Monday, April 30, 2012

Elise Will Call the Shots

We couldn't wait to get to the NICU today to see our sweet muffin. Grant, many times, has to spend a few days away, due to his work schedule, before he gets a chance to spend a day with Elise. I can usually only spend one day at home before I'm chomping at the bit to get back to Elise's bedside. We really get excited when G's work schedule allows him two days off together, like today and tomorrow.

When we arrived today, unexpected to us, Elise was not acting like herself. She was pale, fighting to breathe, and dropping her oxygen from the 90s (where she needs to be) down to the 40s (not good). The nurse informed us she was watching Elise extra closely today because of her off behavior and that Dr. Pyle had been notified during his examination.

Daddy Grant held Elise first. Grant kept studying Elise face and body cues as he rocked her. His face became more serious the longer he rocked. He finally said, "She does NOT look good and I'm really worried about infection." This of course made me very nervous. Not the infection road again?! Elise had just taken the slight step backwards to Vapotherm Friday night, so why is she looking weaker?? The jump from nasal cannula to Vapotherm was suppose to support her....not weaken her.

Grant took off his gown and gloves and asked to speak to Dr. Pyle immediately. I don't know what came over me, (ok, yes I was mother worry overload) but I held Elise close to my chest and began to sob.   It was the ugly/worrisome cry. I just couldn't help it. As I told the nurse, Elise was "too still" as she laid in my arms and her breathing was very rapid. I'm no medical professional, but something was wrong.

Dr. Pyle came to the bedside right away. He ordered a CBC (a basic infection blood draw) and sat down to talk to us. Dr. Pyle didn't believe Elise was getting sicker, but he did think she was exhausted from her trial run on nasal cannula and taking so many bottles. As the doctors and nurses always say, "The babies will tell us what to do and when to do it." Isn't that the truth! When Elise was placed back on Vapotherm Friday evening, she went on 1.5 liters...the bare minimum. Due to her behavior today, she was placed back on 3 liters. No more bottles while she is exhausted....feedings will go on the pump. Dr. Pyle wants her to be as comfortable as possible and gain more weight. Again, it's all about maturity and weight gain. Bottles and breastfeeding are only successful after the maturity and weight gain kick in.

Although I knew all these rapid changes were what Elise needed today, they all felt like huge steps backwards. When she initially started on Vapotherm three weeks ago, she was on 3 liters. They weaned her down by half liters (over 2-3 weeks) until she was at 1.5, and then she tried nasal cannula for 24 hours. When they put her back on 3 liters today, I felt like the last 3 weeks of progress were stripped right out from under us. I guess you could compare the ups and downs of a NICU stay to the game of Candy Land. After pulling cards that read, "take 2 steps forward," a card that reads, "take 4 steps backwards," can easily sink your spirits.

As Dr. Pyle and Grant discussed Elise further, I continued to hold her and cry big Momma tears. I kept telling myself to 'get it together,' but the minute I would look down at her being "too calm" in my arms I would start to cry all over again. Before Dr. Pyle left the bedside, he stepped in front of my rocker, bent down, and got eye level with me. His words will never leave my mind for as long as I live. He said, "Momma. Momma. Listen to me. I think of your daughter as one of my own. She is going to be ok. I know this is frustrating for you and you are simply heart broken that we've had to take a few steps back. She will get back to where she was and you WILL be taking her home someday. I promise you this. Hang with me. I've got your daughter. I've got her." 

After hearing what Dr. Pyle had to say, I was reminded what wonderful care ALL of us are receiving at St. Vincent's...not just Elise. Dr. Pyle has a wife and four daughters of his own. This tells me he has probably spent many nights trying to 'get through' to females. He sure got 'through to me' today.

After an exhausting day, I took G out for an early birthday dinner. We promised ourselves that we would put on happy faces and indeed celebrate. We did just that! After dinner, we went back to the NICU for our 'night cap' with Miss E. She was already acting MUCH more like herself. The CBC came back NEGATIVE so infection looks like a very small chance. There is one more lab that will come back tomorrow morning that might show something. However, since she is already acting more like herself, we are all led to believe that this past week's activities (bottles, nasal cannula) were too much for her at this point and she simply tuckered out. Today was her day to say, "stop, I need to catch up."

Tonight, we gave her a spit bath (not wanting to use up too much of her energy), dressed her in clean clothes, and snuggled her in Mommy's arms until she was fast asleep.

All 4 lbs. 5 ozs. clean! 

Look who went from her bassinet to a big girl crib! 

Since Grant is hard to buy for when it comes to birthday gifts, I decided Elise needed a gift that would make Daddy smile really big.

Personalized Baby Scrubs! 
Even though we've got more progress to make on our NICU journey (and even though it's progress we've already made once), we can't wait to spend another day with our muffin tomorrow.

On Elise's time...not ours,
G & J & E

Saturday, April 28, 2012

The Hunger Games

Do not be alarmed. For those of you who are into the latest fad, The Hunger Games (a movie and a series of books), I will not be writing about children eating children. The NICU continues to supply Elise with enough milk that she doesn't have to start looking at her next door preemie neighbor, David, as her main food supply.

