NICU Life: Week 7 & 8

Day 43 * Thursday, November 20, 2014

Insert cliche phrase: “There are no words to describe.” That is what the past two days have been for me: indescribable. I arrived today to find my sweet girl without her nose cannula. I cried tears of joy when I saw her precious face without that huge nose cannula. They told me they took her off the high-flow nose cannula and skipped the wall oxygen all together.

What does this mean? No more nose cannula. She is breathing 100% on her own. No words. Just tears. I am beyond proud. My girl continues to fight so hard. Our Christmas wish seems to be within reach, but if she needs more time we will gladly give it to her. I don’t have a lot of words tonight. Just tears of joy, and of course, pictures to show off my precious baby girl growing before our eyes…

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Day 44 * Friday, November 21, 2014

Today I stayed home to attend Thanksgiving lunch at Manning’s amazing school Wesley Academy. It felt nice to be a mom to him in that way, even if he didn’t eat a single thing at the ‘feast’. Picky, picky boy! As much as I loved being with Manning and Jordan, the event was a bit too much for me. It all came pretty unexpectedly.

Manning was running around like a wild man while we waiting in line to get our lunch. He was so excited to show us the playground, of course. I looked at all of the parents and kids and I started to feel sad. I spied numerous pregnant mothers and others with infant carriers holding sleeping, pudgy babies.

After we got our food (and put a chocolate chip cookie on Manning’s plate so he would at least sit with us for a minute), we found a space in the big hall to sit and eat. We sat with some lovely people, but I immediately noticed the precious pregnant mom across from me. In between us all trying to get our kids to eat, the conversation was about her pregnancy and then everyone chimed in on pregnancy bliss and burdens.

Anxiety and sadness washed over me and I excused myself from the table. I felt so out of place amongst this mom crowd. I wanted to be back in my NICU bubble with my girl. I wanted to be back in the place that has become my world and filled with people who are my family. People and other moms that understand what it is like to stand over your child’s incubator day dreaming of the day you can bring your baby home. A place where the once cacophony of beeps and alarms has morphed into a comforting background noise.

I debated getting in the car to head south, but decided against it. I had a list of house chores and other to dos that had to get done today. I called on Marjorie all day and she spent today snoozing away. She was having a great day and I knew she was in loving hands. It has been nice being in the house alone today. It is the first time in a long time I’ve been alone. Tonight Jordan and I are going to dinner with friends and I am thrilled. It is always nice to get out of the house and laugh over a good dinner with friends. It is just what I need to refresh and start over tomorrow. Counting down the minutes until I get to see my sweet girl tomorrow.

 

My little turkey at his school's Friday Feast!

My little turkey at his school’s Friday Feast!


Day 45 * Saturday, November 22, 2014

Do you remember the first time you fed your baby? I’ll never forget nursing Manning for the first time. It was within an hour of his birth and certainly a moment in time I will never forget. And today is another day I will never forget. Because today, I finally fed my baby girl for the very first time.

Marjorie is on ‘Cue Based’ Feedings, meaning if she is alert and awake at her feeding time (every three hours), we will give her a bottle. We will work on nursing soon, but it is a bit harder on their tiny system. So for now it is bottle and that is just fine by me!

I arrived shortly before the noon feeding hoping she would be awake. She had snoozed through her 9am feeding for Lisa, despite Lisa’s best efforts to wake her. I think Lisa was as excited to feed her as me! I went right to her incubator and started to love on her, rubbing her back and talking to her. Sure enough those eyes slowly started to open and my heart melted. Those eyes! Those precious tiny eyes that look out inquisitively to the big world around them.

Lisa and I swaddled Marjorie up in her soft, pink ‘Gaga’ blanket. I carefully slid her out of her plexiglas home and into my arms. I day dream about the day when I can pick her up wire-free out of her crib at home. I still can only hold her for short periods of time so I will certainly not take it for granted when I can snuggle her for hours on end.

Marjorie did so well today. She IS doing so well. It is pretty incredible for a baby her age and size to already be off the oxygen and bottle feeding. She only takes a few mL at a time, but any practice is progress. She still has a weak suck and other normal preemie feeding things, but that is something that will improve as she grows and something that the feeding therapists will work with her on.

