Week 10 with Ellie

NICU

Week 10

*July 6, 2016   Weight 2.77 Kg  ( 6 lbs 1.5 oz)

You are 9 weeks old!  38 weeks your gestational age. My goodness! AND over 6 lbs! Look at you, my big girl!  You are only a few ounces away from how much your big brother weighed when he was born ( 6 lbs 9 oz)!  Your growth is outstanding! You have been in the hospital 63 days, your whole life!  Hopefully it won't be much longer!  I need to start a guessing chart, like pregnant women do.  What day you will come home? What time of day?  How much will you weigh?  Will you have more hair?  Etc! Ha!

They told me you had a self limiting spell today.  The nurse wasn't sure or not if you were on your count down to come home, I am not sure either, this might be a good thing to know!  But she didn't think that this spell would count against you if it was.  You were able to recover on your own.  That still makes me nervous though!  I won't have all the technology at home to see if you are coming back on your own or not!  Though I did buy a monitor to watch you as you sleep, when you are awake, it doesn't really work because of all the movement you'll make.  I'll be ok, you'll be ok, and I'll keep telling myself that!

   You looked precious today.  I came in right after they cleaned up a huge blow out! Whew! Glad I missed that. haha!  Half your clothes I bring home to wash are blow out clothes!  I will get my fair share of blowout clean ups, I'm sure of it!  So I will let the nurses have the pleasure for now!  I got there and Daddy was waiting for me in the hall!  You had two happy visitors today!  The nurse was feeding you when we came in, and I took over.  They are giving you more formula in your bottle now, so you can eat as much as you like!  You ate 85 mL for me, you usually eat 60-65! You are a great eater!

I think you could come home on the low flow, but I really think that you don't need it. You did without it for a while and did great.  Daddy had a good idea, to keep the cannulas on your face and turn off the oxygen, to see how you do, maybe trick your body into thinking oxygen is there?!  I am not sure that would work, but it is worth a try.  I trust the hospital to do what is best.  I love you my sweet!

*July 7, 2016     Weight 2.870 Kg ( 6 lbs 5.4 oz)

   Girl, these 100+ gram weight gains! wow!  They took you off rice cereal, they like to see the gain, but seems like you aren't having any trouble with growing!

3 cheers for Ellie!

No spells to report.  I am not sure if we are on the countdown yet. It was really busy in the NICU, but I didn't get to talk to a NP or Dr, to check and see where we are at when it comes to you and your discharge from the hospital.  I will plan to talk to someone later this evening or in the morning about it.

Strike a pose

You ate well.  They forgot to change the nipple on the Dr Brown's bottle, from the level 3 back to a level 1 or preemie.  The level 3 was for the rice cereal, so the hole was much bigger.  Milk was dribbling everywhere.  I told the nurse, and we got you changed to a level 1.  You still were dribbling a little, but I figured after a few feedings you would get the hang of it.  You drank most the bottle, minus all the milk that leaked out your cheeks in the beginning.  And then you were out.  One of the nurses noticed a little red in your poop.  They are going to watch it.  It may be anal fissures. You are constantly straining and pooting, it may have caused a little fissure.  But they didn't seem too worried about it.

Your little head is growing and hardly any of your headbands you can wear without them leaving a little mark!  You are doing well my dear! What if you come home next week?!?!?!  That would be AWESOME!



















*July 8, 2016   Weight 2.870 Kg ( exactly the same as yesterday, impressive)

No change, like even a little, in your weight.  So your body must be adjusting to this no rice cereal business.  The doctor was making rounds and was liking all your great progress.  She mentioned moving you up to a room where I could stay with you overnight.  I would love that, but I also need to take care of your siblings.  If you were our only one, I would be there.  But, with things like they are, I am here and there and sometimes neither here nor there. I feel scattered a lot. I just want you home and out of the hospital.  She also mentioned they would try you off oxygen on Monday, to see how you do.  So that is all exciting talk.  That is countdown talk!

