Hard to be Zen.

Looks sweet, doesn't he.


So Mommy's turn to talk.  After accidently sleeping through the 11 pm feeding and waking up at 12:45 (ie now we get up every 2 hrs instead of every 3)  at 3 am I was feeling pretty Zen about the whole sleeping only a couple hours every night and that I would make it through this.  I held Sam for about 1 hour so he wouldn't spit everything back up and then pumped.  At 4 am I am washing the pumping supplies getting ready to start all over again at 5, and hear Sam making cute little noises and walk over to notice he had pulled out the NG tube.  Zen just isn't a state I should be get comfortable in I guess.

I am home.

Dressed and in my car seat


Well I am now home.  Tube and all.  More to come as Mommy settles in and can type for me.

39 and 3/7 weeks- 2-21-14

Sam and Baby Jesus

With Mommy's ring

Peek-a-boo.

Sam and Teddy

My new best friend, Teddy.  And he makes a great heartbeat noise as well.

Going Home Thursday!

Well on Friday I again gained back the 15 grams I'd lost, but Mommy was concerned I was becoming averse to eating overall so the put the tube back in my nose and fed me over the weekend.  I gained 55 grams both Friday and Saturday ( about 1 1/2 ounces).  On Sunday I lost 20 grams, but overall pretty good ( today about 4 lbs 15 ounces).

They also did a acid reflux test which was positive so now I am on a medicine for that.

Today Mommy, Daddy and the ICN team decided to give sending me home with the tube a try and see how I will do.  Mommy is going to learn how to reinsert it and my parents are going to try and prevent my brother, mad me, from messing with it.  I will have a certain amount of food to take in every 3 hours and if I don't meet it orally, I will get it via the tube in my nose.  My doctors think I will eventually take all my nutrition myself, but it could be a few more weeks yet, and that my family can handle my care at home.

Also had an MRI of my brain today, just in case, and it was fine.

So a pretty busy next few days.  Wish me luck and good sucking.

Lost Weight so home is a no go.

Well I lost 15 grams (1/2 ounce) today and thus don't get to go home any time soon and likely not until Monday.  The doctors say I much gain about 30 gram (1 ounce) for a least a couple days straight before they will let me go home.

No one is sure why I am not eating better and I am certainly not telling, but Mommy sure wishes I would.  They are going to do a test today to see if I have acid reflux and are going to try some new fortifiers to see if it is just I don't like the taste of the current fortifier they are mixing with Mom's milk to give it more calories per ounce and try a probiotic.

Wish me luck.

?? Going Home Friday

Well, I have now been without the feeding tube for 7 days and although I continue to go up and down almost daily with my weight I overall remain even with where I started last Wednesday.  (I was 2140 g last Wednesday and am 2150 today-that is about 4 lbs 11 oz either way).  I have not had any problems with breathing or my heart rate for 4 days now (The cut off is 5 day) and my hospital team feels there isn't a whole lot more they would do in the hospital than Mommy could do at home, so we are going to give going home a try provided all goes the same Friday.

Mommy is scared to death.  I think she has become a bit used to having the nurses in the hospital to lean on.  I explained to here that sometimes you just have to jump in and that I will be OK.  I will still be seeing my regular doctor every 1-2 days to make sure I am safe and at least maintaining my weight.  I will still need protein supplements to my food.

NG tube came out.

So yesterday I pulled out the NG tube (again, I do that about ever 1-2 days).  The NG tube is how they were feeding me through my nose.   The doctors chose to leave it out to see how I would do on my own, just taking food by mouth.  Per Mom, I did OK taking about half of what the doctors think I need with each feeding, but I still get tired very easily.  We will see how much weight I gain or loose over the next day and go from there.  Wish me luck and energy.

38 weeks gestation-I am now a term baby.

Me and my friend at 38 weeks.


So BIG day today I ate one whole bottle by myself.  It wore me out for the rest of the day, but I had to show them I could do it.  Everyone at the ICN was so excited for me and Mommy most of all. 

Daddy's Birthday 2-8-14

Happy Birthday Daddy.
 

2000 Grams on 2/7/14.

I now weigh 2000 grams today (about 4 lb 5 oz).  Mommy tries to imagine doubling her weight in less than 2 months and gets a bit scared, but is excited for me.  The Occupational Therapist came by today to check out my eating and said I am still immature with my suck and probably have reflux.   People, people I have been trying to tell you that, just give me some more time.  Mommy and Daddy hope I learn to eat soon.

37 wks gestation pictures

2/5/14 Watch out Jesus I am growing.

 

2/5/14 Talk to the hand, Mom.  (My favorite pose.)