I watched Marjorie in complete awe today as she slowly sucked from the bottle in my hand. Tears welled in my eyes as I watched her tiny mouth working so hard. She is working so hard. There is no doubt Marjorie is a fighter. She has been fighting for her life since day and has come so incredibly far. My baby girl has come alive before my eyes, before all of our eyes. She reminds me on a daily basis what is truly important in life. Just like that first time nursing with Manning, today was just as special and maybe a tad sweeter because I had to wait over 6-weeks for it. Marjorie is my hero. I am so proud of her I think my heart could burst at any moment.

 

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 Day 46 * Sunday, November 23, 2014

For nearly two months my heart has been aching, some days worse than others. Sometimes the ache is fear and other days it is anger and some days the ache doesn’t seem so bad. But it is always there, lingering behind the laughter. Today was one of those days where the heart ache pounded in my chest. I drove home tonight feeling torn in half.

Despite my sadness, Marjorie had another wonderful day. I arrived shortly before her noon feeding. Weather delays and empty gas tanks delayed me a bit. Nurse Lisa greeted me with a smile as always. She said she didn’t bottle feed Marjorie at 9am in hopes she would be rested for when I arrived. And what do you know? She was bright eyed and ready to eat. I cheerfully sat down with Marjorie and got her into “Preemie Feeding” position. Then she went to town! Marjorie set a PR with bottle feeding! 23mL! I am proud to say that I was the one feeding her.

Marjorie was tuckered out after such a big feeding. I held her for a bit but she kept desatting so I placed her back on her belly in her incubator where she snoozed the afternoon away. Bottle feedings take a lot out on tiny preemies, which is why we will only bottle feed when she is awake and alert. If we kept waking her to feed it would be counterproductive because she would burn more calories working to eat than actually eating.

At her 3pm feeding she was conked out – and I mean out. I changed her diaper, took her temperature and Lisa checked her residual, which was minimal. I sat down next to her and stared. As exciting and wonderful that it is that she is working at bottle feeding, it is also a brutal reminder that we still have work remaining. She can only tolerate a little at a time and of course I am thrilled for that, but these milestones also test my faith and patience. It took all my self-control not to pick her up again this afternoon and walk out the doors with her. I want my baby home. I want her in my arms. I want to sit over her all day and not have to worry about getting home.

Marjorie’s tiny finger griped mine as I watched her sleeping. I delicately traced each of her tiny features with my other hand. Tiny nose and ears and fingers. I could have sat forever, but then I saw her big brother’s picture on the inside of her incubator. I knew I had to go home and be with him. He needs me too. Even though I’m not much help with him lately, at least I am home at night and can love on him. For over thirty minutes I sat there telling myself I will leave in five minutes. Five minutes later, I gave myself another five…and then another.

With tears welling in my eyes, I kissed my fingers then placed them on Marjorie’s head. “I love you always, baby girl. See you tomorrow. Sleep tight.” I quickly lowered the curtain on her bed before I could change my mind again. I grabbed my bags and went to find Lisa. She was charting two beds down. Lisa knows me so well and knew I was have a moment. She wrapped me up in a big Lisa hug and I just cried. It is because of Lisa and the amazing staff at Wolfson that I am able to leave. Marjorie is in the best place, with people who love on her like their own. And one day, in the hopeful near future I will be loving and watching over her all night and all day.

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Day 47 * Monday, November 24, 2014

Not much to report today, which I guess is a good thing. Marjorie was so sleepy today and did not wake up for any of her feedings, thus did not bottle feed. I was there only for the noon feeding today. I had to get back to relieve our sweet sitter this afternoon. I tried so hard to wake my sleeping beauty at noon, but no luck. I can’t lie it was disappointing. I wanted to see those pretty eyes again. Today I was going to try and nurse her, but only if she woke up. My heart sank as she did not even blink an eye for her noon feeding.

I settled with holding my miracle and soaked in every second. My spirits were low today and my limited time with her did not help. The good news is that tomorrow morning at 6am my family is loading up and trucking east. Mom, dad, Gaga and Susu are piling into the suburban and coming for Thanksgiving. Their arrival could not be at a better time for me. Gaga is so excited to meet her namesake. I think she has had her bags packed for a month! It has been way too long since I’ve seen my Gaga and Susu (my aunt). I can’t wait to give them a massive hug tomorrow night. There is also a good chance I will lock the doors and never let them leave.

