My life as a Mommy of 4 little boys

Wednesday, June 29, 2011

Results from Preston's ultrasounds

Good and bad news came from the ultrasounds he had done on Monday.

Good news first...

His hip ultrasound came back completely normal.  That has always been one of my biggest fears for all of the kids, that they would end up with the same hip problems I had.  They are hereditary but it's more likely that a girl would get them than a maybe it's a good thing we have all boys :)

Bad news....

Both kidneys showed some abnormalities.  So the issues found in his first two ultrasounds in the NICU were NOT from the pain/sedation meds like they originally thought.  The right kidney shows some reflux but also an enlarged valve and his pediatrician said she didn't know why it would be like that and neither did the radiologist that looked at the report.  Then in his left kidney she said it looked like it wasn't functioning properly, not letting urine flow through like it should.  So that's all the information she could give me today, she said she didn't know what would be causing it so she is referring us to a specialist.  We should be getting a call either this week or beginning of next with our appt with the urologist.  Praying it's nothing serious and can be easily fixed...but seeing that the neither the radiologist or pediatrician knew what could even be causing it makes me think it's probably not some normal easy thing.

But he was weighed and measured today...he is now 8lbs 13oz fully clothed and right over 21in.  They said that overall, height to weight ratio, it puts him between the 5th and 10th%.  But his height is like 40th% I think they said and weight is 29th%.  So he's our little thing.  He was 7lbs 9oz 2wks ago but that was completely naked so I'm thinking had they weighed him naked today he probably would have been about 8 1/4lbs.  So he hasn't gained too much but he's doing well, not losing at least.  I think he's starting a growth spurt, he didn't seem to really do one at 3wks which is normal but he's 4wks now and today he's been eating about every 1.5-2hrs and usually it's right at every 3hrs.

He wasn't pleased spending so much time in his car seat today and it was seriously stressing Casen out.  I had to pull over a couple times to deal with him because I of course won't let him sit back there and cry but as soon as he'd start up Casen would be begging to unbuckle and help him.  He looked at me in the rear view mirror with tears in his eyes and said " I just really wish I could do something to help him" it was so sweet <3  All of the boys adore Preston but I think Casen is the most..umm what's the word...I guess you could say mothering towards him.  He wants to take care of him and it breaks his heart to hear him cry even for a second.  If I'm busy cooking or something and he gets upset Casen will take care of him and he's so gentle with him.  He really is amazing with him.  The other night I was cooking and had raw chicken on my hands and Preston was in his swing and started crying so Casen tried to give him his paci and he wouldn't take it and after trying a couple more times he started to take him out of his swing and I told him not to but he looked back at me with complete panic on his face and said "But it's the only way!!!!"  I died laughing it was so funny lol.

Maggie is really awesome with him too.  If preston is in a room you can guarantee Maggie is in there somewhere too.  If I lay him on a blanket on the floor she lays right next to it.  The other day he was napping in his crib while I was cleaning the kitchen and he started to cry and she ran in there and ran back to me crying, like to tell me he was upset as if I hadn't heard him.  It was sweet.

Preston is definitely one loved baby.  I just wish all his health issues would get resolved.  He's a month old as of tomorrow and has been through so much, he deserves a break!

Oh and Casen is having some issues with his ear.  It's all dry and cracked behind it but now all inside is THICK scaly dry skin, it's awful!  It's almost blocking his entire ear canal.  So she told us what cream to use on that, hopefully it fixes it soon because it keeps breaking open and it really hurts him :(

And my car is messed up.  On the way home it started overheating...BIG Mark and Brandon looked at it, added water and fixed it temporarily but it has to go to the shop tomorrow for that and my brakes need to be replaced.

I swear it never ends, we need a break

Monday, June 27, 2011

Only took 25 days...

But Preston's cord finally came off last night at 25 days old!!!  I was sure the thing would never come off.  His belly button isn't fully healed, it has some gooey cord looking bit down in there far, I don't want to mess with it and cause him to start to bleed.  But I did go ahead and give him his first bath last night!!!  I'll hold off on another until it looks like that has fully healed but I just couldn't wait any longer!

