Preemie Life - Day 63 A moment of bliss

After the longest 63 days of my life, weighing in at 7lbs 2 ounces my sweet little Cheetah finally got to join her brother and sisters.  I have a lot to say about this moment and the steps leading up to it, but right now I have a little girl due for her nine o'clock feeding so those details will have to wait.  Thank you to all our friends, family, workmates, and even random strangers who have been praying for our family.  When it got so hard that I just didn't see how I could continue, your love buoyed me up.

Finally cutting that wrist band off!

Preemie Life - Day 57 Christmas Eve

so this is Christmas
and what have you done
another year over
a new one just begun

and so this is Christmas
i hope you have fun
the near and the dear ones
the old and the young

a very merry Christmas
and a happy new year
let's hope it's a good one
without any fear

Christmas Eve and we are two men down.  Dr. J is working 14 hour shifts tonight and tomorrow night.  After a short nap this morning he was working like a mad man finishing up shopping, wrapping gifts, putting things together.  He ended up having to take his dinner in a Tupperware because there just  wasn't time to eat.  We did manage to get him a Santa hat and a pocketful of candy canes. Hopefully it will be an easy night and he can get some sleep and actually enjoy presents and a Cheetah visit tomorrow.  Both of us got to see Cheetah today.  We are in agreement that being without our child this year makes it the roughest Christmas to date.  At one point Gigi was crying.  She said to me, "Cheetah wasn't here when I was this old (and she held up four fingers) and now I'm this old and she's still not here (and she held up five fingers).  I think of all the kids Gigi is taking this situation the hardest :(  I wish they would let the kids visit.  I know the rules, I understand the reasons but they still bite.  I wish there was a little room for flexibility when your kiddo is as close to term as mine is and the biggest holiday of the year is upon us.  Crossing my fingers and praying real hard that our little girl can home next week.  When I was pregnant with Gigi and we were in the middle east I got to ride around on a donkey and walk around in the cave stables they use there.  It made me really reflect on the trials of Mary, travelling while pregnant, birthing her child with animals, a far from ideal beginning for the Son of God.  This year with a child missing from my arms I find myself reflecting more on our Father in Heaven.  What was it like for him to send his son to earth knowing the trials he would face?  What is it like for him to send each of us to earth?  It must be a challenge.  Even though he knows we will be home soon, does it mean the process doesn't hurt him?  In this Christmas season I'm so thankful for the love he has for us.  I'm grateful for the gift of his Son who gave all men hope with the grace he has granted us.  I love my family and long for the day when we can be together again.  Thank you to the hospital staff, thank you to my family, thank you to my friends...our family is eternally indebted to you for all your help.  Thank you to our secret Santa.  It will probably come as no surprise to anyone that halfway through the month I quit doing our advent calendar.  I just got overwhelmed, but Secret Santa was there. For twelve days they have delivered and each time that bell rang the kids went nuts.  We had fun things to eat and fun things to do!  

Preemie Life - Day 55 Cautiously Optimistic

I spent the night at the hospital last night.  I've had the opportunity to see Cheetah every day but the last few days have been short visits filled with more doctor time then baby time and my spirit was low.  I decided to take the opportunity of Dr. J's night off and spend the night, even if it meant one more night we didn't get to spend together.  I'm only allowed one non-nutrative nursing a day now.  The lack of consistency can be nerve racking.  One day it is three, then it two, then it one, then it is three, then it is one...you get the idea.  But there is little you can say and so you just follow the protocol you are allowed.  So I pumped and put her on the breast.  She settled in nicely but then had a brady after only a minute.  It was frustrating and I felt worn down by lack of progress.  I decided to kangaroo pouch her.  It's been awhile since we've done it and Dr. J had suggested it would probably be good for both of us.  She squirmed and fussed as I took her clothes off and slipped her into my shirt but the instant we were skin to skin she went slack into a deep sleep and I felt the tension I've been carrying all week erase.  Sometimes that man is spot on!  They are always saying in the NICU when Cheetah is struggling to get something, "you have remember she should still be in your body right now."  And we use that to excuse a lot going on with her, but I think I need to give myself the same.  I lost ten weeks of this pregnancy.  I lost the first two months of having my daughter in my home.  I need to take those moments to connect with my daughter in any way that I am actually allowed.  And so we slept most of the night mother and daughter, chest to chest in a recliner.  Then this morning during a very successful non-nutrative nursing the team walked in to round.  When they saw my exposed breast they headed back out to the hall, and then the attending headed in on her own.  She told me that they really want to do a swallow study on Monday to see if Cheetah was actually aspirating and if she was if her feeds would improve with thickening...and then she dropped a bomb shell.  She told me that as long as Cheetah can go five days without bradys they are willing to send her home with an NG tube so that we don't have to wait for her to be on full PO feeds.  It is up to us but they are willing to train us if that's what we want to do.  When I told Dr. J he had a little hoot and said if it comes to that, that is what we want to do.  With this blog my pain is very present but the whole family feels the loss of not having Cheetah at home.  Dr J still wears the wrist band from the hospital.  A couple of days ago I pointed out how gross it looked and how the words had completely faded.  His eyes got red when he said he still wasn't going to take it off until Cheetah was home.  With the new plan if we can stay brady free that day could be as early as next week.  I'm straying cautiously optimistic!

Preemie Life - Day 53 A foot in the face....

Cheetah had another speech evaluation today.  She did awful...or did she?  Her suck was atrocious, her breathing pattern erratic, she fell asleep after only a few minutes.  BUT...that was actually an improvement.  The last two times she was given a bottle she refused to eat anything.  This time she drank 15 ounces.  Of course that doesn't win you any points with the team.  They are ordering another week of nothing hoping she will mature.  For me being there and watching was a major breakthrough. I never wanted her to have a bottle in the first place but agreed to it hoping it would get her home by Christmas since I couldn't be there to nurse at every feeding.  Today watching them hold her sideways, gloved up blue hands poking her lips, the messed up latch she had after using the ridiculous nipples they insist on, it hit me...why am I even allowing this.  It's obvious she's not making it home for Christmas so why rush.  It will be another week before they let her try again and when they do I'm going to insist on it being momma.  Dr. J has the week of her due date off.  That is 2 1/2 weeks for her to figure out her breathing and then maybe I can get those two days of full PO feeds in.  And then hopefully we can get her home ....because 70 days of living in a hospital, well let's just saying it is getting a little excessive!  Dr. J says he doesn't know what he's going to do with me if she doesn't make it home on her due date week.  He's thinking monumental breakdown.  Let's hope we don't have to find out.