How many minutes between now and tomorrow night? If only I could sleep as soundly as Miss Marjorie…

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Day 48 * Tuesday, November 25, 2014

And on the 48th day, she nursed. Marjorie and I celebrated a special rite of mom/child passage: breastfeeding. Since she is still small and only at 34weeks gestation, it is just practice now. But she did amazing. And of course…I cried. Who wouldn’t? I’ve waited a long time to start that special bonding time with my daughter. Diligently pumping away until she became big enough and strong enough to nurse. We still have lots of practice to do but we are on our way.

The family is trucking their way down I-10 and will be here tonight. Tomorrow Marjorie will finally get to meet her namesake. The one and only GaGa.

I am cuddled up with my peanut as I type. My heart could not be anymore content. Feeling so very blessed. Much to be thankful for today and every day.

 

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Day 49 * Wednesday, November 26, 2014 * 3lbs,13oz (1720g)

Time stopped today as Marjorie’s 91-year old great grandmother met her for the very first time. Today at noon my Gaga shuffled faster than her feet could move into the NICU to meet her precious namesake.

I’m not sure I have any words to describe what it was like watching my Gaga meet my daughter. For those who don’t know me, Gaga is my grandmother. Grandmother by birth, best friend by the grace of God. She was the Matron of Honor in my wedding and rarely a day passes when I do not pick up the phone to call her.

Needless to say, this journey has been difficult not having her by my side, not so much for me, but for her. Gaga is a worrier. She is the definition of a worry wart. I will never forget the day the doctors told me Marjorie was coming. As I laid in the pre-op room with Jordan and my mom, I picked up the phone to call Gaga. I knew she had to hear the news from me and no one else. I did my best to put on a brave voice, but Gaga knew it was not good news. I could hear the tremor and tears in her voice. All I could say was, “I will be okay. Marjorie and I will be okay.” And it wasn’t a lie. I knew that because I was naming my girl after the bravest woman I knew. But in that moment all I could hear was Gaga’s tears.

Gaga does NOT cry. She is the epitome of Rosie the Riveter, except she was Margie the Welder. Born in 1923, she grew up in North Louisiana with her eight brothers and sisters. She left home at 18 and spent the next few years welding liberty ships and airplanes during the war. She worked on fighter planes, which is fitting because she is a fighter, albeit the silent kind. Gaga is tough as nails and kinder than anyone you’ve ever met. Gaga’s life story is one for the history books, although she would disagree. She is beyond Tyler Strong and the matriarch of our family.

Today, Gaga met her namesake. The girl who has already proven her strength and determination in life just like Gaga did so many years ago. I’m not sure I have words to describe today. Just pictures…

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Day 50 * Thursday, November 27, 2014 * 3lbs,14oz (1760g)

Marjorie celebrated her first Turkey day with a spa day and taking a bottle from her daddy for the first time.

Jordan, my dad and I drove down to spend the day with our girl. Jordan could hardly wait to hold his Marjorie. I could hardly wait to dress her up in her Thanksgiving outfit sent to her by her fairy Godmother, CC! . Her Pops couldn’t believe how big she had gotten since he last saw her. He lovingly looked on in amazement at his precious granddaughter.

As always, Marjorie LOVED her spa time. She just cooed when I gently washed her body and drizzled water over her head. There is nothing sweeter than bathing your child. That special bonding moment I had every day with Manning, I only have with Marjorie twice a week. But I soak in (pun intended) our twice a week bath time as much as I can.

Marjorie was still awake after her bath so Jordan was able to try his turn at bottle feeding. Daddy did a great job! She sacked out and spent the hour cuddling with Jordan and then with me.

As I cuddled my girl, not wanting to put her down, my dad asked if I wanted to pop champagne today or save it for when she comes home. Then daddy and I shared a knowing look and both got choked up. I wish we were popping it today to celebrate her being home, but we still have some time before that will happen and today Marjorie will not be with us.

My heart started to sink as I knew our visit was coming to an end. But before I could dwell too long, I heard a familiar voice. One of our favorite 3rd floor nurses and now dear friend, Amy came walking in with her bright smile. Amy never fails to make my day. Her contagious smile can brighten any day. I loved seeing her and proudly showed off my little fighter.

