Thick vs. Thin Dilemma

We continue to inch our way closer to the "going home" light! She is still off all respiratory support and doing fabulously! She also is packing on the ounces too. She currently checks in at a whopping 5 pounds 6.5 ounces!!

Friday, May 18th, happened to be my actual due date for Elise. During the day on Friday, I took a moment to think about the last 3.5 months. Imagining myself still pregnant on Friday? Whoa. Imagining myself still teaching?!?! Double whoa. God certainly had a different plan for us.

Speaking of Miss E, the dilemma right now is her feedings. Ever since we found out that Elise was aspirating (swallowing food into her windpipe) during the swallow study 3 weeks ago, the nurses have been thickening four of Elise's feeds with rice cereal. Right now, she is on the thickest of the thick because her swallow study showed her aspirating on anything less than honey consistency. The doctors have slowly increased the amount of thickened milk (formula) in her bottle. However, thickened formula does not give Elise all the proper nutrition she needs. Therefore, four feeds a day are through bottles with the thickened formula and four feeds a day are on the pump with nutritious (yet thin) breast milk. It would be ideal if Elise could take all her feeds by mouth, however, the nutritious breast milk cannot be thickened. If she would take it through a bottle (instead of it going through the feeding tube directly into her stomach), she would aspirate it into her windpipe due to how thin it is.

Soooooo....Monday we are going to do a repeat swallow study to see if she can take a less thickened formula and not aspirate it. Since the first swallow study, she has gained weight, she is older, more mature, and has been practicing swallowing into her esophagus. If she can take less thickened feeds-- well then wonderful! She will be able to take all her feeds orally and get the proper nutrition. If she continues to only take the thickest of the thick on Monday during the study, then she will still need her pump feeds once she comes home.

This means Grant and I (ok, really just me since Dad knows this stuff) will have to be trained how to place a tube down her nostril that goes directly through her esophagus and on into her stomach. We are then trained on how to listen to her belly with a stethoscope and make sure we inserted the tube down her esophagus and not into her windpipe. We do not want milk going into her lungs! When I've watched the nurses do this in the NICU, of course Elise hates when the tube is inserted. Who wouldn't?

Regardless of getting this news today, we must remain thankful. We dodged a huge bullet: since Elise is doing so well off oxygen, there's a 99% chance we DO NOT have to come home on oxygen! She might be coming home on pump feeds, but HOME is in SIGHT! The last thing I want to be trained on is how to insert a tube down my daughter's nostril and hear her scream and squirm, but my best friend said it so well: "It's amazing what you will get trained on and be able to do for your child" (and might I add...It's amazing what you'll do so your child can come home from a 3 1/2 month NICU stay).

We would just have to insert the tube at night and do four feedings during the middle of the night with the tube. During the day, she can get her thickened bottles. Hopefully she will only have to do pump feeds for a few weeks to possibly one month. Then we will probably repeat the swallow study for a third time and see where she is at and what thickness of milk she can swallow safely. Inch by inch we will get there.

There is still a possibility that we MAY dodge this 'pump feed' bullet on Monday if Elise can show us she CAN take less thickened feeds and not aspirate. However, Elise's primary nurses, who know her inside and out, are not hopeful of this occurring. They think the swallow study won't show much improvement from the initial disastrous swallow study from three weeks ago, and therefore, she will be on the current plan once we come home: 4 thickened formula feeds with rice cereal through a bottle and 4 feeds of the nutritious (thin) breast milk on the pump.

The nurses and doctors are confident in me that I can learn all I need to in order to bring her home and provide her a successful environment. I just need to gain confidence in myself!

On my drive home from the NICU today, I was thinking....women need a set of ovaries AND a set of balls. I think God secretly always gives both to females. I just need to find mine so I can get over my "donotwanttohurtmychild-phobia."

I'm almost ready for you Mommy and Daddy! 

Onward and Upward~
G & J & E

Kiss Those Lips!

What a milestone day! Miss Elise Diane Olsen came off all respiratory support!!!! No more nasal cannula. Her lungs are proving to us that they are ready to handle “this breathing thing” on their own. Wow! I find myself pinching my arm to make sure I am actually typing the above statement and not dreaming. Inch by Inch…we are getting there!

