Posted on March 10, 2015 9:30 am

NICU Life: Week 9 & 10

Day 57 * Thursday, December 4, 2014 * 4lbs, 5oz! (1950g)

Today’s update: A God Wink

My cup runneth over.


 

Day 58 * Friday, December 5, 2014 * 4lbs, 5oz! (1960g)

The fog was thick on both my drive to and from the hospital. One of those dreary days, which I attribute my mood to: blah and tired. But my blahs will be cured in about an hour when we meet some friends for dinner.

My day started off tearful as Jordan told me my birthday itinerary. He has planned a wonderful day for me on Sunday, which includes breakfast, church and an afternoon at the Sea Island Spa! But the one big piece missing is my Marjorie.

He said he was going to go in the afternoon while I was at the spa. My heart felt so torn. I want to be with Jordan, Manning AND Marjorie on my birthday AND I really want to have some spa time. So I do what any logical thinking woman does: I blamed my husband for my heartache and cried. Jordan knew what the tears were really for and told me he would create another itinerary and I could choose.

I spent half the morning vacuuming dust bunnies the size of our bulldog; then headed to the hospital in time for her noon feeding. Lucky for me she slept through the 9am and woke up for me at noon.

She had a wonderful day and even woke up a little for her 3pm feeding, but we didn’t want to push her too hard. That is the world of preemie: they are the boss. If she is awake, she eats. If not, she sleeps and is tube fed.

Now we are in a waiting game and obeying Marjorie’s instructions. She cannot go home until she is eating all feedings via bottle or nursing. Right now she wakes on average every other feeding, taking anywhere from 10 to 27mL out of 37. She did take her whole bottle once! So many positives!

We still have this feeding part ahead of us. And while we are SO thankful for her progress and good health, it is still hard to not have her home. I pray for peace and patience. My Christmas Wish might not happen and I am trying to accept that.

I continue to work on staying in the moment and focus on today. Today, Marjorie and I had a great day together. It is always a good day when I hold my girl. All is right in the world when she lays her head on my heart so I soak that in until tomorrow.

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Day 59 * Saturday, December 6, 2014 * 4lbs, 6oz! (1980g)

Quick update tonight. I’m getting ready to go out for my birthday dinner. To be honest, I’m trying to get excited about it.

My heart really hurts today. It is always painful to leave my girl, but today just got me. I love our time together and today was Spa Day – something both Marjorie and me love. I got her all squeaky clean and in one of her beautiful new outfits (with a matching hat!).

She is doing so well and is simply a doll, I can’t help but want to bring her home. She is still only waking about every other feedings, sometimes every three feedings and doesn’t take the whole bottle. Nurses say that she will suddenly start taking the whole thing. They say it is like a ‘light bulb’ goes off with preemies and they start eating.

I keep reminding myself that she is only 35-weeks gestation and still small. It is often hard to remember that because she has come SO far and has done so extremely well.

As I walked through the empty parking garage this afternoon, I felt as though the wind was knocked from me. There was no stopping the tears that rolled down my cheeks as I slowly made my way to my car. Once again I was leaving without my girl and once again I had an the hour and a half drive ahead of me.

Today was one of those days when you feel like this will never end. You pray for patience and peace, but nothing mends the heart. So I came home sobbed and screamed into my pillow. I always have the option to stay home and get in my jammies. But tonight will be fun. I am a firm believer that getting dressed and getting out can be good for the soul. Laughter, good food/friends and wine doesn’t cure a broken heart, but certainly helps distract from the pain.

Tomorrow is a new day. Tomorrow is my birthday. I plan to stay home and spend time with my boys and also relish in my birthday gift: a spa day at Sea Island Spa. Today was Marjorie’s spa day and tomorrow will be mine.

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Day 60 * Sunday, December 7, 2014 * 4lbs, 7oz! (2000g)

That’s right. We have hit the 2,000 gram mark. Last night she weighed in at 4lbs, 7oz! And at 11:30pm last night she took her WHOLE bottle. But she didn’t stop there. She took another whole bottle at 11:30am this morning almost the whole one at 3:00pm. It was the best birthday present!