Meanwhile in true doctor fashion, Dr. J is working nights this month, including Christmas Eve and Christmas.  Obviously not the most ideal.  It would have been my nature to gripe, gripe, gripe but this Christmas I'm on the other side as well.  My little darling is spending Christmas Eve and Christmas day in the hospital, and it really struck me what a stress a hospital stay is.  As a hospitalist there is no such thing as days off.  People are sick at night, they are sick on weekends, they are sick on holidays, and they need people to be there for them.  What they don't need are people who are grouched out because they feel they are getting cheated out of holiday.  Dr. J and I talked about how disappointing it must be for these kids and their parents to be in the hospital over Christmas.  We decided the man for sure needs a Santa hat and perhaps should fill his pockets with candy canes.  I guess there are always lessons to be learned, and maybe my mom is right, these are lessons that make you a better doctor that no one is going to teach you in medical school.  Enough already though!  Please no more lessons this year :)  At least not while we are on night shift.  The whole 5pm to 7am shift has it's own weird little quirks.  For one we eat dinner at 3...which means people who don't need more then three meals a day (ME) are eating at least 4.  Then there is the lack of sleep.  The bright spot, my husband can sleep through anything.  When I was a child my step father worked night shift.  It was a nightmare.  My parents kept their room completely black, kids needed to stay completely quite, and he always did these random prep nights where he'd  be up in the middle of the night watching weird movies and sleep days he wasn't working.  Blah!!!!  My husband starts his first shift with just a nap, then when he comes home for any following shifts he conks out like someone hit him over the head.  The light doesn't bother him, the noise doesn't bother him, conversation doesn't bother him.  This morning I came in and Peach was jumping around on the bed.  I brought her into the bathroom with me to shower and the noises didn't bother him one bit.  A half hour later I came back upstairs and found her again in the bed.  This time she was laying with her feet at his face, kicking him with her fur lined boots, saying, "Wake up daddy, wake up."  He never even shifted out of REM sleep!  Later I found Gigi in the room talking at him about her My Little Ponys.  I gathered her up out of the room and he rolled over and was out again quicker then I could say dream state.  The man is a sleeping machine.  When we were first married it used to drive me crazy.  His elaborate setting of multiple alarms, multiple times, the amount of time he let pass before he'd get up, I found it exceptionally distracting.  And then there was his lack of alert.  I'd wake up in the middle of the night freaked by a noised I'd heard, and he was totally out of it.  It became glaringly obvious that if someone was going to knock robbers on the head with a bat it wasn't going to be him.  But now with four children and crazy night shift hours I see the man was born with a pure gift!  I'm so grateful because it makes my life/the kids lives so much easier.

Preemie Life - Day 51 Seven Weeks Old

Seven weeks old.  6lbs 1 ounces.  Normal baby size!

The awkwardness of having a major breakdown on a floor so small as the progressive nursery is you know everyone is talking about it.  You don't know what they are saying but you can tell it's getting around.  They look at you funny and when you say something, they respond with, "Oh I've heard," or "Yes I realize this is hard for you."  And you start to wonder if everyone thinks you are a fruitcake.  And the truth is maybe you are a fruitcake.  Maybe you always were.  But you can't help but think that seeing them everyday is starting to make you feel especially fruity.  I'm sure this ending part would have been especially difficult for me regardless, but three things happened simultaneously that made me feel so pushed.  1st was the realization that there was no way Cheetah was going to make it home for the holidays.  She has been a star up until this point and nurses and family members kept telling us she'd for sure be home by Christmas.  2nd was the end of the family help gravy train.  We were so lucky to have Dr. J's mom here for five weeks, followed by my mother, followed by my brother.  And then we were alone and our scheduling just got so much tighter.  3rd was having my ability to feed my baby taken away from me.  It was a step forward to almost being home and to having a "real/normal" relationship with my child and having it snatched away was a major step back.  I think any one of these things would have been difficult to take but having them one on top of the other...well you end up with this fruit salad.  FORGIVE ME!   Yesterday I went to the hospital midday.  I had spent the morning making cake balls for Gigi's birthday and I wanted to be home to celebrate with her in the evening.  When I walked in the door to Cheetah's room they had already started her feed.  The nursed asked me if I was planning on non-nutratively nursing her and I said no because I didn't think I had time to pump.  But when I picked her up to hold her she freaked out rooting and fussing and so I put her down and quickly pumped and then picked her back up to suckle.  The nurse stood over me and pointed out the points when her breathing was tachypnea.  It was ridiculously stressful.  My eyes kept flitting from her to the monitor and whenever the respiration line would go over seventy my shoulders would tense up just a little more.  By the time she was finished I'd created some nice sized knots in my back and something that I'd so looked forward to has become a half hour of mom torture.  Why do we do these things to ourselves?  I hoped today would be better but it was not so.  Today I went to the hospital while Dr. J took the kids to church. Once again Cheetah's feed was a disaster.  She was all over the place, although this time she was even erratic in her sucking.  She'd had an eventful morning though when the nurse and resident thought her belly was hard and spent the early morning getting x-rays and working her over.  So I guess I can't completely blame her for not bringing her A game.  Turns out she's just gassy.  I wonder if insurance companies every get ticked off over having to pay $1000 to find out some baby suffers from flatulence.  They are out some good money and I was out a good feed.  I read all this stuff that says one day it will just click for her, and what looks hopeless will be her coming home really fast.  The rational part of me knows that this has to be the truth, the mother part of me, which long ago I realized was complete unrational wants to kick the rational part to the curb.  I can't help feeling like I've missed the first two months of my daughters life, and trying to grasp glimpses of it I've missed the last two months of my other children's lives as well.  I long for normal and pray the Lord sees fit to bestow upon me just a lazy, boring Saturday curled up with all my kids.  I was in doctor daddy's car driving out to the hospital today.  He always has the Christian station playing and the song Breath of Heaven, Amy Grant came on.

