Week 12 with Ellie

Week 12

Intermediate Care Nursery

*July 20, 2016   Weight 3.225 Kg (7 lbs 1 oz)

You are 11 weeks old. This is our 77th day in the hospital. But look up, we aren't in the NICU anymore Toto, we are in the ICN! That is good! That is progress!

No spells to report today.  I guess your last reported one was on Monday, July 18.  So maybe we will be discharged next Monday!?!?!

I have been daydreaming about you being home, watching you grow, loving you.  I have worried all this time in the NICU, and relatively limited

with me, will you bond with me?  Have you? Do you really know me.  I do see you daily, but it is small in the grand scheme of the day.  I just hope you recognize me, and know me.  It is a worry that creeps up in the back on my mind.  I try to squeeze your hand a few times, every time I arrive.  I try to hum you the same few songs, so maybe the routine will help you remember me.  Once you are home, you will be in our arms all the time.  But I would be lying if I didn't admit that I worry about that.  It has been so hard it being summer time, and your brother and sister are out of school, and you are in the hospital.  I feel like I am trying to split myself in half.  I am usually exhausted by the end of the day.  I want to be the best Mommy I can for everyone, yet I feel like I fail everyday.  Someone isn't getting the best of me.  I hope to be able to spread myself out better when we are all under one roof!  Love you sweet Ellie, until we meet again.... tomorrow!


*July 21, 2016    Weight 3.286 Kg  (7 lbs 3.6 oz)

  My sweet girl!  Today I brought you some fresh Mama's Milk! You took 90 mL (3 oz), and there was enough for a 2 more bottles.  It isn't that much considering you eat every 3 hours, but it makes me feel like I am helping in some way.  It is hours of pumping, but worth it!  No spells to report. They didn't make any changes either. Just keep eating, peeing, pooping, breathing and keeping your heart beating! You got this, you can do all those things like a champ!

Today, my friend Laura came and met you through the window.  We had Addie there too, to see you again.  It was pretty special, because you were wearing the same outfit she did, when she was a newborn. Kind of a tender moment.  I love being able to show you to people, even if it is only through a window.  I feel like you will be home soon.  I can hardly wait.... but I'll have to, this is my long long long test of patience.




*July 22, 2016    Weight 3.290 Kg (7 lbs 3.8 oz)

  I usually love Fridays.  It's the end of the week.  I have Saturday and Sunday off from teaching my class just to recharge.  Thomas and Porter are on their big fishing trip.  It's girl's weekend.  Of course we had hoped you would have been here for that. But this Friday, I don't like.

I went to the hospital and fed you.  You gained hardly anything, but you are at a very healthy weight.  The nurses gave me no news of you having any spells.  So, in my mind, your last spell was Tuesday, and that we were on a count down.  I won't lie, and I may not hold things back in this particular post, because I am mad, I am hurt, I am discouraged.  My last experience with the nurses up here in the Intermediate Care Nursery wasn't great.  They were jumpy. And CHATTY.  Sometimes I don't think they realize that parents are there.  And they just chitter chatter about everything and nothing. They talk to some babies saying "You are bad, you are a bad baby" Even if they are joking, I don't care. They better not be talking to you like that!  Well, I visited you for a while and left. Shortly after I got a phone call from the hospital.  That dreaded 984-1000 number! And it was the NP, just calling to update me.  Hello, I was there not 20 minutes ago. Maybe the chatty nurses, should have told her? I don't know!?  Well, she was calling to update me that you had a spell last night!!!? And that would restart your countdown. That your SATS dropped to 69 and your heart rate in the 80s, it was self limiting, but they felt it best the reset that old countdown.  My heart just sunk. And what the heck?! Shouldn't this have been something that the nurses should have told me, instead of gabbing away about what brand of scrubs they have?! Ugh.  But I am just deflated. Discouraged. Tired. Exhausted.  Ellie girl, we have been here in the hospital so very long.  I just wonder how much more I have in me. 79 days it has been.  I really thought you would be home earlier than expected.  I never thought we would still be in the hospital passed your due date.

