Life in the NICU–Advice for Mom & Dad

February 7, 2013 at 8:00 AM | Posted in Baby Romaezi | Leave a comment

It has been nearly two years for us and I still remember Kamran’s days in the NICU.  I have said several times before that one single day in the NICU was 1,000 times worse than my 82 days on hospitalized bed rest.  The question of “what should I expect in the NICU” came up on my mommy board so I wrote a list.  I’m sharing here as well with the hope that it helps.  There are so many things I’m sure I am not covering but these are a few gems I learned.  Please feel free to contribute in the comments.

Our son snuggling dad, a few days old.

Our son snuggling dad in the NICU rocking chair, a few days old. March 2011

Disclaimer–I am a mom–not a doctor.  The information below is information I learned from personal experience, not any sort of official medical training.  Aside from medical intervention, which your neonatoligist will explain once your preemie is born, I have some things I remember.

Hold on Tight:  The NICU is a RIDE. Our son was born at 35 weeks, 5 lb 3 oz, 18 inches and in the NICU for 32 days.  Every day is different and like every hard time, there are highs and lows.

Celebrate Your Baby:  Your baby was born early and has some hurdles to overcome.  With this birth being so scary and possibly traumatizing (it was for me), remember to celebrate!  I was so incredibly happy to be a mom and love my son.  At first I found myself mourning my pregnancy, the birth I thought I would have, the full term baby I thought I would bring home 2 days after he was born and it was a true effort for me to celebrate my son at first having to focus on everything that was “wrong.”

Communicate with your L&D nurses:  If you know your baby has a good chance of going to the NICU, the neonatologist and NICU nurse will be in the room.  I had a csection and before my surgery began, I’m sure my blood pressure increased when the perinatologist asked if the NICU was in the room.  You might assume that doctors, nurses and even your husband know you want a picture with your baby at birth.  Don’t make that assumption and  before your baby is born, ask for someone to take the first photo.  Not a single person took a photo of me with my son the first moment I met him.  I don’t think I’ll ever get over that.  Once your baby is born, his or her health and wellness are a priority and it will be a super stressful time for everyone in the room.  The doctor’s and nurses will check your baby, make sure he/she is okay and then let you look at him/her and touch BRIEFLY if they are.

Ask Questions and Write Everything Down:  I cannot stress enough how important it is to ask questions.  Lots of them.  With that, write everything down.  If a procedure is suggested ask why your baby needs it and what the risks are.  Even ask what your baby’s restrictions will be.  For example, a friend of mine didn’t know that you cannot hold your baby for 24 hours after they receive an umbilical IV and learned the hard way.  She didn’t get to hold her baby until she was 2 days old.  I wouldn’t have even known to ask that question if she didn’t tell me about it.  We also couldn’t hold our son at all for 48 hours after he received his PICC line.  There may be visitor restrictions in your hospital.  Our son was born during flu season and only my husband and I were allowed into the NICU.  Our parents didn’t get to meet him until he was a month old.  It sucks but rules are rules and they are there not only to protect your child and their well being but other babies in the NICU who may have more severe medical conditions than your own.  Call your nurse for updates whenever you want.  You simply cannot be at the NICU 100% of the time.  When you aren’t there, call for updates.  Every parent does. I would call as soon as I woke in the morning to see how our son did overnight and always called before bed.  I would also call if I was up pumping in the middle of the night.  The updates always had the same key info.  New weight if weighed, any brady spells or desats, any procedures needed or completed, how he ate and his bowel movements and any significant milestones like “no more isolette!”  There were days where I just couldn’t handle bad news–so I would make my husband call and that is OK too.

Medical Intervention Can be Jarring:  When I met our son he had an IV in his head.  I didn’t know to expect that.  Your baby will be connected to cables and wires, tubes and a number of beeping devices.  It was my norm and all I knew after I got used to it, but know to expect your baby will be attached to medical devices.  While your baby is attached and the monitors are beeping try not to look at the monitor if it goes off.  Look at your baby. Learn your child.  When they come home you will be on the edge about “what if they brady” or “what if that”…knowing what your child looks like when something is happening it will help prepare you for home life sans monitors.