The Olsen's hunger games are much less gruesome, but still filled with worry and excitement. Before Elise can get the 'pass' to go home, she must take all her feedings by breast or by bottle. I mentioned in a few posts back that breastfeeding seemed optimistic with Elise. I know many factors play into a successful breastfeeding bond, but ever since the day when the lactation consultant was with us, breastfeeding has not gone well at all. Unfortunately, many times preemies are started on bottles first, instead of the breast. For one, mothers are not around for every single feeding, so if a baby is ready for a feeding by the mouth, many times nurses bottle feed the baby. Second, it can be quite challenging to breast feed a tiny 4 lb. baby with wires all over the place and no true private/quiet area to relax and bond.

When a baby is given a bottle before the breast, many times the baby gets very used to the instant milk supply. One suck, and the milk comes out of the bottle. The breast is quite different. So far, Elise has not shown patience when we try to breastfeed. She begins to cry and squirm when she doesn't get instant milk. This makes me feel bad, and my stress level rises (at the same time trying to keep the latex gloves on [MRSA regulations] and making sure I don't pinch any wires). I'm sure Elise can feel me becoming stressed. I end up calming her down and giving her a bottle.

I am not going to give up, but it is certainly disheartening after every failed attempt. Like nurse Karrie said, many times breastfeeding goes smoother once a mother and baby are in the privacy of their own home with no wires, no gowns, and no gloves. I plan on scheduling more lactation meetings to make sure I'm doing everything I possibly can to make breastfeeding easy for Elise. Sometimes weight gain and maturity of the baby will help the process. It is easy to forget at times that Elise still has 3 more weeks until she should be here with us. Worst case scenario, breast feeding doesn't work for Elise, but she will still get my milk through a bottle.

This brings me to the next Olsen Hunger Game: Pumping. I've been pumping every 2-3 hours for almost 3 months straight. Sadly, I've started to see a decrease in my supply in the last 2-3 weeks. Before my decrease, I was getting 10-11 ounces of milk per day. I am lucky to get 7 ounces a day now. Elise currently takes a little over 8 ounces a day. Of course I have two freezers full of milk at home that I've pumped while at home and even as far back as when Elise was on the TPN (IV nutrition) and couldn't take my milk. However, the freezer supply will be used up quickly as she continues to grow and requires more and more ounces.

I've talked to the neonatologists and read a lot of research on Fenugreek. It is an herbal supplement that helps many mothers increase their milk supply within 24-72 hours. I started taking the pills last Wednesday and haven't seen any increase so far. It is my hope my body just needs a little more time with the pills than the 24-72 hour window. I'm still drinking lots of water and safely dieting with Weight Watchers for Breastfeeding Mothers. I certainly hope I am not one of those preemie mothers that pump for so long (with no success of breastfeeding) and my milk supply diminishes. This, unfortunately, does happen to some preemie moms who pump many, many times without the closeness of their baby. The body basically says, "I'm over this," and shuts down. However, if this happens,  I will cross that bridge when it comes.

Elise continues to do well with bottles (this is the exciting part of the hunger games!) She doesn't take them entirely, due to being a tiny tot and tiring out quickly, but she is slowly increasing the amount she can take by mouth. The remaining milk is placed on the feeding pump and is pumped directly into her stomach. Once she shows that she can take several bottles entirely by mouth, they will remove her NG tube (feeding tube).

The Game is not over yet....

On Thursday Elise was placed on regular nasal cannula from Vapotherm and did well for 24 hours. By Friday afternoon, she was tuckering out and her breathing was more labored. By Friday evening, the doctors placed Elise back on Vapotherm after a big ol' 5 minute brady when Elise decided she was going to become a blueberry muffin again. I was there to witness this brady. It wasn't pretty to say the least.

This step back to Vapotherm is not huge. Vapotherm will give her a higher flow than regular nasal cannula. Today, after being back on the Vapotherm for 12+ hours, she has already started taking more by the bottle than she has in the past couple of days.

Again, it's a game. The main 3 issues for Elise are to (1) gain weight, (2) take more feedings by mouth, and (3) get off respiratory support. The game becomes that these three issues don't always increase/improve together. If she doesn't have enough respiratory support, she will burn too many calories trying to breathe. Moreover, she won't gain weight and she won't have the energy to eat by mouth.

Grant and I so badly want her to soar quickly through these last few steps of her NICU stay. However, as much as we want her home right now, we want her ready to be home. All we can do is give her our little pep talks and snuggle her close. Aunt Suzi and I were able to do just that today!

"I'm a big girl!" 

Two beautiful ladies

Back on Vapotherm and sleeping peacefully! 
Game on,

G & J & E 

Wednesday, April 25, 2012

The Nursery Awaits!

We posted "Underway!" with photos of the nursery under construction a little while ago. As of last Thursday night, all the work on the nursery is done (minus very minor details). All we need is Elise and the nursery will be absolutely complete! We are very happy with the end product. I find myself going upstairs at times and just standing in her room looking around; picturing Elise laying in her crib and me choosing outfits for her to wear from her closet. Even though Elise will stay in our room with us when she first comes home, it's hard to imagine (but very exciting) that this room will be hers for years to come! 

scrabble letter idea is from Pinterest...the numbers spell out her birth date 02-08-2012
the iPhone camera is by the closet door (cord still needs to be taken care of). We can move the camera and hear audio from our iPhones (this was a Daddy project!)

personalized rug from 

signs from zulily and flower dresser knobs from eBay

chandelier from Walmart online

this wall art spoke to me...especially with Nana Lisa always on my mind

all of Elise's books from the gender reveal party on 12.23.12 

Too bad Elise will have nothing to wear...