  Your nurse was all scattered throughout the unit with different babies.  So I decided to get you changed. Your outfit was the same as yesterday and had dried milk on it.  I took your temperature, 98.6, changed your clothes and saved your diaper for last. For some reason you only had size 1 diapers, which are ginormous on you!  Not sure where your preemie sized diapers went, or even a newborn size.  So I was trying to stall until your nurse came over, but she never did.  So, I just decided to use one.  I reasoned they had you in the bigger size to catch you blowouts! Maybe?  Well as I changed you, I noticed some more blood in your poop.  Your poop was a little thicker than usual, and had the streaks of blood throughout it.  More than what I saw yesterday.  I knew they were supposedly monitoring that.  I left it to the side for your nurse to inspect. I picked you up and held you.  You are getting so big!
 

Getting your Xray

No silly girl,
they wanted to do an Xray, not
an eye test! ;)

 Eventually your nurse came over, so we got the bottle ready to feed you and I mentioned it to her, to take a peek at your poop.  She looked and was a little concerned and decided to have the doctor come take a look.  The doctor had just been here, and checked her belly, but hadn't said anything.  The NP, Wendy, came over.  She peeked at your bum, to look for anal fissures.  She noticed several.  But they wanted to do an Xray to be safe.  So, I wasn't able to continue your feeding until that Xray was complete and looked at.  They brought the Xray machine over, it is amazing how many portable machines they have.  I laid you down, they Xrayed your tummy and the image was instantly in place.  I held you, hoping that it was just anal fissures, and nothing else.  The NP had me come look.  She said you had a bowel loop, a large bowel loop.  She said it could be an obstruction, although that didn't seem likely, you are extremely regular in your poop.  Or that could, in fact, be poop.   There were also little speckles throughout, that could be pneumatosis (intestinalis) (don't google it, that never helps), or simply, again, poop.  Anyways, whatever it may be, they take it very serious.  Disease or infection in the bowels can be fatal to premature babies.  So, they are treating it as an infection. They ordered blood work.  And an IV, no feedings for 24-48 hours ( poor baby!! I know your love your bottle!).  They want to give the bowels some rest. And antibiotics.  My heart sank and ached for you!  All this talk of you coming home, and then a curve ball!  And I hate to think of you not being able to eat, without any understanding why! :(  I  am glad you won't remember any of this.  But I will. And it hurts me for you.

I called Daddy and told him.  I asked him to go with Double (Granddaddy) to give you a blessing.  I had wanted you to have one Sunday, but poor Daddy and his back couldn't do it.  Maybe the timing was better, that you needed it today.  I wasn't there, I was with the kids.  He said they had a tube in your mouth, to let up any back up. :(  That you didn't like it and were trying to pull it out.  But he said the blessing went really well.  I promise you, it will help!  Daddy mentioned you had a loud and giant poop while they were there! Maybe that was your obstruction coming out.

They did another Xray tonight at 9:00pm.  I called to see how it looked.  The nurse said it looked much better than the first one.  They plan to do another Xray in the morning.  She also mentioned that your bloodwork came back and it was all totally within the normal range, no sign of infection.  You temperature this afternoon was fine.  So you don't really have any other signs of infection.  Just blood in your stools, and a weird Xray....but those are scary enough for me.  The nurse said you are pretty sad, and sucking furiously on your pacifier.  Poor thing!  You just want to eat.  What torture for you.  But it is to be on the safe side.  It just makes me sad, and weakens me.  I had a good cry over it, now I am trying to buck up and be strong for you!  I'll drink an extra glass of milk tonight for you!  Hopefully it amounts to nothing severe or dangerous.  Just a little reaction from straining all the time from your continuous gas, or weaning you off of the rice cereal.

I love you sweet heart and will be praying for you all night!








