This is our story....The story of our journey as a family of four

Thursday, March 4, 2010

Easton's first week at a glance

I really wanted to update this more often to keep you all filled in, but
sometimes things just don't go as planned, and I'm only about a week behind so I'm thinking it's not that too bad....but here's a tid bit of whats been going on with E in the NICU, day by day....with pictures to show his progress!

Thursday, February 18 2010
   Easton pretty much just slept his first day in the far as breathing goes, he was on C-Pap which is a forced air flow, just to kind of remind him to breathe.  After being on that through most of the night he eventually was intubabted, then extubated, and was then just on a cannula.  He had an OG for feeds, and an IV for fluids.  All in all it was a mild day for baby E minus all of the changes in his breathing aids, which was actually a lot for such a lil guy.  We met with Dr. Li, and he told us that the actual leision was small, and that it looked to be lower lumbar, however his function level was not acting like it was a higher level.  What in the world we thought, but again, it was going to just be one of those wait and see situations.  He showed pretty good movement in his hips and his right leg, but again we had to wait and see.  This pic was taken at about 3:30am on Thursday so our babes is only hours old....and this shows his on the C-PAP.

Friday, February 19th
   Today was a pretty big day for our little was his closure procedure.  We got to be with him all morning, and give him pep talks, and we knew he was taking notes because his sweet little eyebrows kept going up and down.  I'm sure he would've opened his eyes, if only they weren't so swollen.  We met with Dr. Li and his resident, and they went through the whole procedure again with us.  He was scheduled for 11:30, and of course, as all the NICU nurses warned us, hospital time is always about 2 hours behind.  And so it was.  We took him downstairs at about 1:20, and as we stood in the OR hallway talking to the anesthesiologist, I don't know if I have ever been more scared.  He was just so little...too little to have to go through this, but we knew that it was what we needed to do for him, and so he was off.  He finally came upstairs about 4:20ish, and we got to see him once he was all settled.  There was our little man, all bruised up, intubated and out cold (which of course we wanted him to be for the pain aspect of things).  Of course his leision had a new dressing, so neither Cody or I ever got to see his back before it was the delivery room, it wasn't an option, and once they had it wrapped up, it stayed wrapped up to prevent infection. The only one that did was my mom because she happened to be down there when Dr. Li first looked at it.  For the rest of the day they kept Easton sedated and on pain meds to help keep him comfortable.  Today Grandpa and Mimi got to come up and see Easton for the first time :).  It was a big day for Easton, and the way we looked at it was well, together, we got the first big one under our belt.

Saturday, February  20th

He stayed intubabted from the surgery, and was given pain meds on a pretty regular basis to help keep him comfy.  The first time he really started to stir was at about 4:05pm....he opened his eyes as much as he could, but his whole little body was so swollen from the surgery and them pumping all of the fluids into him.  He had many visitors today,Grandpa and Linda, Kane and Amy, and Shan all came to see our little man.  He showed great movement in his hips, and some left leg movement but we were so unsure of the extent.  His right leg, which was the leg he moved more pre-op didn't really move much, but it was the more swollen of the two.  He was very sensitive to our touches, and I'm sure that it was because his little body just ached.  He was on an IV and was given lipids to help nourish his lil body.  On a Nae Nae was the first day that we got to see our Caidence since I had kissed her goodbye on Wednesday.  Kane and Amy snuck her into the cafeteria and Cody wheeled me down to see my baby girl!

Sunday, February 21st
    Ahh sweet day today.....sweet day of firsts.... today  was the day that Easton Kent really really opened his eyes.  We loved seeing those little peepers.  He held mama's hand tight, and he got his first 1/2 oz of breastmilk through the OG, and he tolerated it well.  Again today they just kept him pretty comfy with the pain meds, and he wiggled his tush all over the place.  We saw some left knee movement today, and again his right leg stayed pretty much the same with only slight movement, but we'll take it!  His legs just made me want to cry they were that swollen.  He can lift his head from side to side, which just shows how incredibly strong he is.

