Ella is Nine Months Old

Ella weighs: 13lbs 4oz

Ella measures: 25 inches

Milestones this month:
-moves from one spot to another by scooting on her belly! 

-tried her first solid (oatmeal cereal)
-stomps her feet when held in standing position

-cries sometimes if strangers hold her

Ella loves: 
-her orange flower link
-Ellie the Taggie elephant

-anything with tags

-napping on mommy as to avoid being placed elsewhere
-splashing her feet in the bath

-spending time with Grandma and Grandpa

-when mommy and daddy are both home giving her all of the attention

-keeping an eye on everyone and everything happening around her 

Health and Doctors: Ella received her second Synagis shot. Round two was not any easier to watch. Knowing that she is experiencing pain is so tough. We saw Dr. Groves this week. Ella's eyes are showing a little nearsightedness, but this is expected. Dr. Groves will continue to monitor her and keep an eye (haha) on the hundreds of laser scars in her eyes from her ROP surgery. He said no head to head contact sports for her, but I am okay with that. We will see the pulmonologist and cardiologist next month. 

What we have been up to: 

Each day with Ella is full of surprises. The latest surprise was watching her crawl (belly scoot) across her blanket towards some toys a couple of feet away. She propelled herself forward with her legs and then got her arms out from under her to start the process all over again. Over and over again in the NICU we were told all about how feisty she was. When we were told that I sort of shrugged it off, mainly because I thought it was something they told everyone, thinking it was their way of giving us some hope for the one pound baby we had in front of us. Now I see what they were talking about. If Ella wants something she will work to make it happen. Her tenacity is amazing.

There have been a lot of firsts around here. We took our first road trip as a family across state lines to see Aunt Jessa and Brad in Arkansas. Ella received her first Christmas present. She went cross-eyed with excitement as she kicked her feet against the torn paper. The trip was a success! Thankfully Ella enjoys car rides. Ella and I napped through her first bedlam game. She saw snow fall for the first time and watched her daddy build our first fire of the year in the fireplace. She was mesmerized watching the bright flames rise. She spent her first night in her big girl crib. She was like a hamster in a plastic ball rolling all over the place. I'm still not sure how much sleep she actually got that night. Needless to say, crib sleeping has not occurred since, but it is on the agenda for our first Christmas break together. We tried to fit Ella into her stocking, but surprise she is just too big! Ella has experienced a few rounds of oatmeal cereal. She smiles while being fed. Veggies are in her future. Ella had her first night being put to bed my someone other than mommy. I'm not sure who it was harder on, myself or Ella. Although her bedtime routine takes quite a bit of time, by the end of it I am perfectly content to sit and hold my precious girl. In those moments of stillness the to do list fades away and I find myself completely present. Ella's first Christmas was filled with love. She enjoyed opening presents, mostly by stomping on them. At the end of the day she filmed her first GoPro video. Life from the eyes of a baby! She loved it. 

Aside from my husband, there is not a gift in a world that could bring me more joy than our precious baby girl. 

Ella is Eight Months Old

Ella weighs: 12lbs 10.5oz

Ella measures: 24.6inches 

Milestones this month:
-rolling over!
-giggling 
-discovering her feet
-using her hands to reach for things (bottle especially)
-gets excited when she sees familiar faces

Ella loves: 
-her fingers
-her oball and oball rattle
-looking in mirrors
-being outside 

-stroller rides
-watching any cooking happening in the kitchen
-taking naps on Mommy
-playtime and making faces with Daddy

Health and Doctors:

Ella received her flu shots and her first round of her Synagis shot. Since Ella was born so premature she automatically qualified to receive the Synagis shot which provides her with extra antibodies to protect her from RSV. She will get a shot each month of RSV season, a total of 5 shots in all. Now that we have been out of the NICU for a while, seeing my sweet baby get poked with needles is a little harder to endure. The nurse informed me that out of all the shots she receives, the Synagis shot actually burns and causes longer discomfort. Watching Ella's bright blue eyes fill up with tears followed by the saddest cry ever makes my heart hurt a little. We will see the eye doctor right before Christmas and will see the other specialists after the New Year. At Ella's 8-month appointment we got the go ahead to try and start solids.

What we have been up to:
This month was filled up with firsts for Ella. She accomplished a lot including: reaching for toys during tummy time, rolling over, scooting backwards using her legs, maintaining posture during supported sitting, and splashing her feet in the bath. She recognizes Ross, myself, and my parents. We believe her teeth have started to push up below the surface because she is drooling and chewing on everything. She has started to giggle more and more everyday. The giggling is fabulous because it instantly wipes out any memory I have of her fussiness and fits from the night before. She wants to be in the action all of the time, but still gets overstimulated from a full day of interaction. We have had to unswaddled her arms at night since she is rolling over. She wakes herself up often.