Inside the closet ~ the shelf and wall space will be for her NICU scrapbook pages and her itsy bitsy "firsts" (first blood pressure cuff, first bottle, first pacifier, etc) 

Every teacher's daughter must have a chalkboard!
Letters/Numbers were white and I painted them to go with the bedding

The excitement continues....

Miss Elise hit FOUR POUNDS last night! She also took an entire feeding straight from a bottle for me. When Dr. Pyle called today with his update, he said we will say goodbye to Vapotherm tomorrow and Elise will go on regular nasal cannula. He also wants to see her take more and more of her feedings from a bottle. 

We continue to keep a realistic frame of mind and know there are still some steps to take before we place her in the car seat and head home, but we pray that these strong days keep heading our way. 

G & J & E 

Monday, April 23, 2012

Light at the End of a Long Tunnel

I've written about Elise's doctors before, but I must write about them again. They are incredible individuals that I am in constant awe of their knowledge and skills. Elise has a team of 5 neonatologists that rotate schedules. For the next two weeks Elise has Dr. Pyle. He has four daughters of his own and is a guy that you'd love to sit down with while sharing some beers and laughs. He is hysterical when it's appropriate, but very serious and direct when he needs to be. Out of all five doctors, Dr. Pyle is the most aggressive when it comes to Elise's care. He pushes when he thinks Elise can step it up, but he patiently waits for her to gain weight and grow stronger before he does too much. I can't say enough about Elise's entire neo team, but we are pretty partial to our favorite Dr. Pyle!

Today when we arrived in the NICU and I saw Dr. Pyle's name on Elise's board, I knew feathers would be ruffled (in a good way). Many changes took place today! Elise is now on 1.5 liters of vapotherm (down from 2 liters). He has increased Elise's fortified milk to 30 calories because he is not completely satisfied with her weight gain. He says he looks at weigh gain over a week's time. Although she gained weight last week, she didn't gain everyday (which is needed at this point).

The biggest (and best) change today was Dr. Pyle telling me I was going to start breast feeding! Up until this point Elise has been doing non-nutritive sucking, after I pump, to get used to sucking on a breast rather than a bottle. Today, I actually got to feed her! Our nurse called lactation to the bedside to make sure we were doing things correctly and Elise was comfortable. The lactation consultant was very impressed with how well Elise did for her first time!

The lactation consultant said it is very promising that breastfeeding will work for Elise. This is wonderful news because I've read and heard from other preemie mothers that sometimes preemies don't do well with breast feeding because of their prematurity. I look forward to the bonding that will occur between Elise and I when I get to feed her on a regular basis. However, due to her still needing fortified milk, four feedings a day can come from the breast, but the other 4 must be pumped bottle milk with the extra 30 calories. The bottle feeds can be Daddy feeds! In a way, I feel like Grant and I are both very lucky with the feedings. I get to breastfeed her, but there will also be times that she will need to take a bottle from her daddy.

Elise currently weighs 3 lbs 15 oz-- so close to 4 lbs! Dr. Pyle said if Elise's weight was the only issue at hand, he would send us home today. However, before Elise can come home, she needs to prove she can take all her feedings from the breast or the bottle. It would also be wonderful if she could be completely off all respiratory support (i.e. oxygen). I asked Dr. Pyle, "if everything goes just 'peachy' from here on much longer do you think we have in the NICU?" His reply? TWO TO THREE WEEKS! It definitely looks like we will be home before my official due date of May 20th.

It has been a very long and worrisome tunnel in the NICU since February 8th. Many times, we had to search hard for the light. However, we are seeing the light now!

Yesterday, Auntie Lulu (Karen) got to hold Elise for the very first time. She also snagged some beautiful pictures for us. Enjoy! P.S...We don't mean to leave Daddy out of the pictures...he was enjoying his time with Ami and Grande. 
I love my grandpa!
Our 'serious' muffin

"Yes Mommy, I will be good for the nurses."
"Ok, but don't start sticking your tongue out this early." 

Can't get enough of this tiny tot

yay! chin rolls! We are getting BIGGER!! 

It's exhausting being precious
"Hi Auntie Lulu!"
Excitement is building! 
G & J & E 

Saturday, April 21, 2012

Feeling the Blessings

We have had so many blessings this weekend! I've been chomping at the bit to blog all day long. Let me just say it is SUCH a wonderful feeling to have so many back-to-back great days. We have always known we've been blessed throughout our very trying journey, but these last few days of being around so many family and friends have been a wonderful reminder for us. We are on the last leg of our journey to bring Elise home....and we can certainly feel everyone's love and support.

Our fabulous weekend began Friday when Ami and Grande arrived from Milwaukee! On their way south to Seymour, they met us at the NICU to see Elise. Mind you, Ami and Grande had not spent time with Elise since she was 3 days old. They rushed to Indianapolis for Elise's unexpected birth, and then returned to Milwaukee to unexpectedly experience a medical scare with Ami's heart. Once Ami was healed and well rested from her open heart surgery, they both were extremely anxious to get a chance to see all the progress with their sweet grand baby.


Grande changing his first diaper! 

"Hi Grande!" 

After a great visit Friday with Miss Elise, we all traveled home to Seymour so we could get ready for my second baby shower, which was a brunch on Saturday morning at Debbie's lake house. I couldn't get to sleep Friday night because I was so excited for this shower! I'm so grateful to have these 3 hostesses in my life. Peggy and Debbie are like mother mentors to me and Rebecca has been one of my closest friends since childhood. We are like sisters. Yummy quiches, fruit salad, and sweet doughnuts were served along with an adorable cake from Take the Cake. I was blessed to have 26 girlfriends come and spend the morning with me! Love you ladies!!

