Capturing Our Normal

Several weeks ago, we received a fabulous gift from one of Grant's medical school buddies and her family. It was a gift certificate for a professional photographer from the Indianapolis area to come capture a day in the life of a NICU baby.

Joni Streit is absolutely amazing! (www.streitphotography.com) Due to the MRSA regulations with Elise, I had to ask Joni to put on the gown and gloves. I hated to ask her to do this, but she shot her camera for over 45 minutes with all the garb on, never complaining once. She was at complete ease and so were we! A HUGE thank you to Joni and her incredible work! We've posted some of our favorite pictures from the session. These were taken on 5.2.2012 when Elise was approximately 4.5 pounds. Enjoy!

Melt. 

Dr. Pyle happened to stop by during the shoot :)
We are forever grateful for everything the doctors and nurses did to keep our baby girl alive.  Miracle Makers. 

I didn't know I was capable of loving this much. 

Sleep baby girl, sleep. 

To have someone so dependent on us...we are blessed beyond words. 

We. Are. Family.

We've come a long way...Daddy's ring used to fit up to Elise's elbow.
Now it fits over 3 little toes. 

No doubt that she is loved. 

We can't wait to leave behind all the wires and cords.

Daddy's Girl she is...

Those eyes....those EYES.  

What a story these eyes can tell...

For many days those tiny fingers didn't grasp on to anything.
Her touch means the world to us. 

Elise continues to improve during the last leg of our NICU journey. She now weighs FIVE POUNDS, THREE OUNCES! She is on 1/4 of a liter of nasal cannula and still sitting at room air (21%). Her bottles continue to go well...she slurps them down and gives me a look that says, "More Please?" Elise's nex tdoor neighbor, Abby, was discharged today. I felt bittersweet while rocking Elise and listening to the excitement in Abby's parents' voices as they were given final instructions for their preemie baby girl. I'm sure they are home by now soaking up parenthood in their home. We cannot wait to be doing the same!

Continuing Forward,
G & J & E

We are Family!

We had a very busy weekend! It's always fun to sit down and blog about the exciting moments...

Friday, Uncle Matt and Aunt Becky got into Indianapolis after their long 9.5 hour car ride. Becky had not seen Elise since she was three days old. Uncle Matt saw Elise right after her PDA surgery on Feb. 21st. Needless to say, they were both chomping at the bit to get their hands on their sweet niece! They got to give her a bath and rock her to sleep Friday night. I know all three of them loved it. Nothing better than family time.

proud uncle :)

Hi, Uncle Matt!

Loves her bath from Auntie B! 

Saturday was a wonderful day as well. Uncle Jordan graduated from Indiana University School of Medicine! We are all so proud of his amazing accomplishment! We are especially excited that he will remain close to home for his residency program. Out of fourteen IU applicants, Jordan was one of six medical students who was chosen to complete his neurological residency at IUSM in Indianapolis. Elise is one blessed little lady to now have TWO doctors in her immediate family.

Dr. Raynor! 

At the graduation ceremony on Saturday, I couldn't help but think back to Jordan's white coat ceremony four years ago this August. This was before Grant, before Elise, and before Momma passed. I remember watching my mother's reaction as Jordan walked across the stage of the Murat Theatre and a doctor helped him into his first white coat. Mom's face was priceless...a huge smile as her eyes glistening with tears. I'm sure she wondered if she would be able to watch him walk across the stage four years later to graduate medical school.

A very proud momma with her doctor son-- just beginning his journey

She did watch him walk across. She had the best seat in the house along with our grandpa and grandma and our 90-year-old Dr.  Russell Davis. Was it hard to not have her physically with us on Saturday? Absolutely. She flooded our minds and hearts many times during the moments we celebrated. However, we could feel she was with us, making sure we were celebrating the right way...many laughs, only happy tears, and of course, cocktails in hand. I think we made her proud....the only way we want our Momma to be.

Momma continued to be in our heats and mind on Sunday, Mother's Day. I know she wanted to be around to see me become a mother, but God had a different plan. Today marks the second Mother's Day that she has spent in Heaven. As I think about her on this Mother's Day, I feel her patting me on the back. No words need to be said. Just feeling her patting me on my back keeps me confident that I'm doing the best I can do as a new Mommy. I know she approves.  It's hard work to be a good mother, and I hope everyday I'm on my way to the level of my own mother. Quite frankly, being a good mother takes big cojones (or shall we say ovaries?) that allow mothers to remain strong during the difficult moments of raising a child or children. I know Matt, Jordan, and I gave our mother plenty of worrisome moments as a single mother of three children- all fourteen months apart, but we all made it through. Elise has already presented us with numerous moments when we've had to remain strong during times of instability, but that's a child's job, right?

