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

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 do...it 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

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 

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 www.rosenberryrooms.com 

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 

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 out....how 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." 

YUM! 

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 

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.

LOVE!

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