*July 9, 2016   Weight 2.900 Kg ( 6lbs 6.08 oz)

  6lbs 6 oz and 66 days in the NICU, you planned that, didn't you!? You sneaky girl!  We had the City Swim Meet for Porter.  He got 7th over all in the 9-10 year old back stroke. 7th in the whole Jackson Metro area, that is pretty great!

As for you little miss.  Your X-ray looked much better this morning.  I got there when the doctor was doing rounds.  They decided to start feeds tomorrow, after the 48 hours of no feeds and bowel rest.  Honestly, I feel like all this was unnecessary.  Had you taken a poop before the Xray, I think all this wouldn't have happened.  But, maybe it was the beginning of something.  Either way, I just want you to be able to eat your bottle!  I was allowed to hold you, but I worried you would get excited that you were about to get fed.  But, I knew a little love and cuddles would help you too!  You got super wide eyed, like you were about to eat.  I am sorry I couldn't though! :(  But I held you for a long while, until your drifted off.  Your heart rate kept dipping, but would come back on your own.

I began to think about your blessing last night.  Daddy said you were pretty upset.  The blessing was good and afterwards you did poop a pretty loud poop!  And maybe that is exactly what you needed, a poop.  It reminded me of my Grandma Hiller. Years ago, she was feeling pretty terrible.  I had recently come home from my mission.  She had requested a blessing.  My Dad was either out of town, or just unable to come at the moment.  But she was feeling mighty bad. Your Uncle Jake had just barely got the Priesthood and was preparing for his mission.  Well, Uncle Jake and Grandpa Chipper and I went over to Grandma Hiller's home, so they could give her a priesthood blessing.  Uncle Jake was very nervous, after all, it was his first time giving a blessing.  But it was the most humble and sweet blessing I may have ever heard.  Heartfelt and led by the Spirit.  After the blessing, Grandma Hiller was extremely grateful.  And after a little conversation, she excused herself to go to the bathroom.  When she came back, she had felt a whole lot better. And what was it that needed to happen, just a poop!  It may seem a little silly to say, but the Lord knows and cares about each one of us!

You fell into a deep sleep and looked peaceful.  After I left you had a A & B spell, but it was self limiting.  You are exhausted and hungry, I feel like your are owed a few if you need them!  I took a little video of you, how in the world do you get the hiccups when you are starving :(  But you are so precious.  It is just hard to see you back with a tube down your throat, an IV and no clothes on. A little step back to take a step forward

*July 10, 2016   Weight 2.890 Kg (6lbs 5.7 lbs)

    It's Sunday, so I called to check to see what the Doctors decided in rounds. They wanted to do one more X-ray to decide to continue with the antibiotics or stop them and begin feeds again.  They decided that all your X-rays looked progressively good and that we could begin feeds again!  Hallelujah!  However, the bad news, they have to start really small.  So only 7 mL each feed.  That is like a sip of milk to me.  Maybe a few gulps to you :(  BUT! It is something!  You have been offered 120mL, taking usually 80-90mL, so 7mL is quite the drop.  They want to slowly bring you back up.

Remember that song, Hungry Eyes, well you got them!

  I came and held you. You were awake when I came, looked much more alive and alert than yesterday.  Yesterday they said you slept a lot.  Hopefully not losing the will to live, since they took one of your only forms of pleasure away.  I was also able to feed you your tiny tease of milk.  I had you suck on your pacifier for a little before, to maybe trick you to think you were getting more.  I gave you the 7 mL, you gulped it up so quick, didn't even take a breath! Awww, made me sad that you are still so hungry and can only have so little.  But, they have a method to their madness ;)  I gave you the pacifier after, to also make you think you were having more milk.  Maybe I was only tricking myself to believe that it will make a difference.  I held you for a while, humming to you.

Hopefully this is the last part of our marathon in the hospital, the end. The end is probably the hardest and longest feeling part of it.  I hope the finish line appears soon, and you will be home and in our arms!

so snug

*July 11, 2016    Weight 2.880kg (6 lbs 5.376 oz)

My parking pass expires tomorrow! It is my second 30 day pass! It's my second one!We have been at the hospital entirely too long Miss Ellie, let's go home soon!