In the end, the most exciting part of my first mother's day is knowing we are almost at the end of our NICU journey. Elise continues to soar! She is now on one-half liter of nasal cannula and still sitting at room air (21%). The doctors continue to play around with her feedings so she continues to increase bottle feeds and decrease pump feeds. She now gets four bottles of rice cereal a day of 25 ml's. The other four feedings are fortified breast milk and on the pump. Elise also continues to increase her weight. She is now up to 4 lbs. 15 oz! SO close to having a five pound party!!

What a story this eyes can tell....

Guilty! ...of being cute. 

Getting closer,
G & J & E

Following This Yellow Brick Road

Elise continues to impress us with each new passing day! Maybe she has hit that stride that we've been praying for; after all, she's 39 weeks gestation today. Dr. Ben Saad has increased her feedings to 20 ml's three to four times a day. She is LOVING her bottles! She always wants more and cries after she sucks the last drop! It's amazing how a baby will react when the milk she swallows is NOT going down her trachea.

Lovin' my honey-thick milk

As for oxygen requirements, she is on one liter of Vapotherm, but has sat at the lowest percentage (21% = room air), so Dr. Ben Saad plans to move her to one liter of nasal cannula tomorrow morning.

The eye doctor came by for his weekly visit this afternoon. He said he continues to see improvement week after week. Yeah! He also told us that he has a satellite office in Greenwood. This will be a nicer future option for us than Carmel. Once we are home, Elise will need to continue her appointments with him. He said right now it is still too sketchy to say whether or not Elise will have eye issues when she is older. We asked about glasses in school, lazy eyes, cross-eyed, etc. Once she begins seeing him as a full-term baby, he will most likely be able to answer our questions. However, eye glasses are the least of our worries. We are just thrilled that her eyes are making progress week after week.

"Don't worry Momma and Daddy...my big brown eyes are going to be just fine."

We just left our muffin after our night cap time. It's amazing how she is filling out her preemie clothes. No more baggie outfits for our gal! Are we surprised she is 4 lb. 12 oz. now?! I guess if we ate molasses twice a day we'd become chubba wubbas too.

I see a chubby chin!

We are enjoying this yellow brick road that God has laid for us. However, we continue to pray for no more set backs. Our next "trail" MUST be home to Seymour. Soon. Very soon.

We're not in Kansas anymore Toto---
G & J & E

Our Textbook Feeder

As a new parent, I wasn't aware of the signs a baby would give if she was aspirating during a feeding session. I just assumed Elise's squirming, fussy face, and intermittent coughing during bottle feedings were signs of her getting used to eating through a bottle. Practice? I didn't realize she was taking that milk into her trachea, and the feeding sessions that I thought were successful were actually very painful and uncomfortable for her. As a result of her agitation getting worse during feeding sessions, a swallow study was performed and determined that she was indeed aspirating. The doctors gave her last week to rest and ordered small thickened feeds to start this Monday.

Now that Elise is on day #2 of thickened feeds, she is a new baby! She lays calmly, never chokes, and is described by all the professionals working with her as a 'textbook bottle feeder.' She sucks slowly, swallows, pauses to breathe, and repeats. As a teacher, to hear that my daughter was a textbook ANYTHING, was music to my ears. I find myself wanting to kiss her face off after every successful (this time around, TRULY successful) feeding session.

Her oxygen continues to be weaned down this week. She is now on 1.5 liters of Vapotherm. Next step will be nasal cannula. Once she is successfully on the nasal cannula, she will be weaned by quarters of liters. Her final step will be an eighth of a liter of oxygen before they will try her out on NO respiratory support. We are hoping and praying that her lungs are mature enough to handle 'this whole breathing thing' on their own. If we get to a point that she is taking all her feeds by mouth, but still requires a slight whiff of nasal cannula, they will send us home-- BUT we will come home with oxygen tanks and a monitor to measure her oxygen level. Again, we hope and pray her lungs are ready to come home oxygen-free. No one wants to carry a car seat around AND an oxygen tank. However, if it comes down to coming home on a little oxygen or spending another month in the NICU, we would choose to get our baby girl home. We have learned during our journey that many preemies go home on oxygen for a few months. After some time home and subsequent re-evaluation at St. Vincent's, many times the tanks and monitors can be returned.

We asked Dr. Ben Saad on Monday if he thinks there is a good chance Elise will come home on some amount of oxygen? He was straightforward with us and said his opinion would be, 'most likely, yes.' Bummer. Big bummer.

We are still holding out hope that Elise is going to hit her "launch pad" weight and maturity and NOT need oxygen once we come home. She has never required a ton of oxygen in the NICU. Yes, her lungs were teeny tiny when she was born, but we hope and pray she is going to prove the doctors wrong. Dr. Ben Saad did go on and say that Elise could surprise us and not need it, but he envisions that she will need some support for the first few months at home.