I had a wonderful birthday filled with lots of love and R&R. The Sea Island Spa is AH-Mazing. My Island Bestie and I enjoyed an entire afternoon at the spa. I may or may not have dried off with a bath mat and taken a cold shower because I couldn’t work the fancy shower head. Clearly, I need to spend more time at the spa.

Lexie and I ended Spa Day with a drink at the Cloister and then headed home to find Jordan cleaned the whole house. Manning was just getting up from nap when I got home so I got lots of snuggles before his motor started going and he was back out the door playing trucks.

Thank you all for every call, text, post and message. They have all warmed my heart and made my day. Going to bed relaxed and rejuvenated…and of course counting down the minutes until I’m with my miracle girl again.

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Day 61 * Monday, December 8, 2014 * 4lbs, 8oz! (2030g)

It was a big day for Team Marjorie! Not only did she celebrate her two month birthday, she took multiple consecutive bottles and not just half a bottle. We are talking the WHOLE thing, which was actually increased to 40mL today! The light switch the nurses talked about seems to be turning on. Our Christmas wish to get our miracle home just might come true.

The equally exciting news of the day is that we finally got to ‘pop the top’ to Marjorie’s incubator!!! She is out in the open and loving it. Well, maybe. She is adjusting to the new noises and beeps of her new world so is a tad more restless. But actually doing quite well with it all.

Marjorie’s daddy had the day off so of course he hogged her the whole day. She got the hiccups after her bottle and Jordan tried to “scare” them away. Yes, my husband said “BOO” to our preemie baby girl. Nurse Mary and Lisa and I lost it and started balling crying. Needless to say, he provides NICU entertainment on his weekly visits.

It was a really good day. A great day. We all watched in awe as she finished her bottle. Lisa and Mary looked at me and said that with her taking bottles, she will most likely be home by Christmas (barring any complications of course).

Even with the exciting day, I find myself tapering my emotions. If I’ve learned anything in this journey it is that life in the NICU is unpredictable. I have tried my hardest to focus on one day at a time since September 29th and that is what I continue to do until she comes home (and maybe thereafter). Staying in the present is good for all of us. We all get ahead of ourselves, focusing on what could happen or what is to come. Recovery and now Marjorie has taught me the present is what really counts.

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Day 62 * Tuesday, December 9, 2014 * 4lbs, 11oz! (2150g)

DISCHARGE. The magic word we’ve been waiting to hear for two months.

I arrived at the NICU this morning to find Marjorie in her big girl bed. No more incubator with portholes and wires. My eyes flooded with tears as Lisa came by and we hugged in celebration. She reported that Marjorie took all of her bottles overnight and if she keeps this up discharge is around the corner. Like a really close corner.

I stared at her speechless. I could do nothing but cry and hug our Mama Lisa. The day is finally approaching. I have no words. Like, really. No words. I am beyond overwhelmed with emotions and gratitude. I am excited, scared, nervous, happy and even sad to say goodbye to our NICU family. They helped to save the life of my precious baby girl and even saved me along with her.

Lisa always said the day will come and it will happen fast. She was NOT kidding. As soon as Marjorie started taking bottles, she was off. So what stands in our way now? She must continue taking all feedings by bottle, pass the car seat test and hearing test. We have another eye test for this Thursday so hopefully that will continue to go well. Her car seat test is 90-minutes. I bring in her car seat and she gets all strapped in and has to remain stable throughout. There is not a firm date yet, but next Monday is looking possible.

Her feeding tube might come out tomorrow since she is taking everything by bottle. Of course, if she misses one or two feedings and has to keep it a day or so more that is okay with me. Lisa also had the dreaded task of giving Marjorie her shots. She got two vaccinations today and two tomorrow. They have had her on Tylenol and she took the shots like a champ according to Mama Lisa, which doesn’t surprise anyone.

Now we just have to keep Manning from getting the flu (he came home with a fever and the flu is going around). He will stay home from school tomorrow and possible make a trip to the doctor. Prayers that big brother gets back to crashing trucks soon so he can be well for his sister’s homecoming. I get chills (and of course cry) thinking about that moment. The day Marjorie comes home and Manning finally gets to meet his sister face to face and not via iPhone pictures and video.