Monday, February 22nd
    Another sweet day.  We walked in in the morning and there he was, sunbathing.  We knew this all too well from Miss Caidence.  His bilirubin was up, but not too bad- but they put him on phototherapy to bring that down, as well as to help break up the bruising since it was so bad.  We met with Amy, the PT and she repositioned him a little bit so that he looked less like a frog on a window.  I massaged his swollen little legs for quite a while today to try to get the fluid out of them.  They were weaning him off of his pain meds, and they extubated him around 6pm, and put him back on a cannula.  He showed movement in both knees, but was much stronger with the left, but in all fairness he had been moving it alot more.  They were taking him off the lipids, and bumping his feeds up to 20mL every 3 hours via the OG.

Tuesday, February 23rd
   Today Easton got a pretty sweet little cushy bed to lay on.  Amy the PT called it the mashed potato bed, and it was really cool because you could form it any way you wanted.  After she played with it a while, E looked much more comfy.  Since he was extubated, his pain meds switched from Phentonol to Childrens Tylenol....yes that's kind of a huge difference, and the Tylenol was not cutting it, so in the morning they gave him a one time dose of morphine to help him with the pain.  His blood pressure was through the roof so this became a concern.  His team  of Dr's ordered a whole workup of tests to be done, which were kind of scary and a little overwhelming.  He had a renal workup done today to make sure everything was good with his kidneys, and that came back good, so that was a huge relief.  The phototherapy lights were gone, and they let his IV run out at 12:30, so sweet baby boy was relying on mama's milk to keep him nourished :) I did get to "hold" Easton up for a few seconds so that the nurse could change the pad under him, and Cody got to do the same thing at night! :) Now that the only tube he had in his mouth was the OG we got to see his perfect little lips.  They are so tiny, and remind us so much of his sissy's when she was little.
Speaking of sissy, she's been haning out at the Ronald McDonald house with either Cody or's a cute pic of her just hanging in the room, playing, and watching non other than "shturat".  She's doing pretty well with everything, and I'm not really sure she understands.  She will look at pics and say his name, but I don't think she knows that in just a short time, that picture is going to be a real baby, at her house.  But I know that she will be an amazing big sis.  She's already such a helper.  And I really can not wait for the day that they can finally meet <3.

Wednesday, February  24th
     Happy Birthday Easton... already 1 week old!  Today Easton had a few more tests done, he had an echo of his heart, which came back normal, and an ultrasound of his ventricles in his brain,.  His head circumfrence has increased 1 cm since birth so talk of a VP shunt started.  Cody and I were okay with that, we were almost expecting it, and it was tentatively on the books for Friday.  They up'd his feed to 30mL's so he is almost up to a full feed!  His blood pressure was through the roof during the night, so Chris (our favorite favorite nurse) talked his Dr's into giving him phentonol again....they were leery because he was only on the cannula, but they tried it to see if his BP really was pain related, and indeed it was- he was back down with means in the low 70's.   Because of this he did have a couple apnic spells, but it was due to the meds....sometimes you just can't win, but have to pick the lesser of 2 evils.  He is doing well though, and got his first wubbanub, and is up to full feeds!  Chris was really letting me get hands on today, with diaper changes and what not, and then the night nurse let me lift Easton onto the scale....woo hoo! It was the second time I got to "hold" our babes!

And that sums up Easton's first week of life.....he's been a very busy boy already, and has gone through way too much for a brand new baby, but he's done wonderfully.  He is such a strong, determined, amazing little boy, but we already new that of him from the pregnancy.  I can not begin to tell you how each day just makes us prouder and happier....really it's the littlest things that can really make your heart melt, like holding his hand and having him squeeze it, him talking to you with his eyebrows....even though we can't snuggle our baby like we are both dying to, we are still connected...and waiting for that day when we get the go ahead to hold him soooo tight.

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