Visiting the NICU:  Yes, this is your baby but there will be times you simply cannot visit the NICU.  Ask your hospital about these times.  The first few days, our son had to be taken for testing or procedures and I didn’t learn right away that I should call first to let the nurses know I was on my way.  Having just had a csection and wanting nothing more than my baby, I would quickly become angry when I walked all the way to the NICU from recovery only to learn I couldn’t see our son because he was being moved for a medical procedure and I had to come back later.  Once you go home, call to let your nurse you are on the way and expect to bottle feed or nurse when you get there.  If they don’t know, your baby may just be finishing up a feeding when you arrive.  Talk about upsetting when your breasts are so full and you need to nurse, you want to see your baby but then have to spend the first 20 minutes pumping because they JUST finished a meal.

Your Baby Sets the Deadlines:  Since our son was a late term preemie, my husband and I definitely only expected 10 days max in the NICU.  When he didn’t meet the milestone I set for him, I got really frustrated and depressed. Your baby will set the pace.  The doctors and nurses will diagnose and treat your baby to get him or her home as soon as they can.  If your NICU is like mine was, they are trained specifically not to give you any deadlines because they really don’t know more than the baby shows them each day.  Expect timelines to be more like “your baby needs to show us they can do x and y for x# of days before he/she can go home.”

You Are Not in Control: You ARE mom so don’t be afraid to speak up and for your voice to be heard. Your baby can’t talk. There will be “rules” your NICU has for you, know those, follow them and learn to differentiate between a suggestion from a nurse and a hard and fast rule. There will be so many people who tell you what to do with your baby it is so frustrating being mom but temporarily not being “primary care giver.”

Don’t Believe it Until You See it:  If your doctor or nurse says “Your baby might get to go home tomorrow!” it is conditional.  If you baby has a setback, like a brady spell overnight, your baby will not get to go home. It happened to us and two other preemie families I know.  I learned that until my son was in my car, I couldn’t tell myself he was going to finally go home.  Like everything else in the NICU, setbacks keeping your baby in the hospital are frustrating.

Inexplicable Heartbreak:  There will likely be a day you have to leave your baby at the hospital and go home for the first time. Nothing can prepare you for that heartbreak and the fact that you are not in control makes it worse. Make sure your husband and family know to expect tears, frustration and just plain inexplainable, unfathomable grief.

Nursing?  Ask Your OB for a Pump Prescription:  If you are planning to nurse, ask your OB for a prescription for a pump before you discharge. For most insurance companies, the pump is covered under insurance as a medical device. Insurance will pay for more if you buy your pump from a medical supply company.  You may also need to have an insurance form signed by your doctor for the pump as well ask for this before you discharge too.  You will have plenty of medical follow ups to do once you go home, this will help you simplify.

Use Hospital Resources:  You will feel alone but you are not.  Ask to meet your hospital Case Manager and March of Dimes family support coordinator. They are super helpful and know about hospital resources for you like free parking passes for the hospital garage, infant CPR classes for when your baby goes home and even scrapbooking for your baby book.  NICU will provide lactation consultants as long as your baby is there. Use them.  If you are nursing, your hospital will likely provide you with the sterile “snappies” they require you to use.  The March of Dimes has lots of resources and research as well, check out their website.

Take Care of Yourself:  You have to take care of yourself too. Go home and shower, sleep as well as you can.  It will be hard to pull yourself away.  You simply cannot live in the NICU, in fact, if your NICU is like mine, you probably are not allowed there during shift change.

Ask for Footprints:  There is so much happening and other priorities in the room when your baby is born.  Once things have settled down, ask your nurse to take footprints.  I didn’t get my son’s footprints taken until he was a few weeks old simply because I didn’t know to ask.

Ask for Medical Records at Discharge:  Ask for medical records WHEN your baby is discharged so you don’t have to track them down later–there will undoubtably be A LOT of specialist visits and follow ups her first year. It will be helpful to know what procedures were performed and when.  I had no clue how many specialist visits there would be the first year.  There were times where we were at the doctors or a specialist twice in one week.  It was a crazy time but we got through it and you will too.

Take Care of Daddy:  This sucks for mom but if you are married or have a partner, you are not alone.  Any sort of stress is hard on a relationship.  It is really tough to balance your life outside of the NICU when you have a baby in the NICU.  Be open about this but also try to spend time with your spouse.  Even if it is just dinner in the hospital cafe.  If you have other children at home, I can’t help with that because I haven’t lived it–but I imagine that would fit in this bucket as well.  Perhaps gifts from the baby, show them lots of pictures and find time to spend 1-on-1.

Be Thankful:  Don’t just say thank you.  BE THANKFUL.  Your doctors and nurses work hard and care for your baby.  Smile, give hugs, don’t just tell them thank you, SHOW THEM YOU ARE THANKFUL.  Visit if you can.  Stay in touch, bring them cookies.

