Friday, March 30, 2012

Celebrating with a Realistic Frame of Mind

We had a wonderful day in the NICU yesterday! I must say, I wasn't looking forward to the 'gown and glove' policy. More than anything, I was worried with how it might make me feel. "Normal" had just started approaching us within the last couple of weeks, and I hated for a silly gown and a pair of gloves to change that.

When we arrived, Donna (Elise's nurse), showed us what we could/couldn't do based on the new MRSA guidelines. She did inform me that once Elise gets ready to breastfeed, I will need to wear gloves while breastfeeding her. That seemed quite ridiculous to me. My child can face plant herself into my chest, but I need to wear gloves??? Ahhh hospital policies. Don't get me started.

Regardless of the craziness of the new policy, we rolled with it. Both of us had great snuggle time with Miss E and she gained a WHOPPING 95 grams...which puts her at 2 lbs. 13 oz! The nurse did tell us to not be alarmed if she loses a little tonight since gaining 95 seemed extreme for one day! Elise's average is to gain around 20 grams per day. However, gaining 95 grams is definitely more Raynor/Olsen style!

Her foot is the length of my pinky finger


Elise was also moved from CPAP of 5 to CPAP of 4. Next step will be to nasal cannula! Dr. Maylock told us that the Easter bunny might just bring nasal cannula for Elise's first Easter basket. We simply cannot wait! I am so ready to see her head...seems crazy, I know, but I haven't seen her head (and really the majority of her face) since she went on CPAP two weeks ago today. It will also be a pleasure to not see Elise with huge, scrunched up nostrils. Oh the lovely CPAP. We will be thrilled to say goodbye to the device when the time arrives.

We certainly aren't out of the NICU woods yet, but we are starting to see some much appreciated light. Like we've said before, Elise has dodged many NICU bullets. That doesn't go to say we haven't had our worrisome days...we certainly have! But Elise has had her guardian angel, Nana Lisa, working overtime for her. For example, we saw the eye doctor yesterday. Elise is now going to see him once every two weeks instead of once a week because her eyes are right on track. Elise also saw PT and OT yesterday. She is moving and acting exactly like a 33 weeker. Therefore, they are only going to see her one to two times a week instead of daily. Can you say miracle baby? Yeah! Odds were stacked against us when we started down this road in February. Now we find ourselves being able to relax slightly and count our many blessings rather than worry about what's to come.

Unfortunately, the NICU roller coaster is hitting other families around Elise's area in the NICU. We've made friends with Miss Olivia's parents who are across the way from Elise. Olivia was a twin, but sadly her brother passed away 3 hours after birth. The twins were delivered at 24 weeks and Olivia is 11 weeks older than Elise. Olivia has had a lot thrown at her since her very early birth. We don't know all the details, because sometimes we hesitate to ask. Many things are kept private among the NICU families. Voices are low and many times kleenex boxes are past back and forth not knowing what exactly is going on. Whenever I see Olivia's mother crying, I know it hasn't been a good day. I'm sure Olivia's parents feel the same way when they see our tears. We try to rejoice together during the happy moments, but give each other the 'I'm sorry' look and privacy when things aren't going so well.

I was so happy for Olivia and her family when Olivia's mommy told me yesterday they were discussing going home next week. Olivia's mother was soooo thrilled! Her smile was HUGE- as I'm sure mine will be the day when we start discussing the 'going home' process.

It wasn't 4 hours later that Olivia was seen by the eye doctor (the eye doc had just left us and had given us our good news). Olivia had an eye surgery done at St. V's a few weeks ago and it went very well. I don't think the parents expected the eye doctor to tell them that Olivia's retinas were detached and she needed emergency surgery in Chicago. That wasn't the news they wanted after being excited to talk about going home, but that was the news they received, unfortunately. By 5:00, Olivia was picked up by the transport team and shipped off to Chicago. Olivia's parents were right behind in their car.

My heart absolutely broke for Olivia's parents. They've grieved the loss of their son while their daughter has received so much medical work while in the NICU. They finally heard about the 'going home' process only to hear 4 hours later about an emergency eye surgery that needed to happen as soon as possible. The NICU is truly, TRULY a roller coaster.

We celebrate Elise's milestones in the NICU with a realistic frame of mind. We absolutely are thrilled with her progress! However, we know of the ugly roller coaster that unfortunately, always lurks in the background. I don't think we'll ever take our first deep breath until we are home. Maybe we never will (especially being first time parents!)

The best part of yesterday? Karrie, Elise's favorite night nurse, knew how I felt about the 'gown and glove' policy. I had talked to her quite a bit about feeling deflated that I wouldn't be able to touch Elise with my own bare hands. Right after we put Elise back in her isolette for the night, Karrie whispered, "take your gloves off and love on your girl." I couldn't get my right hand glove off before I just started to kiss all over her teeny hands! Loved this time. Thank you Miss Karrie!


Love, Love, Love!

Goodnight Mom and Dad! 

Tuesday, March 27, 2012

Bonding Through Gowns and Gloves

For the past few days I have started to experience this strong urge to bring Elise home. Maybe because today happens to be the 48th day in the NICU. I'm ready for tomorrow to be the 1st day home. However, we know she still has quite a few more days in the NICU before she is ours to take home. Right now, she is 2 pounds 9 ounces. She needs to grow to at least 4 pounds so the smallest car seat can carry her home. She will also need to be off breathing apparatuses such as the CPAP. She continues to do well on the CPAP, but still very much needs it to keep those lungs open and working. All of this tells me one thing: the NICU still needs her. 


I've spent the last few days pondering why I have this "urge" all of a sudden. A couple of reasons pop to mind:
1). We have just recently been able to dress Elise in preemie clothes. Even though many preemie clothes are still too big for her, anytime a baby is put in a cute outfit, life becomes more real, as we like to say. She's no longer a baby in a diaper with wires all around. She is now a baby, in a diaper, with some wires, AND an adorable outfit on! 


2). Holding time is happening much more frequently now that we are almost 50 days into our stay. At least once a day (if not twice) do the nurses help us get Elise out of her isolette and we enjoy rocking her for 1-3 hours, depending on her schedule and tolerance level. 


3). Maybe because this urge is normal! Meaning, there is no reason I am just now feeling it, other than we are slowly coming out of the shock of our world turning upside down and welcoming Elise 4 months early.