In that moment I felt like my heart had broken open and the song of my heart was filling the car.

I have traveled many moonless night
Cold and weary, with a babe inside
And I wonder what I've done
Holy Father, you have come
And chosen me now
To carry your son

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone,
Must I walk this path alone?
Be with me now
Be with me now

Chorus:
Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Light up my darkness
Pour over me your holiness
For you are holy

Breath of heaven

Do you wonder as you watch my face
If a wiser one one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me


Do you wonder, as you watch my face...if a wiser one should have had my place?  I offer all I am father but it isn't much.  Help me be strong.  Help me.  Breath of heaven, hold me together.  Be forever near me.  Light up my darkness.  Pour over me your holiness.  Must I walk this path alone?  Be with me now.

5 Years Ago Today ...

After an easy 7 hour labor, cheeky and spunk entered my life topped with a whole bunch of hair.  I knew from the second I got married I was waiting for a son and I love him dearly but the birth of my first daughter Gigi fulfilled a life long wish.  I am the oldest of four girls and I knew pretty much from childhood that my life would not be complete without a daughter of my own.  Gigi entered the world full of piss and vinegar, screaming out her little lungs, her face bright red with the effort, Dr. J and I had to laugh when we saw her full head of hair.  From birth she was ultra aware.  She never behaved in typical newborn fashion but instead was exceptionally strong, holding her head up and constantly watching the goings on of her brother.  She was a horrible eater.  Only getting what she needed to be satisfied in the moment, shortly needing more. She was a nightmare to co-sleep with.  She would scrunch and turn until she had managed to get herself perpendicular to the bed.  She'd would lay wide awake and claw at my face as soon as I fell asleep.  She was always on the move.  She was walking right before she turned eight months old.  She could hold her body weight up on the monkey bars at ten months.  She never had a poop diaper after six months but would instead hold her poops until I put her on the potty.  As a toddler she moved into a grouchy phase.  She didn't talk until she was three years old and when she wasn't able to get her point across would rage through the house like a wild animal.  It was a difficult time for both of us and I prayed constantly for her to find her voice.  By four she was finally communicating and had started to grow into her name.  Not the most attractive baby, my daughter has grown into a child of grace and goodness.  She is a long legged beauty with an infectious smile and half moon eyes that light up the room.  Her birthday fell right smack in the middle of my own personal crisis.  Mom was gone half the day and the party she had longed for never materialized, but instead of being bitter she has spent the day in play, laughing and entertaining Peach, singing songs to us all and fill the house with laughter and light.  I love my darling Gigi.  She is a bright spot in this world and I'm so grateful I was blessed to be her mother.  

Preemie Life - Day 49 "I wish you could appreciate all these little victories..."

my darling husband said today with his arms wrapped around me.  The poor man has been working hard, working the doctors, reading the research, arguing the points.  He's managed to score non nutritive feeds and a speech evaluation after just three days instead of a week, and these are accomplishments.  While I am a blubbering mess of tears and anger, a person who I kid you not said straight to the teams faces, "I will follow your plan, you don't have to worry about that, but that doesn't mean I like any of of you," he has worked so hard to try to voice our concerns with kindness and the authority of research.  He has been in the tough spot of advocating for our daughter, negotiating with the team, and trying to appease me.  It is difficult work to be sure.  He has gotten some compromise and actually put in the hands of the doctor, research coming out of the University of Utah that has potential to change the entire feeding structure at the hospital for the better.  And I wish I could be more appreciative but I just feel broken, crushed under frustration, stress, and disappointment I can barely remember what it is to be happy.  At breakfast this morning my husband said, "Sweetie what is the deal with all the sugar cereals?"  I mean we've been eating lucky charms for two months straight and I'm the girl who gave up all processed sugars for a year, and I turn to him and say, "I'm depressed and if you have to know the truth I ate three ice cream sandwiches in less then five minutes for dinner last night."  This is the crazy my poor husband has to deal with.  As I drove home from the hospital last night I told God I need a miracle but I felt like a child writing out a list to Santa.  How ungrateful can one be.  I have four beautiful, healthy children but not being able to sit a room with all four of them, well it's getting exhausting.  And because just reading this makes me depressed here is something I saw yesterday that made me laugh my head off...because sometimes you just really need that kind of laugh.  So enjoy...I don't approve of the kid at the end but the rest is so funny.

Preemie Life - Day 48

Like a warrior for battle I prepare my arguments. Full of frustration and fear, righteous indignation on my side I gather my troops for the right to breast feed. Two non nutritive feedings is what I've been granted. I look my struggling rooting daughter in the eyes as I dress her after a weigh in and wonder how for either of us that can possibly be enough.

Preemie Life - Day 47 - The Doctors Giveth and the Doctors Taketh...

And in a freak moment of clairvoyance, yesterdays post predicted today's outcome.  In our daily doctor call we were told that the mighty powers of white coat have decided that Cheetah can no longer breast feed until the speech therapist and doctors are certain that she is not microaspriating, and if for one second you might think that I am ok with this piece of news, let me clear up the record by saying rest assured, I AM VERY ANGRY...think black bear mama with a baby cub, think mother Buffalo, think hippo mama, think large animal who is totally capable of maiming/killing another animal.  There is this small little rational piece in my mind that is trying to reign in the whole parade and say "Well maybe they know best."  But then even that little tiny bit has doubts because the truth is no one has ever even bothered to watch my daughter breast feed and this decision was made in it's entirety by trying to guess at behavior by looking at readings from the monitors and one speech evalue today where they gave her a pacifier dipped in milk.  And so rational mind is definitley in a losing battle.  Doctor hubby says to me, "Well what are you thinking, what do you want to do?"  And I'm thinking, "What does it even matter?"  Because the truth is it doesn't matter for one single second what I think.  This child is owned by the hospital and they could care less what someone so low as the actual mother thinks.  They want us to come in this week so that we can understand what they are doing and my husband says, "Well tell them your concerns and maybe we can change their mind."  And I laugh so hard I cry and say, "You know I'm, married to a doctor.  It is impossible to change their minds.  They are always positive they are right."  And we both just have to smile at that.