I know lots of preemies from our NICU stay. They all had a really rough start to life and they all had completely different issues and medical interventions. Some were in the NICU a short period and others incredibly long. They are all turning 2 and have completely caught up. You will get through this too.

Our time in the NICU has left a lasting impression on our family.  We have participated in the March of Dimes March for Babies every year since Kamran was born.  This year will be our 3rd year walking.  Every year I am simply blown away by the amazing families, the tiny survivors we meet and how much we all have in common.  Further proof that you really are not alone on this journey. http://www.marchforbabies.org/jromaezi

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No Shampoo Updates 2/5/13

February 6, 2013 at 2:55 AM | Posted in No Shampoo | Leave a comment

I last blogged about my new hair regimen a month ago.  Time for updates.  So far I’m sticking with it and like it.  I would be lying if I told you it has been easy!

This so called “transition phase” I read about has certainly made me second guess my new experiment.  I want from oily to stringy to super dry and eventually caved for just one day **one little day** of shampoo and conditioner.  The best way I can think to share updates is with photos.  Yes, these are selfies.  I normally don’t take photos of myself but since one of my best buds is also doing this whole “no poo” thing with me, I occasionally texted her some photos with updates.  Yes, at times I’m making a funny face to show my distaste for my hair of the day.  I am not the only one in the house going the “no poo” route.  My toddler is shampoo free as well.  Since he can’t completely talk, he isn’t complaining.  I feel better that he is also going the more natural route.

Day 3 - Baking soda certainly cleans my hair.  It was a few days before I got ACV which lead to a bit of static.

Day 3 – Baking soda certainly cleans my hair. It was a few days before I got ACV which lead to a bit of static.

Day 5 - Really liking my new change, happy with my hair!

Day 5 – Really liking my new change, happy with my hair!

Day 6 - You can somewhat see how brittle my hair was here.  I NEEDED to condition but didn't have any ACV yet.

Day 6 – You can somewhat see how brittle my hair was here. I NEEDED to condition but didn’t have any ACV yet.

Day 6 (end of day) - Not good.  Not good at all.  I looked greasy and felt like I had straw for hair.  This was my first big challenge day where I doubted my new hair experiment.

Day 6 (end of day) – Not good. Not good at all. I looked greasy and felt like I had straw for hair. This was my first big challenge day where I doubted my new hair experiment.

Day 11 - Don't do what I did.  I read that I could use a teeny amount of coconut oil to condition my hair.   Not good for my hair.  I looked like I had stringy , wet hair all day.  It took a good few days to wash out, too.

Day 11 – Don’t do what I did. I read that I could use a teeny amount of coconut oil to condition my hair. Not good for my hair. I looked like I had stringy , wet hair all day. It took a good few days to wash out, too.

Day 19 - I regulated my ends a little but noticed because my hair got so britlle I was dealing with breakage.  I also noticed dander.  I was really unhappy and with the help of my friend also doing "no poo" learned that I might have hard water.  I started boiling my baking soda/water mixture and started washing my hair from dry THEN rinsing.  That helped but it was too late.  I needed to hit reset so I shampooed and conditioned my hair.  **SIN** BUT it helped so much and I'm back to my BS/ACV routine.

Day 19 – I regulated my ends a little but noticed because my hair got so brittle I was dealing with breakage. I also noticed dander. I was really unhappy and with the help of my friend also doing “no poo” learned that I might have hard water. I started boiling my baking soda/water mixture and started washing my hair from dry THEN rinsing. That helped but it was too late. I needed to hit reset so I shampooed and conditioned my hair. **SIN** BUT it helped so much and I’m back to my BS/ACV routine.

Day 31 - I'm happy!  My hair feels good and smells good.  Grapefruit is my essential oil of choice.  I need a hair cut but other than that my hair is just like it was 2 months ago, maybe a little happier!

Day 31 – I’m happy! My hair feels good and smells good. Grapefruit is my essential oil of choice. I need a hair cut but and am in the awkward bang length phase.  Other than that my hair is just like it was 2 months ago, maybe a little happier now that I am washing with baking soda and conditioning with apple cider vinegar.  

No Shampoo–My New Hair Regimen

January 5, 2013 at 2:15 PM | Posted in No Shampoo | 1 Comment
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Over Christmas break one of my besties sent me a link to a blog post about the “no poo” hair regimen. I was curious but not quite sure it was for me. Well, yesterday someone posted on my mommy forum asking if anyone has done it. So I decided to give it a whirl. There are several blogs that document the process so I won’t go into that. www.coderedhat.com/nopoo has some good info if you want to read up.

