stronger than I thought. I've learned that family is the only thing that matters. I've learned that I'll do anything for my children.

What advice would you give to another preemie parents?

Talk, talk, talk, talk, talk. This is hard to go through, and it's easy to keep things inside. But in order to grieve and heal you need to talk about it. Having a premature child is scary and it comes with a lot of heartbreak (happiness too, though!) It's important to let those feelings be known.

Anything else?

I wouldn't change my kids for the world. I often think about "what it's", but truthfully, I know Aiden & Ryan were meant to be mine. And I thank them for coming into my life.

Spotlight on Preemies...A Preemie Dad

(Disclosure: This is my husband's response to the questions. He is your "typical" tough guy male & this is what he has to say.)

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...

My preemies are Addison and Blake. Blake is just like me... my little buddy. Addison is my little diva, who has gone through so much but yet is growing up so fast.

How would you say YOUR experience with this preemie(s) has effected you?

It's made me mature and live my life one day at a time and soak it all in.

How were you able to handle the NICU experience?

Knowing that while I was at work my wife there with the babies, she could be by their side when I couldn't, and she was constantly updating me and sending me updates and pictures.

Before this experience what did you know about preemies?

Nothing.

What have you learned from all of this?

Never count anyone out...especially a preemie. Preemies at some of the toughest and resilient humans on this earth.

What advice would you give another person in your situation? (as father to a preemie and husband)

Be there for your significant other. Do not be afraid to ask questions, and always trust your heart when making decisions. Lean on your spouse when you need to too.

I also just wanted to say this about my husband. His strength is a HUGE part of what go me through this. We learned together what was truly important in life, he learned to be a little more caring and I learned to be a little more careless. There were times where I felt like he just didn't get it or was being to nonchalant, but I have learned to realize it was his way of coping, and it wasn't wrong. He always gave the best advice and asked a million and one questions in a million and one different ways. Sometimes I think it is because of him that I understood things better.

Spotlight on Preemies...Addison, Blake & Aunt Amanda

This spotlight is about my own preemies and how this experience impacted my sister in law, their Aunt.

I asked her the same series of questions and this is what she had to say.

My preemie is Miss Addison and Mr Blake. They are my niece and nephew. They are 2 of the most precious gifts that God has given to our family. Addison is such a happy and playful little girl. She amazes me a little more each day. In the first year of her life she has been through more then most adults will ever have to deal with. Blake, is well to put it mildly he is Jake-Jr. He is his father all over again. There are times when he does something (anything really) all I can think is "I remember when Jake did that." He is shy but loving. When he cracks a smile he melts your heart every time. Before the twins were born, my only experience with preemies was on the baby shows that come on in the early morning. I didn't know what classified a baby as a preemie. I just assumed that all babies were born after 9 months and they were at least 6 pounds. But now I know that babies are born at all different sizes and different stages of pregnancy. The NICU experience I had was limited because I always though that time should belong to the parents and grandparents of the babies. They couple of times I did go to the NICU it was a very interestin experience. From the scrub down to the size of the babies, everything had me truly amazed. When I left and someone would ask me "what did the babies look like?" I would always say "Like Barbie dolls with big heads." I am truly amazed at what a NICU is able to do. The dedication of the nurses and doctors are amazing. It takes a special person to be able to do everything that they do on a daily basis. Through Blake and Addison's NICU stay I have learned that anything is possible. From putting in a breathing tube in a baby that is 1 pound to teaching the parents to tube feed their child. The only advice I would give the aunt of a NICU child would be, just be there for your brother/sister and your niece/nephew. This is the time when family is needed more than any other time. And remember, as much as you are feeling the pain and joys of this child the parents are feeling it a million times greater. So just be there for them, whether it is a should to cry on or a joke to make them laugh. You may have to be their rock.

- Amanda

Spotlight on Preemies...Cousins

This next preemie experience is brought to you by my niece who has a family of her own, and her story to motherhood is nothing short of a miracle itself. She was (and still is) an amazing supporter of my two NICU Grads, and is just all around an amazing woman. Here's what Bonnie had to say:

Your twins (preemies) have impacted my life in multiple ways. Their early arrival and touch and go moments brought me closer to God. Showed me, first hand how fragile life is, inspired me not only to pray but to believe in the power of prayers. They taught me to slow down and enjoy my own children more. They were the reason I appreciated my full term pregnancy in it's good and bad moments. They helped me establish a new and deeper connection with my Auntie (you). They showed me a new found appreciation for life itself Your 2 little miracles are stronger and more loved then they can ever imagine. :)

Spotlight on Preemies...Loving Your Friend and Her Preemies.

Here's the response from a friend of mine, Ashley, who rode this roller coaster with me, as a mom to be...

My preemies are my friend's kids. It effected me because as my friend was going through this I was pregnant myself so by talking to her she taught me about strength and that everything works out in the end. With the babies being in the NICU I can honestly say I was scared for her and prayed all the time. I tried to be her rock while inside I was hurting for her. I knew NOTHING about preemies. I learned through her that everything works out they way it should and that prayer will help you through anything and also to be thankful for your child, and hug them everyday. For another person in my shoes I would say be there for your friend. Don't express to them about you being scared. When they cry to you be there and shed a tear with them but mostly be there as an ear. Let them beat you up when they need to, if they are your friends they know they can yell scream and cry to you but you will always be there. You need to try and lift their spirits because when they feel like they are down to nothing they need to be brought back up. I want to let the mothers of preemies know there are people out there for them. The babies will be ok, there are doctors and nurses for them, you need to find a good friend or family member to be there for you.

~ * ~

Ashley is probably one of the few (non) preemie mom's that I am friends with, who I really really shared my struggles with. I could always count on her to be on Facebook when I got home from a long day at the hospital with Addison and Blake. And I'd get text messages from her once in a while just reminding me that she was thinking about me. It makes a difference. If not for friends like Ashley to talk to and my friend Tracey, two people I knew I could call anytime and would do anything for me, I'd have been lost.

As Ashley mentions is it super important to find someone for YOU... the preemie parent. Even the greatest of spouses can become defeated and need a pick me up, plus we all cope differently. There are support groups out there. I have met some amazing woman through this and have formed a bond with other mom's in similar situations. I met an amazing mom who I've had the pleasure of actually had the pleasure of meeting in real life and have instantly became the best of friends with her as well. It helps to have people in your corner.

If you are a new preemie mom and need resources check out www.preemiemomblog.blogspot.com , Find the Preemie Resource Blog on Facebook https://www.facebook.com/PreemieResources  and connect with other mom's who have been there or are going through this same thing.

Other great resources are message boards like the ones at www.thebump.com