This week has been emotionally rough for so many reasons. We are so excited to welcome Micaela home, but are experiencing so many different emotions. We're freaked out, paranoid something will go wrong, anxious we will love her too much or not enough, and so tired of explaining our feelings or wishes to people. It's a lot!! I drafted an email to family and friends regarding what to expect from us when we have Micaela. There are things we want and don't want. We wanted to be very clear with family and friends so that there were no misconceptions. My email was a bit "harsh" in Matt's words. It's difficult to find a good balance between what we need as a family healing and what we want to share with others. Orriginally Matt didn't want any visitors for the first week or two. He wanted to be alone with M and me and just bond.  I agreed completely. I know we are going to have a lot of new and old feelings surface and we need one another to get through them. Another reason for not having visitors was that Matt only has a few days off before he returns to work and rightfully so he didn't want to share that time. We wanted to make sure we got bonding in before he had to leave. After months of having this be our decision we decided to touch on the topic again. We knew it would be hard to have family and friends wait so long to meet Micaela. We know you are super excited and want to show your love and support. Matt and I talked again and decided that we would welcome visitors the second and third day at the hospital during visiting hours. We want our families and friends to meet our miracle. We know so many wanted to meet Grace and Wyatt but due to the Nicu stay and rules were unable to come. We feel Comfortable with our decision but everyother day we recoil and say maybe we should not have visits.. I guess we will know the day she arrives.

Anyway I have been having major anxiety about a few things surrounding Micaela and our coming home. I am so eager to spend time bonding with her and getting to know her. We will also be battling a mixture of emotions. People ask what emotions? Why will we be sad? Simply because Micaela doesn't fix us, we still lost Grace and Wyatt. We will forever mourn them. The happiness that M brings reminds us of the things we missed out on with Grace and Wyatt. Or it will bring back emotional Memories of things we did with them,  like feeding them, diaper changes, the first time we held them etc. we are happy and we know Micaela will bring a joy and happiness into our lives that nothing else could have, but it will take time. Please be patient and love us through this time.

On one of my support group boards I asked fellow rainbow mommas if they had any good tips, articles or blogs to share. I wanted to get some ideas on how to prepare family and friends for our wide array of emotions. There were none!! We couldn't believe it. A fellow rainbow momma and I compiled my email and her experience bringing her rainbow home and created a blog entry... Below are our words. Hers seem much more gentle than mine! Lol. I hope it helps our family and friends see what we need and are experiencing as well as I hope it reaches other rainbow mommas!! Muah! We love you and can't wait for you all to me our rainbow Micaela!!

Thank you Jill for helping put this blog together. Your knowledge, compassion and constant support mean more to me than you can know!! Your fellow rainbow mommy tac sister.

Bringing Home A Rainbow

Jill Donald

Bringing home a rainbow baby – a healthy baby after the previous loss of a child – is a joyful but difficult time for the parents. Rainbow mamas and papas deal with a lot in those first few weeks and months. I know this from personal experience, unfortunately. I lost my little girl, Lucy, after two months in the NICU. Less than 10 months later, we were bringing home her baby brother. It was beautiful and exciting and terrifying, as it is for all new parents, but some of that – especially the fear – was magnified. In addition, we were struggling to deal with our grief for Lucy and a lot of other complicated feelings. We felt guilt that Lucy never came home with us and wouldn’t get to grow up knowing how much we loved her, sorrow that our son would never know his sister the way we knew her, and terror that somehow we would forget her, OR that we would live so much in her memory that we would neglect William. None of it really makes sense, but these are some of the things that go through your head.

So what can you do to help the new parents of a rainbow baby?

You might have seen lists of ways to help new parents. Those are a really good place to start, because those all still apply to parents of a rainbow baby.

Schedule your visits. Don’t be early, don’t be late, and for Heaven’s sake, don’t just drop in. We’re trying to get the hang of things, learn the baby’s schedule, learn how to feed, and trying to get some sleep in wherever possible. We’d like to see you, but not while the baby is napping. And if your rainbow mama is like me and many other new moms, she might have her shirt off during much of the day while she and baby learn to nurse. Nobody wants to see that.