It is so discouraging.  It is like the end of pregnancy, when you feel so fat and tired, and you don't care how bad it hurts, just get this baby out!  I want you to get out! Get out of the hospital, come home!  I drove home in tears.  I felt so angry. I don't understand God's timing right now, and maybe I just have such blinders on not to see why.  And maybe there isn't a reason why.  Maybe it isn't a test, it just is what it is? And I should stop looking for reasons why, just continue and have faith, have courage.  Neil A Maxwell said "“Discouragement is not the absence of adequacy but the absence of courage.”  I need to muster up some courage from somewhere in me.  I just don't know where, maybe there is some left in my big toe or something.  My back has started to hurt again, and that discourages me too.  I just feel like I am slowly drowning. And when I see a glimpse of hope, and relishes a little in it, it gets taken away. I need to find courage, somewhere. In Joshua 1:9 it reads  "Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."  I have been not just asked, but commanded to be strong and of good courage, because the Lord is with me.  I am trying to trust him, I am just struggling to trust his timing. Trying to hold on.  Trying to be so many things for so many people, that I am merely surviving at this point.

I remember Thomas saying something about all the details of your adoption. Some are just too sacred to share in such an open place as this. But Thomas said, maybe we have had all these experiences, because it is going to be very hard.  I laughed at that, because sometimes he will see things so differently, and more on the pessimistic side, without even meaning too.  But in this case, maybe he was right.  I needed all the confirmation on you being ours, to help during this long struggle in the NICU.  To remember all the tender mercies that Heavenly Father saw fit for us to see and to know, so that it would bear us up. The scripture comes to mind from Doctrine & Covenants 84:88 And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."  I know all this wasn't just a random coincidence, but Heavenly Father was in all the details of it, and we recognized that for a reason.  And during this time of difficulty and struggle, that I need to trust him and allow him to be in my heart, and his angels round about me, to bear me up.  Being angry at God, it never seems to help! Ha.  And we don't need to even start to talk about patience and me.  I just need to see the big picture, and get through the day to day.  Maybe the dishes won't get done, no biggie. Maybe Addie will have a meltdown at Jumpstart, and whines every moment her brother looks at her with a mean face. And I will have to handle it. If I have to find a baby sitter every day for the rest of the summer, so I can come to the hospital, I will, the Lord will provide a way and means for that. Maybe I won't wash my hair every day, or two or three, because I just don't have time to fit it in.  Maybe I will give my family cereal for dinner every other night, because I haven't shopped for anything to make a meal with.  Maybe I will have to say no, when I usually would say yes. Maybe I will have to take moments for myself, even if it is a locked door and a bath.  It is going to be ok, I have to keep telling myself. I know that eternity is much longer than 79 days, and will be worth all the wait, all the tears, all the sacrifices.  You are our daughter, and we have waited at least 6 years for you, if not my whole life!  You are worth it.

And on a brighter note, I did schedule your sealing today. Silver linings, they are there, if I but only look.  Love you my angel!



*July 23, 2016    Weight 3.370 Kg (7lbs 6.6 oz)

  Today was Saturday.  Daddy and Porter are still on their fishing trip.  Addie and I worked on cleaning up the house some more, trying to maintain all the nice deep clean we did last weekend in hopes you would have come home this week.  But, we shall see!  Aunt Adi kept Addie while I came and visited with you.  I held you and left during quiet time, came back after, and fed you a bottle.  I felt like the wind has been knocked out of me. Just kind of down.  I want you home.  That isn't anything new.  I just need to continue on and endure it well, or  at least try to endure it well!  You are lucky you are so darn cute, or else I would be mad and fuss at you about these spells! ;)

*July 24, 2016     Weight 3.400 Kg ( 7 lbs 7.68 oz)