Preemie Life - Day 46 A Better Night

Last night was definitely a better night.  Not only did I wake up on time, I woke up early.  The morning nurse had told the evening nurse about me being upset the night before and so the night nurse came in every three hours to see how I was doing.  Every time she opened the door my little darling was nursing away or sleeping blissfully full in her mama's arms.  It was a much better night!  This is going to seem totally irrationally but you really do just have this fear that they will take things away from you.  You are the parent but the parent of a preemie has almost no say.  Everyday people in a gaggle of white coats and blue scrubs make decisions on how to proceed with my child and every day they dictate to me what is and is not allowed with her.  The nurses are then in place to make sure that things go according to plan.  It can be quite frustrating.  I'm thankful for the nurses.  They are kind and funny, they take their jobs seriously, and they are loving toward my child but I often find myself angry or resentful toward them.  It's not rational and I try to keep it under wraps but when you want to be with your child and you can't be you can feel resentful toward the person who is.  I also feel angry about the lack of choices I have.  The inability to decide what is best for my own child and family.  I think a lot of it just has to do with feeling out of control, a feeling of helplessness.  It makes me feel more sympathetic toward my toddler.  I also have feelings of fear.  Fear that they will decide that I'm not worthy of being her mother and will take things away from me.  Keep me from holding her, restrict my ability to feed her, keep me from taking her home.  Fear is a feeling that I really hate to have.  It is another feeling that sometimes changes to anger.  The internal conflict can be overwhelming and I apologize to anyone who has been on the receiving end of my mess.  I'm sorry.  I have to take comfort in her continued health, in the real help that the medical staff are, in the fact that this will end and I will hopefully be a stronger person on the other end.  Hope, I'm grateful for it.

Preemie Life - Day 45 Thank goodness for dads!!!

I did most of the Christmas shopping already...trying to deal with Christmas, sleeping at the hospital at night, taking care of kids in the day, cleaning the house...well I knew I wouldn't have much time to do stuff once my brother left on Wednesday.  So I tried to get it done early, but there are some things mom's just don't understand.  I had bought a remote control car for Captain E.  If it was a letter it would look like this..

e

Dad and I went out today and got a different remote control car.  It looked like this.....

E

Let's just say that dads have a better feel for scale!!!!!!

Preemie Life - Day 44 View from the Door

Yesterday we took the kids with us when we went to the hospital.  On the way there Peach kept saying, "We're going to the "hosbital" to bring our baby sister home."  Oh so sad, but I decided in that moment these kids absolutely had to see their sister again.  And so when I got to the hospital I asked the nurse if it would be ok if I brought Cheetah to the door so they could see her through the window.  We unhooked Cheetah and I carried her to the big doors of the Progressive Nursery floor.  The kids came to the other side and the nurses swung the door open, and for the first time in over forty days my kids were able to see their baby sister.  "Here head is so small, like a little tiny baby doll," Captain E said.  "Oh she is so cute," Gigi said.  "That's my baby sister, that's my baby sister," Peach kept repeating over and over.  They only got to see her for about a minute, but it made me feel just a little better.

Then last night I had major bad mom moment.  Cheetah is on a 9,12,3 feeding schedule.  While I'm sleeping there at night I wake up fifteen minutes to the hour so that I can get up and do temp and changing before I feed her.  Last night I feed her at 9.  Then I feed her at midnight.  At 1:30 she would not sleep and so I briefly nursed her again.  The next thing I knew it was 4:50.  I had completely slept through the three o'clock feeding...FOR THE LOVE....oh my goodness.  No one woke me up.  Poor baby.  So when the morning shift came in I had to ask them to please, please, please feed her at 8:30 instead of putting her on the end of the 9 o'clock shift, because there is no way she's going to make it until 9:30.  My poor little baby.  When I'm not there, she doesn't have anyone to hold her.  When I am there I she still doesn't have anyone to hold her, because I sleep through feedings and no one bothers to come in because they figure, "Well her mom is there."
:(

Preemie Life - Day 43 The Post I wish I was writing...

One month left folks until our baby's due date.  I can't believe how quickly eight months have flown by, and how this month is just going to drag.  Wow I'm so uncomfortable, I mean really.  Was it possible for me to get any more stretch marks or any bigger?  I'm pretty sure this is the heaviest I've ever been !  It is getting hard to sleep through a whole night, all the tossing and turning to find a comfy position, and the swollen feet and peeing every time I sneeze leave much to be desired.  I'm so happy to not be throwing up anymore though.  Man those first two trimesters see me and the toilet becoming a little to familiar.  And it's nice to have my energy back, although I'll admit this ever growing bump is getting hard to carry around.  Last week at church I got caught between one of the bishopric members and the pew and couldn't get through.  How embarrassing.  Getting a little anxious about the upcoming birth.  Hope the water helps ease the back labor.  Wouldn't it be nice if the little one choose to come before the end of the year...give these aching feet a rest and a nice little tax break!  Can't wait to meet this little baby!

At the ward Christmas Party last night Dr. J and I realized it was exactly one month to Cheetah's due date.  I had a little laugh when I realized just a different set of circumstances and this would have the post I would have been writing :)

Preemie Life - Day 42 Five Week Old Video

So I can say that my daughter definitely does not like to sleep during the hours of nine and midnight...which would probably be ok if I wasn't trying to get at least a little sleep in there to make up for all the crazy driving around I do.  Last night I spent most of my night sleeping in the hospital recliner....I'm thinking this is going to be a must have for this little one.  Tonight for our Advent Activity we are going to the ward party, and then I'm heading off to the hospital.  Just a week left of this crazy schedule and then Davy will be gone and Dr. Daddy will be on night shift and it will be Christmas and the kids still won't be allowed in her room and this schedule won't work anymore.  I was really stressed about it.  Like, she had to get it right this week and next and come home because I just couldn't let this happen.  And then I just let it go.  You know ideally she would and I'd bring her home and my kids Christmas vacation would be a dream of just hanging out in the house with the whole family.  But I realized it is up to Cheetah and I can't force her, beg her, or really do anything to help this along and so I just had to let it go.  I'm doing the crazy schedule this week and next to give her the best chance but if it doesn't work and she has to go on the bottle and she doesn't come home for Christmas and I can't go and see her nearly so much, well it is just going to have to not be the end of the world.  There is one month until her due date and I have to hope that for sure she'll be home by then.  