For now, keep visits short. We’re exhausted. This shouldn’t be surprising to anyone who has ever had children, but labor and delivery take a lot out of mom, and taking care of mom and baby takes a lot out of dad. And the chaotic mix of emotions accompanying the birth of a new baby after the loss of a baby would take a lot out of anyone. I spent a huge amount of time the first few weeks of William’s life a sobbing mess. I was happy, and sad, and relieved, and guilty, and a thousand other things. No matter how close we are, the only person I want to share that with is my husband. I enjoyed company, but I could only keep on my company face for so long at that point before I melted down.

Help us spend more time with our new baby.Those first few weeks of a baby’s life can never be repeated, and if I could, I would spend them just staring into my baby’s eyes. I would never ask for any help, but if you’d care to bring us an easy meal (in disposable pans and dishes!), that would be lovely. If you’re visiting, you might say “I’ll just do some dishes for you, if you don’t mind.” Don’t ask, because I’ll just say no. I might say no anyway, but I will definitely appreciate the offer. Same goes for other chores like mowing the lawn.

Do not come anywhere near me or my baby if you are sick, have been sick recently, or have been around sick people recently. I love you, really, but if you just came from your job as a kindergarten teacher and hopped the cross-town bus, I’d really rather you kept your germ-infested self at a distance. I know, that sounds incredibly harsh, but consider this: we’re heading into flu, whooping cough, and RSV season. Any of these can be devastating to a newborn. Any of them can potentially be deadly to a newborn, in fact. I am not about to risk another baby because I let somebody visit who shouldn’t have. And I don’t necessarily know your situation, so please think before you visit. I will 100% freak out if my new baby gets sick. You know why? Because my Lucy died from an infection. I don’t know if I could handle the stress of having another sick child right now. Please be understanding of this particular craziness.

Along the same lines, wash your hands when you visit. As I mentioned, this is the season for some bad infectious diseases, and they can be picked up almost anywhere. Washing hands is the number one best way to prevent their spread. Please don’t make me ask you to wash your hands, because I hate feeling like an obnoxious nag. I would love it if you would wash up as soon as you come in, and certainly before holding the baby. Please also avoid kissing the baby’s face. Their little immune systems are so delicate at this point, and like I said, I will lose it if my baby gets sick.

In general, respect boundaries. Every set of new parents will have different comfort levels, and the boundaries of rainbow parents might be different than you expect from new parents. They might have very strict guidelines for hospital visits. They might not want to be visited by young children for a while, or they may not want any visitors at all for the first couple of weeks. They may need more time to themselves to figure out how they work as a family. If they’re like me, they need time to figure out how to parent a living and a nonliving child, and to sort out their feelings for their new baby. They will very likely be more anxious than normal about the health and safety of the baby. Be patient with them. They are this way because they know the incredible pain of losing a child, and can’t bear the thought of it ever happening again.

Don’t be afraid to talk about the child or children who cannot be with their parents and siblings, and don’t be afraid of any tears that result from such talk. Say “Lucy would have been such a good big sister. I’m sure you’re missing her terribly right now. Know that I’m here for you.” I might very well cry, but I will be so grateful.

The most important thing you can do to help rainbow parents is to understand. Understand that they might be a little crazy about their baby’s safety. Understand that they might not want company all the time, and don’t take it personally. Understand if they get tears in their eyes as they smile at their baby. Understand that this baby, loved powerfully though it may be, can never take the place of the child who was lost. Rainbow babies don’t “fix” their parents’ sorrow at having lost a child, but they bring new joy. If the rainbow parents you know are anything like me, they want to share that joy with all their friends and family, just . . . carefully. Because we know how fragile life can be.

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September 24, 2013Leave a reply

Nicu babies- what to say...

I read this article today and thought it was a very helpful read. After our journey in the Nicu, and watching so many friends babies have Nicu visits  I think it's essential to be knowledgeable of how the parents feel. Many of these situations are foreign to us. I hope this can help, if we can help even one family it's worth posting!! Xx



What to say to anyone who has a baby in the NICU
JENNIFER GUNTER, MD | CONDITIONS | SEPTEMBER 20, 2013

A friend delivered twins early. One is in the NICU, one died. What can I say or do?