This urge to bring her home is bittersweet, as with many things about a NICU stay. I now feel the urge to spend everyday in the NICU versus my every other day schedule I started in the beginning of our journey (G and I thought this may happen). I've held off so far driving everyday because I know it is not the healthiest option for me to take. She also still needs her "no stimulation times" even though she can be held. If I'm there everyday, I will ache to hold her and stimulate the heck out of her! I can't get enough of her teeny tiny hands and feet....I could kiss them until they fall off! 


I find myself thinking of Elise one thousand times a day....that has never changed since her birth. I am also getting much more used to seeing 'NICU calling' come across my phone during the early afternoon hours. It's usually the doctor calling to give me the update for the day. For the last several days, Elise has received glowing updates from the doctors. We could say the roller coaster has been going in 'our direction' these last few days, until today when we took a slight turn in direction.... 


Today the doctor started with, "I have some not so good news first." It appears that Miss Elise tested positive for MRSA through a weekly routine nose swab. It has NOT turned into an infection, and we pray it doesn't, but the doctors are going to give her 5 days of an ointment through her nose and bottom to hopefully keep it from going into an infection. We pray that we do not have to go down the infection road again. Due to hospital policy, usually babies who test positive are moved to isolated rooms instead of staying in their usual decorated corners in the NICU. Fortunately for us, Elise is in the back of the NICU and the doctors declared that her spot was safe enough. 


MRSA is found in something like 1 out of 3 humans. Unless it turns into an infection, a person has no symptoms of even having MRSA. We are thankful that the hospital does the routine nose swabs and made us aware of Elise's positivity. If I were a parent of another NICU baby, I would want all precautions taken so that my baby stayed MRSA free. However, it is heartbreaking to know that we will have to wear gowns and gloves whenever we are in contact with Elise. Changing her diaper, feeding her, and even holding her. At first I thought the 'gown and glove' policy was just for the 5 days until they could swab again and hopefully find Elise to be MRSA free. However, they don't swab again because their policy is: 'once you a MRSA positive, you are MRSA positive.' Therefore, hospital 'gown and glove' policy stays in effect for the entire length of the NICU stay. I'll be honest and say when I heard this, I didn't think about the safety of the other babies in the NICU. I only thought about how I'll never get to hold Elise without gloves on until we come home. Skin to skin is powerful and moving. Gloves to skin takes all of that away. 


We've worked so hard on this bonding process because we are on a very unique journey in our lives. Anything we can do to bond, we jump in with both feet and 100% eagerness. I don't want to be doom and gloom and say this is devastating. We will find a way to adapt to this, as we always do. It just makes me very sad. I love touching her skin and letting her touch mine. I sit for hours sometimes just touching her tiny fingers while she snoozes away. These gloves will certainly throw a kink in the bonding process and make me feel like a space momma in a bubble trying so hard to feel like a normal momma. 


Maybe a nurse will let me take a couple of fingers out of a glove when no 'policymakers' are looking: what happens in Elise's corner, stays in Elise's corner? 


Always trying to find a little humor along the way, 
J


P.S...the doctor did give us some good news during the phone call today. Elise is at 22% oxygen and looks, feels, and sounds great! She is tolerating her feedings wonderfully and continues to hate the CPAP. That's our girl! 

Sunday, March 25, 2012

Scrub-A-Dub-Dub

Prior to our trip up to the NICU today, I attended church for the first time in about two months. As we often stay overnight on the weekends when we visit, and I have worked the other Sundays, this has been my first opportunity to finally get back and see our church family. It was very nice to get back, and it was even more wonderful how much support and love our church family has for us and our Elise. It was an uplifting start to our day!

We arrived in the NICU today and were greeted by Gretchen, one of Elise's primary daytime nurses.  She updated us to the fact that Elise was doing quite well, although she had managed to pry off her CPAP and blow it at her eyes for several moments, and would be ready whenever we liked for her first bath!  Similar to diaper changes, I can't say I usually take part in any of the bathing of the little ones under my care.  Although I was very excited that Elise would be able to get her first bath (really more of a spit bath), I relinquished this honor to her mommy so that I could get pictures and video of this exciting event.


What are you guys planning on doing with that tub of water?

OH NO!  I see where this is going...

Whew! All washed and diapered back up.

Following Elise's first cleansing, the proud father of the squeaky clean little girl was very happy to be able to hold her for his longest period yet... A little over 1 1/2 hours!  I still have yet to hold her as long as her mother, but I find that Elise seems to handle her mother's gentle touch a little better than her father's... I'm sure that's a temporary issue and doesn't really amount to anything ;-)

One happy and beaming Papa!
We had a long but very beautiful day with our tiny treasure.  She continues to thrive on the CPAP-- even if she hates it and continually tries to escape out of it.  She tolerates being held quite well, and the nurses have commented that this is a good sign.  Her Neonatologist today felt that she will be able to wean again soon on the CPAP, and that the only current concern is that the hat she wears for device seems to be making her head circumference a little below par-- but she will catch up.  Also, we found that our little girl is continuing to "pack on the grams" and has gotten herself up to 2 lbs 8 oz with the help of her mommy's breast milk and fortifiers.  We continue to hope that she sails as well as she has and quickly reaches the goal of 4 lbs so we can get our little angel home!

Nothing better after a long day than a kiss from my mommy!

To the end of a long but wonderful day,

G




Saturday, March 24, 2012

Underway!

Today I traveled to the NICU solo while Daddy G stayed back and worked. As soon as I got to the NICU, Gretchen, Elise's nurse, asked if I wanted to hold her. Why of course! Gretchen got Elise all cozy in my arms, made sure Elise's numbers were stable, and then gave us some privacy. We were having great mother/daughter bonding time until she started to cry all of a sudden. I have to be honest, my gut reaction was to yell for Gretchen and "give her back." Part of me still feels like the NICU "owns" Elise in a lot of ways because there are still so many things about Elise that I do not know how to handle. Adjusting her CPAP and turning up/down her oxygen are just to name two things. There are plenty more things to add to that list. However, I told myself....YOU are Elise's mother. YOU figure out why she is crying. YOU can do this. Of course at this point, Elise's cry is only louder and her face is becoming red. She is starting to go from her peaceful snuggle to a mad squirm. I try slightly bouncing her in my arms, but fear the CPAP might pop out of her nostrils. Bouncing didn't work. I tried the pacifier next. She has become very good at sucking on the pacifier. That's a good sign for two reasons...it shows she is ready for a bottle soon AND it usually calms her down. However, this time, the pacifier didn't work. Crap, I am going to have to yell for Gretchen. Wait, maybe she is too warm?? Before Gretchen handed her to me, she swaddled Elise in fleece so she would stay warm. Elise has done an excellent job of keeping her internal temperature where it needs to be, but sometimes when she is held, she gets too warm when our body heat is added to the mix. I started to slowly undo her swaddle. Sure enough, ahhhhhh....Elise calmed right down.  It is such a wonderful feeling when you finally discover what your baby is needing, isn't it? I felt like I had successfully picked a needle out of a haystack. A baby haystack that is.