 Elise continues to do well! Dr. Maylock placed her on 2 bottles of 5 mL's per day. Slowly but surely she will increase her intake with bottles. She has downed both her 5 mL bottles daily, while wanting more! Her oxygen levels have been awesome as she is on 2 liters of the vapotherm. Regular nasal cannula here we come soon!

It's days like yesterday and today that help you put your feet on the ground and make that drive to the NICU day after day and KNOW that we will be home SOON.We can't wait to be with our strawberry tomorrow....

Feeling blessed,
G & J & E

Wednesday, April 18, 2012

Planning for the Final Weeks

Our days are looking better and better! The Prilosec seems to be helping Elise's reflux issues and she is having fewer and fewer bradys. Dr. Maylock has already moved Elise's feeds from continuous to receiving a bolus feed of 30 mLs (one ounce) over 2 hours. Then she rests for one hour before another 30mLs. She seems to be adapting to this quite well! She gets fussy right around feeding time. The nurses tell me this is a good thing because she is showing that she is hungry and can feel that her stomach needs nutrition. Next step: bottles! Hopefully by Friday we can start slowly reintroducing bottles to Miss Elise.

Miss Elise now weighs 3 lbs. 10 oz! We can't wait for the four pound party...only six ounces to go!

Many respiratory therapists, nurses, and doctors have all commented on how Elise is looking more and more like a chubby baby. This is music to our ears! Sometimes preemies don't get that "baby chub" right away because they didn't get to cook as long in Mommy's belly like full term babies do. We are so excited to see Elise's cheeks start filling out!

This was Mommy's afternoon view. Can't complain! 

When I arrived to the NICU on Tuesday, Elise was receiving occupational and physical therapy. She seemed so small to me because she was in someone else's lap and I was farther away. It melted my heart when I walked up during therapy and said, "Hey sweetie!" Elise turned her head to see me. What a great way to start my visit.

The audio of this picture is a series of grunts from Elise as the therapist moves Elise's little arms and legs . Hilarious! 

Last night I stayed at the hospital until 11:00. Karrie, my friend who happens to be Elise's favorite night nurse, was taking care of Elise. It's always fun to rock Elise and catch up with Karrie. We also got to give Miss E a bath! Scrub a Dub Dub! For perspective purposes...the green bowl is about the size of a soup bowl. She enjoyed her bath and really loves when a warm wash cloth is rubbed on her head. Ahhh!

I like bath time!


Our big brown-eyed burrito! 

I was glad I got a hotel room last night, but it was sure weird staying by myself. For some reason, in my 28 years of living, I have never stayed in a hotel room by myself. A person would think that since I lived by myself for almost 3 years, I would have stayed in a hotel by myself at some point. I can now say I've checked that off my list (and made it out alive). It is hard to eat out (especially when dieting), and I do miss catching up with G after he gets off work.

I will say that the goodbyes are getting harder and harder for me. Last night's goodbye was just fine... I knew I would be returning this morning to have another snuggle day with Elise. Today's goodbye was a different story. It is a feeling I can't describe all that well. When I see that the time is getting close to when I need to head home to Seymour, I begin to get very emotional. I try to get in all my kisses and tell Elise how much I love her (all the while trying to keep my voice from quivering), but it never fails, I always walk away with an elephant on my chest and tears running down my face.

Here is what I know:
1. I know Elise is fine and being taken care of by very intelligent and loving nurses and doctors.
2: I know Elise won't remember this time in the NICU.
3. I know Elise can't tell time; she has no idea that it will be 48 hours until I'm back kissing on her.
4. I know Elise still needs time to be her 'alternative womb' at times and focus on growing and eating even though she is in an open crib and can be held as long as she desires.

Here is what I don't know:
1. I don't know why I am getting so emotional at goodbye time.
2. I don't know why the guilt creeps back at goodbye time (part of my brain says, "I had to spit her out so early, the least I could do is spend every minute with her.")
3. I don't know if I want to stay in a hotel for days at a time. It can be exhausting to be in the NICU for many hours and no 'change of scenery.' It can also be exhausting to live out of a suitcase.
4. I don't know if I would like to be away from my home and G for days at a time.

As Elise becomes more and more "baby-like" and goodbyes are becoming harder and harder, I have started to re-evaluate my schedule. When I was in college, I student taught at an IPS school in downtown Indianapolis and a public school in Southport (just south of the city). During the year that I student taught, I commuted from my house in Seymour everyday. It was approximately a one hour commute each way. To be honest, I really enjoyed my drive during that year. I enjoyed it so much that when I landed my teaching position in Seymour after graduation, I missed my one hour drive in the mornings. It was a reflective time when I gathered my thoughts and prepared myself for the day. Moreover, my afternoon commute was a wind-down time for me.

Driving to the NICU everyday would not be something new to me. Hopefully, it would help me emotionally get through the goodbyes if I knew I'd see her the very next morning. I know I will especially want to be with Elise every day when I can start breast feeding her. Days that I am tired or have many appointments/meetings on my plate, can still be days that I stay at home.

We are blessed that we are close to "home plate" when it comes to our NICU journey. I will just need to find a plan for these final weeks while the bonding between mother and daughter continues to grow stronger... I surely don't enjoy a drive home with big tears rolling down my face.