This question was sent to me via Twitter. The person who added my name to the tweet knew that I might have something to offer because 10 years ago I was that friend. I entered the hospital with ruptured membranes at 22 1/2 weeks, pregnant with triplets. My son Aidan died at birth and my surviving two boys, Oliver and Victor, had a long and complicated course in the neonatal intensive care unit (NICU), because that is pretty much the only road for babies born at 26 weeks.

I started to write a response, but stopped several times. I just couldn’t capture what I needed to say in 140 characters (and what I have to say really applies to anyone who has a baby in the NICU, whether they have lost a baby or not).


What not to say or do:

Do not say you are sorry or that you know how the parent must feel. Sorry is so ineffectual and you can’t know how someone feels who is trying to navigate mourning the death of their child while trying to rally enough personal resources to hang on for dear life to the roller coaster ride through the antechamber of hell that is the NICU. Even if you have been there, like I have, you can’t know what it feels like for someone else.
Do not ask for any specifics about the delivery or the circumstances that culminated in the delivery. They are horrible enough to go through as a parent, never mind re-live so you can tell someone else. It drove me nuts when people wanted to know the unique, but none the less horrible, terrible, life-fucking-changing events that caused me to deliver in the way that led to death of one of my children and the terribly unfair start to life for my other two. Listen yes, ask no.
Do not ask how the surviving baby is doing. If the baby is doing “well” they might feel strong enough to volunteer, but it rips your soul apart to report that your baby isn’t doing well (imagine doing it over and over again?). It is even hard to talk about a typical start to the NICU, which for an extremely premature baby means oscillating minute by minute between surviving due to all the advances of modern medicine and alarms that bring everyone running.
Do not say, “Well at least you have another one,” or some variation thereof. That was said to me. Really. Having a child does not make the death of another child any easier and it really diminishes the life of the baby who died. My son lived for 3 minutes and those 3 minutes were a lifetime for me.
Do not offer medical advice or critique the medical care. It doesn’t matter how much you know or think you know about premature babies, it is unlikely that you have enough information and education to offer a medically sound opinion. Causal comments such as, “Isn’t all that oxygen dangerous?,” or “That’s a lot of chest x-rays,” create doubt, cause more worry, and can lead to conflict. Remember, in addition to bonding with her/his baby your friendhas to bond with the NICU staff.
“He’s so small.” I wanted to punch people who said that. “Really, I’d never noticed, thanks ever so much for pointing it out and you know it doesn’t worry me at all.”
What to say and do:

“That must be so hard for you,” or a variation. Nothing you can say will make it better, so don’t try. And it is so hard and that should be acknowledged. You can say this phrase in almost any situation.
Learn to listen. If specifics are volunteered, and some people do need to talk , just listen and hug if appropriate.
Offer to look after things around your friend’s house. In fact, help organize a team of people to help. Lawns need to be cut, dogs walked, cats fed, mail collected, and laundry washed. It is so hard to do any of that when you want to be at the NICU every waking minute, never mind while you are mourning your child. This is especially critical if there is another child at home. Offer to take any children at home out for playdates, arrange sleep overs, drive them to school etc.
Offer food. If they are sleeping at home stock their fridge or drop off a pre-made meal. If they are living at the hospital or a Ronald McDonald house give gift cards for local restaurants.
Offer to be a point person. Relatives and friends want information, but it is hard to do especially when the information might not be good (see above). You can say something like, “People will be asking for updates because they care. I can help you with that.” You could forward the e-mails to me and I’ll reply for you.” You can also offer to set up and/or maintain a CaringBridge account with details or Facebook page if they are the Facebook type. Not everyone wants to share this way, but some do.
Send a gift. Just because a baby is in the NICU doesn’t mean that birth should be less recognized. Not one person sent a baby gift while Oliver and Victor were in the hospital, they all waited for the shower which was held the day before discharge. People hold back thinking, “What if I send something and then their baby dies? Won’t that make it worse?” Trust me when I say that an unused onesie does not make your baby’s death harder to deal with. Send a small stuffed animal or preemie clothes (this would be an ok time to ask about weight, because if the baby is 1 or 2 lbs a 4 lb outfit won’t fit). The dearest thing to me is the stuffed bear that a nurse put in the crib with Aidan. Not a week goes by that I don’t take it out of the drawer and hold it.
Ask to see pictures. You would do that for any newborn. Preemie parents are ostracized enough, so offering tiny bits of new parenthood normalcy is priceless. Parents don’t just see tubes and wires, they see their precious baby and you should too.
Donate blood. This is a very personal gift that you can give even if you live far away. Send a small card with a note saying you donated blood in honor of the babies. Mention both names if you know them. Many preemies need blood transfusions to live and the parents will know that their baby’s survival depends on the good will of blood donors and so it is such a wonderful gesture.
Get vaccinated for pertussis. Preemies are especially vulnerable to whooping cough. You should do this if you live close or far away. If you live far away you can send a little note with a gift card or stuffed animal and add that you got vaccinated against pertussis to help protect all preemies and you will encourage all of your friends to do the same.
Send a book on prematurity. It didn’t even occur to me to look for one. BIAS ALERT — I wrote a book, The Preemie Primer. I think it’s an awesome book, but there are other books. When I finally got around to reading the few books on preemies it was clear they weren’t right for me, so I wrote the book that I would have wanted the day I walked into the hospital with ruptured membranes.
Stick around. The NICU course is long and many friends flame out after the first bag of groceries.
What can you say or do?