Preemie Life - Day 41 First Bath

This whole scheduled eating thing isn't all it is cracked up to be.  Turns out my child has zero interest in sleeping between the hours of nine and midnight.  Turns out my child has zero interest in being asleep between the hours of midnight and six.  Unfortunately she has to eat during one of those times and I'd like to sleep during the other.  Babies :)  Last night cheetah was having trouble with her temp, it was a little low and then we heard her sneeze a couple of times.  It could be nothing but we are now on high alert watching for a cold.  Preemies are so interesting, you're constantly watching every little thing. I guess it makes me a baby stalker.  On Sunday Cheetah got her first real bath.  We had to wait for her umbilici to fall off and it took longer then any of the other kids because of the lines they ran through it.  Dr. J actually was the first one in the room and they offered the bath to him, but I think he knew I was feeling a little down because he asked the nurses to save it for me.  It's kind of funny.  All of other kids I was the first one to hold, but with Cheetah I offered the chance to Dr. J because he was struggling and I thought he really needed the opportunity to calm himself down.  Then with all the other kids Dr. J was the first one to give them a bath, but I think he recognized I needed it, and so he saved it for me.  And so our baby got her first bath.  Don't you love the tub.  Seriously someone ordered a bunch of Rubbermaid containers, put thermometers on them, slapped on a label and sold them for a ton to NICUs around the country.  Totally ridiculous and also an amazing money maker.  Wish I would have thought of it.  She hated her bath.  Some crying, some quiet acceptance.  It was fun and she smelled so good after.  I love that new clean baby smell.  

In the rest of the house.  Yesterday Gigi made an entire meal of lettuce.  She is so weird. I predict she will be vegetarian by eight.  Captain E brought me back 28.25 from secret Santa.  I'd given him 30 to buy gifts for the family at the Santa's Workshop at school.  He decided he only needed 1.75.  He gave me the rest of the money.  Turns out he's just like his daddy...frugal.

Preemie Life - Day 40 The roots of sibling rivalry?

So this momma is tired.  I mean I just am.  My schedule is a little nuts and that probably has something to do with it.  It's made possible by the likes of Dr. J, my little bro who happens to be present at the moment, my friend Jamie who takes Gigi to preschool ever day, the nurses at the hospital, and glorious friends who bring dinner three times a week to take some of the pressure off.  Otherwise we'd be sunk...or a least a little more haggard and dirty.  I think part of the problem is trying to get stuff together for Christmas.  I don't want it to be a total blow out, but it is taking up some of my free time (ie, nap time).  So right now this momma is a little tired and while she's functioning fine she isn't always functioning happy.  For proof ask Gigi who came up against momma when she didn't like the shirt choices she was offered or Captain E who was chewed out for staying in bed and not getting dressed this morning.  Mama's fuse is a little shorter then normal.  And then you think about sibling rivalry, not only did your little sibling come in and take some of your time with your parents, your toys, your possibility at the biggest cupcake, etc, but they also stole your mom and replaced her with captain grouchy pants.  What a way to start a relationship :)

Speaking of new relationships, how about Cheetahs and her mouth only feedings...not looking like the best one yet.  We had to pull back on some of the feedings and do some supplementation with the NG tube.  Poor little Cheetah was just getting exhausted.  To go from having all your food passively given to you to being expected to provide all your food for yourself in a week, and continue to gain weight was a little much for the poor wee one.  She had lost about 20 grams in her weigh in last night.  It is hard to know if this is actually a set back or if we just pushed her a little bit to hard.  She is still a good nurser and I really enjoy that time together although I'd prefer it in my own bed with my hubby beside me.  We'll have to see how she does today and what her weight is this evening.

Preemie Life - Day 39

For those of your following this blog, last night was a success.  Yes I'd forgotten how little sleep you actually get feeding a "newborn", yes the sheets were itchy, yes it was hard to fall asleep with so much light and noise but we worked it out and were very successful.  1) You just get used to not sleeping.  2) Exhaustion makes it easy to forget things like itchy sheets.  3) Thank you iPod.  Listening to Enya was enough to relax out the noise of the nurses and the equipment but not to much to block out the sounds of Cheetah.  It is amazing to me how as a mom when you are with a baby you just start sleeping much less soundly, always on a alert for what needs to be done!  She did four feedings last night.  She did have one Brady during two of the feedings but they were both short and she recovered almost as it was happening.  She did have some difficultly staying warm last night but I think that's because she keeps working her arms out of the swaddle and pulling her hat off.  Silly baby!  In an effort to keep the holiday spirit alive and well for our other children we've been doing our activity advent calendar.  Totally loving it!  Not much makes kids happier then crafts.  Here we are enjoying a a few.

Making bow wreaths   

 Cheetah in on the Holiday Fun!

 Candy cane reindeer.  Thank goodness for low heat glue guns.  Everything sticks and kids don't get burned putting stuff on!

 Uncle D getting a little more creative.  

 Dr.  J staying a little more traditional   

 G following D.

 E going for a more is more theme!

Even Peach enjoyed getting in on the glue gunning action!

A little video action of our Santa dice game.

Preemie Life - Day 38 Feeding Cues?

