nicu Archives - High Risk Hope

Emerge from a health crisis with a rock solid marriage

September 10, 2014 By High Risk Hope

By Heather Barrow

I married the man of my dreams in 2005. Bennett was kind, intelligent, funny, generous and handsome. I knew he would be a great husband and incredible father to our future children. Our wedding day was filled with joy and I did not envision anything but happy, easy times ahead. The first major trial to our marriage was in 2009 when I was pregnant with my second child. I was placed on complete hospital bed rest for 8 weeks, followed by a 2-week stay for my son Hill in the neonatal intensive care unit. When you are in the middle of a health crisis, it doesn’t occur to you that your marriage could also be at risk. During this time of extreme stress and anxiety for my husband Bennett and I, our three-year marriage was put to the test on a daily basis.

I was admitted to the hospital because my water had broken at 24 weeks and I was unable to get out of bed to do anything, which meant everything I did during the day would now happen in a hospital bed. When I struggled to digest the reality that I would not be getting out of bed for several months, Bennett when right to work. He showed me I could depend on him for anything, from bringing me my toothbrush to changing my bedpans. Bennett did everything in his power to ensure my needs were met so I could focus on our unborn baby, and it worked. Our five-year-old son is now healthy and strong and so is our marriage. Bennett and I emerged from a health crisis with a rock solid marriage and this is how we did it:

1. Put our marriage first. If you are the one who is sick, you may be tempted to pour all of your energy into your health crisis, neglecting your spouse and marriage. While in the hospital, the dynamics of our marriage changed. People constantly surround us, and my prognosis meant that I couldn’t even stand up to hug or kiss Bennett for two months. We both needed to be comforted so we found ways to stay close. We held hands when the doctors gave negative reports and watched TV at night squeezed into my hospital bed. Sustained distance can be devastating to a marriage, so find new ways to stay connected.

2. Be thankful. Bennett could have justifiably used one of many excuses not to spend each night with me in the hospital. We had a two-year-old daughter at home, the hospital was noisy, he had to work, he was exhausted, nurses came in throughout the night and the couch was small and uncomfortable. He stayed every single night and never complained once, because he knew I needed him there and that was enough. I was thankful then for the daily benefit of actually being able to get some sleep with him there, knowing he would be there if we had a 3 a.m. emergency delivery. I am thankful now for the long-term gift of a healthy baby boy. I am grateful for all he did for our family, and he knows it.

3. Recognize the caretaker is in crisis too. Bennett was not the one in the hospital bed but experienced all of the fears, stress and anxiety I did with one exception. He had to juggle everything going on at the hospital with caring for our daughter at home and still show up at 9 a.m. to work. Bennett couldn’t be two places at once and whether he was at the hospital or home, he knew that the person at the other place really needed him. I tried to emotionally support him and ask him how he was doing, even on my bad days, knowing that he may need to talk to someone without being labeled a complainer.

4. Seek counseling. Bennett and I had a difficult time coming to terms with our ordeal after Hill was discharged from the hospital. Some days we still do. Life gets busy and we never saw a marriage counselor, or talked to our pastor. I often regret not seeking help because I think it could have helped with the post-traumatic stress we both experienced from our stay. We dealt with it in other ways on our own, most notably forming High Risk Hope. A professional would have told us the lingering health anxiety was normal and given us ways to cope.

Bennett and I look back on that time now and remember it as a blessing for our family. Not everyone is lucky enough to be put in a situation that forces you to be thankful for every person in your life. Not every new marriage is put to through the ringer. We don’t take each other or our children for granted and have a family mission to help others through our work at HRH. I have a close friend who constantly describes Bennett as a Saint. I couldn’t agree more and know I am blessed to have him. I do not know what bumps are in the cards for our family, but I know what we have already overcome will help us face what lies ahead. If our roles are ever reversed, I hope I can be half the caretaker he was.

Ten ways to help a friend on hospital bed rest or in the NICU

August 24, 2014 By High Risk Hope

By Heather Barrow

Through our outreach at High Risk Hope®
, I interact daily with families in a fight for their baby’s survival, whether on hospital bed rest or in the neonatal intensive care unit. Our HRH families have become extended members of my family, but I never expected to have an experience hit so close to home. This past month I found myself in unchartered territory when my college roommate and close friend was admitted to the hospital when her water broke months before her due date. When I received an early morning text from Jill that she was in labor and delivery at my hospital, I felt sick to my stomach. I knew what she was facing and how she was feeling because I had been through that exact moment five years ago when my water broke at 24 weeks. I grabbed my keys and headed for the hospital and my role shifted immediately from former hospital bed rest/NICU mom an HRH founder to someone who needed to support and encourage a good friend fighting for the life of her baby.