Ella celebrated her first Halloween as the cutest ghost ever. She received her first non-medical piece of mail, a Halloween card from her great-grandma.
Ella endured her first round of fall family pictures. She was less than thrilled. She even fell asleep at one point. They were the first pictures of the three of us since we brought her home in July. Ella had a couple of other outings this month. We went to get her first custom Christmas bow at Kathleen's. We took her to Lowe's where she fell asleep and we took advantage and went for a quick lunch at Whole Foods. We had lunch with one of our favorite nurses and met my teammates for happy hour. Just a few last hurrahs before we cozy up in our home for the next few months. Our first Thanksgiving Day was wonderful and filled with a lot of family and love. We are thankful every year for our family and friends, but this year that thankful feeling was amplified. Each day we stare at our precious baby in amazement recalling the events that led up to where we are today. Family and friends were there through it all. It does take a village and we are thankful for those that are in ours.

Ella is Seven Months Old

Ella weighs: 11lbs 2.5oz

Ella measures: around 22.5 inches (she is always wiggling so I did an average)

Milestones this month:-coos
-tracking with eyes
-holding onto different objects and bringing them to her mouth
-gets excited when she sees familiar faces
-stronger head control

Ella loves: -making sounds and faces with mommy and daddy
-being outside -stroller rides
-the crinkling sound of diaper sacks
-Mommy snuggles
-nighttime chats with Daddy
-her girraffe paci "Gerald"
-staring at any ceiling fan-pulling on the links on her activity mat 

Health and Doctors:
Ella is officially monitor free! We saw all of her doctors this month and received good reports from them. The eye doctor said her eyes still look fantastic. There is a 90% chance that she will not need glasses. The heart doctor said the ASD (hole) has continued to shrink. The stenosis in her pulmonary valve has increased slightly, but the size is not concerning at the moment. The lung doctor said he does not need to see her again until February and he is pleased with her progress. We had our first visit to her

developmental doctor. She gave Ella an A++. She gave us some stretches to work on to help

with tight muscle tone. This is common for micro-preemies because they spend significantly less time curled up in the womb. 

I'm not sure where the time goes. Some days it seems to pass by quickly and other days it seems to pass by slowly. There are moments when I feel like Ella was born yesterday and moments when I feel like her arrival into our world was ages ago. But no matter how quickly or slowly the time passes, one thing is certain, we are head over heels for our baby girl. At the beginning of this journey with Ella I was not able to say that. Sure I was happy she had arrived and was making progress in the NICU, but I was still dealing with the shock of all that had happened. I did not feel like her mom when she first arrived. I mean, she was mine, the hospital bracelet confirmed it, but the feelings of joy that I had anticipated feeling for so long were momentarily on a detour.

I spent a lot of time in the beginning mourning all of the "should have been" moments. Looking back, I am not sure I would have been able to process things differently. When you experience physical and mental trauma you put one foot in front of the other and keep on going. A good friend shared a Bob Marley quote with me that captures it best, "You never know how strong you are, until being strong is your only choice." It's true. You do not know they measures of your own strength until you experience something that takes you one step further. And by the time you stop to look back on your experience to offer it some thought, it has already become part of you and part of your life story. 

When we first brought Ella home we did everything according to what we had done in the NICU. We still felt tied to the schedules and routines we had witnessed for those 98 days. We were home in our comfortable environment with our baby questioning how they ever let us leave. Could we give her what she needed? Some days were uncomfortable.  Yet there we were, one foot in front of the other, moving forward day by day. 

And now here we are almost 4 months past Ella's NICU graduation day. I may not have felt very mom-ish at the start, but I can now say I am in total mom mode. We have found our own rhythm as parents and Ella seems to like us enough. She smiles and makes faces all day. She snuggles when she wants to and certainly lets us know when she doesn't. She makes the cutest oohs and ahhs and lets out the not-so-cute cries all in the same day. She is ours and we are hers and we will all keep moving forward together.

Ella is Six Months Old

With her favorite kitten Zip.

Today we are celebrating Ella turning 6 months old.

Ella weighs: 9lbs 12.5oz

Ella measures: 22 inches

Ella is an alert and active girl. Unless she is swaddled or has worn herself out, you can guarantee her legs and arms to be moving constantly. 

Milestones this month:

-Smiling! We continue to see more and more of them with each passing day.

Cheese!

-Lifts and holds head up during tummy time

-Off of oxygen!

Ella has:

-fallen in love with her hands and fingers
-figured out how to get her thumb in her mouth

-been working hard to to roll over

-taken her first out of town day trip: to Claremore

-met her cousin Emily... in person!  "Oh, Baby Ella!"