Of course today was beyond exciting. We couldn’t wait to get to the NICU and start kissing Elise’s lips…something we’ve never been able to do because a breathing apparatus has always stood in the way.

 

However, in a weird way, taking off the nasal cannula was a little nerve-wracking as well. There was no more “turning her up” or “giving her a little more support.” Of course the nasal cannula was on stand-by all day today (and probably tomorrow) since we are in the trial period, but the time has finally arrive for her to show us what she’s got. She has to keep her oxygen level at 92% or higher to be considered ‘successful with no support.’ At 91% an alarm sounds that tells the nurse she is de-satting. A slight dip down is not worrisome. It becomes alarming if Elise would continue to keep her oxygen level in the low 90s or high 80s.

Another reason I was nervous that they were removing the nasal cannula today was because the eye doctor always comes on Thursdays. He uses a big black piece of equipment that keeps her eyes open so he can look in and examine her retinas. Regardless of a person’s age or size, this would piss off any human being. Sure enough, Elise likes to fight the eye doctor with the best of preemies. A nurse holds Elise’s arms down while she screams bloody murder. I worried about how Elise would handle the eye doctor drama today with no respiratory support. When she got so worked up during the eye examine, would they have to quickly put a mask on her to give her some breathing support?

No fear…sure enough, she sailed through! She impressed everyone, especially her momma and daddy. The best part? The eye doctor said he has decided to move Elise to every other Thursday appointments because she continues to improve with every examination. Yeah!

Daddy's mini

Our trial period with no respiratory support continued to go well until about 5:00 when Elise started to show signs that she was de-satting and not bouncing right back up. She kept her oxygen level around 89-91%. The alarm had nurses and doctors studying her monitor screen, while it had momma and daddy worried that nasal cannula was about to go back on our daughter’s face. We left for dinner around 6:00 with the thinking that when we returned for our night cap, there was a strong chance Elise would be back on oxygen. If she indeed would have to go back on it, it was highly likely that she would be coming home on oxygen.

At dinner I expressed my worry and downright frustration about this. When a person gets to a point when they ‘can see the light’ within walking distance, it’s hard not to get frustrated with the slightest setbacks. G and I talked in length about how we will adapt at home if she does come home with oxygen. Certainly NOT something we will wish for, but something we will accept if our hardworking lady needs it.

After dinner we headed back to the hospital. Again, we thought Elise would probably be back on cannula. Sure enough, the night nurse said Elise had kept her oxygen between 97-100% since shift change. Amy, the nurse, was very promising and helped me feel much stronger. Hearing her say, “I think Elise will do great with this new change,” meant everything to me. It was much easier to head home after seeing Elise in the high 90s and hearing the positivity from Amy.

On the scale with a double chin...that's our girl! 

I think I’m also overly tense this week because our doctor is brand new to Elise. Unfortunately, every 16 weeks, the NICU doctors rotate floors and patient assignments. We’ve worked so close with Dr. Ben Saad, Dr. Pyle, and Dr. Maylock for our entire NICU stay. This week, two new doctors were introduced to Elise. These doctors have had Elise on nightshift sometimes, but it’s incomparable to being the day doctor that calls all the shots and communicates with family. Although I understand hospital policies, such as doctor rotations, it still isn’t comforting when a doctor has to learn about Elise after we’ve spent three and a half months with other doctors that know her inside and out at this point.  Fortunately for us, the new doctor, Dr. Tauscher, is very nice and knowledgeable. He listens to family members and leans on the nurses before he makes big decisions because he knows family members and nurses are the constants in Elise’s care. It will take sometime to get to know him like we know the other doctors, but we certainly will try. We loved hearing Dr. Tauscher say, “I’ve been instructed by Dr. Ben Saad to follow the plan in place for his little girl, Elise.” It’s nice to know the doctors get territorial over their patients and their families because we certainly get territorial over them.

We continue to pray that Elise will soar! It’s all up to her now.....wait, hasn't it always been?

Goodnight,

G & J & E  

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