As a friend, your first instinct may be to ask your friend how you can help. I can promise you, she does not know what/how much help she needs, so here are my ‘expert’ tips and ten ways to help a friend on hospital bed rest or in the NICU:

1. Roll out the red carpet. If you spent months in the hospital your friend now calls home, chances are you may have some ‘pull’ with hospital staff. You may be able to help your friend experience the ‘perks’ of being an instant member of the hospital family. I knew my nurses would love Jill as much as I do, and she would be a low-maintenance and appreciative patient. I called to let them know she was on the way and they surprised me by giving her my old room on the high risk obstetric floor. In addition to being a very lucky room, #327 happens to have an incredible view and is far enough away from common areas to keep the noise down. When you are pregnant and on bed rest for months, a quiet room with a view is a very big deal. It took my husband Bennett and I a full month of kissing up to the nurses to get that prime room. Jill got it on her first day, which was pretty awesome!

2. Deliver a Bed Rest Basket™ or NICU Napsack™. While this may sound like thoughtful gift, it is actually a critical package containing every item a preemie mom or mom-to-be needs to survive a long-term hospital stay on bed rest or in the NICU. The items we include are not provided by hospitals and ensure every patient’s basic needs are met so the patients can focus on a healthy mom and baby. If your friend is ‘lucky’ enough to be a patient at one of HRH’s hospital partners, she will receive one from us free of charge. If not, you can order a mini version starting at $35 from the HRH Store and we will ship it to her!

3. Set up a meal delivery. Hospital menus were not designed for patients who may spend months in the hospital. Even if your hospital offers a gourmet menu (unlikely), the food gets old quickly. Set up a meal schedule with very close friends to deliver lunch and/or dinner each day to the hospital. Home-cooked meals will score extra brownie points, even if you are not the best cook! It is best to set up the meal delivery schedule weekly, since you never know when your friend may deliver the baby. Send out email reminders (bcc to your friend) with the schedule and drop-off instructions. Once the baby is delivered, end the schedule immediately and let the group know you will contact them if the family wants to resume meals.

4. Decorate her new home. Bring seasonal decorations, photos, potted plants and bedding to brighten up your friend’s new home. Your friend’s surroundings have a huge impact on her mood while on hospital bed rest, and you need to ensure her spirits are lifted from the moment she wakes up in the morning. For the NICU, it is best to put decorations in a bag and leave it with a note on your friend’s doorstep, as they may not be ready to have visitors in the NICU.

5. No unannounced visitors. You may think having a friend on bed rest in the hospital is an open invitation to stop by whenever it is convenient for you. It’s not, ‘drop-ins’ are not considerate, and you should always call before visiting. There are many reasons why you should call first, here is one that will hit home. Many patients are restricted to using a bed pan and do not have the ability to lock their door. How would you like to be that person to walk in on her using the bedpan or bedside commode?

6. Become your friend’s personal assistant. Only kidding, but there are many things you can do, or encourage others to do, that will be a help during their hospital stay. A few ideas include: clean their house, run errands, mow the lawn, drop off groceries at home and help set up the nursery.

7. Throw her a baby shower. Who says you can’t have a baby shower in the hospital? If your friend gives the OK, you may be able to arrange a shower through the nurses in the hospital conference room. The friends of one of our HRH twin mommies threw a virtual shower for her where she ‘attended’ via web cam. Her husband brought a few gifts for her to open every day. You can also organize a ‘group gift’ from people who would have attended the shower, and purchase items from her registry.

8. Help her celebrate pregnancy milestones. Every pregnancy milestone warrants a celebration! Bring a cake at 24 weeks, a bagel party at 26 weeks, pizza at 28 weeks, and a doughnuts at 32 weeks. This doughnut inspiration I brought Jill was from a HRH mom, Karyn, whose sister made her “32” out of cupcakes. If it is not too expensive, invite your friend’s favorite nurses and hospital staff to thank them for all of their help and support. The positive energy you create is contagious and will come back to your friend and her baby.

9. Take care of the other babies. Whether it is older children or pets, offer to take them as much as possible. You can help by taking them to school, on play dates, to sports practice and to hospital visits. Offer to spend nights with older children so her spouse can sleep at the hospital. Be creative with your activities, keeping in mind your friend will feel a tremendous amount of guilt being away from her older children. She wants to know they are having a great time while she is in the hospital focusing on the new baby. Also, don’t forget her spouse, who may be in desperate need for a night out and friend to talk to.