Even as I type the good news it doesn’t seem real. There were days when I thought we would never leave, days when the alarms and beeps never ended. Today as I cleared off my baby girls crib I just sobbed joyous tears. Her room will actually have her in it. Her changing table will be used and her bed will be slept in. Somebody pinch me. Baby girl is coming home. Our Miraculous Marjorie is finally coming home.

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Day 63 * Wednesday, December 10, 2014 * 4lbs, 13oz! (2190g)

Phew. It was a long day for this momma. As the excitement and shock of yesterday wore off, the reality began to sink in.

“She’s coming home! Oh God, she’s coming home.”

I spent last night cleaning car seats and attempting to organize her nursery. Over the past two months, Marjorie’s crib has become more of a shrine of gifts rather than a place to rest. I did my best to sort clothes, but kept getting distracted. At one point I found myself sitting on the floor, staring at all of her things not knowing where to begin. Leave it to my neighbor and Island bestie to come to the rescue with humor and wine.

Unfortunately, wine doesn’t organize closets so that overwhelming feeling carried over to today. My running mind and to do lists woke me up at 3am. I tossed and turned thinking of everything I needed to do, clothes to wash and appointments to make. I worried about Manning getting sick and went to check on him. No fever. Phew.

Sleep was sporadic after that. My alarm went off at 6am. I woke up, pumped, dressed and got on the road (Starbucks in hand, of course). Halfway through the drive I glanced in my rearview mirror and caught a glimpse of the car seat. Yes, it was there. The infant car seat. We are getting so close. I couldn’t help but grin.

Marjorie received the last two of her two month shots today. Between the shots and the Tylenol she was pretty sleepy, which affected her feedings. She only took partial bottles last night and today and that is totally normal. Two month shots are hard on their little bodies. We decided to do the car seat test tomorrow and not stress her today. So stay tuned (and say a prayer) for tomorrow’s test! Mama Lisa said this is to be expected and she should be back to taking bottles tomorrow.

Marjorie’s older brother seems to be on the mend. Just a low grade fever and slightly runny nose.  Even though he is okay, I am scared to death he will catch something and, in turn, expose Marjorie. I immediately text my friend/our old pediatrician for sound advice and consult. She gave some suggestions and told me to call our new pediatrician because they could tell me what sicknesses they’ve seen in the area.

I called our pediatrician (who is completely new to us and I have never met). I spoke to his nurse and she was wonderful. She said the flu and other viruses are running rampant right now. Her advice: keep Manning home. So we will be homeschooling Manning for the remainder of 2014. Sadly, he will miss his Christmas program (which I was really looking forward to – his first school program!), but Mrs. Michelle said he can make up his finger painting final exam.

I honestly hate keeping him from school. He LOVES it and goodness knows we love it. The risk of exposing Marjorie to something is not worth it. So all of my children will be in a bubble until the coast is clear. Expect to see the Dempsey family in 2016.

I left the hospital late this afternoon. My mind was exhausted and racing. Like always, I drove home in silence. After hours of NICU alarms and beeps, silence is the only noise I want to hear. But something reminded me of a few phone calls I needed to make. They had nothing to do with Marjorie, doctors or catching up a friend on Marjorie’s progress.

The calls were related to my work, Southern Smash. It felt so good to make them. One call was to a sponsor and the other was to a concerned parent whose son is struggling with an eating disorder. The calls were a much needed break and more importantly they reminded me that there is life beyond the NICU. Normalcy (or my attempt at normalcy) will return one day. Maybe not tomorrow and maybe not in two months, but one day normalcy will return. And it will return better than ever with a special little miracle sleeping soundly at home.

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Day 64 * Thursday, December 11, 2014 * 4lbs, 14oz! (2220g)

I tried to find a nurse today that would hook me up to an IV that dripped a steady dose of Zoloft, caffeine and cabernet. No such luck.

Emotions whirled around me like a tornado today. From elated to disappointment to joy to worry to uncertainty to everything in between, my head is still spinning.