A lot.

Jennifer Gunter is an obstetrician-gynecologist and author of The Preemie Primer. She blogs at her self-titled site, Dr. Jen Gunter.

Our story...

A few months ago I had the honor of sharing our story on a wonderful site for bereaved parents. I was recently asked to share it with another blog in hopes of spreading information to other families. Today marks the one year anniversary of losing our sweet Grace and Wyatt. It has been a long year. It has been painful, beautiful, and full of learning, loving and accepting. It hasn't been easy, but I'm proud to have survived it even if it was merely surviving. Return to zero was the original home of this post, it's a site dedicated to families who have lost a baby in any stage of life. It is based on a real life couple who experienced the tragic loss of their son at 37 weeks while in utero. All too often the loss of a child is passed over, looked away from. As a society we have no idea how to cope with it. We avoid acknowledging it at all costs because it makes many feel uncomfortable. All to often these parents are left to suffer in their own silence. This movie hopes to shed light on a very real Topic. It is raw and heart wrenching. I hope when I arrives in theaters you will take the time to see it, share it and learn from it. One hug, one smile, one minute of just listening can help heal a parents sole more than you know. Matt and I couldn't have survived this year without all the love and support we had. So many of you carried us through our darkest days. You showed us hope when we couldn't find it, you gave us space when it was needed and showered us with kindness. We will forever be humbled and full of gratitude for all you have done for us! The second blog we were asked to share on is the ocwalktoremember blog. many of you joined us two weeks after our loss to walk in memory of our babies. we walked the steps on earth that they didnt ever get to. we were so blessed to have found the walk and all the amazing support it has offered. we plan to walk every year and raise money to help support other parents who lead similar paths. this year the walk is october 5th. you can get more information online at www.ocwalktorember.org we are team Gracie and Wyatt Natelborg. we would be honored to have you walk with us!! Hope you enjoy the read!! Xo

(This is a guest blog by Andrea about her children, Grace & Wyatt. Thank you for sharing this with us, Andrea.)

My husband and I got married March 5th 2011.  We knew we wanted to start a family and knew we would need assistance in doing so due to my health history.  I was diagnosed at 18 with stage 4 endometriosis and chronic ovarian cysts.  After months of fertility treatments we became pregnant.  Sadly we miscarried shortly after.  We continued our journey, crushed but not fully aware of the true ache that would consume us.  We became pregnant again after another round of treatment.

This pregnancy seemed to be going well and then one Sunday I woke up to bleeding and abdominal cramping.  We shortly lost that baby too.  A year of more painful fertility treatments passed with nothing to show but empty arms and heavy hearts.  We decided to try again and this time became pregnant with twins.  Grace and Wyatt.  We were beyond hopeful but still so full of fear.  We had lost all of our prior pregnancies so we cautiously watched the days pass.  The babies looked wonderful and we had a due date of December 21 2012.  We couldn’t have been happier.