G & J & E

Thank you Ribbonz & Curlz! 

Sunday, April 15, 2012

Tugging At Heartstrings

Elise is doing much better with her bradys (when she drops her heart rate and turns a lovely shade of blue). We are hoping that the Prilosec is doing its job and her reflux will continue to improve. The doctors are going to keep her on continuous feeds this next week in hopes that more weight gain and time to heal will set her up for success when they plan to start back with bottles the week after next.

She currently weights 3 lbs. 10 oz! The doctors and nurses tell us that they usually see a lot of maturity when babies hit the four-pound mark. Bottle-feeding improves, reflux diminishes, and the babies begin to require less oxygen. Right now, we don’t want her using up all her energy on something (say bottle feeding) and not gaining any weight. The idea is to pack on the pounds first, then the other energy consuming things will come faster and easier for the babies.

One of Elise’s doctors told me about a month ago that he foresaw May 1st as a possible going home date. As much as I told myself to not hold onto that date in my mind, I naturally did. On top of it being right around the corner, May 1st happens to be Daddy G’s birthday. Can you think of a better birthday gift than bringing your daughter home?? I think not.

Now that reflux has hit and we haven’t weaned any on the vapotherm, I’ve come to terms that May 1st is no longer in our cards. This is certainly not a horrible worry of mine. I know this just means she needs a little more TLC from the NICU doctors and nurses. We certainly don’t want her coming home too early. No matter what, Elise’s first night at home will be nerve-racking for us as new parents.  We don’t need the added worry of bringing her home too early.

However, it is certainly getting much harder to leave every time we visit the NICU. Tonight was my first time I really struggled ‘walking away’ since I was discharged from the hospital. When we visited for her 8:00 time tonight (our “night cap”), Elise was bright eyed and cheery. The eight o’clock time range happened to be the most active time for Elise inside the womb, so it’s interesting that it continues to be her active time now that she is living outside of me.

We changed her clothes, weighed her, and I encouraged some non-nutritional sucking with her. She did show interest in breastfeeding, and once declared big enough by the doctors, she will be able to do this more fully. After some mommy time, I wanted to pass her off to Daddy. He has a very busy week starting tomorrow at the hospital so I wanted him to get some snuggles from his daughter. I happened to sneak in a few pictures. I could look at the two of them all night long. Pure love.

After she had some quality time from both of us, it was time to tuck her in for the night. I guess you would say separation anxiety set in the moment I started to get her all snuggled into her crib. Her eyes were heavy and she was drifting off into dream land, but all I could do was stand beside her crib and cry. The tears came fast tonight. I just didn’t want to leave. All I could do was stand there and continue to tuck in the blankets around her and smooth her soft hair on her head while some of my tears heavily hit her blankets. G had already taken off his gown and gloves, but soon realized I needed some help if we were ever going to get to the car. He didn’t say a word. He knew. He just held my hand as I couldn’t peel my eyes off of Elise. Her nurses are phenomenal, and of course I know she is great hands while I am not there. Also, for the most part, she has been doing so well for a tiny baby that was born 15 weeks too early. She has just recently started to fill out her cheeks and is looking so adorable in her little preemie clothes. Her personality is starting to blossom with a tiny bottom lip quiver when she cries and those big brown eyes that stare directly into yours. 

I’ve been handling the end of our ‘night caps’ quite well until tonight. I can usually tuck her in, give her a few kisses, and we head for the car with big smiles on our faces knowing we will see her soon. Tonight my momma heartstrings were tugged at, and for some reason, I felt like I was abandoning her tonight. It took all of my strength to leave her bedside. Our bond is certainly getting stronger by each passing day.

When Elise was born, she got a gift from a special church family member. It was a stuffed lamb that would record someone singing Jesus Loves Me. Every time the lamb’s ear is squeezed, the recording is played for all to hear. Elise couldn’t have anything extra when she was in the isolette, but once she moved to her big girl crib, they told me to bring in the lamb. I recorded myself singing Jesus Loves Me and set it aside in the house so I would remember to take it with me on my next trip to the NICU. Before I packed the lamb in my car, Jordan was home and he pressed play (not knowing that I recorded my voice). As the lamb started to play, a very serious look came across his face and he said, “How did you record mom (our mother, Lisa) singing Jesus Loves Me?” I told him that was the biggest compliment I’ve ever received, but that the recording was actually myself. He kept listening and said, “This sounds exactly like Mom. I’m getting really sad listening to it.” Jordan’s words meant the world to me.

As most of you know, my mother had a truly amazing voice. It was really an indescribable musical instrument. I do hear much of my mom in me, especially now that she is gone and I ‘look’ to hear her. I think all daughters have this happen to some degree as they grow older; whether it’s speaking voices, how you phrase something, laughs, or certain facial expressions. Having just a small portion of my mother's gorgeous singing voice means everything to me.

Since Jordan thought the lamb was actually Mom, and I’m a firm believer that “Nana Lisa” had a big hand in protecting Elise during her early arrival, I asked Elise’s nurses what happens when they press play, now that the lamb sits in the corner of Elise’s crib. How does Elise react? They said it is amazing to watch Elise as the lamb plays. If she’s crying, she will get very quiet and calm. If she has low oxygen numbers, she will bring them up to normal range (88-95%), and even sometimes she will bring her numbers up to higher percentages than what she needs (95-100%; what we call high satting). One nurse told me that when the singing stopped, Elise started crying. The nurse pressed play a second time and Elise became quiet all over again. I can’t begin to describe how much this warmed my heart.