It would have been very easy for me to call the nurse during Elise's crying episode. After all, I am still somewhat timid with Elise because of all the medical concerns and not feeling like she is 100% ours. However, before we know it, she will be coming home with us. There will be no more CPAP and monitors everywhere, but no more nurses either.

I'm sure my feelings are normal for first time mommies, but it was interesting today recognizing how dependent I am on Elise's nurses. I have also discovered that the parent bonding process does not happen overnight. Elise and I need a sign that reads "under construction." I am 100% confident that we will have a very strong bond someday (just like my mother and me), but it will take time to get to know one another and get to a point that we can read each others' minds. I will wait patiently for that time to come, but until then, I can say we are underway!  

After our holding session, the doctor came by to say the CPAP is starting to be weaned! She started at 6 cm of pressure last Friday and they turned her down to 5cm today. Once she is weaned to approximately 4cm they will start looking at graduating from the CPAP to the nasal cannula. When I left Elise today, she was handling the less pressure quite well and needing about 27% oxygen.

See Momma...you already know I like my pacifier and I ALWAYS keep my hands by my face! :) 


********************

As we begin to dream about the day Elise comes home with us, her nursery has gone 'under construction'. If you remember a few post back, selecting the right shade of grey for the nursery walls took an entire day. I'm glad we finally found the right shade because I'm in love with her wall color!

I also love the blackboard for Miss E to make pretty pictures on someday (and write her spelling words 5x each before the test...ok, calm down Momma Teacher!) Coming soon...a wooden pink border around the blackboard and wacky painted 123s and ABCs in the corners.



We had our handyman Eric stop by tonight to start on some of the building projects. As I mentioned before, her closet didn't have any hardware for hanging clothes. Eric was able to put in some racks, shelves, and will eventually put in a toy box.



He installed the chandelier tonight as well. I love the idea of feminine lighting in a nursery. However, since  we both despise the word "princess" and everything about it, I wanted feminine but not 'princessy'. I think this chandelier fits a 'little lady' perfectly.

Ok, so no one was running to the store for the 3rd bulb before the picture. 


Eric also put together Elise's crib tonight! I know other mothers have mixed opinions about the attached changing table to the crib. I hope I like it! We shall see. I certainly love the crib! Grant and Uncle Shane can attest to how heavy it was going up our staircase!



Many more things to come in the nursery! It is so exciting to see it underway!

G & J & E


Thursday, March 22, 2012

Cross Your T's and Dot Your 'Eyes'!

Today Elise saw the ophthalmologist. He sees all preemies around 31 or 32 weeks to check their blood vessels to makes sure they are developing correctly. Many preemies have ROP (retinopathy of prematurity) where their blood vessels do not develop correctly due to receiving high amounts of oxygen post-birth and not being full term.

We were hoping Elise would do well with the exam today. When Elise was born, she only needed 39% oxygen and worked her way down from there. Of course during her PDA surgery she was at 100%, but once the surgery was over, she worked her way down again. Even when she needs extra boosts of oxygen during different parts of the day, the nurses don't have to turn her up greatly. She usually sits between 22-28% of oxygen.

The nurses told us that they usually advise parents to not watch the eye doctor perform his exam. He uses a head piece to hold the baby's eye lids open and the babies usually scream the entire time. We decided to take the nurse's advice and head to lunch during the exam.

Upon our return, the doctor left us his exam notes. Sure enough, Elise DID do very well today! He DID NOT find signs of ROP! He will follow up with Elise every Thursday because there is a faint chance that ROP could appear because her blood vessels are not fully developed until she is full term. However, for being a 32 weeker, her blood vessels are developing right on track! Once again, we thank God that another NICU bullet has been dodged by our miracle baby.

Our poor tiger...once we got back to the NICU after lunch we took turns holding her. We wanted to try to sneak a picture of her with her eyes open, but she was not opening them! Her eye lids were a little red and puffy...we could tell she had been through a battle while we enjoyed a nice outdoor lunch!

As for me, I had my 6 week post-birth appointment with Dr. Deaton today. My blood pressure is back to normal and my scar looks great. I still get some fluid retention in my ankles and my fingers. I find this to be especially true when I get heated, however, Dr. Deaton assured me that the swelling would continue to improve over time. I had a lot of swelling by the time I reached Dr. Deaton and it didn't come on over night, hence it won't come off over night. He also approved me to start dieting and increasing my exercise routines. Weight Watchers has a great program for nursing mothers. I started the plan Monday and feel great so far! I am being very careful so I don't see a decrease in my milk supply, but rather keep up my pumping schedule and lose some weight at the same time. Sadly, I'm not one of those women that can pump and the weight "falls off." The weight has never fallen off easily for me...so who am I kidding when I think sticking pumpers to udders would do the trick?!

Comedy aside, I am really ready to get this weight off. Like I posted very early on,  one of the ways I dealt with the loss of my mother was to take pity on myself and eat whatever I wanted. I "deserved" that fattening meal or that extra dessert because I was grieving a huge loss. Then I got pregnant and the eating only worsened. I am physically (and most importantly...emotionally) ready to get this weight off.

We also need to tell you..........drumroll please................ Elise is 2 pounds 6 ounces!! They are bumping up her extra calories in the milk to 26 calories tomorrow because she is handling the 25 calories so well. When the doctors and residents made their rounds today and stopped by Elise's bedside, the staff neonatologists decided to drill the residents with 1,000 + 1 questions about Elise and her medical journey...in front of us! I didn't mind it...it was like a mini classroom right by Elise's isolette. G tried to help out some of the poor residents that couldn't come up with quick answers for their attendings. Dr. Ben Saad (one of the attendings) said, "Don't give them an easy ride Dr. Olsen!"

We are so fortunate to be at an educational hospital that takes its training of future neonatologists so seriously. Besides feeling bad for the residents when they didn't know the answers right away (ha!), we felt so reassured that Elise is truly in wonderful hands at St. Vincent's NICU. These neonatologists have so much knowledge and we are forever grateful that Elise is here and thriving due to them!

Continuing to thrive!
G & J & E

Tuesday, March 20, 2012

You Will Get Better...You Will Get Stronger!