On my way to church this morning, I got a call.  I was in the car, and so it rang over the blue tooth, I figured it was Daddy, on his way home from the fishing trip.  When I answered and they stumbled on my name and your birth name, I knew it was the hospital. Lucky I didn't have time to let my heart sink by looking at the caller ID.  It was the doctor, giving me an update. Which isn't unusual. But, what hurt my heart was that you had a spell this morning! Darn it :(.  Girl, these need to quit or you will never come home.  You had to be stimulated today, they said you had turned colors a bit.  She suctioned in your mouth, thinking perhaps it was reflux, but didn't get much out.  You came back up to normal.  Your heart rate had gone down to about 60 and your oxygen Saturation was down to 59.  That is not ok Miss Ellie!  The doctor was on the phone, so I asked her about you possibly coming home on a monitor, since most of your spells are self limiting.  She said she would discuss it.  So at least that wasn't a straight out "no".  Of course we want these spells to be a thing of the past! No more, please, I beg you Ellie!

  I came in today a little later than normal.  The nurses said you had been up all day, just wide awake.  They fed you a little early, so I missed it, dang it! The nurse was holding you.  Your little cry is so pitiful, they couldn't help but love on you.  I hardly ever hear you cry, you are mostly content.  I held you and you looked around.  You occasionally are able to focus. I laid you in your crib to take your temperature and change your diaper.  I was talking to you and you turned your head and looked at me, like maybe you do recognize my voice!  I held you for a while and you let out some stinky poops!  Maybe your tummy was bothering you.  Your poop was dark, they are giving you iron and a multi-vitamin, and that must be effecting your poop color.  After you big poop, you were able to relax and I was able to hold you for the next couple of hours.  You are just so sweet and special.  I want to be able to share your sweet self with the rest of the family!  So, let's stop these spells and get the heck out of this place!! Sound like a plan??! Let's do it!

*July 25, 2016     Weight 3.477 Kg ( 7 lbs 10.39)

You are swiftly approaching your big sister, Addie's birthweight. She was 7 lbs 12.8 oz, but we always rounded up to 13 oz.

This is another outfit of your big sister!

BUT, you must have other plans, because you have had yet another spell! It was early this morning or during the night, either way! They need to stop!  The doctors kind of poo pooed the idea of you coming home on a monitor. *eye roll* ugh!  I just want you home!  They said even if they did send you home on a monitor, you will still have to go 7 days without a spell.... so that's the deal. Like it or not (I'm on the NOT part!)  All I know is Grandma Sally purchased a plane ticket and will be here August 10, so if you could pencil that in to be home by then would be great!! Pretty please with sugar on top!

You had your third and final eye exam today.  It all looks good, pun intended! But the doctor said you are Stage 0 Zone 3.... not totally sure what that means, but google will ;)  That means you won't need any follow up eye exam, unless we feel it is necessary.  So, THAT is good news, and let's celebrate that!  I need to let go of the countdown and feeling sad and gloom about it. Instead, I need to focus on your victories! And saying goodbye to ROP is a big victory!  Your eyes were a little dilated. And often times the eye exam can cause more spells, but you haven't had any since. So, another victory, we will take it!

Little Ellie, there is a whole world outside of the hospital, just waiting to meet you!  You oughta come see it! On the way out today, I bought a parking pass. While I was waiting in line, the lady in front of me dropped all her coins, so I helped her pick them up.  She seemed a little frazzled.  I heard her mention to the parking attendant that her baby was in the NICU.  She told me, it was just one of those days.  I told her, "I hear you, we have been in the NICU for almost 12 weeks"  We had a mutual look. She told me her baby had been there 5 months!  Perspective. It could be worst.  I am trying to only count victories, here on out! Love you peanut!

*July 26, 2016    Weight 3.547 Kg ( 7lbs 12.8 oz)

Well, one day away from being 12 weeks old, and you are officially your big sister's birthweight! So, come home, you're done!  But you aren't. You almost gained a full pound in one week!