Like I said, I would rather have Elise home on a little oxygen than be stuck in the NICU for another month. However, coming home on oxygen is like getting a golden ticket with a bite out of it. We absolutely cannot wait to be home with Elise, but we are so ready to be a traditional family raising our baby at home. I hate to use the word "deserving," but after sitting in the NICU for 3+ months, I think we should be able to come home attachment-free. Although I've dealt with oxygen tanks for many years with my mother, I'd rather not carry on the tradition with my daughter. It is a tradition that could bury itself and I wouldn't miss it.

Elise has already proven herself as a miracle baby. We know she will continue this trend. Let's prove those nurses and doctors wrong, and instead, come home oxygen-free!

Sleepy eyes! Maybe it was from all the preemie cupcakes we put in her bottle today? After all, when you are THREE MONTHS OLD TODAY, you need a little birthday fun, right?! ha! 

Onward!

G & J & E

Sleep Tight Mommy, I've Got This

When I made my routine call to the NICU last night before I went to bed, I was slightly taken back by the nurse's update. She told me Elise had been extremely fussy. Nurse Maria had tried everything to soothe her, but had no luck. While she's asking me if I have any calming tips, I hear my daughter wailing in the background. As much as I tried to tell myself that she "is with a babysitter tonight," I felt awful inside. If she were 30 minutes away, I would've thrown on some slippers and driven straight to her. However, she was 90 minutes away and it was 11:30 at night. I hung up with the nurse and had a very uneasy feeling inside. This was a time that being so far away really, really stunk. Needless to say, I didn't sleep well with the replay in my head of Elise's wail.

I should have called Maria to get another update at 2am, 4am, and 6am when I would awake and think about Elise crying. However, I would talk myself out of calling and convince my body to sleep a little more.

God had a lesson for me. Once we arrived to the NICU this afternoon, Maria left a message for me with the day nurse:  Jessica, Elise fell deep asleep 15 minutes after we hung up last night. I wanted you to know that she didn't cry all night long. 

Like all mothers, we worry. But our children are usually saying, "Ma, I got this." I HIGHLY doubt I will never worry again, but as of today, lesson learned.

As a person can imagine, we couldn't wait to get up to the NICU today after church. It was so fun for our friends, the Fallis family, to see and hold Elise. Suzi had been up with me last week, but Shane, Shelby, and Sadie had not seen Elise since she was a couple of weeks old.

Big stretch! 

Tuckered out in Sadie's arms

Like baby, like babysitter :)

Its hard work hosting visitors....

During our night cap, we wanted to give Elise another bath! I made sure to stop off at Walgreens to buy some Johnson & Johnson baby lotion. Hands down, there is NOTHING better than the smell of a J&J baby!

Our little monkey on the scale....4 lb. 7oz!

Tomorrow is a big day: we get to start 5 mL bottles again with the thick, thick milk. After this coming week of trialing bottles, Elise will have another swallow study next week to determine if she is handling the thick, thick milk. Then she will be weaned down slowly so that (hopefully) she will go home on breast milk only. We appreciate all the prayers as we attempt to take a step forward this week...

Today, we were reminded of the immense amount of progress our little lady has made in little less than 3 months. Another one poundish baby moved into a NICU spot close to Elise this afternoon. Dr. Ben Saad and many nurses worked hard to get he/she ready to thrive. All the beeps and lights, the little black glasses on the baby to shield the light, and the sound of the damn oscillator were enough to remind us from whence we came. Those eyes above speak to us and say one word: MIRACLE. 

Goodnight,

G & J & E 

Slow but Steady!

We had SUCH a good day with our little lady today! The eye doctor did his examination before we arrived this morning. Her retinas are now in zone 3, moving along as they should. He continues to see improvement every Thursday. Yeah!

As for feeding and growing…Elise is doing just that. Her feeds are still on the pump over 90 minutes every 3 hours. Dr. Pyle wants no bottles until Monday. At that time we will try 5 ml’s of the honey thickness milk and see how she does.

After a few days of a stagnant weight, Elise gained 40 grams tonight. That puts her checking in at four pounds, six ounces. As Aesop wrote, “Slow but steady wins the race!” … the weight race that is.

Elise still battles with reflux, but it is getting better by the day. Her fussiness has greatly improved and she is more herself lately. I would be fussy too if I had milk going down my trachea! As much as we want to see progress, this week of ‘rest and relaxation’ is actually giving us progress. It is funny how we, as humans, have a tendency to push, push, push to see desired results. When we step back and take a breather, sometimes that is when we see our progress. There are so many lessons to learn as parents. This just happens to be one of them.