I’m most afraid of the transition phase they talk about so for those interested, I’ll document photos here. Brave, I know.

Yesterday was day 1 for me. I just washed with a wash cloth and made it through the day before getting greasy. By the evening I wanted to shower SO bad it was pretty gross feeling. This morning I did the baking soda wash and look pretty clean! Here is a pic of day 2.

My hair is typically straight, shiny and frizz free. I get oily rather quickly.

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Loopsi Daisy 200 Fan Scarf Giveaway!

January 5, 2013 at 8:00 AM | Posted in Crochet | Leave a comment
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The Loopsi Daisy Facebook page just hit 200 fans.  To celebrate, I am holding a sweepstakes contest.  One lucky winner will receive the newest Loopsi Daisy item, the Loopsi Button Up Scarf.

To enter click http://bit.ly/ZfcjtH, enter your name and email address and submit the form.  Contest entries will be accepted until 11:59 pm on 1/12/13.

Loopsi Like to Enter

Second Not Birthday for Kam

January 4, 2013 at 2:37 AM | Posted in Uncategorized | 1 Comment

Kamran’s 2nd “not birthday” as I call it has come and gone.  This year was a little easier to get through the anniversary date of my water breaking so prematurely.  I didn’t quite dwell on the scary experience as I did last year, but spent the day rather thankful.  I think my mind is healing from the trauma of it all.  That or I’ve pushed it further back in my mind.  

My hospital experience–while not something I EVER would have asked for–has certainly grown me as a person.  I learned to advocate not only for myself, but also my family.  Something new parents don’t realize as necessary right away.  My tiny hat business stemmed from the encouragement of others to keep me busy while in the hospital and it’s growing!  Kayvan and I also met some truly wonderful people and made some really great connections we would have otherwise not met.  Of course, that meant they were either in the same crummy situation as I or caring for the patients I have come to call friends.  

I still keep in touch with some of my nurse friends.  As a matter of fact, we delivered bagels to the hospital on the 23rd and got to visit with the select few nurses working during the holiday time.  We plan to keep up with this visit each year.  We also stop by whenever we are at the hospital for appointments but that is becoming less frequent, thankfully.

One of my HRP (High Risk Perinatal) Pals it turned out lives about 10 minutes from me and has become a really good friend in the almost 2 years we have now known eachother.  Our little ones were in the NICU together and in my dreamland mind, will grow up together.  She has twins so interestingly enough we are always asked when we are out if our kids are triplets.  Comical since her fair skin, blonde haired babes look nothing like my brown hair, dark complected boy.  It is comforting to have someone who just gets what you have been through and understands why some normal first time mom moments you feel jipped of may send you reeling down the “bad day lane.”

Which leads me to one of my internet pals.  We were admitted to the hospital at relatively the same time with completely different complications, in different countries even.  Our boys are 2 days apart.  Like all of my friends from this different hospital world, she gets it and is a text away if I need her.  

Another friend from the HRP unit moved out of state.  Our kids were also in the NICU together.  Before her family moved, we would meet for weekly walks post-hospital life.  She and her husband recently opened a store in their new hometown.  It’s adorable.  The sell mostly handmade items like reclaimed barn furniture…and my hats.  

When Kamran was in the NICU, our hospital only allowed parents to visit–not grandparents or any other relatives.  This means that our HRP friends whose babies were also in the NICU got to meet Kamran before our own family did.  With family not having the ability to get to know our son or even meet him until 1 month old, it means a lot to have friends who got to meet him as a newborn.

Reflecting on the 23rd, I realized that everything really does happen for a reason.  I knew it all along.  I’m glad it all worked out in my favor eventually, even though I had to serve some crummy time “on the inside” as I once called it.  

Since 12/23 fell on a weekend this year, we had some quality family time in the morning and visited the hospital with bagels, put Kam down for his nap and then visited friends to Celebrate for the holidays post-nap.  

Now that Kamran is 2, he is quite caught up with all of the non-preemies and I’m much more at ease with all of his developmental milestones.  He is starting to string words together and is also a great eater–thankfully!  I’m not sure how much longer into toddlerhood the eating thing will last but I’m sure “NO, MY DAT!” will stick around for quite a while. 