-enjoyed some time outside in the Tula

-spent some time showing off her skills for Great Grandma

-visited her neonatologist and spent some time visiting her most beloved NICU nurses

-started spending days with Grandma since Mommy has gone back to work

Ella loves: 

-wiggling! 

-staring at any ceiling fan

-listening to Mommy sing "The Wheels on the Bus" and "The Ants Go Marching"
-bathtime swaddled in an Aden and Anais blanket

-afternoon naps in the swing
-Mommy snuggles
-nighttime chats with Daddy

-her girraffe paci "Gerald"
-her new paci friend "Lima" the lamb

-laying under her activity mat watching the butterflies light up along with the music

This month we had some big things happen! Ella did an overnight oxygen study. The pulmonologist (lung doctor) wanted to make sure she was maintaining her saturation levels overnight. It required an additional monitor attached via a wrap on her foot. Cords everywhere that night! Her levels stayed where they needed to and she has been off of oxygen for 3 weeks and counting. Unless she gets sick, she can continue to stay off of oxygen. 

Ella also visited the hospital for a swallow study. We did the study to make sure that there were not any abnormalities keeping her from eating like she should. She has acid reflux, and is on medicine for it, but we needed to make sure the formula would stay where it needed to after she swallowed it. We also needed to make sure that the formula was entering her stomach and not her airways. The room had a big X-ray machine. And a "big girl" chair for Ella to be put in. She looked so cute! It was an interesting thing to watch. They mixed water and barium in a bottle and gave it to her. As she swallowed, the video x-ray showed exactly how she was swallowing and where the liquid was going. It was a quick test and we were out of there, which was a good thing. She was starving since she was not able to eat 3 hours before. We did our first diaper change and bottle feed in the car while in the parking lot that day! We got a call a few days later with the results. Ella only had a minor aspiration, which meant one time the formula did enter her airway. They advised us to make sure she doesn't eat too fast and to keep her upright for 20-30 minutes after a feeding because of her reflux.

We turned in data for her apnea monitor earlier this week and we are waiting to hear back from the doctor.  She had one bradycardia in the duration of this session. If the results look good, Ella will officially be monitor free! 

"I'm half a year old!"

It is hard to believe our precious girl is six months old. We have been home for a little over two months, though it feels longer than that. We are all together right where we need to be, enjoying each step of this journey with our powerful micro-preemie!

Love the Little Things

Ella weighs: 8lbs 13.5oz
Ella measures: 21 and 1/4 inches

Late night feedings with Ella have become my favorite. The house is quiet. The pace of the day has slowed. And somehow the ever present exhaustion fades as I lift my precious baby out of her bassinet. Her nighttime lamp gently glows, highlighting her tiny features. I brush my finger across her cheek, waking her up enough to realize it is time for her bottle. I can't help but stare as she brings her hands together to rest on her belly. As I feed her, I start to breathe more deeply. My mind eases. My heart calms. My soul opens and reflection fills the space around me. In these quiet moments, I am filled with emotion as I reflect on our journey.

Five months ago, on this day exactly, Ella was 12 days old, 26 weeks gestational. She weighed 1lb and 2oz and was surviving on a jet ventilator giving her 300 breaths a minute. She was battling a blood infection. She was receiving antibiotics through a PICC line, which was a miracle in itself because a few of her fragile veins had been blown when trying to get it placed. She had already endured multiple transfusions, a chest tube placement, and a collapsed lung. After being discharged for the second time, I had been home for five days. I knew I had had a baby, but I definitely did not feel like a mom. My daughter was struggling to fight for her life because my body could not carry her to full term. I felt immense guilt and sadness. Another human being was suffering and I felt responsible.

Feeding her tonight, I continued to stare at Ella's hands. Her fingers, once too small to wrap around mine, were clasped together like they were meant to be.  Being born at 24 weeks, she hadn't had enough time to experience being curled up. She had to learn how to do this. To practice. In the NICU, she had to be positioned because she was too weak to do it on her own. Bringing her hands together was a milestone for her. Yet here, now in this moment, she does so effortlessly. She is peaceful. Her peace brings joy to my soul. I still have days where I mourn what could have been, but the majority of the guilt and sadness have lifted. Ella is strong and resilient. In the quiet moments of the night, as I hold her bottle, she reaches her fingers up to grasp mine. She reminds me that she is right where she is supposed to be. Ella is teaching me to love the little things.

Ella is Five Months Old

Today we are celebrating Ella turning 5 months old.

Ella weighs: 8lbs and 4oz

Ella measures: 20 and 3/4 inches 

In the two months home from the NICU, she has had many firsts. 