Earlier in the day...asleep on Momma's chest

Tonight as I left, I asked the nurse, through big momma tears, to play the lamb a couple of times for her. I can’t wait for the day that I can sing to her in the comfort of our own home. Until that day, the lamb will help both of us. Elise can fall asleep and I can eventually make it to the car and head home.

Now Momma and Daddy must go to sleep…goodnight.

G & J & E 

Thursday, April 12, 2012

A Mother's Worry Never Ends

Elise has had a rough couple of days. It started with Tuesday and my last blog post. Then came Wednesday when she continued to have several brady episodes and nine episodes on Wednesday night to be exact. On Wednesday, the doctors decided to do a full work up on Elise for possible infection. As of today (Thursday) labs are starting to come back saying NO infection. Whew! They did go ahead and start her on antibiotics as a precautionary measure. My heart broke when I learned they had to put her IV in her little head. Her arms and legs were hard sticks and they feared she might pull it out, now that she is bigger and moving around more. What a trooper! If all lab work comes back negative, they will discontinue the antibiotics in 48 hours. As I've said before, the professional team in the NICU is outstanding, and they never want to miss anything that might be going on besides the obvious. We learned today that Elise’s team of neonatologists were grilling Dr. Pyle, her neo on record this week. Have you tried this? What about this? Of course all the neonatologists round early in the morning and discuss their babies together. Three of Elise’s neo’s stopped by the bedside today to check on her and just simply say hello to us. Dr. Pyle came by three different times to have conversations about Elise. We love the teamwork, and we are in constant awe of the professionalism and love they show us. Even one of Elise’s nurses and two of the neonatologists got in a fun argument of claiming Elise: She’s my baby! No, she will always be mine! Hearing this warmed our hearts.

The obvious problem for Elise is reflux right now. She was doing great with bottles last week, but as with most preemies, reflux has entered her little world and she doesn't like it one bit. Who would? Lately, when the nurses suction her nose, they pull up breast milk. That is one leading sign that the reflux is getting worse. Before today, the doctors wanted to try putting her feeds on a continuous pump. Meaning, she gets 9 mLs every hour and the pump never stops. They started the continuous pump yesterday, but since she continued to brady throughout yesterday and last night, they decided that the continuous feedings weren't doing the trick alone...Elise needed more support. 

Today, we met with Dr. Pyle and he thinks Elise needs to start on the medicine Prilosec. The other thing he is considering is putting her feeding tube farther down (into her small intestines) rather than in her stomach where it is now. By placing the tube in her small intestines, reflux will definitely minimize, and hopefully the medicine will also help. 

We can certainly tell Elise is uncomfortable lately. She grimaces many times and doesn't like to be moved around very much. We also know that the bradys are not comfortable to go through and must tire her out quickly. It was hard to be away from her yesterday when I kept calling the nurses, only to find out more bradys were being written down on her report. We both couldn't wait to see her today. Dad gave me the first holding round and I think that calmed both Elise and me. She immediately started high satting and got very comfortable while snuggling on my chest. Although I wanted to see the doctor right away, Elise's snuggling made some of my worry fade away. 

When Dr. Pyle came by again, he saw how comfortable Elise was on my chest and told me that he thought Elise should try some non-nutrient sucking today (exploring with breastfeeding). We scheduled the appointment with lactation to come by and coach me through it. As soon as they arrived and I got all ready, Elise brady'd and needed stimulation. Sometimes Elise can bring up her heart rate and oxygen without 'help' from the nurse or one of us. If she can't, we have to give her stimulation at times. Stimulation is usually rubbing Elise's back and sides to try to get her to take deep breaths. We also tap/pinch her feet until her blue color disappears and her rosy pink color comes back. We also watch the monitors closely to make sure her numbers are back where they need to be. This is definitely not something I've grown to love. My heart breaks every time I have to do it. However, I have gotten better with staying calm because I know that is what is best for Miss BLUEberry Muffin (G and I agree her latest nickname is quite fitting). 

If Elise’s several bradys weren’t enough worrisome news over the last couple of days, the eye doctor came by the bedside for his bi-monthly check-up today. In order to get prepared for the eye doctor, Elise got a series of eye drops and then he puts a huge contraption on her face to force her eyes open. After he leaves, she is fussy and her eyes are red and swollen for a few hours. It was the last thing I wanted her to go through today, but nonetheless, she was on the schedule to be seen.

For the last three appointments with the eye doctor, he saw no signs of ROP (Retinopathy of Prematurity) in Elise’s eyes. We rejoiced with this good news in earlier blogs. Ever since the first appointment, the eye doctor did say there was always a slight chance signs for ROP could become visible before Elise is considered a full-term baby. Today when he examined her, he unfortunately saw a mild case of ROP. He said he is not envisioning surgery now or in the near future, but he definitely wants to follow her case more closely now. He now plans to see her weekly instead of every two weeks.

As you can presume, my mind has worried a lot lately. Elise was having such strong/good days with finally getting off the CPAP, taking bottles, and transitioning into her big girl bed. It was all looking up. Not to mention, we are probably in our last month of the NICU. Not that things are looking down now, but whenever there are bumps in the road, it makes you reflect on what is going wrong (and many women like myself tend to WORRY when we don’t feel like we can provide an immediate fix to the problems). 