Dr. J rounded with the NICU team this morning, and asked, "Can we please feed this child more?"  "Why?" they wanted to know.  "Because she is hungry."  "How do you know?"  "Oh I don't know, the waking up early, the crying, the rooting, the fact that she frantically tries to eat anything that gets near her mouth."  Sometimes trying to communicate with doctors, even if you are a doctor is a difficult business.  But they listened and I now have permission to feed her on cue (when she is hungry) 3-4 times a day!  So yeah for baby Cheetah!  I'll be staying from now on at night to see if we can't help her build up here feeding muscles.  That means no more sleep filled nights for me.  Up every three hours or so like a normal parent.  It should be absolutely wonderful :)

***For the sake of clarification, everything underlined was said by Dr. J with the exception of the "Oh I don't know", but it wasn't said all snarky in the way it is presented on this blog.  That's the way I was thinking it.  Instead he presented this information in a professional, more humble manner that took longer then one sentence.  I happen to know this because 1) I was standing in the room listening, wishing they would hurry up on rounds so the nurse could come in and I could start Cheetah's feeding and 2) the nutritionist later told me she was silently cheering in the background because his arguments were so well presented there was no other choice but to allow her to breastfeed on demand.  Also Dr. J was right, the correct spelling is cues, not ques.  What can I say, I'm a horrible speller and proof reading these has never been high on my priority list.  But in fairness to me I've never been comfortable with cu saying the q sound.  Finally I didn't remove Dr. J's comment because I was feeling snarky, instead I removed it because he broke my cardinal rule of keeping the names off the blog.  Sorry honey it is the rule :)

Preemie Life - Day 37 Because It Makes Me Laugh

I'm posting this story because every time I think about it I laugh.  So family member who this happened with please don't be embarrassed or think I'm mad at you or apologize for anything.  Thinking back on this has kept me laughing for two days straight.

I was talking on the phone to a family member who I love dearly.  She asked me, "So how are you doing."  And because she is family and I don't feel the necessity to give the "fine" that most people expect when they ask you the generic question of how are you doing, I responded, "I'm doing horribly," and I started to cry.  And she said, "No I didn't mean your emotions sweetie, I'm asking about your healing, you know your body and your c-section scar."  And I kind of choked it back because it was so funny and awkward.  "Oh," I said, "Um I guess it's doing ok, healing up nicely."  The conversation ended soon after that but every time I think back on that awkward choke I had as I tried to switch gears I just bust out laughing.  Because it was so funny :)

Preemie Life - Day 36

At all of 5lbs 5ounces the nurses on the floor call Cheetah, "Little miss small yet mighty."  Sort of reminds me of the beginning of a laundry detergent jingle.  Our two feedings went well today.  No Brady in the morning, one in the evening.  She was fussy after I put her down this evening.  I picked her up thinking maybe she needed to nurse some more but no, she instantly feel asleep.  How do kids do that...recognize the second they are in their parents arms (time to sleep), recognize the second they are out (time to freak).  We took the other kids bowling today and much grouchiness ensued.  Interestingly enough they were happy during "clean the house time".  I'm starting to think my kids don't enjoy "fun activities".  Cheaper for me I guess :)

Preemie Life - Day 35 Is Isn't Over....

With my brother around playing guitar I've manged to fulfill my life's wish of having my own theme track.  I've always been jealous of TV shows in that respect.  Mostly my days are full of Johnny Cash (D enjoys trying out songs that highlight his laryngitis but another favorite is Adele's "Someone Like You."  Surprisingly the tract runs through my mind almost nonstop.  I feel like it is my mantra.  I love her voice and her ability to connect with the deepest part of our human emotions and while I've outgrown the "looking for new romances" part of my life, heartaches has become my constant companion.  My favorite lines, the ones that speak most powerfully to me are...

'You'd know, how the time flies.  Only yesterday, was the time of our lives. We were born and raised in a summery haze.  Bound by the surprise of our glory days.  I hate to turn up out of the blue uninvited, But I couldn't stay away, I couldn't fight it.  I'd hoped you'd see my face and that you'd be reminded, That for me, it isn't over."

And that pretty much sums up this preemie life for me this week.  Today when we were visiting with the doctor she told us that Cheetah is growing nicely and that they are moving her from straight iron supplementation to a general poly sol vitamin and that instead of being on human breast milk fortification they will be moving to just a general formula order if by chance they run out of breast milk, which if you could see the state of both my freezer and theirs you'd know is quite unlikely!  It was fairly good news about her general progression but then Dr. J had to spoil the moment with these words, "So do you think she's going to come home before Christmas, what are the odds, can you give us a percentage?"  And like that all the goodness was sucked from the room.  The doctor and nurse both got very awkward and evasive and as they gave us the run around about five days incident free and 48 hours of only mouth feeds, the nurse said, "It isn't likely, but we can always hope."  And with those words, the balloon of hope that I'd been carrying around in my chest burst and I started to tear up.  I looked down at Cheetah who I was nursing and thanked them both and luckily they walked out of the room so that I could have a moment to silently cry.  You see the difficulty in my life is that for me "It isn't over."  When I was a kid my mother was very strict about not allowing me to wear makeup before I was 14, but when I hit that point I became an almost constant makeup wearer.  When I married my husband he made me feel so beautiful in my natural state that I decided it was only necessary on Sunday's or special occasions when people outside the family were most likely to see me and make comments like, "Your looking tired, are you feeling ok?"  and so as a rule I never go to church without it!  But since the birth of Cheetah I haven't worn it one single day and I told my brother today it was because I just can't stomach the lie of it, because I am tired.  I am not ok.  I can't  handle putting on the face that it is.  I got snippity with my mom this week.  She was being enthusiastic, overjoyed at one of Cheetah's recent achievements, and I just felt overwhelmed by her positivity.  Don't get me wrong, I am happy for the achievements that Cheetah makes.  I thank Heavenly Father that she has been blessed to not have one single set back.  I recognize the miracle that is her birth and the fact that she flourishes like a hardy rose and yet at the same time I feel slightly bruised by the abundance of optimism because it builds in me this sense that she should be home, and she isn't.  She is still a half hour drive away.  She lives in a room of alarms and monitors.  Her cries are meet with the touch of strangers instead of being soothed in the arms of her mother.   And so I ask you to forgive me this flaw, this inability to pull myself out of depression, to have random fits of tears, to walk around like a tired, sad, zombie when I have a beautiful flourishing daughter, I know I should have more cheer, but for me right now, in this moment, it isn't over.

Preemie Life - Day 34 Irony?

Our resident came in today while both Dr. J and I were there.  "Hi," he says to my hubby, "I haven't had a chance to meet you yet."  "Oh we've meet before," Dr. J says, "Just under different circumstances."  And then he says nothing else, and the resident just looks at him blankly, it was probably only for a minute but talk about awkward.  Finally he figured out they've worked together before.  Dr. J thought it was funny.  I thought it was jerky.  I don't know why but I always want to protect all the residents, I feel all motherly toward them.  I guess it's because I want people to protect my hubby by being nice to him.  Not that I want to protect him, I wanted to kick his foot at that moment.  Cheetah just keeps growing.  She's getting little rolls on her thighs.  I've got to get a picture because it is oh so delicious.  I'm now driving out to the hospital twice a day.  With gas at 3.39 a gallon and time with my kids at a premium I'm really struck by the irony of picking a hospital a half hour away because it had midwives, not actually be able to use them, but getting stuck with driving out there twice a day.  Yes I think the Universe must have a sense of humor.