Up until now, I have not enjoyed reading books. I can find anything (and I mean anything) to pass the time rather than read. Most of the time, I am a classic In Touch and US Weekly reader so that I can catch up on all the latest celebrity gossip (and look at all the pictures). Reading books usually makes me very sleepy or I tend to think of anything else besides the story's plot. Terrible? Yes! Especially for a teacher!

Motherhood must change many things...not just sleep schedules and priorities in life...

Once I started making these NICU trips on my own, I knew I would need something to help pass the time. Elise would need to be in her isolette growing and I would need to do something besides staring at the walls or out the window. I do love my "trash mags" but there is truth in the statement, "once you've read one trash mag, you've read them all." I knew I would be spending quite a few days in the NICU. 

This took me to Barnes and Noble with G one afternoon {gasp}. When (and that's a big when) I read, I am usually drawn to biographies of famous people. Browsing the biography section, I came across Gabby, a biography about Gabrielle Giffords who was shot in the head at a congress event. The book was written by Gabby's devoted husband Mark Kelly.

What the heck, I bought the book and was hopeful I would follow along and not make a mental 'to do list' while reading...

...I started reading last week and only have a few pages left. As my mother used to say, "I can't put it down!" I've realized quite a few similarities between Gabby's story and our NICU experience. Mark was told by the surgeons, "Hope for the best, but expect the worst." This famous line was also told to us by Elise's doctors when she first arrived in February. NICU journey or brain surgery...both have roller coasters of highs and lows and unfortunately, you have to prepare yourself for the worst case scenarios many times. Elise has dodged many NICU bullets, but has certainly given us quite a few worrisome days between possible seizure activity the first night to a PDA surgery to an infection...all of this had her living on a ventilator for 34 days. 

In the biography, Gabby, this powerhouse couple, one a top dog NASA astronaut and the other a go-getter representative from Arizona, remained so strong and positive throughout  their entire journey. At one point when Gabby became very embarrassed and frustrated that she couldn't get to the bathroom in time and therefore, wet her pants, Mark was able to tell Gabby about the many times as an astronaut he had to wear a diaper during preparation for take off. He told her that 3 hours into orbit he would be wet from his socks, up his long johns, and all through his mid-section. "I didn't have a brain injury to blame my accident on." Mark was able to make Gabby laugh. I am a firm believer that laughter is sometimes the best medicine when life is so unstable.

This doesn't go to say Gabby and Mark didn't have their low points. They certainly did. At one point Gabby started to cry and wave her hands in front of her mouth. Mark finally figured out that Gabby was trying to express that she had words in her brain, but she couldn't get them to come out of her mouth. As a grown woman who remembers who she was before the accident, this experience must've been tough. However, Mark ran Gabby's recovery like a captain in the military.

When visitors came to Gabby's door, Mark had 3 rules:
1. You do not have to speak loudly, Gabby can hear you just fine.
2. Be patient with her.
3. No crying.

I want and hope we've carried out our journey with as much respect and positivity as Gabby and Mark had during their journey. We can certainly relate to the life "before the incident" and the life "after the incident." The "before" Jessica was a very energetic pregnant 4th grade teacher who worried more about her students than anything. She was dreaming of planning a nursery and bringing home an 8 lb. healthy baby girl in late May. That Jessica is now gone and replaced by a mother who is still coming to the realization she is not pregnant, but does have a baby girl...who just so happens to be 90 minutes away in what we like to call an "alternative womb." The "Jessica switch" happened in 6 days starting on Feb. 2nd. Gabby's switched happened even quicker. As devoted husbands, Grant and Mark had drastic changes in their lives, too. 

Grant and I even have similar rules as Mark and Gabby. Of course we use quiet voices in the NICU. We must be patient (very hard at times) and the no crying rule? Well, Daddy could pass that rule, but Momma could not. Although, my tears ARE becoming happier tears than sad tears as time continues to move forward.

Just like Gabby, Elise continues to make great strides. She is down to needing 22-24% of oxygen while on the CPAP. They will start to wean the CPAP pressure once she gets down close to room air (21% oxygen). Since the CPAP is so uncomfortable, we pray she isn't on it long. Friday will be one week. They also continue to bump up her calories in the milk to try to beef her up!

We've also been able to hold Elise much more often. We usually hold every day that we are in the NICU. Things like holding her and dressing her with cute preemie outfits make this new life of ours seem much more real.

In my Daddy's arms...



Happy Spring! 


As Mark said many times to Gabby, "You will get better. You will get stronger."

Elise continues to make great strides and we are so very thankful (and relieved). We look forward to watching her pack on the pounds (ok, ounces!) She's up to 2 lbs. 4 ozs...we are getting there! 

G & J & E

P.S....If you need a good book, pick up Gabby or borrow my copy. You will laugh and cry throughout. I always say "laughing and crying are good signs of a touching story...all emotions wrapped together."

Saturday, March 17, 2012

When Beauty Blossoms

A couple of days ago I posted about the nurses always commenting about Elise's beauty. I asked Elise's night nurse if nurses give all babies compliments or if the nurses were being sincere to Elise. As much as Karrie, the nurse, thought I was nuts, I felt the same about myself. As a teacher, I don't compliment parents unless it is warranted. Why would the nurses be any different? The more I ponder questioning the nurses, the more I pondered WHY I questioned them.

Two days later it hit me. Up until now, we haven't made Elise's beauty our top priority. What we have made as our top priority are the doctor's faces, the nurse's hands, and the monitor's numbers. When arriving in the NICU on most days, we get the update from the nurse before we ever lift the curtains of the isolette and coo at our little lady. Sadly, this has been our reality since February 8th.

When I finally caught on to so many nurses complimenting Elise's beauty, I a was honestly taken back. What do you mean? You aren't talking about her numbers or the machines she is hooked to or when the doctor is going to come speak to us? 

I came to realize I was being a medical mommy rather than a mommy. Now, I make it a point everyday to appreciate her beauty that is blossoming right before our eyes. Her cute nose. Her beautiful eyes and the excitement we get when she opens them for us. Oh, and her hair...it looks like it could have some curl to it. How fun will that be?? Mother and daughter curls.

It was so wonderful to get to hold her again today. G and I discussed that today might have been the best holding day yet because we got to cradle her and stare at her beautiful face. Don't get us wrong, the skin to skin is wonderful in its own right, but getting to stare at her face while watching her take her big girl breaths is beyond amazing. Today, I noticed for the first time she has teeny tiny eyelashes.