Age 47 days. Corrected gestation 37 wks 2 day.

Sorry I have been busy lately trying to get this eating thing down.  I am doing well and gaining weight (was 4 lbs 3 oz yesterday) slowly but still can't seem to get enough energy to take my food by mouth.  I don't understand why everyone makes such a big deal of eating by mouth with the tube in my nose I don't have to work at it at all.  They doctors think I will get the hang of it soon but just need to grow a bit more so I have the energy to eat.  Right now I take about 1/3 of my food my mouth.  They did put me back on a nutrition supplement with milk protein and I have not had any bloody stools but Mommy is still on the dairy free diet and boy does she miss cheese.                          

Please keep your fingers crossed that I get the hang of eating so I can come home soon, I think it is getting hard for Mommy to watch all the babies younger than me (about 35-36 wks) go home and I am still here.  The doctors say some babies are just slower and it will just take time.

I still have a heart

Daddy's first time feeding.

Hopefully my last IV.

36 wks gestation.  With Mommy's ring.

36 wks Gestation.  Baby Jesus doesn't look so big now.  This is my Fat Albert pose with the hat.

Take that.  1/29/14

2/4/14  37 wks gestation.

Eating again.

Mommy fed me on Thursday.  Holy smokes what a lot of work.  I could take about 2 sucks and then get tired, but I am sure I will get better.  We tried to breast feed again on Friday but still a bit of work.
Saturday, Mommy just needed some snuggles.  Fine with me.  Sunday Mommy and Daddy came to visit.  I really like Daddy's deep voice and just settled right in to sleep snuggled up to him.  I am slowly able to eat better, took 20 ml with the bottle last night but still get tired easily and then forget to keep my heart rate and breathing going too.  I continue to gain weight and am now 3lbs 14oz.  Also am now 5 wks old.

1-23-14 Nana holding me close.

Look everyone no tubes.

So they took the suction tube out yesterday and hopefully today will feed me again.  I know I am getting nutrition via the IV but it just isn't the same and Mom keeps torturing me by smelling like milk.  X-ray shows some air again and they still are unsure what caused the bloody stools, but they feel I look so good they are going to let me eat again (although then they will have to put the tube in my nose again).  Wish me luck.

1/22/14 I am now 1 month old and look no tubes.  


Just ignore the IV's in my leg.  But check out my chubby cheeks.  I am now about 3 lb 3 oz (1650 g)

1-21-14- 35 wks gestation and 4 wks old

I am now 4 weeks old.  They are still not letting me eat and boy am I upset, I want a full stomach, people.  What's worse my Mom keeps pumping milk beside me and taunting me.  I know the sound of that pump.  But the x-ray is better today with no more air in the bowel.  There is a suction tube in my tummy, but no need for surgery yet.  Hopefully they will let me eat again on Thursday on my new Milk free milk diet.

More pictures.

 

Not very flattering but only one of all 4 of us.

Sam, leave the NG tube alone.

Now I can be in a big boy bed.

34 weeks gestation (3wks old)

 

35 wks gestation (4 wks old)-See my chubby cheeks.

1-10-14 First Snuggles with Nana.

1/12/14 Holding Daddy's hand.

1-12-14 First Snuggles with Daddy.

1/20/14

No changes today.  Sam still looks great, he is just not getting fed, and he is not pleased about it.  I am pretty sure he has figured out that when he hears the pump beside his bed he knows that means food will be coming soon and he was not pleased with me when the  food didn't come.  No more bloody stools.  He will continue to be fed via IV for 3-5 days more and then will try breast milk again.  They have also put me on a dairy free diet to see if this is a possible cause.  Pretty odd that Sam will be on a dairy free milk diet.

Pictures

12/22/13 Mommy getting ready for surgery.

 

12/22/13 Sam's first picture

 

 

12/27/13 Baby Jesus for size comparison.

 

12/27/13 Sam and Mommy's hand

                                                  

12/30/13 First Christmas Ornament

12/31/13 Kangaroo Care.

1/1/14 Sleepy Family Morris

 

 

1/1/14 Sam and Aunt Jen's Hat.

1/4/14 Snuggling with Mommy and Jordy.

 

 

                                                    1/4/14 The brother first meet.

Little GI setback.

Kind of a bummer day.  They found blood in his stool.  In preemies this means possible NEC (necrotizing enterocolitis).  It can mean a pretty serious infection of the bowels. So they stopped all his feeding by mouth and put him back on IV nutrition.  As with most things Sam the doctors can't say more what this means and we just have to hurry up and wait-getting more x-rays and lab tests.  At the very least it means another extra 7-10 days in the hospital.