Preemie Life - Day 33, Growing Up

 Did I mention yesterday that my daughter weighs five pounds?  Well she does, five pounds, one ounce.  She has gained 2/3s her birth weight.  I was looking at her today, marvelling at how much she has changed in a mouth.  She is still tiny like you wouldn't believe but she looks like a real baby now, not just a little doll.  She is also doing so much better with her nursing.  Yesterday afternoon I was so frustrated I wanted to quit.  When your baby stops breathing it is so scary and the fact that I'd caused that, well it just had me really nervous.  I talked with the lactation consultant and she asked me to pump for 2 1/2 minutes before I put her on so the let down wasn't so strong.  She said, "mature breast like yours.. (this made me laugh for whatever reason...I guess I just haven't outgrown junior high) often let down very quickly."  And so last night after getting the ok from the resident to add a second feeding I went back to the hospital to try again.  This time I pumped first and when I put Cheetah on she nursed for 5 minutes and then feel asleep, no Brady's, no choking, just good nursing.  Then today at the noon feeding I repeated pumping first.  Cheetah nursed for thirty five minutes.  She was so successful that the nurse decided not to give her any of her ng feed.  I'm hoping for repeat success tonight!  It is amazing how much she is growing...just in case you think she might be getting too big for her britches though...

 Turns out she's still sneaking out of her clothes...and this happens to be a preemie outfit that her Grandma Jane sent her.  Cute outfit but I'm guessing it is going to fit for a bit longer :)

Cheetah isn't the only one growing here.  Dr. J had a birthday as well.  Being the overextended wife that I am I didn't get around to get the present I know he wanted and I planned to get :(  I did manage to give him a gift I bought last year but forgot to give him.  I also got two movies we loved this year during Black Friday sales.  We made a cake and ate some ice cream.  It wasn't much but we did want to recognize the man.  I love my hubby.  I like to tease him, he might not be perfect but he is perfect for me!  Happy Birthday to my sweet hubby!  I love you so much baby...at least five ironed shirts worth :)

 On the home front I managed to get the Advent Calendar up.  It is definitely looking like Christmas here and I'm getting excited.  Most of the Advent stuff is crafts and I found that my local dollar store had most of the supplies I need for cheap!  I also replaced some of the cards with activities like, going to look at lights, reading the Christmas story, or having a Christmas music dance off.  Definitely excited to try to have some more fun in this house!  It's about time if you know what I mean.

Preemie Life - Day 32 Killing Me Softly

Killing me softy with breast milk....today we had another breast feeding session and baby Cheetah had a major episode.  I knew it was going to happen.  I was holding her up to the breast, she was sucking swallowing, breathing and then she wasn't breathing.  "Breathe little baby, breathe," I said as I rubbed her back.  The alarms went off.  The nurse came in.  Finally she took a breath and then next thing I know she wants to nurse again.  But I'm not going to lie, my heart was racing.  The resident called me to tell me Cheetah was up to five pounds and they want me to try and fit two feedings in today.  So I'll be heading back to the hospital after dinner.  Through rain, through snow, through sleet and hail, I feel like I should join the post office.  Seriously though I'm a little stressed out about feeding tonight.  I know the breast milk is important, I want to nurse, but man watching the kid not breathe.....AHHHHHH!  Tomorrow is Dr. J's birthday.  I know what he wants, I want to give it to him, I see the chances of me getting it anytime soon as zip.  Poor Dr. J.  And then there is my advent calendar.  I wanted to put together and activity advent calendar but I just don't think it is going to get done.  I found this really cute one online....http://www.activity-mom.com/2009/11/2009-activity-advent-calendar-printable.html  I should be able to just print it off and do the activities.  I hope I can get around to it.  Advent calendar, birthday, laundry, figuring out what is wrong with the dryer, homework, clean bathrooms, nurse, nurse again...please don't expect much from me this year.  So Cheetah didn't get kicked or anything but let's just say I can relate to this poor mama!

Source: youtube.com via FeeFee,RN on Pinterest

Preemie Life - Day 31 A Planned Birthday That Wasn't

No pictures please!

My beautiful face free from distraction.

Today Cheetah is one month old.  It also happens to be the day they were going to induce me, because she is officially 34 weeks today.  She is topping the scales at 4lbs 15 ounces, which I think is probably about what she would have weighed had she been born today.  She happens to be anemic and so they've upped her iron supplement even higher, but what can you expect from a baby who almost entirely missed her third trimester, the time in the womb when babies make their iron stores.  Yesterday she was entirely episode free, not Brady's/apnea but today during our second ever nutritive feeding she forgot to breathe. I know these things are totally "preemie normal" but as a parent they are horrifying.  The monitors going off is one thing, the looking down and seeing your baby not breathing totally another.  And so I had to gently stimulate her back and she started to breathe and then promptly fell asleep, because you know drinking five mouthfuls of milk is just exhausting work.  When I came in today she'd pulled her NG tube out and so I had the privilege of watching them put it back in.  The nurse first wet in Cheetah's mouth and then stuck it down her nostril.  Gagging ensued both for Cheetah and myself for more than one reason.  Before they put the tube back in I picked her up and nuzzled both her checks.  It was the most unattached she's been since birth and I couldn't miss the opportunity to give her a little mama love.  I think back to those six weeks ago when my water first broke.  I wonder could I possibly have sat in bed this whole time.  It was what was expected and so I guess had I stayed pregnant I would have done it, but wow that really would have been torture.  Thanksgiving in the hospital, ick!  And what about more poor children, six weeks without mom at home.  That just doesn't even seem like a possibility for them.  On the other hand...what if I could have taken Cheetah home this week, oh how sweet that would have been.  I'm glad it wasn't a choice I got to make but instead a decision was forced upon me because I have a hard time knowing what I would have choose on my own.