Before we left for home today, we stopped off at the NICU for our "night cap." I always feel so good leaving her on the nights Karrie has her. It's like leaving your child with the best (most skilled) babysitter ever! Of course Karrie brought Elise a little holiday treat.

Happy St. Patrick's Day!

P.S...We didn't tell Elise that she actually has a garter on her head. "if the garter fits, wear it?" (I think her father disagrees already). HA! What can I say? It was a dollar at Target.

G & J & E

Friday, March 16, 2012

Breathe, Little Lady, Breathe!

Our daughter is off the ventilator! Yipppeeee! She transitioned to CPAP around 10am today. She only had one apnea episode (not breathing), but did not have to be bagged to bring her sats back up. She immediately brought up her heart rate on her own and her nurse had to rub her sides a little and turn up her oxygen to stimulate her lungs. Her oxygen levels do vary greatly from low (60s/70s) to high (98-100), but the doctors said this is completely normal for a preemie who is new to CPAP. Once again, CPAP requires Elise to do all the breathing on her own. She does not have a vent taking breaths for her. So when/if she decides to not breathe, her oxygen levels will dip. Eventually, she will get the hang of this "breathing idea" and start to breathe continuously. Then, we will see her oxygen levels stay steady (great levels are anywhere between 88-95%). It is our prayer that she does well on CPAP this time (if you remember, she was on CPAP for 48 hours a week or so ago). She acts much stronger this time so we are hoping for the best!

Here am I on CPAP! No, I do not like it! ;-)


The doctors continue to play around with Elise's feedings, trying to get her to pack on the pounds. I learned today that Miss E should weigh approximately 3.5 pounds if her age (31 weeks) matched her weight. Unfortunately, she was small for her age when she came out of the womb. With her losing a few ounces before getting on a steady weight gain track, she is hanging out below the tenth percentile. The doctors are thinking that she may never catch up...meaning, she might be petite for her age throughout life. As we all know, this is certainly not as disturbing for ladies as it is for men! Petite girls are much easier than petite boys when it comes to buying clothes and even social issues in school. (P.S...I'm glad Carter's carries preemie clothing. Looks like Elise will need preemie outfits for quite a while after coming home).

Speaking of gaining weight-- when Elise is at a point in her NICU life that she is just eating and gaining weight, Columbus Regional Hospital offers a step-down NICU. If we request it (or lovely insurance says we must go), Elise would be ambulance transferred to Columbus. For those that don't know, Columbus Regional Hospital is 25 minutes away from Seymour vs. St. Vincent's being almost 90 minutes away. Of course right now, Elise is in no way ready for CRH, but it is something to contemplate for the future. Right now, my gut says no way. I'm getting very attached to these doctors and nurses and the care that Elise is getting at St. V's. There's a lot of power in the statement, "These nurses and doctors have been with Elise since the beginning." However, when Elise becomes stronger, I probably will too. Once she is in a crib and able to be fed by me, I will want to be with her everyday. A 25 minute commute is very enticing versus a 90 minute commute (with rush hour). Also, G could make a lot more trips to see Elise if she was just a short hop away. Now, he must take full days off of work to make the trip worthwhile. We are thankful we don't have to make this decision now, but we can ponder it for the future.

We hope and pray for a "quiet" night for our Little Lady and are excited to spend tomorrow with her!

G & J & E

P.S...exciting family news: We are adding another doctor to our family! Uncle Jordan just got accepted into IU School of Medicine's Neurology Residency Program. He graduates in May from IU Medical School and is one of SIX residents in IU's neurology program. 'Proud' can't begin to describe our feelings! Elise will always have doctors watching over her. This Momma is extremely grateful and can take a few bricks off her shoulders.

Thursday, March 15, 2012

"The More You Dress Up...

...the more fun you'll have." ~ Author Brian Molko

Rockin' the leggings from Aunt Suzi! 
Look at Little Lady playing 'dress up' with Nurse Karrie! Elise is bringing back the "baggy" style too! ha! Rather baggy than tight, right ladies?? The leggings will eventually fall into place. Until then, they are scrunchy (but adorable) sweatpants. 

Polka dot fun! --and someone keeps trying to pull her vent tape off! (notice the reinforced tape -ha!) 

Elise continues to have very good days in the NICU. It's the doctor's plan tomorrow (Friday) to remove her breathing tube and put Elise on CPAP. Elise has been making great strides on the ventilator this week (lowering her rates and breathing over the vent), so the doctors are pretty confident she is ready for CPAP. I think sometimes CPAP is just as hard on the parents as it is the preemie. Since Elise won't have a breathing tube while on CPAP, her cry and sneezes can be heard. Although her sneeze is precious to listen to, the cry is so bittersweet. We LOVE hearing her cry and knowing those lungs are working well, but there is very little we can do to help soothe her. She simply wants the CPAP off, and quite frankly, who wouldn't? It is our hope and prayer that CPAP will be for a few days rather than a few weeks. After CPAP, she will then transition to nasal cannula. Whoo-hoo! G and I have already discussed that when Elise is on nasal cannula she will definitely remind us (even more so) of Nana Lisa. Mom made nasal cannula look so stylish when she had to wear it 24/7. We will make sure her granddaughter is stylish too! 

Another big announcement................

Little Lady is over TWO POUNDS! It's official now! She weighs 925 grams which converts to 2 lbs 1 oz. The nurses and my preemie mentors say the next pound(s) will come even faster. When she was born she weighed 1 lb. 4.5 oz. After dropping to 1 lb. 3 oz. during the first 2 weeks, she then started a slow weight gain because she wasn't getting any milk...just the TPN (IV nutrition). Now that she is on milk every 3 hours with extra calories added each time, she will start to pack it on. I told the nurses that my pep talks to Elise about gaining weight seemed very foreign to me. I'm usually giving myself the opposite weight pep talks. Uncle Matt put it well, "Elise has no relatives that have trouble putting on weight, so once she comes home, she'll be well trained." We all can't wait to squeeze those chubby cheeks and thighs someday! 

Elise has also gone to "air mode" on her isolette meaning that she must make all of her body heat to keep her temperature up...the isolette no longer provides her with heat. The nurses say she is doing very well with this. Of course her stylish clothes only help her feel oh-so-good about herself! 

I've had two days in a row at home this week since G and I get to see Elise together tomorrow. I've realized that a 2 day stint at home is a little too long at this point for me. Of course I miss her every 'home' day, but today I missed her like crazy. I found myself drying her fleece blankets 2 or 3 times in the dryer because I felt like I was "doing something for her." Let's just say that her fleece is good and dry and already packed in the car. 