Today was a lip biting day. Not necessarily biting my lip in anticipation, but to bite it to stop from crying.  You had another spell this morning, while you were feeding.  I know, I know, I promised to just celebrate the victories and not get discouraged, hence the lip biting! I was fighting back the tears, like a real champ. But not really a champ at all.  Your noisy little neighbor, his family came to visit today, with the car seat.  I saw his little dry erase card on the wall, and it said "going home tomorrow". I am happy for them, but it hurt me a little.  Why aren't you going home yet?  Why do you keep having these spells?  Is there anything to do but be patient??!  Remember how I am not very patient?!  Well, this is pushing all my limits.  I'll do my best to continue biting my lip, maybe until it bleeds, to try to stay positive through all this waiting. I'm trying!  All my worries like to rise up and get me down. Like what if you aren't bonding to me, I see you daily, but maybe the time I spend isn't enough?! Then I have your brother and sister, especially your sister is demanding of me and my time.  She is struggling.  This has gotten so hard. And I am trying to carry on, I'm trying to be of good courage, I'm trying to be brave.

The nurse said you will eventually grow out of it, and one day, just not have any more spells. Maybe tomorrow? Please.

Love you Ellie, more and more each day.  That's what makes it so hard, but that's what keeps me going.  I will wait as long as you need.  Just know there is a great big world out there, waiting for you.

The flower might be a tad big?!

Week 11 with Ellie

NICU

Week 11

*July 13, 2016    Weight 2.840 Kg  (6 lbs 3.9 oz)

  You are 10 weeks old! And your gestational age is 39 weeks!  I really thought you would be home by now, but here we are, still trekking in the NICU!

They upped your feedings from 30 mL to 42mL.  That has got to feel a little better to you, I hope. So, they decided what they think was the cause for all of this.  The Dr's husband is a GI doctor, and she was picking his brain about you.  They discussed that you had started on the rice cereal 2 weeks prior to the blood in the stools. And that made sense for an allergy to manifest itself in two weeks.  So, you have an allergy to rice cereal, noted. When it comes time to feed you, oatmeal it is! The NP hoped that tomorrow we could go back to full feeds tomorrow.

I changed your clothes and got you nice and comfy in a gown, I'm sure the nurses appreciate those outfits the best, makes it easy to change your diaper! Then I fed you your bottle.  You gulped ferociously the first few minutes of the bottle.  But once you realized there was a little more, your paced yourself and enjoyed every last drop.  I brought more breastmilk for you, but it was frozen, that will be your dinner.  When the bottle was empty, you didn't want to let go.  I burped you. You continued to root for more, but eventually gave up and fell asleep in my arms.

Your neighbor had a little procedure done while I was there.  It's so sad, her little seizures are getting worse, and I believe they were doing the spinal tap, but were unable to be successful with it. It is just so sad.  And helps me realize how grateful I am for our trials.  It could be worse, it could be way worse.

Well, secretly I am on a countdown for you to come home. I say by your due date!

Your brother and sister got to visit the library and see the Snake Man, and he brought some cool creatures!

Sleep pretty darling do not cry, and I will sing a lullaby.

Porter holding a lizard, Addie said it stinks.

He looks a little unsure

*July 14, 2016     Weight 2.845 Kg (6 lbs 4.14 oz)

   Hey little Miss! It is nice to see your weight slowly climbing back up!

I came in and the nurse had already fed you one 2 oz bottle and you were onto the second one.... which means..... You are back on full feeds!  Hooray!  You are able to eat as much as you wanted!  I was able to take over and you took 2 more oz!  That is a total of 120mL. That was quite a bit more than the 42 mL from yesterday!!  I think you may have taken a little too much, but I understand why it is difficult not to stop when you have been so deprived.  But you also spit up two times, because of you gorging yourself somewhat.  I probably didn't you burp you as much as a I should have.  It can be annoying to burp you, because the monitor will pick it up and start alerting "V-Tach".  But, I blame me for your two spit ups for not burping you enough.

The NP came by and I asked her if we were on a countdown yet. She said.....YES!!?!!  She said if you are able to poop, which you haven't since Saturday (probably because they starved you all weekend!) When you do poop, if it isn't streaked with any blood, they will continue on this same formula and possibly discharge maybe Monday or Tuesday!! WOW! What?!  YAY!  How exciting!  There is so much to be done!  Mostly everything is, but now that it has actually been said, I need to deep clean the house and have all my ducks in a row!

