December 2011 Sweet Pea Spotlight

Our family story is one that I'm sure many parents share. We are celebrating our 3rd Christmas with our previously premature twins. I say previous because I hope our story gives a small sense of comfort to parents experiencing the emotional journey of having a baby born premature.

Our twins Lexi and Tyson were born on December 11, 2009. I was 29 weeks pregnant when they arrived. My delivery was chaos. Lexi was born first, before my doctor was even at the hospital. I remember asking the nurse after Lexi was born, "ok, I can have my epidural now, right"? The nurse replied, sorry honey it's to late for that, just do your breathing... I remember clearly my response was "but I haven't taken the birthing class yet, it's next week!"

So an hour and 45 minutes later my son Tyson was born. They were both quickly rushed away by the neonatologist. I never got the chance to see and definitely not hold them like I had imaged my birth would be like. 3 hours later I finally got to get my first look at my beautiful babies. Lexi weighed in at 3lbs 3ozs and Tyson 3lbs 8ozs. I instantly reached out to touch them, rub their feet, stroke their hair... but was told I was not allowed to. I could for a brief minute rest my hand on their chest. It was so hard. I had a hard time not blaming myself. Feeling like if I had done something differently this would not have happened. The first two weeks were the hardest. My babies for the most part were healthy but had all the common preemie issues. Apnea, heart murmurs, PDA, etc.

On Christmas eve Lexi developed a serious staff infection and required a blood and transfusion. It was one of the many scary things to happen to us during our 41 days in the NICU. On Christmas one of the nurses asked me if I had ever held by babies together at the same time. No, I replied... it wasn't allowed yet. She looked at me, smiled, and then slowly closed the curtain and gently handed me in my right arm my little Lexi and in my left Tyson. It was best Christmas gift anyone will ever give me!

During our time in the NICU we met so many wonderful and caring people. They made us feel like we were never alone on this journey and that the end, would be a happy one.

One of the most important things I learned was, even though these little babies look so fragile, they are the most resilient creatures. They will grow faster than you can ever imagine. And then someday, like me, with my crazy two year olds, you will look back and find it hard to believe your babies were ever that small.

I don't even think of my babies as preemies anymore. And if you didn't know us when they were born you would never know. I just want to say to all the parents spending this Holiday Season in the NICU, just know a day will come that you will look back on these memories and feel like you read them in a book or some great story. You forged through these challenging times. And you can't image your babies first days, weeks and months happening any other way.

God bless all the families in a NICU!

We would like to thank all of the families that submitted their children's stories. Please know that each of your children are so inspiring and are the reason for what we do. We are honored that you chose to share them with us. If your story was not highlighted this month we encourage you to resubmit next month.

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Home for the Holidays

Home for the Holidays
By Lisa Knigge Rondeau

You’ve survived the NICU and are now home with your baby. You’ve finally settled into a routine with your preemie and the rest of your family (hopefully). Just when things seem to be sailing along, here come the holidays to throw a wrench in your plans!

Now don’t get me wrong, I’m no Scrooge. I happen to love the holidays and everything they represent—time with friends and family and all we hold dear. A time to reflect on what is truly important in our lives, which is even more meaningful now that you have experienced the life-altering journey of a premature baby. And yet, that first (or second, or third) holiday home with your preemie can be incredibly stressful! It’s a Catch-22—everyone wants to see your baby, which is great, but then everyone wants to see your baby, which is exhausting, impractical, and could be dangerous depending on the germ factor where you live. It’s hard to set boundaries with those we love, but it is essential to do for the sanity and safety of everyone.

The first step to figuring this out is to sit down and establish what is truly essential for this holiday, knowing that some things will have to go. Only you and your immediate family can make these decisions and it will take some soul searching. But try to figure out exactly how you want this holiday to look and feel. Is it essential that you see your parents and siblings? Grandma and Grandpa and other extended family? Friends traveling from out of town? Remember, your preemie baby isn’t going to remember these visits—you will. So figure out what you can live with and what you can do without for the time being. If you really can’t narrow down your list, it might be helpful to ask your pediatrician for suggestions. He or she may feel strongly that your little one be exposed to very few people to minimize the risk of infection—if so, your decision is made for you and this can help you break the news to Aunt Shirley why you are not bringing everyone out caroling this year.

Once you know who you must see, figure out the how and when of getting that accomplished. Let’s face it, the holidays were probably already stressful before you had your preemie—lots of rushing from place to place—perhaps with an older (and possibly very cranky) sibling too. Ever dream of not doing all that? Of running away to a deserted island? Well now is your chance! While maybe the island part won’t work out, now is the perfect time to start setting some limits as to what you can accomplish in one day. December hath 31 days folks—use them. Maybe a get together could be moved to the weekend before the actual holiday to free up your schedule. Or perhaps a daytime New Year’s celebration is in order. Try to plan events so you can actually enjoy them—think about nap times and feeding times and travel times and take all of it into consideration first. Remind yourself, and family members if needed, that while everyone wants to see you and that little miracle, absolutely NO ONE wants to see that little miracle (and his or her parents!) having an hour long meltdown due to exhaustion.

Last but not least, oce the holidays arrive, put a smile on your face and enjoy them. You will never get this time back, so be merry whenever you can. Be thankful for all you have and amazed at everything you have endured and survived. Remember when it seemed like you would NEVER leave the NICU? Well, you did. Hooray! And December will end too, leaving you with tons of great memories, and about 11 months to start thinking about the next one.