On July 16th our happiness turned into terror.  We had a routine Dr. visit.  It was discovered that I was having contractions and that my cervix was too weak to support a pregnancy.  We pleaded for a cerclage, a stitch that is sewn into the cervix.  It helps to support the weight and prevent shortening.  It doesn’t promise anything but it can provide a few more weeks.  Our team sadly refused to place the stitch.  We were heartbroken.  We were sent home on strict bed rest, and medications.  One week later my cervix went from 2.5 to .98.  We were devastated.  The team still didn’t have any options for us besides continuing bed rest and hoping we make it to viability.  We were 17 weeks at the time.  We would have done anything to bring our babies home safely so I never once complained about being bed ridden or my lack of control.  I relied on my husband, family and amazing friends for everything.  I was allowed to shower every 3 days, but had to remain sitting and had to be quick.  The days passed and we were getting closer to viability.

I was admitted to the hospital for closer monitoring.  I lived there for two long months, all the while hoping we would bring our sweet Grace and Wyatt home one day.  Living in the hospital was emotionally hard.  The food was hard to eat, especially since I wasn’t using much energy in bed.  I was rarely hungry but forced myself to eat as much as possible in hopes of helping our babies gain weight.  My husband decorated my room.  He brought books, flowers, a computer, all of my shampoo, soap and bathroom supplies.  He brought me outfits and even had twin sized sheets for my bed.  He was amazing!  I knew I was lucky to have married such an amazing man, but that time showed me exactly how strong and loving he was.  He helped me shower, he helped me on and off the dreaded bed pan, got me water and encouraged me the entire time.  We never thought for one minute that we wouldn’t survive.

August 29th 2012, 23weeks 5 days… two days shy of “viability”.  My contractions became worse, they were very strong and the doctors thought I would deliver that night.  We prepared for a c-section all the while praying we would make it though this.  Praying that our Grace and Wyatt would survive and not suffer.  We asked the doctors to do everything possible to save them.  I was placed on Magnesium to slow the contractions and also provide a barrier for the babies brains.  I was given steroid injections which help to mature the babies lungs.  I felt like a bus had hit me and my body was on fire.  The medication took a huge toll on me.  My head ached like never before.  Days passed on the medication and we were still pregnant.  My contractions were getting further apart and we hoped to make more days, weeks… I felt horrible, I just knew something was wrong.

I begged my husband not to leave my side.  I told him I thought I was dying and honestly I did.  I was struggling to breathe.  I knew something was wrong.  My doctor arrived and took one look at me.  He ordered the medication be stopped and a chest x-ray be performed.  I was right, my lungs were filled with fluid, I had pneumonia and was struggling to breathe.  I had absolutely no energy for anything.  I tried sleeping but the air starvation and my pounding head made it hard.  I slept through my viability week!  We finally started relaxing a bit.  We reached 25 weeks and pushed forward.  At exactly 25weeks and 5 days I went into full blown labor.  There was no turning back.  I was rushed into an emergency c-section where we delivered our beautiful babies.  Wyatt was born September 12 2012 at 12:55 and Grace arrived at 12:56.  They cried, they were intubated and taken straight to the nicu.  I didn’t get to see them right away but my husband caught a view as they rolled them out.  I spent the next few hours in recovery but pleaded to be allowed down to the nicu.  I wanted to see the babies, to touch them, to tell them I was so proud of them and that I loved them always and forever.

They were beautiful.  I was shocked at how small they were, yet how strong and perfectly formed they were.  Wyatt looked just like my husband, his skin was light, and he had light blonde hair on his beautiful head.  My husband is a brunette now but was a cute toe head as a kiddo.  Wyatt’s nose was my husbands nose and we jokingly apologized to him for it.

Wyatt looked so big compared to his sister.  Wyatt was 1lb 12oz.  We were in love instantly.  Grace looked just like me.  She had an olive complexion and the sweetest brown hair.  You could see the waves in it already.  She was very petite.  She had one eye open and we always joked that she had her eye on us!  She weighed 1lb 4oz.  We never for a second believed they wouldn’t be coming home with us alive.  We knew we were in for a long nicu stay.  We knew of the complications that could follow, but we knew that we were willing to be there for every step of that journey.  They were our babies and we would have done anything for them, and we did.