I just left my role as a worrying daughter. I worried that my mom was getting the right treatment for her lung disease. I worried she was eating enough living by herself. Was she really putting down that glass of chardonnay and drinking the V8 juice I bought her from the store, or was she fibbing to her daughter?? ha! I worried when she would sleep at night and when she would feel the need to sleep all day long. Why was she not having any energy? Was she getting sicker? 

Now I have entered my role as a worrying mother....the role my mother just left. She is now up in Heaven where she can look down upon her children and granddaughter and know that things are going to be ok. Those of us still on Earth don't get that privilege until we meet up with our loved ones in Heaven. For now, we remain here on Earth to worry or anticipate the unknowns. Of course, we like to say we cast our worries on God and let the big guy handle them, but I'm as guilty as the next person...I still hold onto some of the worry even after all the prayers and talks with God. 

I understand worrying is part of life. Some people can handle it better than others. I have been one of those people who tend to OVER worry about things going on in my life. At least I admit it, right?? Grant is always wonderful and correct to remind me, "Honey, it hasn't even happened yet; let's not worry about the what ifs right now." However, I think there is a difference between men and women. Men have this beautiful trait of compartmentalizing worrisome issues in their lives. Women throw everything into one big heap in their brains and take all of it on at the same time. Ladies, how many times have you been asked by someone, "What wrong?"...and you don't know where to begin??? 

Worrying doesn't always have a negative light. Many times women worry about positive things too.  I found myself asking the question today, Will I ever stop worrying about Elise?" When she gets into school? No. Grades. Right teacher for her. Behavior in school. Making friends. When she goes off to college? Heck no. Independence! When she marries? Well, probably not. Did she find the right husband (hopefully just like her daddy). When she has her own children? Oh no, because they will be my grandchildren. Sounds like the worrying just changes during the different phases of our lives. It never really ends. 


After spending a somewhat tense day in the NICU, G and I headed to dinner. It seems as though God gives us a great ‘night cap’ when He knows we need it. We went back for Elise’s 8:00 hands on time after dinner. It was the first time all day that she had both eyes wide open! We were loving on her and snapping pictures as usual, when Karrie, Elise’s favorite night nurse, asked us if we’d like to try non-nutrient sucking. I first said no, remembering how it went earlier today and not wanting to ‘push’ Elise. Then Grant reminded me that her eyes were wide open and she seemed very happy. “Ok, let’s give it a shot,” I thought.

I just love staring up at my daddy as he snuggles me close!

Elise never ceases to amaze us! She latched on right away and started sucking. It was exactly what this Momma needed…a little love from her lady! She never brady’d and she kept her sats at high levels the entire time. After exploring, Elise got held by her daddy as he rocked her fast asleep.

Don't worry mommy... I'm just dreaming away!

A mother's worry never ends. Or shall I say, "A mother's love never ends." We worry because we love so very much. The love I have for Elise is indescribable… even if she is a blueberry muffin at times. 

Sweet Dreams,
G & J & E

Tuesday, April 10, 2012

All Days Can't Be Glorious...

...and today wasn't a glorious day. I traveled to the NICU solo, while G stayed back and worked. I found myself irritable the minute I got on the road. Slow trucks, construction, slow trucks, and slow trucks...did I say slow trucks?? Ahhh needless to say, it wasn't a pleasant drive to Indianapolis.

When I finally arrived, little lady was doing great. She took 18 mLs of a bottle for Gretchen, her nurse, at her morning feed. We discussed giving her another try at the bottle at her next feed, but then we discussed that she might be ready to explore around with breastfeeding! I got my gown and gloves on, anticipating a great holding afternoon with our little lady.

We did have a great afternoon for 45 minutes. I held her skin to skin (my favorite position) and kissed her forehead while rocking her to sleep. Pretty soon, it was time for her next feeding. Since she took 18 mL's for Gretchen, I was hoping she would take plenty from her Momma too.

Unfortunately, the next 2 hours were spent keeping Elise from having a blue face and purple lips. She decided to have frequent Brady sessions (dropping her heart rate- which then causes her oxygen to plummet) to the point that she needed stimulation from us to get her heart rate back where it needed to be.  As soon as we would get her color back to a nice rosy pink, she would turn blue and the monitors would go crazy all over again.

If you've ever seen your baby turn blue, it's not a pretty sight. If you've ever seen your precious baby turn blue numerous times in 2 hours, it wears on the soul... especially this Momma's soul. You feel helpless and you desperately try to fix whatever the problem might be. After Elise took 5 mLs from me in between all her bradys, we gave up on the bottle and decided to put the remaining milk down her feeding tube and let her lay comfortably in her crib. Questions began to consume my mind as to why she was having such an 'off' day.

As we got her situated in her crib, I couldn't help but rub her back softly while a few tears trickled down my cheeks. You could tell the several brady episodes had worn her out. Her eyes were getting heavy as I saw the milk begin to travel down her feeding tube.

The wonderful thing about the NICU professionals is that they can sense when the Mommas are hurting. Gretchen got me some tissues and we talked through the afternoon and why she thought Elise might be having several bradys. She quietly left to update Dr. Pyle (one of our favs) who had just been to the bedside during the fabulous 45 minutes that I held Elise before her feeding. He was nice enough to come right over to the bedside a second time.