Let me start from the beginning…

Today began as it always does: pump, shower, Starbucks, drive, scrub and then run to Marjorie’s bedside. I found her snug as a bug and the nurse reported she had a great night and took all of her bottles.

Then the nurse told me she just had two Brady’s. “Boo for Bradys” as Mama Lisa says. They were both quick and self-corrected, but nonetheless they were Bradys. The Bradys did follow her eye exam, which always wears her out. The exam went well. She is still Stage 0, Zone 2 and we will follow up in two weeks hoping to hit Zone 3.

The nurse said we could do the car seat test after her 11:30am feeding. I excitedly changed Marjorie’s diaper and clothing. Obviously, we needed a new outfit for our big test. Marjorie and I sat down in the recliner for lunch time. She finished her whole 40mL bottle for me! I was a proud mama.

Now time for the test. I gently lowered her into the seat. The car seat seemed to swallow her. We arranged rolled blankets to properly position her and started the timer.

So what is the car seat test?

The American Academy of Pediatrics recommends a car seat test, or car seat challenge, for all babies born before 37 weeks gestation. The car seat test makes sure that premature babies are able to sit in a car seat safely, without any episodes of desaturation, apnea, or bradycardia.

The test runs 90-minutes. My peanut almost made it an hour before desaturating to 60 and having a brady. My heart stopped along with hers when the monitor went off signifying the brady. I felt like I had the wind knocked out of me.

In my wise mind I know we can just retry the test tomorrow, but tears flooded my eyes anyway. I scooped my baby girl up and snuggled her into my chest. The nurse was so kind and did her best to comfort me. I just wanted to be alone with my baby.

If you know me, you know I like to talk and be ‘in the mix’. This part of my personality extends into the NICU world. Marjorie’s curtain is always open and when I hold her the glider is always facing out so I can see passing nurses and show off my girl.

After the car seat test and with Marjorie wrapped in my arms, I slowly turned my chair around so that no one could see us. I wanted to sink away with Marjorie. My tears rolled off my cheeks onto her blankets. I nuzzled her in tight as if nuzzling her close could protect her from the world.

A voice jolted me and I turned to see Dr. Kirk pulling up a chair.He reiterated how well she is doing, that the feeding tube can come out and that she can go home as soon as she passes her car seat test. Maybe even tomorrowI’m pretty sure my jaw was on the floor. Tomorrow? Is he crazy? He said he was not concerned with her Bradys because they were quick and self corrected (meaning Marjorie does not require stimulation to get her heart rate back up). I told him we were thinking she would come home Monday at the earliest. He shrugged his shoulders and said, “Monday works too.” I have come to find that NICU doctors are very laid back.

The doctor left and the nurse took her feeding tube out. I was once again elated. I gazed at my sweet baby girl’s precious face without a tube. I planned to leave the hospital early today, but could not pull myself away. I sat to feed her again and she feel asleep (and had a Brady) before she finished.

Hearing the doctor say tomorrow was a possibility was both exciting and terrifying and in my gut I was not comfortable with it. Of course, I want my baby girl home, but not until she is ready.

On my way home I called to see how her 5:30pm feeding went. The nurse told me she did not finish her bottle and was probably going to put the tube back in. I knew then I needed to speak out for Marjorie. I told our sweet nurse that I felt we needed to give Marjorie tomorrow to rest. She has had three busy days: bed changes, shots, tylenol, eye exam, car seat test. That is a lot for a full term baby, much less a micro preemie. I told her I wanted to do the test Saturday. These extra days also give her time to master her feedings. I can handle her Bradys and other preemie quirks, but I can’t put a feeding tube back in.

After a day of back and forth emotions, I knew I was right in giving my girl a day to rest. I want to be 110% sure she is ready to come home. It goes without saying she can take as much time as she needs. If there is one thing I’ve realized since becoming a mom, it is that our babies are worth the wait.

Thank you all for all the love and prayers today. It was a hard day, but we are getting so close. Knowing so many love and care for my Marjorie means so much to me. Say a prayer for my boys too. Manning is on the mend, but his daddy now has a sinus infection. I am trying to get all of my kiddos well and soon we will all be together!