We are extremely excited to see her tomorrow!  

Praying for a great transition to CPAP tomorrow~
G & J & E 

Tuesday, March 13, 2012

Do Nurses Say That to All Babies?

Today G got a day off work so we took full advantage and spent all day with Little Lady (a big thanks to Dr. T and Dr. D for covering!)

Elise had a very good day! Last night, her ventilator tube was a little out of position so they took an X-ray and fixed the positioning. That seemed to help her, "I'm not gunna breathe" episodes. A little de-satting at times today (lowering her oxygen levels), but no bradys (low heart rate) or apnea (stop breathing) episodes! Doctors are still considering CPAP...probably by the end of the week she will transition. She is on very low vent settings currently, so it all depends on when Elise is ready to start doing all the breathing work on her own. Hopefully the time spent on CPAP is not long...most preemies do not like the CPAP. I can't say I blame them...who wants a space helmet on with 2 big tubes stuck up their noses?! 

We were so thrilled when Elise reached 2 pounds yesterday! I posted the good news right away on Facebook...too soon. Sure enough, as all preemies do, she decided to drop a few grams today. She is currently still 1 pound 15 ounces. No fear! We can't sweat the small stuff with an experience like ours. Very soon we will be able to make her 2 pound weight "blog official." Stay tuned! 

This momma got a nice 3 hour holding session with her girl today! Dad and I are taking turns, so if Elise behaves herself, daddy will get his turn
again on Friday. It is so wonderful to hold her. She truly is like a little baby kangaroo in her "pouch."



Momma's kangaroo! 

The beautiful hand-knit hat I wrote about in the last blog -- fits her teeny head perfectly! 


It was also nice to hear Elise's day nurse say that Elise's medicine list is getting quite small...yahoo! That's a beautiful thing considering she is less than 5 weeks old and not even 31 weeks adjusted. We pray this trend continues with our little tiger. She is now up to 15 ml's of milk fortified to 24 calories every 3 hours. She also gets a daily dose of vitamins every morning. She got her PICC removed today as well- so no more IV!

We enjoyed today coming to an end by having a nice dinner together and then heading back to the NICU to say goodnight to Elise. The thought was brought up at dinner that we have to sneak in all the date nights we can-- so true! After dinner, we got to share in 8:00 hands on time and give her kisses! (We call this our "night cap.") Before we left to head home, I asked Karrie (our favorite night nurse) if the nurses said such wonderful compliments to all babies like they do to Elise. We've noticed whenever a nurse (who doesnt have Elise as a patient) walks by Elise's isolette she always says, "awww what a gorgeous baby!" Of course we are biased as parents and think she is the cream of her crop, but I wanted to know if nurses said those things to all babies or they truly meant it just for Elise. I loved Karrie's response: "If I don't think a baby is cute, I'm not going to say anything! So those nurses truly mean it- Elise is beautiful!"

Makes a mommy and a daddy beam with pride! We certainly agree with the nurses!





Until next time,
G & J & E 

Sunday, March 11, 2012

Truly Blessed!

Today was very special for me. G and I hardly ever miss a Sunday at church, but with our new life now, of course we've missed quite a few Sundays and I've missed quite a few Wednesday night choir rehearsals.
I got the joy of returning to church today for the first time in 5 weeks. I have to say, I was a little nervous about being bombarded with questions and tackling them on my own without G by my side (he was on call at the hospital). However, I felt so welcomed back to "our 2nd family" that all my nerves quickly subsided. Nothing makes a person feel more appreciated than receiving a round of applause from the entire congregation after the pastor announced I was back. I also didn't realize how much I had missed singing. We Raynor gals don't go too long without breaking into song, so 5 weeks was a lengthy stretch for me. It felt so good to sing and be able to say THANK YOU to everyone who has prayed and sent cards.

We truly have been blessed by so many people....many people we do not even know, but they perhaps know us or have heard of our story. People have stopped us in grocery stores and at gas stations to tell us they are praying for our family. We feel as if an army is behind us. It means everything to us to have friends, family, and even complete strangers keeping our family in their prayers.

As I've said before, my writing is an outlet for me so that I sleep at night and have documentation of this journey for our family in the future. For many reasons, G and I have recently discussed about making the blog private (meaning only visible to closest friends and family). However, we always come to the same reason as to why we want this blog available to everyone. We want to pay it forward to others some day. If we can help another family going through a similar experience, by all means, let us.

We've already received several very touching emails from people who have been moved by our story. In turn, they have (and continue to) move us.

---I have had two women share with me their private struggles with postpartum depression for months or more. They have finally worked up the courage to seek medical attention after reading about our journey with Elise. I have such admiration for these women and their bravery.

---There is a group of 11th and 12th graders in Vermont who have been following our blog in a pre-med class filled with nurses and doctors of our future. They have discussions about Little Lady's progress and all her medical equipment. Coming from an educator myself, I LOVE this!

---Just yesterday I went to get the mail and found a Ziploc baggie with the teeniest hat inside. A family friend's daughter had read our story and made a hat for Elise. I have no idea how she got her head measurements because even the retail "preemie" hats are still too large. However, this homemade hat fits Elise's head perfectly. So touching.

I tell you these stories to tell you this: I know for certain we could not make it through this journey without the love and support from around the country; literally. When we receive an email about how our blog has affected someone else, it makes it a tiny bit easier to rise out of bed, put our feet on the ground, and say, "Let's do another day."

************************** 
Right now, the days are holding steady and putting smiles on our faces. 

Our Little Tiger continues to show improvement in the NICU! She is on very low vent settings and doing much of the "work" on her own, so the doctors are looking at re-trying CPAP early this week. Makes this momma nervous! BUT, she is one week older compared to the last time she gave CPAP a try. They also believe she did have an infection of some sort last week that caused her to tucker out and step back to the vent. She's been on a week of antibiotics and all her cultures have come back to say the infection is gone. She's also had some caffeine boosts and got a diuretic today to get any excess fluid off her lungs (she decided to make the night nurses work for their money-- she dropped her heart rate and oxygen last night 2-3 times for Miss Karrie and had to be bagged to come back up). Once the doctor gave her a diuretic today, she "behaved" herself.

Her feedings continue to go extremely well! She is up to 13 ml's of breast milk every 3 hours that they fortify (add extra calories) so she continues to gain weight. Speaking of weight, she is up to 1 pound 15 ounces. We are REALLY hoping for a 2 lb. party soon! Due to her weight gain (and blow outs- ha!) she has graduated to the preemie "big girl" diapers. Don't get me wrong, these are still teeny weeny diapers, but instead of fitting in the palm of my hand (her former diapers), they now fill my entire hand. It's progress!