Three days passed… our beautiful angels were perfect.  They were doing ok, not great but not horrible.  Then that night our world came crashing in around us.  At 3am we were alerted that Wyatt had suffered a bleed.  He was very anemic and needed a blood transfusion.  Of course we signed the paperwork and rushed down to the nicu to see him.  They had him on a blood pressure medication to help increase his pressure, and started the infusion.  Grace looked good, but I think she felt her brother suffering.  Her little heart was racing.  They decided in the morning that they would run more tests and also do head ultrasounds to see if they had brain bleeds.  We prayed on our hands and knees for them to be spared.  I prayed for them to be out of pain, to be the miracle I knew they already were.  We had so much faith, we were so strong then.

Sadly we were given terrible news.  We learned that Wyatt had a grade 4 brain bleed.  This was the most severe.  He was having seizures and was in so much pain. My heart broke watching his little body struggle.  We also learned that Grace too had a grade 4 brain bleed.  We were besides ourselves.  We continued to pray and support the babies.  Another day passed and we had an outside dr come in to give us a second opinion.  The babies were getting worse and were suffering.  Aside from the brain bleeds our sweet angels lungs were shutting down.  We were devastated.  We asked to be able to hold our sweet Grace and Wyatt.  We didn’t want them to pass in their cribs.  We wanted to kiss them, to place them against our skin, to talk to them and then to put them side by side just as they had been for the past 6 months.  We were able to do so.

Our angel Wyatt passed at 5:25 on September 16 2012, and Grace followed him at 6:30.  We felt at peace then, I have no idea how we made it out of the hospital and into our car.  We had nothing to carry with us, our car was filled with 2 months of hospital accumulation.  It didn’t have car seats, it didn’t have Grace or Wyatt.  The drive home was soberingly silent.  When we arrived our house was filled with boxes of baby gear, baby clothes, toys etc.  We sobbed and went to bed.

The two weeks following our loss was a blur.  We were so busy planning the cremation, the celebration of life party and we were preparing to do the ocwalktoremember.  I was in denial and my husband was doing his best to carry me forward.  We took a trip to Yosemite where we spread some of the babies ashes in May lake.  We spent days in nature sobbing, and learning how to breathe.  It was a much needed start to our end.  As the weeks passed I became more and more depressed.  My husband broke down often but held it together all too often to help show me that he was strong and that we would be ok.  I became suicidal.  I didn’t want to do anything.  I stayed in bed, never sleeping, my mind running a million miles an hour.  I didn’t eat, I just survived.  My husband found an amazing therapist and brought me to him.  I have been seeing him weekly since then.  It has helped so much.  Our relationship was rocky.  I was so angry and hurt.  I was mean and cold.  My husband had not only lost his two children, but his wife was now a shell of a person he once knew.  He continued to love me and encourage me.  He has been instrumental in my healing.

In January we decided that we would attempt IVF again.  We had looked into surrogacy but it just didn’t work out as we had hopped.  We transferred two embryos again and were lucky to become pregnant.  One baby survived the transfer and implantation process.  We called the baby EM.  If the baby is a boy we planned to name him Ethan Wyatt after his brother and if the baby is a girl her name will be Micaela Grace after her sister.  I am heading into my 20th week today.  It has been very emotional and so hard on me.  I have had a really hard time becoming attached to the pregnancy for fear of burying another baby.  At 13 weeks I had major abdominal surgery to place a TAC- abdominal cerclage.  This type of band is placed around the cervix just below the uterus.  It is placed abdominally using either your old c-section incision or 5 small incisions in the belly.  The risks are high and the recovery was brutal.  This band is permanent, it requires a c-section delivery and very close monitoring.  We were so blessed to have found information and experienced doctors to place it.  We are finally starting to exhale a bit, but are still very cautious.  We just shared the news with family and friends last week.  We are so very hopeful.

We will always miss our beautiful Grace & Wyatt.  We will always wonder what our lives would have been like had they survived.  We will always think about the people they would have grown into, the friends they would have made, the jobs they would have chosen.  I miss them every second of everyday, but I am learning to find the hope to live again.  I am so excited to see them again one day!  Until I can hold and kiss them again I will do my best to be the best mommy possible to their siblings and the best wife to their daddy.

Eleanor Roosevelt once said “You gain strength courage and confidence by every experience by which you really stop to look fear in the face.  You must do the thing which you think you cannot do.”

I will continue to live, to be a mommy and to be a wife.

Thank you for your time and listening.

Andrea