Ella has:

-discovered her lungs can make noise and isn't afraid to show off her crying skills

-had her first bath in the tub

-worn her first 0-3 month outfit

-figured out how to pull mommy's hair

-learned how to prop her hand up to keep her paci in

-learned how to get her arms free from her sleep sack

-started to enjoy tummy time and learned how to inch herself forward

-visited Grandma and Grandpa's house

-gone on her first stroller ride outside

-face timed with her sweet cousin 

-been visited at home by some of her favorite NICU nurses and RTs

-visited the NICU to say hello to her nurses 

-gone as long as 15hrs without oxygen during the day! 

Ella loves: 

-her sound machine

-swaddles
-Mommy snuggles
-nighttime chats with Daddy

-her girraffe paci "Gerald"
-crying as soon as mommy and daddy sit down to eat dinner

Each day, Ella continues to grow healthier and stronger. At her last eye exam, her doctor reported that her eyes continue to look fantastic post-laser eye surgery. He is impressed with the results and is optimistic about her future vision. Ella is spending her days without oxygen support and has weaned her oxygen needs down at nighttime. This month we are still using the apnea monitor due to her bradycardias. We turned in data today and will hear something by the middle of next week.

Adjusting to the sunshine!  We made it to Grandma's house.

See you guys next month!

The Cardiologist

Today we went to Ella's first cardiology appointment. While we were there Ella had an echocardiogram and an EKG. Both were interesting experiences with a fidgety newborn. The echocardiogram was the hardest part. The ultrasound tech told me she wanted me to keep Ella as still as possible. I immediately had flashbacks to the echocardiogram Ella had before we left the NICU. That one had lasted almost an entire hour due to Ella getting cold, getting the hiccups and becoming hungry. The tech was amazing with Ella and patient as she squirmed and wriggled on the table. I am always fascinated watching ultrasound techs. So many buttons and views and no matter how hard I stare at the screen I have no clue what is happening. Those techs have to have a good poker face, that's for sure.

After the echo, we were taken to another room for the EKG. I am used to seeing my baby attached to cords and lines since we spent so much time in the NICU, but wow, seeing her attached to all of the EKG leads made my heart a bit sad. She was worn out from the echo at this point and laid much more still during the EKG. After a few attempts, due to leads coming off, the tech got the print outs she needed.

Leads everywhere!

The cardiologist came in to meet with us next. She explained that Ella has an ASD, arterial septal defect. It is a hole in the wall that separates the two chambers of the heart. She said that Ella's is  small and of no concern. It will eventually close up on its own. Next she told us that she would be monitoring Ella's pulmonary valve. Ella has stenosis of her pulmonary valve. There is some thickening of the leaflets (flaps) that open and close to allow blood to flow through. No action needs to be taken now. She will continue to monitor Ella every couple of months.

I asked how long Ella would be in her care and she said, "Until she is making 'adult' decisions." And then she chuckled. I am very pleased with our cardiologist. Her bedside manner is top-notch. For a new momma, it is comforting to have such wonderful physicians.

The Pulmonologist

Today we had Ella's first appointment with her pulmonologist (lung doctor).  When we arrived the nurse had me take off Ella's nasal cannula and turn off her oxygen. She said the doctor would want to see how she would do without it. We then went to weigh her. My precious little girl is now 7lbs and 7oz! Hard to imagine that 19 weeks ago she was born weighing 1lb and .6oz. She has come such a long way already. After her weight check, we brought her back in the room and her oxygen saturation level was still in the high 90's to 100's.

The pulmonologist came in we discussed two things: oxygen needs and apnea monitor needs. He reported that the data we turned in from the apnea monitor showed zero instances of breathing apnea, but too many bradycardias (instances of Ella's heart rate dropping below 80 beats a minute). The bradycardias are simply a result of Ella's extreme prematurity. He said as she continues to develop she will grow out of the episodes. As a result, we will continue with the apnea monitor for another month. I was a little bummed to hear this news. The monitor alarms each time an episode occurs and a light remains lit until we physically clear the event by pressing a button on the monitor. Although I did not record the number of times I had cleared the monitor, I did not feel that we had done it 23 times. This month I will be recording each time I clear the monitor or a disconnect alarm goes off. We will turn in the data again on September 1st and evaluate from there.

Since Ella's oxygen saturation level stayed high when we were there the doctor gave us the go ahead to leave Ella off of her oxygen during the day! She will remain on 1/8 or 1/16 liter of oxygen at night. Going in, I had no idea what the weaning process would entail. I am both excited and nervous about this next step for Ella. Day after day she continues to prove how strong she is.

Sleeping soundly cannula-free!