Update on Elise's Ami: She is progressing quite beautifully at home after her open heart surgery. She has to walk around the house 30 minutes daily. Although she tuckers out just like her Elise, she is faithful about her walking. She is slowly getting her appetite back and it's been rumored that she craves McDonald's hot fudge sundaes -ha! This is so funny to G and I because Ami has been and continues to be so devoted to healthy eating. The doctors have told her to eat whatever she craves so that her appetite will come back. GO FOR IT AMI!

Things that are coming up for our Little Lady in the near future:

1). CPAP - and we pray it "sticks" this time
2). In the next 2-3 weeks, Elise will see an eye doctor for an initial eye exam. Many preemies sometimes struggle with vision issues and meet the eye doctor at a very young age!
3). Once she weighs 1,000 grams she gets to dress in her fun preemie clothes! Yeah! (she's 905 grams tonight).

We are praying for a week filled with positive news!
G & J & E


Saturday, March 10, 2012

Now It's Daddy's Turn

My first chance to hold my little darling Elise actually came last week, a little while after she was first held by her mommy.  Unfortunately, after a very good session with her mother, Elise was just tuckered out, and she wasn't able to be held more than a few minutes before she was whisked away from me back to the isolette.

I, like Jess, had waited so very long to hold Elise for the first time, and it was certainly much different than I expected.  Although I had worked in the NICU before during my residency, I really didn't hold or nurture the babies-- I left that to the nurses and families.  I really can't fully describe how wonderful and beautiful it was to get to nuzzle her small body up against my chest.  I also can't describe how truly small she feels-- much like a bird, kind of fluttering against your chest.  

I was very disappointed that my first experience to hold her was cut so short, and I also felt very powerless at the time as I saw her oxygen saturations and heart rate decrease and I really wasn't the one who was in charge of getting them under control.  Quite the opposite, I felt that my greedy desire to hold my daughter was causing her detriment as opposed to improving our bond.  It was a rough end to an otherwise tremendous day with her...






********************************************

Fast-forwarding to today, I definitely had some reservations about having a chance to hold Elise for a second time.  Despite my need as a father to hold my child in my arms, I kept envisioning her dropping her oxygen saturations and her heart rate like she did just last week.  It had been a week of ups and downs already.  She had managed to get on CPAP for that short period, but then things started to go sour between her breathing and possible infection.  She had several good days on the ventilator since then, but I just hoped that she would tolerate being held for longer as I really needed to feel as though I was bonding and building a relationship with my daughter.



As you can see from the below pictures... Today was a much, much better day!!!


Just this tiny creature pressed against you.. So warm, but so little...

Elise likes to tug daddy's forest of chest hair and tickle him ;-)

To many, many more experiences of holding my sweet daughter...

-G

Friday, March 9, 2012

Welcome to Holland

One of my preemie mentors stopped by the house today. It was so wonderful to bounce questions off of her AND meet her micro preemie who is now a beautiful 6 year old lady who is a reader in Kindergarten! This family had some of the same doctors Miss Elise currently has, so it truly felt like we were sharing in the same experience as we chatted today. My preemie mentor gave me excellent advice on every question I asked. Like I've said before, I completely trust my preemie mentors because after all..."they've been here and done this." 


After some chatting (really playing 20 questions...or more!), my preemie mentor handed me a poem. She said it was a beautiful description of life as a NICU mom and that I would cry reading it...she sure was right! I've typed the poem, "Welcome to Holland" by Emily Perl Kingsley so that all of you can revel in its beauty with me. 


Side note: when I read the word "disability" I take that to mean any child that has a special need at some point in his/her life. It does not have to mean a lifelong physical or mental disability. Prematurity isn't classified as a disability, but this poem rings completely true to our experience with Elise. 

Welcome To Holland
by: Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



In August 2011, we did not sign up for Holland. With Elise being our first child, I think our entire family was planning this fabulous trip to Italy with us. I've never seen my brothers so excited for something to happen in our family and Elise's Ami and Grande were beyond thrilled! Needless to say, all other family members were just as excited as we were. We planned a big gender reveal party for Dec. 23rd when we found out "It's a Girl!" I couldn't stop shopping online and became so excited when friends were asking to throw me baby showers. Italy was looking so inviting and we "had our bags packed." 


We landed in Holland at my "routine OB appt" on February 2, 2012. Questions filled our minds. Worry filled our minds. Flat out fear filled my mind. 


Fast forward to today. We are now in Holland. Do we miss Italy? Absolutely! Just like the poem reads, not having a full term pregnancy and enjoying all my showers with a big belly bump and anticipating the May 20th arrival of Miss Elise is a loss of a very big dream. I've stated before that I feel I got cheated out of a full-term pregnancy. I loved being pregnant with Elise and look forward to the day when I can carry a second child for our family. Hopefully we will land in Italy that time. 


Until then, we are going to appreciate Holland for all of its beauty and accept the "small gifts" Holland has to offer (or shall we say preemie gifts?). We like to look at this time with Elise as time we would not have had with her if she was still in the womb. Of course, being in the womb would be the best scenario if it was healthy for both Elise and me, but we are not going to dwell on that because she is here now and my health has gone from 'scary' to 'normal.' She will technically be a "newborn" towards the end of May. Therefore, all this time before May is extra time to bond and love, love, love. 


Before my preemie mentor left today, her daughter had a present for me. It's a small vase that says, "A tulip is a treasure." Simply beautiful. I cannot wait to show this vase to Elise someday and let her know the story behind it: Elise's 6 year old preemie mentor gave it to her :) 




Come to think of it...tulips are popping up early everywhere you look...whether they are coming from the ground due to our extremely mild winter or coming from Heaven above to a family who is making peace with the captain of the plane and falling in love with Holland. 


our little tulip from Heaven!


Visiting with our tulip tomorrow,
G & J & E

Thursday, March 8, 2012

Washing Away the Funk

If you are wondering if I've been in a funk lately, your assumptions would be true. Monday's issue with Elise de-satting and no nurses around and Tuesday's step backwards from the CPAP to the vent left me feeling quite blue all day Wednesday. Even though my blog posts have been pretty positive in the past, I have certainly been blue at different times throughout this whole process. However, I can often shake my funk by at least the end of the day, if not within a couple of hours. This last funk lasted 3 long days.