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Day 65 * Friday, December 12, 2014 * 4lbs, 14oz! (2225g)

I am writing to you tonight from the comfort of my couch and and under the peaceful glow of my Christmas tree. Today I soaked up every second with my Manning. We played trucks, ate ‘faffle’ fries from Chick-fil-a and even ventured to Target.

If you know me, then you know I am a faithful Target patron. Needless to say, Target’s stock price dropped significantly over the last three months. It felt so good to not only be back at my favorite store, but to do something that was once so routine and, dare I say it – normal. Yes, normalcy is coming back slowly, but surely.

I stocked up on baby bottles and diapers at Target, as well as other room and homecoming essentials for my sweet girl. Manning also got two new truck books and Jake the Pirate wrapping paper that later became a sword at checkout. Yikes.

Marjorie had a very restful day in the loving hands of one of our favorite nurses, Sarah. When I called she said Marjorie took all her bottles overnight, but just a partial bottle at 9am so she had to tube feed the rest. Our favorite night nurse is with my girl tonight and I know Marjorie is so excited to cuddle with Becky.

Tomorrow and Sunday will be the deciding factor of if we will go home Monday. Marjorie is the boss and we are following her lead. My heart is at peace tonight. Even though I don’t have all of my chickens under one roof, we are so close to being together and I am willing to wait as long as it takes to get everyone well. That includes my big chicken, Jordan, who is still battling a sinus infection. So for now I will sleep again on the couch in my hazmat suit. There is no time for this Momma to get sick.

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Day 66 * Saturday, December 13, 2014 * 4lbs, 15oz! (2230g)

WE PASSED! Yes, my second child (like my first) is gifted. She passed her car seat test! 90-minutes no Bradys and no desaturations in her oxygen levels. What a rock star.

Let’s be honest, there were two factors that really helped her pass the test: 1) Mama Lisa was working today and 2) it was the Girls on the Run 5k in Baton Rouge. Our Girls on the Run family sent her sparkle and she power all day.

I am so proud of my girl it hurts. We are getting so close. I drove home in such peace today, knowing that I only have to make that drive a few more times. Of course it also makes me sad because I am going to miss our Mama Lisa and our entire NICU family more than life itself.

They have carried us through our darkest days and helped our Marjorie grow and thrive. They are truly angels on earth and miracle workers.

The game plan now is to wait for baby girl to ‘wake up’ and eat. Right now she is still hit or miss with feedings. She is so close, but not consistent enough to come home. And I am TOTALLY okay with that. Lisa is thinking our discharge date will be Wednesday, but only Marjorie knows for sure when she is ready to go home. Regardless of Monday or Wednesday or Friday, baby girl is my hero and will be homebound so very soon.

The sunset on the drive home was gorgeous again tonight. I used to cry when I saw the beautiful sunset because I felt as though I would never be driving home with her. Today, I smiled (and cried – happy tears) that soon, very soon, my Marjorie will be in the backseat heading home under the gorgeous setting sun to meet her big brother. My only wish is that we could take Lisa and the NICU nurses home with us.

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Day 67 * Sunday, December 14, 2014 * FIVE POUNDS! (2264g)

Today I celebrated four years of recovery with my girl, my five pound bag of sugar and sweetness. We ate, cuddled and had a wonderful spa day. Marjorie even showed off her new found vocal chords! Most moms want their babies to stop crying, I want mine to yell and tell me she is hungry. It means she is awake and alert.

We are getting SO close to discharge. Mama Lisa at one point thought it might be tomorrow, but Marjorie didn’t finish her 6pm bottle and had to be tube fed. Spa day wears her out. The good news is that she is really waking up and has even taken 45-mL last night and all day until the 6pm bottle.

So we continue to wait for the boss lady to tell us when she is ready. Marjorie is the boss, not the doctor and not Mama Lisa. Of course, I am waiting on Mama Lisa to give the final blessing and okay. She has been with Marjorie and me since day one. I trust her more than anyone in this world and she will know when her Marjorie is good an ready to finally head home.

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Day 68 * Monday, December 15, 2014

HOME.