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Prenatal Diagnosis & Preparing for the birth and/or NICU experience

Prenatal Diagnosis & Preparing for the birth and/or NICU experience

By Melissa Dawn Roy (Project Leader for Nimkee Blessings)

‘Welcoming’ a new baby. Is there anything more exciting? Will it be a boy or a girl? What shall we name him/her?

These are but a few of the anticipatory thoughts that often go swirling about in your head as those tiny, microscopic cells are rapidly multiplying in your womb.

It’s an incredible discovery for most. We automatically skip ahead 9 months and fantasize about that precise moment when our little one is delivered safely, into our waiting arms. Oh joy, oh bliss!

Everything is supposed to be perfect---but sometimes something goes wrong.

I will never forget how excited that I was while awaiting that first ultrasound appointment. I was going to get a chance to see my baby for the first time! I couldn’t wait to see the face, arms and legs, fingers and toes. What a miracle about to be unveiled!

With the dawning of new technological advances in medicine, comes a whole other wealth of knowledge at our fingertips. We hope for the best test results, but some of us have to prepare for other pregnancy and delivery options instead, or for baby’s treatment plans following birth.

Some of the new prenatal tests can be performed relatively early in the first trimester, and are relatively non-invasive. These procedures would include testing the mother’s blood for specific fetal cells which may reveal a possible complication or defect in the fetus.

Another form of non-invasive testing is in the form of ultrasound to visually conduct measurements and dates, as well as the development of the fetus.

Invasive testing includes Chorionic Villus Testing, and Amniocentesis, both of which require the insertion of needles/catheters to collect a sample of fetal tissue cells. These cells then undergo various tests to determine the health of the developing fetus.

I remember the day that I received the test results of the maternal serum blood testing which I opted for. I figured it would be “one last thing to worry about”. The results revealed that there was a 1:8 chance of my unborn child having Trisomy 18. My midwife explained to me what that was, and scheduled an appointment for me to see a genetic counsellor a couple of days later.

The genetic counsellor explained to me what these test results ‘may’ mean, and presented me with some options. I decided to have an amniocentesis performed for a more accurate diagnosis before planning my next decisions.

A few weeks later I received the results of the karyotype testing which was performed on the collected fetal cells during the amniocentesis. I found out that I was carrying a boy, and he had an extra chromosome number 13 in every cell tested in the sample. He was going to be born with Full Trisomy 13, also known as Patau Syndrome.

I was devastated, to say the least. After succumbing to a complete meltdown, I gathered my wits about me and prepared for the journey that lay ahead for my unborn son and I.

How does one prepare for the possibility of fetal demise in the womb, or shortly following birth? What if your baby requires some extra care in the Neonatal Intensive Care Unit (NICU), or requires surgery? It isn’t easy, but we’re here to assist you in this, should you or someone you know require some support of this kind.

Please consider the following suggestions:

• Request to speak with a geneticist, or genetic counsellor regarding any type of chromosomal or g genetic condition which may have been detected.
• Request to see a neonatologist or surgeon, or other specialist per your child’s needs, should you find out that your baby may require specific treatment or surgery following birth.
• Be sure to write down any questions you may have prior to your first visit to your prenatal specialist, which may also be known as a perinatologist, and/or neonatologist (fetal specialist) should one be required during or following birth.
• Request information and research your baby’s condition so that you may make your own educated decisions when the time comes to do so. You will become your child’s greatest advocate and supporter. Education does help to erase the fears of the unknown future.
• Reach out to a support group, or therapist in your area.
• Consider joining an online support group if you feel comfortable doing so. I did, and I can say without a doubt that it has helped me immensely along this very scary and emotional rollercoaster ride of grief and healing. It is a personal choice, and may not be for everyone, and remember that they are there to provide some comfort or support along the way, but are not medical professionals. If you feel that you require some extra assistance, please reach out to your physician so that you may be guided in the proper direction. Your emotional needs are very important during this very delicate time for you and your unborn child.
• Request a tour of the Neonatal Intensive Care Unit that your child may be seen at. Speak with the Social Workers in the department to help alleviate any fears or concerns which may arise.
• Reach out to your family, friends, and social systems and inform them of your situation. You may be very surprised by the outpouring of love and support that you and your family will receive along the way.
• Be gentle with yourself, and your partner.
• Seek out resources to help prepare other siblings for the impending birth.

Most of all, remember to try and take time to enjoy your pregnancy. I know it’s easier said than done, but it can be done. Having found out the sex of my unborn son, I was able to name him. I became very protective of this little guy, and found myself really cherishing the moments we spent together while he was still tucked safely away inside my womb. I would rub him, rock him, and tell him stories about our daily adventures.

One of the most therapeutic things I did to help get us through, was to start writing a blog---(online journal)---open for everyone to read. It was a great way to get my emotions out of me and share our journey with others, without having to look anyone in the eyes and speak the words out loud.

This pregnancy can still be a beautiful time if you learn to embrace it, and celebrate each day together.

Please know that you are not alone in this journey, and that many others like us have been where you are. Project Sweet Peas is here to assist you and your family regardless of your situation or outcome. Please feel free to check out our Website and Resource Page for more information and support links.

(http://projectsweetpeas.com/Resources.aspx)

~Project Sweet Peas: Providing comfort to families with children in the intensive care units and to those who have experienced pregnancy and infant loss~

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