To be brutally honest, I scared myself with this last funk. When I woke up this morning (Thursday), I was not excited about going to the NICU. I just wanted to pull the covers over my head and sleep the day away. Usually I can't wait to get up to see Elise, but today was different. I started to make the weather my excuse as to why I needed to stay home (very rainy and gray today). I started to worry I might get in a car accident on the way up there or I might get bad news delivered while I was driving (what happened on Tuesday). Negative thoughts were filling my mind the second I woke up. I guess my funk wasn't washed away with some sleep. 

Something finally got me out of bed and into the shower. My steps were heavy and my heart seemed low in my chest. I still didn't want to get ready, but I finally did. On the way up to Indianapolis I drove through horrible rain storms (the kind of storms that make you want to pull off the interstate, but you know that wouldn't be your safest move). However, I finally made it to the NICU in one piece, emotionally and physically. 

Have you ever hated how you feel inside, you try to shake it, but you just can't? Anything you try to do seems to land you only deeper into your funk? That was me from Monday until today. All day yesterday I tried to shake my negative feelings. Don't get me wrong, I'm not Positive Patty all the time, but feeling negative is a hell of a lot harder for me than feeling positive. I love having good ol' cries if it makes me feel better, but to cry and cry all day long? That hurts. Again, all of this scared me, and I started to believe something more was wrong...or getting ready to go wrong.  

Many of you might be thinking about PPD (Postpartum Depression). I would be lying if I said it had not crossed my mind this week. Grant and I have had discussions about it, especially since February 8th came as such a whirlwind to both of us. Mommies of healthy 8 lb. babies that go home right away sometimes get PPD, so it would not be uncommon for me to have it at some point after all the trauma my mind and body has been through. I told Grant from the beginning, "Don't ever hesitate to get me help." Fortunately for me, I think my awareness of my different moods and being able to bring myself out of my "funks" leaves me to believe I am not at the PPD stage.  When, and if I do, I will not be bashful to ask for help and neither will G. I want to be healthy for my husband, my daughter, and most importantly, myself.  

Once I got through the horrible rainstorms and to the NICU, I immediately pulled up a chair to Elise's isolette and started talking away. Gretchen, one of Elise's primary nurses, told me that Elise was being a little sassy and raising her heart rate at times. She told me to reach my hands inside the isolette and try to comfort her. Maybe this would lower her heart rate. Just 2 days ago I was desperate to feel needed by Elise. As I reached my hands into the isolette, I kept one eye on Elise and one eye on the monitor. Sure enough, her heart rate went from the high 180s (too high for her) down to 145-150 (perfect for her). This was EXACTLY what she needed AND exactly what I needed. Funk ---> GONE. 

I felt very needed today. I got to lower her heart rate 3 times when she was getting agitated! Yes, I changed the diaper and took the temperature, but reaching in and getting to soothe my daughter... soothed me in turn. 

And guess what? Time does fly...even in the NICU! Miss Elise Diane is ONE MONTH old today! Here's to a much smoother time in the NICU than the first month. We love her teeny weeny 1 lb. 14 oz body to a gazillion pieces! 

Thank you Nurse Karrie for making me feel special tonight! I really do love you even though my face doesn't show it! IT'S MY PARTY AND I'LL CRY IF I WANT TO! :)
Goodnight,
G & J & E

Wednesday, March 7, 2012

Unexpected Bond

In less than a month, I've made unexpected bonds with mothers of former micro preemies. They had 1 lb. 5 oz. babies that came weeks too early just like Elise. Now they have grade school children who you would be shocked to know once laid in an isolette and on a ventilator for the first part of their lives. One mother has a National Honor Society daughter and one mother has a 3 year old daughter that she can't keep up with in life.

These mothers have reached out to me when I needed them the most. Their words connected (and still connect) with me at such a deep level because they know what shoes I'm filling and exactly what roller coaster I'm on. I can trust their comments such as, "It will get better," or "Once Elise hits 2 or 3 years old, you will see little to no remains of the prematurity."

After writing last night's post, both of my "preemie mentors" as I like to call them, wrote me privately. I wanted to post parts of their messages because I couldn't phrase my feelings or thoughts better than they did.


One mother wrote: 
I completely understand your feelings of having nothing to contribute but milk, and when they don't give them that where does that leave you? Its okay to be mad. Its okay to be sad. Its okay to be frustrated. They tell you the NICU is a roller coaster but they forget to mention that sometimes it feels like you are on the tracks and the cars are running over you repeatedly. They also can't come close to describing the incredible highs that come on the good days. Before you know it Elise will truly need you 24/7. Someday she will be a six year old who puts her arms around your neck and says, "Mommy, I was your little miracle wasn't I?" And it will still make you cry.


Another mother wrote:
I could sympathize with everything you posted about last night. No two days were the same in the NICU. We never knew if our daughter would be climbing the roller coaster or going down so fast that we could hardly catch our breath. There's something to be said about a woman's intuition and a mama's heart. And, like you said, as a NICU mom, you feel so helpless. You can't pick them up and "fix" what's wrong, but we are our child's #1 advocate. And, the "funk feeling" NICU days are totally normal, too. And, yes, sometimes it was hard for me to hear how optimistic everyone else was for us when I felt like things were so uncertain. "Everything will be fine" did not sit well with me some days. 


For other NICU mommies out there, here are some other comments that might not sit well with you on most days, but have faith that all of us have heard them (probably more than once).

"Oh, I had a premature baby too. He was 34/35/36 weeks." --You want to say, Really? Try 24/25/26 weeks.

"Tomorrow is a new day!" -- Yes, true. However, when you have 90+ days to get through, tomorrow is just one more day on the roller coaster.

You send an update with not the best news and get back, "She is a fighter and will sail right through this!" --Really? How do you know? I'd love where you are getting this inside scoop. You crave to believe this, but your worry as a Momma consumes all your thoughts and you start to really doubt the optimism. After all, you are sitting by the bedside, listening to the beeps, and seeing the doctor's concern on his face. When someone gets an email/text update from you, they are carrying on their normal day and getting the "run down" version from you of what's really going on.

We know that everyone is writing or saying these comments with the best of intentions. We must remember that these people want the best for our families. Everyone (I know I am) is guilty of saying "I know how you feel" when he/she has never walked a day in the shoes of the other person. However, without support from family and friends, where would we be? Scary thought.

I hope this post tonight helps other NICU mommies that are struggling (like we all have) with "classic comments," which is what G and I like to call them. Remember this: this is YOUR experience and YOUR feelings. You have every right to feel the way you do.

Tomorrow IS a new day and we want a HILL on the roller coaster!
J