We spent Christmas Eve and Christmas day with family of course, and the week in between Christmas and New Years on vacation with friends.  Kamran is one cool, easy going kid.  I love this boy and he was worth every moment laying in that hospital bed.  One thing I never doubted. 

Here are my two favorite snuggle bugs on Christmas Day.  Image

Cooking for Kam: Spinach & Swiss Grilled Cheese

December 2, 2012 at 4:52 PM | Posted in Baby Food | Leave a comment
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My boy loves cheese and bread as much as every other toddler. Sometimes I feel guilty giving him straight old fashioned grilled cheese. I serve it with fruit and veggies but want his main dish to have extra nutrients too.

Today we opted for Swiss and spinach grilled cheese. I cooked it the same way you know and love and with plenty of butter. I’m not sure if this counts for “sneaking veggies” since he loves spinach and will eat it as a simple side dish but I found it wort sharing.

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Loopsi Daisy Adult Headband

November 17, 2012 at 3:37 PM | Posted in Uncategorized | Leave a comment

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My blogging has died off since my hospital days. Guilty. I am still crocheting like crazy though! Lately I have been asked by several of my Facebook followers if I make adult items. I DO! Check out this chunky headband.

The item is also here in my Facebook gallery.

Textured Newsboy Hat with Oversized Flower

October 25, 2012 at 4:26 AM | Posted in Crochet | Leave a comment
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Fall is here and our family has been super busy participating in fall festivities.  We have visited pumpkin farms, the Renaissance Festival and we even went on VACATION!  This past month has been super fun.  I’m trying to be a better blogger, honest.  But I’m having SO MUCH FUN spending time out and about with family.

I’m also crocheting like a crazy woman these days!  Check out the freshly looped hat below!  I got a request from an old high school friend for a pink and white newsboy for her daughter.  I decided it would be fun to play with textures in a new book I have.  I have to say, my hats always look better on.  This photo doesn’t do it justice, but I really like the way this hat turned out.  I hope the little lady I made it for likes it too!!

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Textured White Newsboy Hat with Pink Flower

Stuffed Pumpkin

September 18, 2012 at 1:20 AM | Posted in Uncategorized | Leave a comment

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Outside of pie, I’ve never really eaten pumpkin as part of a meal. I made pumpkin purée with cinnamon for Kamran when I was making him baby food last year and it was one of his favorites.

It’s almost fall again and pumpkins are back in the produce department at our grocery store. So I needed to figure out a pumpkin recipe I could make for the family which both Kam and Kayvan could potentially eat. A friend on Facebook posted that she was making stuffed pumpkin–and there I found my answer. The recipe she posted was rather meat intensive and finished off with bacon. I wanted something more fruity, below is what I came up with.

Ingredients:
Pumpkin
1/4 lb sausage
1/2 onion
1/2 cup cooked cous cous
1/4 cup cranberries
3/4 apple diced
Butter
Cinnamon
(hindsight says I should have added cinnamon or brown sugar…or both to the mix)

Preheat oven to 350 degrees.

Slice off the top of the pumpkin, remove seeds and strings. Melt butter and lightly coat the inside of the pumpkin. Sprinkle inside with cinnamon.

Remove sausage from casing and sautée with onion, drain. Mix in diced apples, cranberries and cous cous.

Stir all ingredients together and stuff pumpkin as tightly you can.

Replace top, place in baking dish with 1/4 inch of water on the bottom. Bake 1 hour and 15 minutes or until pumpkin can be pierced through with a fork.

To serve, cut in quarters.

Sun Dried Tomato Pasta Salad with Pine Nuts

September 1, 2012 at 7:14 PM | Posted in Uncategorized | Leave a comment

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I’ve been MIA for quite some time. SORRY!! Summer fun and all that jazz! Now that Kam is a toddler getting out is the thing to do!!

I got a hankering for sun dried tomato and turned it into a yummy recipe I thought I would share.

IT’s so super easy to make too.

Ingredients:
Pasta of your choice (I went with mini bow tie)
3oz Julienne cut sun dried tomato
2 oz pine nuts
14 oz artichoke hearts in brine (drained)
3/4 cup sundried tomato salad dressing
Fresh basil
Salt & pepper to taste

Directions:
Cook the pasta. The beauty about mini pasta is that it cooks quickly. Roast pine nuts in oil (optional). Mince basil and cut artichoke in bite size pieces. Add all ingredients, stir and refrigerate until chilled.

We will be taking this for lunch a few times this week. Yummy!

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