Dr. Pyle thinks Elise is struggling with reflux issues. I learned today that all babies have a degree of reflux. Some have very little, and don't seem to struggle. However, many preemies tend to struggle. Dr. Pyle wants to watch and wait right now, instead of giving medicine. He is certainly a very active/agressive neonatologist, but if Elise doesn't need medicine, that would be one thing we don't have to add to her list. Dr. Pyle did say that the several dips in heart rate could also mean that she is getting sicker, but he believes her chances of getting sicker right now are low. If she continues to have brady episodes overnight, then they will do a full work-up on her to determine what has gotten into her system.

Right now, Elise's milk goes through her feeding tube over one hour of time. Dr. Pyle said they would probably increase that time to 90 minutes to hopefully prevent some of her reflux problems. Once her reflux issues gets better, everyone is hopeful her bradys will get better. Dr. Pyle assured me that she will not go home on a feeding tube nor will she brady when she is home. I will get less dependent on the monitor and be able to get all my cues from her. His comforting words were, "We will get her ready for you, don't you worry. She is still suppose to be inside you for another five and a half weeks." 

After Dr. Pyle sat down and chatted with me, I felt stronger leaving the NICU and I made the trek back home. As soon as I got to the car, I gave poor G the 'weepy wife phone call' while he was at work. Grant found some other online parent blogs and it looks like preemies around the 34-35 week mark (Elise is 35 weeks this Friday), tend to brady more and struggle with reflux due to the greater volume of milk and higher amount of calories. This was comforting to hear. We hope Elise's day can be chalked up to reflux and nothing more serious (although reflux is not a petty issue).

On my drive home, I thought long and hard about our journey thus far. Elise has already spoiled us as a family. She is so strong and has dodged many, many NICU bullets, so when we do come across a bump in the road, it's hard to swallow at times. As NICU parents, you are always looking over your shoulder for that big bump...hoping it never comes, but knowing that it could. Whenever you've had an unsettling day in the NICU, it's hard to leave without being emotionally drained and finding yourself thinking of the worst. However, sometimes it's good to have a ninety minute drive home-- plenty of thinking time and many minutes to try to get yourself out of a bummed mood.

All NICU days can't be glorious...just like all days of parenting. I know once Elise gets home we will have our rough days, similar to today. God is always preparing us for our futures! Just like teaching for me...we had our fair share of glorious days in room 410 at Jackson Elementary, but we certainly had days that were far from glorious. It's life. All I can say is...tomorrow is a new day. This rough day shall pass and be no more when I wake up tomorrow.

I sure am glorious. 

G & J & E

Sunday, April 8, 2012

Our Little Peep's First Easter

Miss Elise has had quite the historic first Easter! It started with her fashionable photo shoot Saturday night (orchestrated by her fabulous night nurse Karrie), which quickly became a series of poses-- one cuter than the next…

Thank you Schneck PICC nurses for my pretty Easter dress!

A-Tiskit, A-Tasket, an Elise in a basket!

WHAT!? Am I being cute again?

Don't forget that I'm TWO MONTHS old today!

I can't work under these conditions-- I'm just gonna bury my head in the basket!

Following a grueling photo session, our little fashionista was laid to rest for the night with her parents taking a trek back to Seymour for church in the morning. Much to our surprise, it appears that our 3 lb 3 oz little caterpillar was ready to emerge from her isolate cocoon and land herself in a big girl crib early Easter morning-- Karrie sent us the photo evidence prior to us turning in for the night. It's hard to go to sleep when you get such good news that makes your heart melt. For us, Easter Eve was much like Christmas Eve with all the excitement of the new changes with our little peep.

After our church's Easter service, we headed back up to see Miss Elise. We are finding ourselves making many back-to-back trips to the NICU, but loving every minute of it. The drive is almost entirely interstate and very easy to handle when it's traveled on non-rush hour times. When we are able to go together and chat about our day with little lady, it isn't as lonely or boring as making the drive alone.

When we arrived this afternoon, Daddy got to feed her at 2:30 and she took a whopping 26 mLs (almost one ounce)! The largest amount she had taken up until today was 11 mLs. Needless to say, after her big adventure with the bottle, she was out like a light for the remainder of the afternoon. Regardless, I couldn't stand for her to go back to her crib and sleep. Daddy passed her to me and I held her for the next 3 hours. A little bunny snuggled on my chest…I couldn't have asked for a better Easter gift!

Whew! I can't believe I ate the WHOLE THING!
The doctor today started the weaning process of the vapotherm. She is now on 2.5 liters; down from 3 liters. They will wean her by half liters until she is around one liter. Then, the doctors will transition her to regular nasal cannula. She will look the same (same contraption), but she will get less flow with the regular nasal cannula verses the vapotherm.

When we returned to the NICU this evening after shift change, we gave her a bath and changed her into a cute preemie outfit…still much too big, but still entirely too precious!

Yes... I am THAT cute!

And now all tucked in for the night...

Boy, it is hard to go home at night after these wonderful days!  We are beginning to feel the 'home stretch' sneaking up on us. Again, everything takes patience. Elise is certainly not ready to be away from oxygen, monitors, nurses, and doctors quite yet; but she is making great strides towards weaning herself. Seeing her grow into a beautiful newborn baby brings tears to our eyes (happy tears, of course). We have been riding an incredible journey of highs and lows since February, but we are starting to realize that God had (and still has) a plan with our journey…and it is possibly to make us an intensely bonded family of three.

He rose for all of us,
G & J & E