Our favorite time with Elise is definitely our ‘night cap’ time at 8:00. There is something about putting a baby to sleep that ends your day perfectly. Tonight, we got to give Miss E a bubble bath…check out the bubbles! (I would be a little scared too if I had bubbles the size of me!)

LOVE! 

As you can see from the next video, she sure does enjoy her bath time!

And of course, she adores cuddle time with Mommy and Daddy…

I love belly time on Mommy! 

Hi, Daddy! 

Thankful for the blessed day,

G & J & E 

Patience Pump

Sometimes we forget that Elise was born 15 weeks too early. We also forget that she came out weighing one pound five ounces and was on a ventilator for her first 34 days. Eighty-three days later she weighs four pounds five ounces and requires a little high flow nasal cannula. Although she has traveled many 'miles' in life already, she still is very small and actually should be cooking in the womb for another 2-3 weeks. We forget these (major) points about her because she is a remarkable baby who has made a tremendous amount of progress in 83 days. Simply a miracle. Our miracle.

To add to the joy of her being a miracle, Elise is such a wonderful baby.  She snoozes quietly or has her bright eyes open, looking all around and taking in her surroundings. If she does cry, she is easily calmed down once she is cuddled in some one's arms or tucked in her crib.

Lately, she has been very fussy and irritable. After a day of watching her behaviors (arching her back, crying out when nothing was physically wrong, lots of squirming while being held, etc), we were alarmed to think that her reflux could possibly be worsening. We shared our concerns with Dr. Pyle today and he and the nurses agreed that she hasn't been herself lately. Dr. Pyle ordered a swallow study to check and make sure that when Elise swallows, the milk is going down her esophagus and into her belly. The fear would be that the milk is going down her trachea and into her lungs. This is called aspirating. For adults, this would be similar to getting a piece of food stuck in your windpipe. After you cough and cough and finally get it out of your windpipe and down your esophagus, your windpipe burns and you feel discomfort. Now picture yourself having this problem every time you eat. Eventually, you would not want to put anything in your mouth for fear you would feel that discomfort all over again.

Our fear came true today. I quote Dr. Pyle: "It was a horrible, horrible swallow study. She is taking all the milk straight down her windpipe and into her lungs." During the study, they tested Elise with 3 different thicknesses of milk. The thin milk and the medium thickness went straight down her trachea. The thickest milk (think molasses) successfully did go down her esophagus. Consequently, Elise's feeds now need to be thickened. The doctors can do this, but they cannot thicken breast milk...only formula. Sad news for this momma...my milk will need to be put on the back burner for as long as Elise needs her feeds thickened. However, if this is what will make Elise stronger and get her closer to going home....give her the damn formula!

Although you can tell I'm still quite small, I'm certainly mighty! 

The promising news is Elise WILL grow out of this. It's another "preemie thing." In full term babies, their muscles are strong enough that they close off their tracheas while swallowing. Elise hasn't coordinated that...but she WILL. Finding out this issue will obviously help the feedings, but it will also help the oxygen. Dr. Pyle wants Elise to rest and recover until Monday. At that point, we will slowly start introducing bottles with the thickened milk and see how she does. It is the hope of the doctors (and us) that once the aspiration issue has resolved, she will need way less oxygen support than she does now. It is possible in a couple of weeks that Elise could be respiratory support FREE.

All of this news from today is probably pushing our "going home" date to late May now. We are certainly glad we found out this news today at 37 weeks versus 40 weeks. Nothing like being just days away from going home only to hear you've got a couple more weeks to go. That would be heartbreaking times ten. We already know we have a couple of weeks to go...this just adds more time. We also don't want Elise acquiring a food aversion. We want bottle feeding or breastfeeding to be positive experiences for her so she will continue to want to take food and drink orally. Quite honestly, we figured some not-so-good news was heading our way due to her being extremely fussy and irritable the last few days. All in all, it was good that we figured out the issue today and can get her and her poor trachea some relief.

The teacher in me wants to teach my daughter how to swallow. It comes so natural for us adults. Maybe I should draw some color-coordinated visuals and we should practice daily?

Humor aside, she will get there...and mommy and daddy will too. Lately as parents, we feel like we are taking part in a game of Tetris, and in this game the blocks are piling up out of control. We are relieved to have answers, but we are going to have to take our patient mind-sets and kick them into over-drive.

I wish there was a pump that would give you patience when you press a button, similar to the pain pump I had after my caesarian section. Every time the button is pushed, an extra dose of patience travels into your heart and mind. Anyone else want to join me in pressing the patience button?

How could you not gain a little patience just by seeing this?! 

Ahhhhh,

G & J & E