Needless to say we had a wonderful day with our Marjorie. But as always, it wasn’t enough time. It’s never enough. This was certainly not how I planned for my baby girl to spend her first holiday. I hated leaving her. It always hurts, but today really hurt.

I pray we have her home for Christmas. My baby girl home – my ultimate Christmas wish. Of course, if she needs more time then more time it is. Whatever she needs to get healthy we will do.

There is so much to be thankful for this year and so much to grieve. There is no shame in saying that. It has been a tough year. But in this difficult time, we’ve seen the best in those around us. Family, friends and people near and far have sent us more love and support than I could’ve ever dreamed of. We are so grateful for every card, text, message, dinner, gas card, prayer and hug. Today is a day of thanks, but we are thankful every minute of every day.

The stormiest days bring the most beautiful sunsets. This storm has brought us our Marjorie. I would travel the storm a thousand times over again for my daughter. I am thankful for the storm and the countless angels we’ve met in it.

Wishing you and your family peace, joy and turkey.

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 Day 51 * Friday, November 28, 2014 * 3lbs,15oz (1790g)

When your child is born, you are instantly proud. You can’t wait to introduce them to friends and family and show them off to the world. You beam with pride as people love and hold your precious new baby.

Life in the NICU is a bit different. There isn’t a revolving door of visitors and some days it gets a bit lonely. Thank goodness for those nurses. I’m pretty sure I talk their ear off on a daily basis. My NICU family have been the only people I can show off my Marjorie too. Every time a nurse pops by, I can’t wait to raise her isolette ‘curtain’ and say, “Look, see how big she is! See how beautiful she is! Hasn’t she done amazing?” They inevitably always agree and I just burst with pride.

As much as I adore my NICU family, it is not my family. I could not wait for my family to arrive this week so I could show off our girl. She has grown so much since they were last here. You can actually hold her and even pinch her cheeks. Marjorie is alert and of course is even taking her bottle!

Today, Marjorie got to meet her Susu. Mom, Susu and I ventured down and I proudly showed off my girl. It made me so happy, but of course so sad. The dichotomy of feelings are booming at both ends tonight. My heart is so full having my family here, but heartbroken that I can’t have my girl home for everyone to love on and for me to brag on around the clock.

When my mom went to Thailand (and I was so sick and thinking irrationally, something that still occurs), I thought mom would love Amelie, Marjorie’s cousin, more because she could pick Amelie up and love on her. She had not been able to hold Marjorie. I could barely hold Marjorie when mom was here a month ago. Of course, the rational side of me knows that is far from the truth, but in this situation good sense is thrown out the window.

It gets harder and harder to leave her every day. I get so angry I can only have a small time with her, but more so that Marjorie’s family only has a small time with her. And the time we have is laden with vital sign watching and beep.

I know, I know, she will be home before I know it. But tonight my heart hurts. I want her with me now. I want her here with my family while they are in town. I want everyone loving on her. I want to show her off in person and not through pictures. Susu said is best today as tears streamed from her eyes, “Oh, McCall, pictures do not do her justice. She is just perfect.” Yes she is, Susu. Yes she is.

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Day 52 * Saturday, November 29, 2014 * 4 POUNDS! (1810g)

Late last night I got to make the glorious announcement that our baby girl hit FOUR POUNDS! It is crazy to think that she was born only 1 pound, 15oz just seven weeks ago. It brings tears to my eyes just thinking about it. My girl is a fighter. No doubt.

With the four pound mark comes a big girl princess bed. Well, that’s what we have named it. At 1800 pounds, we get to ‘pop the top’ of her incubator. She is now able to regulate her own body temperature and can be in a big girl bed. I can now pick up my baby girl without opening portholes and without time limitations. Praise God. The simple acts of picking up, bathing and dressing my girl makes me feel like a mom.

Today I decided to stay home and spend some time outside of the hospital with my family. This is Gaga and Susu’s first trip to the island so I really wanted to show them around. Mom wanted to take me shopping and who am I to disagree?

It is always difficult to be away from Marjorie, but it is also such a gift to feel like a human. No hospitals, no beeping alarms and yes, even for a few hours there is no breast pump. But there is no escaping the heartache as much as I try it will always be there. Aching for my girl, wanting to be next to her.