What do you think of these rolls...I had them on the counter rising and a daughter who isn't always as gracious as she could be couldn't resist squishing the tops of almost half of them.  In sibling news we also had a sweet prayer from Captain E last night.  He asked Heavenly Father to help Cheetah grow and then said, "And please bless that she can be home with us for Christmas."  It is the major hope in our family right now.  The best gift we could receive is a family together.  Then there is Peach.  Today in the car she kept screaming, "Let me out, let me out!"  Finally she feel asleep.  As I went to pull her out of her car seat in her sleep she groaned out a final "Let me out."  Yes sweetie I know.

Preemie Life - Day 30 1st Nutritive Feed

Today I got a call from the resident, "Cheetah is giving all the signs that she wants to eat, so we've decided you can try a nutritive feed."  And so that's what we did today.  How much milk did she get?  I have no idea.  That's the one thing about nursing that is difficult you just can't tell how much your baby has eaten and we are in such a different position then with a newborn.  When a newborn is born the amount of time they spend sucking correlates directly to how much milk you produce.  They eat until they are full.  If they need more milk they suck longer and that stimulates more milk production.  Meanwhile we've got preemie girl.  For thirty days I've been pumping so my milk supply is far more then what she needs to eat in the day.  Then instead of being like a newborn that sucks until she is full, preemie girl sucks until she is to tired to eat, which happens really fast.  And so I put her on and for about five minutes she would suck and sleep, suck and sleep.  I know she got some milk.  I know she swallowed some, but how much it was, who knows?  After she ate I pumped six ounces of milk.  Not for the first time in my life did I wish that my breast were clear so I could actually see the milk.  I want my baby girl to nurse, but when the student nurse came in and told me that with her preemies she just pumped and then feed them by bottle because she wanted to make sure they got enough to eat, I totally understood where she was coming from and knew there was no way I couldn't say that I might not end up in the same place.  But for now, I'm hear, I'm trying, and I'm hoping my little girl will build up some stamina.

Preemie LIfe - Day 29 ROTs

Today I had an episode of ROTs (Random Outburst of Tears).  I'm really confused as to where this emotion came from.  Was it an overabundance of joy from our good news this week?  First off Cheetah is a champ when it comes to weight.  Last night she weighed in at 4lbs 11 ounces.  Then she's moved from the isolet into a normal newborn bassinet.  It means she's temperature regulating on her own and now losing weight in order to do so.  The awesome thing for us is it means that I don't have to ask anyone if I can pick her up and there is no restriction on how long we can hold her outside of her bed anymore.  Also uncle David came last night.  This morning when the kids saw him they went nuts.  Peach jumped off my bed, threw herself in his arms and refused to let him put her down for five hours.  Gigi and Captain E ran around the run in huge circles singing, "Uncle David's here!  Uncle David's here!"  There has been some concern by family members about uncle David's actually ability to help out but the important thing is the kids adore him so when I left this afternoon for Cheetah's non nutritive feed there was no complaints from the peanut gallery and when I came home they were relatively clean, feed, and definitely entertained.  Hard to complain about that!  The again it may have been feelings of disappointment.  When I went to change Cheetah today I noticed that her umbilical stump had finally fallen off and I felt this wave of sadness that it didn't happen at my house.  That she's now going to be able to have a real bath and I'm not going to be the one to give it to her.  That all her first thus far have been enjoyed by people other then myself.  Then there is the stress.  Net week we start nutritive feeds and I've made up a schedule that will allow me to be there at as many feeds as possible while maintaining some sense of normal for the kids.  It goes like this.

8-9 am get kids ready for school.
9am take Captain E to school, miss the 9 o'clock feed.
9-11 am play with girls and get GG ready to go.
11 am leave girls with David
12 pm - feed Cheetah, while my friend Jamie picks GG up from our home and takes her to preschool.
2pm come home from hospital, do home stuff.
3-4pm pick up Gigi and Captain E from school, miss 3 o'clock feed
4-8 pm homework, dinner, get kids ready for bed, then leave for hospital
9 pm - feed Cheetah
12am - feed Cheetah
3 am - feed Cheetah
6 am - feed Cheetah
7:30 am drive back home

I'm not sure how this is going to work out yet, but by driving out to the hospital twice, and spending the night there I should be able to actually breast feed her 5 of the 8 times a day she eats while still being there for my children in the morning and in the evening when they really miss me the most.  Yes I think it is weird that she is so scheduled but in the hospital with preemies feeds are almost like medicine and so you do what you have to do.  Looking at it right now the schedule seems a little crazy and to say I'm not feeling some anxiety over it would be a lie, but it will probably take a week or two to even get up to full feeds and then hopefully we'll only have to do it two or three more weeks.  Then there is the fear.  What if she doesn't outgrow the Brady's soon?  What if they keep her in the hospital until January?  What if she won't breastfeed?  I know I shouldn't feel this way, that I should just let it go, but with all the disappointments I've had, it feels like the most crushing would be if I can't get her to eat.  And so all these things are swirling in my mind, weighing on my chest and so today when I was chatting with the nurse and asked her what Cheetah does in the day when I'm not there I just burst into tears.  A full out ROTs to be sure.  I tried wiping my eyes but couldn't get it together and finally just said to the nurse I was sorry.  "Happens all the time," she said as she handed me some tissue.  As I walked out to the car I was grateful to be in a hospital where girls crying through the halls aren't a totally uncommon site and most people had the decency to just give me an encouraging smile and look down.

Preemie Life - Day 28

Anyone else feeling post thanksgiving weight gain?  Well Cheetah certainly is.  The nurses called today and told me she is now 4lbs 9 ounces and they are upping her feeds to 40mls every three hours!!!!  Amazing.  When we finally get to bring her home we are going to have a mammoth!  The kids are getting more and more insistent on their disappointment about not being able to see her.  What a weird experience this must be for them.  They see other kids with their babies coming home and it just doesn't make any sense to them why theirs isn't.  To kind of take the heat off we took them to the Children's Museum again.  This time was much more fun.  No crying, screaming, manipulating, and we only lost Gigi briefly once.  Seems like an improvement to me!