You have dropped a little weight the past few days, but that is to be expected. They upped your feeding by 4 mL to 11 mL total. Ugh, still not near enough!

 You had your eye exam today too.  Things are the same, ROP Stage 2 in Zone 2 of both your eyes.  It hasn't gotten worse, so that's good.  You will have another eye exam in 2 weeks, hopefully you will be home by then!

You were very touchy today, I think you are tired of all this poking and prodding.  And I think you are pretty darn "hangry" at this point.  I don't blame you.  You fuss at the nurses.  When I changed you, you weren't too mad at me.  We got you back into some clothes, and that should help you feel human again! ;)

No more Oxygen!!

I tried to make you feel like you got more milk than you actually did, by giving you your binky for a little while before and after the bottle.  I hoped it helped.  You gulped that bottle down desperately. Makes me so sad!  I wish I could give you more!  At least it is Mama's milk! Hopefully that will give you an extra burst of power and strength.  You slept really well after your teeny tiny bottle.  They plan to increase your feedings tomorrow, hopefully more than just 4 mL!!!

Oh, and the biggest news of all!  You are on room air! No more oxygen.  When i got there you had gone about 4 hours and you were doing well!  Hopefully we are done with that stinking oxygen!  So, it is nice to see your whole beautiful face!  And I hope they will take out your IV tomorrow.  The less wires on you, the better!!!

Love you girl! Only about a week until your due date, and hopefully not long until you are home!

Always a sweet heart.

Here's a little "hangry" girl. You can see how little
you get to eat in your bottle in the corner there.

Aww, my sweet girl. Sleep away these little feeds. Soon enough those sticky marks
from the oxygen will go away!

*July 12, 2016    Weight 2.815 Kg ( 6 lb 4.2 oz)

   Well your weight keeps dropping little by little, but hopefully once they get you back on full feeds, weight loss with be a thing of the past.

Your poor little arm

Today when I got there, they mentioned that your IV had infiltrated, I wasn't sure what that meant, so I asked.  The IV had gone through the vein, and the fluids were leaking into your arm.  Now it is all fat and swollen, and it looks like Popeye's arm.  
It is super sensitive to touch and you keep it drawn up because it is so tender.  That made me sad and a little mad.  It seems that should be something noticed a little quicker.  I was hoping they would say, we are done with your IV and go back to full feeds.  But no, they wanted to keep the feeds slow and steady.  The Dr. had noticed another bowel loop in a different spot, so wanted to take things easy until they took another Xray tomorrow.  I am pretty sure it is just your poop!  Can't a girl poop, without people poking her with needles and starving her!?!  Geez!

I got to give you a bath, after I fed you your bottle.  They went up to 18mL, from 11mL.  You of course chugged it down!  You enjoy your baths, get all bright eyed and curious.