The sadness came on like a tidal wave while we were shopping. I tried to ignore it, but the anxiety and sadness took over and there was no sense in faking a happy face. I did not have the energy. I looked at mom and asked if we could go. She didn’t have to see the tears in my eyes because she knew it from the tremble in voice.

After a good cry, we toured Susu around the island and now are back home. Manning woke up from nap tired and cuddled with me – something that rarely happens anymore. He is such a busy bee so I cherish my big boy cuddle time.

Children are so funny. Just like moms have an intuition of what their child needs. Kids seem to be a step ahead of us too. Marjorie knew I needed her to hit 1800 so we could have endless cuddles and I could scoop her up at free will. And today, my Manning knew his momma desperately needed some cuddles. And that is what they both gave me. How lucky am I that God hand picked me to be the mom of these two magnificent babies?

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Day 53 * Sunday, November 30, 2014 * 4lbs, 1oz! (1840g)

Marjorie continues to live up to her Louisiana roots. She and her favorite night nurse, Becky, enjoy their late night party time. Marjorie took 26 and 24-mL for Becky last night at 9pm and 3am. Then as we arrived for the noon feeding she was out. Too tired to eat!

Mom, dad and Gaga came down with me today and Marjorie loved her snuggle time with Pops! My heart smiled watching my daddy hold his precious granddaughter for the first time. He ran his hands over her tiny hands and stared in amazement. It is a whole new experience when you hold her. You realize how small she is and also how big she has grown!

Gaga and Mom joined Marjorie and I for Spa Day, which of course Marjorie slept through! We changed outfits and wrapped her up snug as a bug. Gaga watched over her bed making sure we did it just right.

Gaga lingered until the very end of our visit, gazing proudly at her namesake. I’m not sure the next time Gaga will see her. Travel is hard on her and I certainly can’t travel with Marjorie any time soon. Hopefully, it won’t be too long because Marjorie and me will miss her too much.

My visit with my family is drawing to a close. Daddy leaves tomorrow, then the rest on Tuesday. I can’t even think about them leaving. So instead I will think of our Baby “Sprinkle” tomorrow. Leave it to my amazing Island family to throw a party to celebrate Marjorie. They are doing it on Monday so Gaga, Susu and mom will be here. I love them all so much…all of my families.

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Day 54 * Monday, December 1, 2014 * 4lbs, 1oz! (1850g)

It was a day of snuggles for our girl. Marjorie’s grandparents (Papa G & Mimi) finally held their precious girl. They have been by her side since day one and finally got their snuggle time in today. Their excitement and love was oozing out of them. You could just see their amazement when they held our tiny miracle.

Before her grandparents got their hands on her, her daddy spent the morning with her. Jordan held his baby girl for over two hours. It is so sweet to see him bond in that way with Marjorie. He is such a hands on dad and such a baby freak. Jordan scoops up any baby within a 2-mile radius so not being able to hold his girl has been hard on him. But with every tube, cannula and line gone, Jordan can proudly pick her up and swaddle her back in bed on his own and that is such a wonderful feeling.

As for this momma’s visit, it was amazing and too short as always. Susu came with me today and mom stayed back with Gaga. I was hoping Marjorie would wake up to nurse at noon, but no such luck. And I was okay with that because she was sleepy from taking AN ENTIRE BOTTLE at 6am with Becky. Geaux Marjorie!!! Susu and I enjoyed some snuggles before heading back to the Island. We had to get back early so she could pack and we could get ready for the Baby SPRINKLE! Of course, I got a 3pm feeding update from Mama Nurse Lisa telling me she finally got to feed our girl! Marjorie took 25mL for her too!

We are all so proud of our fighter. She is such a miracle and makes me the proudest momma around. I often get asked if we have a timeline of when we will go home. Sadly, we don’t. But we are getting close! She needs to be taking all of her feedings by mouth and a few other things before we get that discharge date, but it will be here before we know it! I continue to take it a day at a time, just like I did when I ruptured. I am thankful for every minute and every day. I try not to focus on when she will be home, but all of the blessings that happened today. Of course, some days that is easier than others. Today is one of the better days. Tonight we will celebrate Marjorie and her Miraculous self! Having her so soon, did not leave us time to celebrate. We were too busy worrying and holding our breaths. Tonight, we celebrate because Marjorie certainly deserves it! So join our Sprinkle tonight and raise your glasses to Miraculous Marjorie!!!