As I was leaving it sounded like you were trying to work something out, like a big poop.  You had some good gas, and a lot of grunts and moans to get it out (I took a video!)  I called this evening, no poop yet. But lots of people are praying for you!

Wow, best news ever. This time next week, you could finally be home!  We love you so much little one! I know your brother and sister are desperate to meet you!

*July 15, 2016   Weight 2.945 Kg (6 lbs 7.6 oz)

Normally when I get a missed call from 601-984-1000, my heart usually sinks with worry. That is the hospital's number.  I have often said, they should have 2 numbers to call from, an emergency type number and a non-emergency type number....just so when you miss a call,  you can either freak out or rest easy.  But, with all the technology we have, we don't have that.  That will go in the suggestion box.  They did leave a message and it was from the "Discharge Nurses", ooh, I like the sound of that.  Most times the word "discharge" can be associated with nastiness, like ooze from an infected wound. But in this case, "discharge" is a great word.  It means this talk of you coming home is actually true!  I called back immediately and spoke with these lovely discharge nurses.  They wanted me to bring up your car seat, to do a car seat test.  That is where they sit you in the car seat for 1 1/2 hours and keep you hooked up to your monitors to make sure your heart rate or your SATs don't drop. New babies like you tend to want to slump in the car seat and restrict their breathing.  When I called this evening, they hadn't yet done it. They wanted to wait to feed you and then do it.  You have to pass the car seat test or they won't send you home.  Which is smart. But gah! That would stink to come so far and then have to wait longer to pass the car seat test.

  They mentioned also, that if you do in fact pass you car seat test, and poop (which you still have not done since Saturday. And it cannot have blood streaks in it) that you will be discharged MONDAY! Today is Friday!  And in Addie's terms of understanding, that is only 3 more sleeps!!  Oh my goodness! My poor family will be deep cleaning everything tomorrow, including themselves! Ha!  Of course, some of these things might not happen, and things may delayed. After all, we are in the NICU, there could be one last hill on this rollercoaster!  But here is hoping and praying!

You also have a MRI ordered. This is standard for babies born as young as you, so not to worry to much!  Again, when I called tonight, they hadn't taken you to get it.  I am not totally sure what they are looking for, but I guess we will find out soon enough.

All this seems so surreal.  We have been in the NICU 72 days.  That is a long time. But now this is here, I am getting a little nervous, mostly excited, but a bit nervous too!  It has been almost 6 years since I had a newborn baby (well, a 10 week old new-ishly born baby ;) ).  Maybe it is like riding a bike?!  Here is hoping.  I just want to make sure you are safe, that you don't have any more spells (Monday you will be spell free for a week), and that you will thrive.  At least once you are home, you will get constant love and attention from family.  Your siblings are so excited. Tonight, Porter prayed you would poop, without even a giggle or a smile (I peeked). They want you home. They are so excited to meet you and hold you.  Addie practices holding babies as much as she can, she will be a great help to me and a great big sister.  I know Porter is already a great big brother, and I feel he has such a special place in his heart for you.

Oh my sweet, all my prayers tonight will be focused on you coming home!  So please poop girl! And let's get you home at last!

Your car seat is there, ready for your test!!

*July 16, 2016   Weight 3.01 Kg  (6 lbs 9.952 oz)  You are 18 inches long (46.5 cm)

You are up to 3 Kg!  Ba-bye 2 Kg, onward and upward!  Porter weighed this much when he was born, 6 lbs 9 oz, and was 19 inches long.  So, you are close to being as big as your big brother!

Your room is looking cute!

Well today was a cleaning blitz to get the house clean enough for you to come be here. I had called your nurse earlier this morning, to see if you had pooped. And YES! Finally a poop! And the best part, no streaks of blood.  That was great news. And more good news, you passed your hearing test. You had your MRI, and we were awaiting the results, they figured we wouldn't hear back until Monday.  The bad news was you had a spell this morning.  you were able to come back on your own, but it had to be charted, which isn't good news.  I am not sure how long it was, but it was charted, documented.  I knew they hadn't done rounds yet, so, I put all my energy to cleaning this house, in hopes that Monday would still be discharge day.