Before your bath

Then the dreaded, awful, terribly cruel and unusual nurse came over to give you your IV, and her little Igor assisting her.  Your infiltrated arm, of course was a no go.  So they went to your other arm, although you had bruising on your hand, where an attempt was made, and a bruise on your forearm.  So they went to the middle of your arm, where they normally draw blood from.  They laid you tall on some blankets and tied that rubber band around you arm.  They had a doppler to look inside your arm to find the vein.  You think that would help.  They kept the tourniquet on forever, as they were setting up, your poor little arm kept getting darker and darker purple.  That was ticking me off.  Get prepared before hand, and have all your stuff in place. They thought they found one, and started poking the needle in, and moving it and twisting it.  I was holding in your binky and dripping sugar water in your mouth, to try to distract and comfort you. I try to empathize with people and those trying to do your job, but they were laughing and making jokes to each other.  If you are doing good at you job, by all means, kick back and cut some jokes, but when you aren't.....be quiet and focus!!!  They looked at the doppler and was talking back and forth, like maybe it was a good vein, or maybe it was blown, but they were going to try it anyway.  They thought they had it, taped it up and then tried to flush it, and you cried out.  That meant it wasn't in.  They checked with the doppler, and sure enough, they didn't get it.  So they pulled it out.  Where else were they going to do it?!  I was worried they were going to stick that same arm. So I asked if they ever did an IV in the leg, and they said that is where they were trying next. Gulp.  So, they put on the tourniquet, entirely too long again, and a heating pad to help warm up and get it ready.  They again didn't find a good vein, but decide to try anyway. What the heck?!  They poked it in and dug it all around, and once again, failed!  I was gritting my teeth at this point  and tried to burn them with my stare, because it was seriously making me mad!  If you don't think you can't get it, don't do it!!!    They said they would look at the last leg.  I was trying to be empathetic, but I was also getting angry.  I said, "You are making a pin cushion out of her".  So, same story, they looked, couldn't find anything, yet still stuck you. There has only been one other time in my life that I wanted to punch someone in the face, that changed today.  I wanted to throat punch her, both of them.  Third time IS NOT always the charm.  Now get the heck away from my baby!  If they had even entertained the idea of poking you again, there may have been an altercation.  The Mama bear was about to boil over.  They told the NP that they couldn't get the vein. That your veins were too dry.  Uh, maybe it is because you need to eat more!!!  The NP came out and said she talked to the doctor and they decided to just increase your feeds.  That is what I was insinuating to her earlier, that we didn't need another IV, but just more food!  I understand them being cautious, but let's also be considerate of this little one.  Let's be cautious of poking her and making her bleed precious drops of blood she doesn't have to spare.  So, they decided to bump your feeds up to 30mL, which is about 1 oz total.....it's not much, but it is more.

Not sure what happened to your little head. :(

    So, that was a bad day.  I picked you up and cuddled you and tried to keep you as comfortable and still has possible.  Bless your sweet little heart.  It was hard to be there to watch all of this, but I was glad to be able to support you.  I dripped a bunch of sugar water into your mouth.  Your cheeks were sticky from it.  Oh my angel, soon you will be home, and NO one will poked you and prod you. And you can eat as much as your little heart desires.  They did mention that they may increase your feeds tonight after midnight. So I will hope for that.

This is the look you gave that nurse. "Don't you dare mess with me today!"

Your outfit was super cute!

The good thing about today, if we can see the silver lining, you are doing awesome off of oxygen! Like a champ! No spells!  AND, with as little as you are eating, you were able to have ALL breastmilk for all your feeds! So there is a little part of me I can give!  So, we are doing ok girl!   It seems like they place you in places I need to be, to understand that we are doing ok.  So what that we have been in the NICU for almost 10 weeks, and that you are almost 39 weeks (tomorrow), and I thought you would for sure be home by now. But your neighbors in your pod are twins, a boy and a girl.  I had noticed Sunday, she was having little seizures, and she was intubated.  Both twins were born at 25 weeks, I think maybe a week before you were born.  Yesterday the doctors and nurses were talking to the parents.  The little boy was doing well, and they were holding him.  It was the little girl they were talking about.  I am guessing she was doing bad in the beginning, and maybe shouldn't have survived this long.  They were talking about her seizures and maybe doing a spinal tap, and run more tests....or not.  The doctor said through it all her intestines had completely necrotized and were gone.  A transplant wasn't an option, because intestines that small weren't readily available. It was heart breaking news.  The family had boys at home, this was their little girl, and she simply was not going to go home with them.  She is being kept alive, but will not live.  It is so heartbreaking and humbling.  It could be worse, it could be way worse.  And I need to remember that.  You will come home. You will.  And I am so grateful for you.  I pray you won't remember this time in the NICU, and all the love we have to give will take away all the needle pokes, all the struggle, all troubles of it.  I can't wait for you to be home.

All tuckered out from all those sticks! Sweet dreams I hope, of overflowing bottles!