 

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Day 55 *Tuesday, December 2, 2014 * 4lbs, 2oz! (1890g)

Tears rolled down my face as I watched my mom, aunt and grandmother drive off this morning. We had such an amazing week together and it was so nice having company (and someone driving me) in the hospital. Of course, the family slumber party had to come to an end at some point.

Jordan bear hugged my tears away, put me in the car and off I went. First stop: Starbucks. My free birthday coffee came across my iPhone this morning. Even though my birthday isn’t until Sunday, I decided to go ahead and cash it in. A Peppermint Mocha cures all heart ache, right?

The Starbucks barista handed me my coffee and cheerfully said, “Have a great day. Oh and…Happy Birthday!” She was contagiously peppy and I couldn’t help but smile. I smiled back realizing that it was my birthday week and that is a good thing and something to definitely smile about.

When I arrived at the NICU, I scrubbed in behind a husband and wife. The wife remained in her wheelchair while she scrubbed. I recognized her from a week before. She just had her baby and just like last week, you could see the devastation in her eyes even though she never made eye contact. I wanted to bend down to her wheelchair, hold her hand and tell her that it DOES get better. That every day your child gets a little stronger and you regain your strength little by little too. I wanted to tell her that I know her pain and that it will not last forever, that the light will come back to her eyes and one day you will smile again.

The three of us finished scrubbing and went our separate ways. The husband pushed the wife right to the A Side and I went left to the B Side. I quietly lifted up a prayer for her. Marjorie is proof that prayers work and I pray that mother sees the same miracle unfold as I have these last two months.

My miracle was sleeping soundly when I arrived, but was bright eyed and ready to eat at noon. She took nearly her whole bottle for me! What a rockstar! We cuddled and enjoyed our quiet day. I thought back to those early days when I could not even hold her, when my physical pain kept me from standing too long at her bedside. I cringed remembering those dark days when I thought I would never feel whole again.

Tragedy, grief, loss, trauma. Horrible things happen and we don’t know why. I think that is the most frustrating part of it all. I wanted answers, especially early on. I still have days and moments where I am angry for answers, but today I am at peace. The light at the end of the tunnel is getting brighter. And more importantly the light in my eyes has returned, as my mom said when she first saw me.

The darkness cannot last forever, unless we allow it to. Today, I chose to take my birthday coffee and smile back. It was a good day and that is what I shall focus on. Who knows what tomorrow will bring, but today was filled with joy and gratitude.

Tonight I’m sending that mother in the scrub room prayers for peace and healing…and I hope you will too.

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Day 56 * Wednesday, December 3, 2014 * 4lbs, 3oz! (1910g)

Sleep, eat, poop, grow. Marjorie is slowly but surely mastering the newborn regimen. She is falling into the pattern of waking every six hours, so every other feeding. That is GREAT for a preemie her size.

She did not wake for me at noon, but she was bright eyed at 2:30 ready for her spa day. Our primary nurse Lisa (who is nurse to both Marjorie and ME!), was not only taking care of Marjorie’s medical needs, but our craft needs as well. After Spa Day, Lisa helped me use a First Christmas Ornament mold Annie gave us. Who knew taking a preemie’s footprint could be so difficult? Nurse Lisa to the rescue! She is a pro at stamping tiny toes and knew just the trick. She even added the glitter and tied the ornament’s bow. Crafty mission complete!

Marjorie worked up quite the appetite after Spa Day and Christmas crafting. Today she nursed for the second time and did awesome! She really latched on, but had a Brady on me after ten minutes. Often times, when preemies wear themselves out nursing or feeding they will slow their heart rate. It is just too much on their tiny bodies. So I settled for a good hour of snuggle time.

I feel this part of the journey is where I really need to pray for patience. We are getting so close to getting home, but have to wait for Marjorie to tell us she is ready. Marjorie is the boss, but my heart wants her boss home. So I prayer that I can continue to stay in the moment and in the minute with my girl. She is doing so well it is truly astounding. But I am not shocked. I knew what I was doing when I named her “Miraculous Marjorie”!

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