All it is missing is YOU!

I got a call from the NP, to update me on the rounds.  Your MRI results came back, and they were normal! So that is great news! So lots of great news, lots of things to be happy about.  But then, the news that just plain stinks. Because of your spell, it would put off your discharge day, at least by a few days.  Jab to the heart! We were so close!    The doctor would make that final decision Monday, since he isn't in on the weekends. But the NP was pretty confident that most likely it would not happen on Monday, due to your history of A & B spells. They like that 7 days No spells rule.  Which I do understand, and I don't want you having spells when you get home, because that would be scary. But I felt deflated after that phone call.  I had so many reasons to be happy and upbeat, but that one just knocked me down a peg.  The rollercoaster continues!

Look at that smile!

I visited you later in the day.  You were mostly asleep, peeked a few times.  When I was little, I always imagined little babies would pretend to be asleep sometimes, just to listen to what you had to say.  So, I always would say something extra nice and special when I thought they were listening in.  And I did it again today.  I let you know how much I loved you. How we all can't wait to  for you to get home.  How you make our hearts melt.  How you were special delivery to us straight from heaven!  I know that to be true! Love you little mite!  No more spells, hear?!

We went to a Braves Game, wish you were there!

*July 17, 2016     Weight 3.07 Kg  (6 lbs 12 oz)

  Hey there little Miss!  I came to visit you and fed you 97 mL of formula.  You are a great eater!

They told me you had another spell last night. C'mon Ellie, please no more spells!!!  We want you home so bad! Of course we want you home spell-free!  So, I am not sure what this will mean about when you will be discharged.  But it won't be tomorrow.  No phone call this evening from the discharge nurses :(
Wait a little longer..... just like it says in the scripture.  It will be small moment, let's endure it well.  The end of the marathon is always the hardest and longest feeling.  Patience.  We had a great talk in Church about patience. It was what I needed to hear.  We will trust the Lord's timing, He has brought us this far.  Love you sweet girl!






















*July 18, 2016    Weight 3.125 Kg ( 6 lbs 14 oz)

Hey Little Gal! You were a super sleepy pie today! The nurse had trouble getting you to eat more than 60 mL, but I got you to eat 85mL! Good work!  You were saving it for me!

Exciting news! You are moving upstairs to the intermediate nursery!  I know I know, we have done that before.  But you are in a much stronger place than you were last time!  And tomorrow we will bring your brother and sister up to see you for the first time, on your due date!  Oh my goodness! 11 weeks has nearly passed and you are still in the NICU! Time to stop these spells girl and come home!

Look at the cute chubby neck!

Love you!

Addie went to Jump Start today

Getting ready for school!

Sleep pretty darling!

*July 19, 2016    Weight 3.180 Kg (6 lbs 15.9 oz, could you get any closer to 7 lbs without being it?!)

Big yawn

Today is your Due Date!  Can you believe how long you have already been here!  And dang it, you are still in the hospital!  I was 2 weeks late, so maybe you will be too? Hopefully only a week late!  Apparently you had another self limiting spell this morning.  Maybe they will send you home with a monitor? Or something?  I just want you home!

I decided to celebrate your due date, but introducing you to your older brother and sister! Since you are up in the Intermediate Care Nursery, they have a window!! So, I had my good friend Brittany bring your siblings up to see you.  The nurse said we can't film in the unit, but we may have accidentally caught a glimpse of you! They were sooo excited to see you! And even more excited now to get you home!

Be strong little one! And come home! I must remember you going upstairs is a step in the right direction! But we are sooo ready to be done with hospital trips and just get to hold you whenever we feel like it!

You will be 8 lbs before we know it!  Maybe you need to reach Addie's birthweight before you come home, she was 7 lbs 13 oz! Ready??? Go!