10. Start a NICU shuttle. Many preemie moms deliver via C-Section and are not able to drive for two weeks. This presents a huge problem when your new baby is in the NICU. Organize a list (with cell numbers) your friend can reach out to when she needs a no-obligation ride to and from the NICU to visit her baby. By no-obligation, I mean, the driver cannot expect a detailed baby update or visit to meet the baby in the NICU.

Remember, once a preemie mom, always a preemie mom. It is important to realize your friend’s journey does not end when the baby is discharged from the NICU, and she will need your continued support and understanding. Your friend has been in a state of extreme stress because the life of her baby has been at risk every minute of every day for months. That feeling of panic and helplessness does not go away because the hospital stay is over, and can continue for years. My son is 5 and I still have anxiety when I use the soap at my hospital, which proved very difficult to manage while supporting Jill during her hospital stay. PTSD in NICU parents is well documented, a Today.com article published earlier this year stated “The experience can be so traumatic that almost 60 percent of parents whose infants were hospitalized in the NICU were found to be at risk for post-traumatic stress disorder in a 2009 Stanford University School of Medicine study. In another study, researchers from the Duke School of Nursing interviewed 30 mothers of preemies in the NICU and found all of them had at least one post-traumatic symptom more than six months after their children were born.”

Most of all continue to be the great friend you must be if you are reading this blog. Call her every day, even though she may not answer or return your calls right away. When she is ready to talk about her crisis, be there to listen. You will feel an incredible sense of accomplishment with every milestone this baby makes knowing you had a part in ensuring he/she arrived safely. I personally will be shocked if Jill’s baby doesn’t grow up to be the United States President one day! Naturally, I will be campaigning for an invitation to the inauguration.

Tips to survive your preemie’s first day of school

August 19, 2014 By High Risk Hope

By Heather Barrow

My water broke when I was 24 weeks pregnant and I spent eight weeks on complete hospital bed rest until my sweet baby boy was born at 32 weeks. He spent two weeks in the NICU and is now a healthy, happy five-year-old little boy. As the mom of a NICU baby, I can say without shame that I have over celebrated every one of Hill’s milestones in the NICU and at home. His first day of school was no different but as I make it through the end of this exciting and terrifying day, I wanted to share a few survival tips for other moms (and dads) celebrating their child’s enormous accomplishment.

1. Let the teacher know about your child’s struggles and victories. When asked to “objectively” describe my son on the teacher information sheet, I quickly realized this was impossible. Rather than stress about over (or under) emphasizing Hill’s time spent in the NICU I decided the best course of action was to remove the word “objectively”. There is no way for me to objectively describe my miracle baby to anyone, especially to Mrs. Fruit, the lucky person who will be spending hours with him every day for the next year. What he has done in five short years is nothing short of amazing, and I want his teacher to know about it. I began the description with “Hill is perfect” and ended it with “He will be your favorite student”. Do I think my child is different than other children in his class? Yes, and your child is too. Every NICU graduate has faced tremendous struggles in their life from the moment of their birth and every day since. Being up front with the teacher about your child’s past will help to establish a strong partnership for the upcoming year.

2. There is no such thing as too many pictures. Take 100 photos if you need to but make sure to document every minute of this special day. Starting school is a day every NICU parent dreams of, and you have earned the right to be that parent with the camera around your neck. I saw a cute idea today where a mom wrote the grade on the chalkboard along with the sentence “I want to be a fairy,dolphin trainer, etc. when I grow up”. What an adorable way to see how your child’s answers change on the first day of school every year.

3. Take a moment to celebrate YOUR accomplishment. How many hours on bed rest, in the NICU, at specialist appointments, in therapy sessions, in surgeries, at doctors appointments and scouring the Internet have you poured into this moment? Your love and determination is a big part of the reason your child is starting school and you deserve a huge pat on the back! How you celebrate is up to you. I spent the day at High Risk Hope in meetings to plan the Calendar Baby photo shoots and had lunch with a good friend and fellow preemie mommy.

4. Have an extra special treat ready for pick-up. Today is not the day to skimp on the sugar for the after-school snack. Go to your local bakery and pick up your child’s favorite treat to celebrate this momentous occasion.

5. Realize your child may have bumps in the road ahead. Your preemie has not made it this far to let any small setback slow him down. With a new school comes new challenges with schoolwork and friends. Your preemie will not blink an eye at these minor challenges because he has faced far greater trials and is resilient and #NICUstrong!