He seemed to really enjoy his bath after the initial shock of being put into the water.  I was using a wash cloth to put warm water over him and he felt it go past his hand and he grabbed it and brought it straight to his mouth and started sucking on it, drinking the water.  I let him do it for a minute so we could get a video, it was so cute haha, but then I took it from him and he got really mad...the rest of the bath was a screaming fit.  But overall not bad for a first bath haha

Tomorrow is his renal ultrasound and hip ultrasound.  We have to be there by 12:45 and it's an hour away, they say expect the appt to take 1.5hrs which I'm sure will be longer, everything always takes longer than expected at the dr.  But please keep him in your thoughts and prayers tomorrow.  Looking for the all clear on his renal ultrasound, that all of his previous issues have resolved and good results from the hip ultrasound.

I've been thinking back about Preston's birth a lot, I really can't believe it's almost been a month already.  I truly believe that my body was screaming at me that the birth center was not a safe option for us.  I think it's amazing that the entire day I was in labor my blood pressure only creeped up a couple times and it was being taken every 5-10min.  But just the day before it had been really high.  I did have some high days afterwards too though.  I still have people who don't agree with the decision we made to induce with him being early still, but in my heart I believe it was the best decision and had we not we may not have him here now with us.  That knot was really scary to see.  It has really changed my view on birth as a whole.  Nothing could have predicted that, we would never had known and I would have carried on to have a birth at the birth center with possibly detrimental results.  It was like God (or whoever) showing me that things CAN go wrong, just because everything has been fine before doesn't guarantee it will be the next time.  It has really made me rethink my views on home birth and birth center births.  Not saying they are unsafe, but it's very scary the things that can go wrong with no warning.  Had I gone into labor on my own at 37wks I would have been legally allowed to deliver at the birth center and even if the knot didn't cause issues there all of Preston's issues would have been much worse having to transfer from the birth center and dealing with all of that in between...could have really lost precious time.  As much as I wanted a home birth at first and then a birth center birth IF we were to ever have any more kids (though 99.9% sure that will NOT be happening lol) I will be delivering in a hospital for sure.  I will never take that chance again.  I'm so thankful my body knew (whether you agree or not) that something was wrong and it changed the course of how things were going to happen.  I would even go back to the OB that delivered Preston, not a midwife...though nothing against them at all, not that I now think it's unsafe to use them by any means.  But I used to think negatively about OBs based on my past experience and so many stories.  But this one proved them all wrong, there are wonderful OBs out there that not only want to push c-sections and unnecessary interventions.

Ok enough rambling.  Just so thankful to have my little boy here with us now, healthy and happy.  He's the most perfect little thing, love that little man so much <3

Today we went to Henry's (Mark's dad) house for a family lunch.  Preston got to meet a lot of family, and the boys even met a few people they hadn't before.  They were so well behaved, very proud of them.  It was really nice to do a family thing, we don't do it often.  Seems like everyone is too far away, really wish we had more family here and that they were more into doing get togethers like that.

First Bath pictures!


Napping in his stroller at Grandpa Henry's

Meeting Grandma Alice (Henry's wife)

Tuesday, June 21, 2011

3 wks old today!

Can you believe it?  I know I can't, Preston is 3wks old today!!!  How did that happen so fast?  While it seemed like everyday he was in the hospital dragged on the time overall seemed to keep adding up so fast.  He's doing really well now, loving being home and being loved on 24/7.  We barely put him down though right now he's napping in his crib because the boys were being crazy loud and I kept having to get on to them so it was waking him up and he was grumpy.  He did have a 99.7 temp earlier so I'm watching that to be sure it doesn't get any higher.  We are STILL waiting on his cord to fall off so he can have his first real bath, still hanging on tight.  I weighed him yesterday, not sure how accurate it was because I stood on the scale holding him then without and figured it out that way, he was in a sleeper and wet diaper when I did yesterday (didn't know it was wet until after lol) and it came up 7.8lbs.  So he's still a little thing, compared to the older boys at least, they were all much bigger by 3wks.  They were all about 9lbs give or take by a month and over 12lbs by 2mo....we'll see how Preston "measures up".

If his cord would ever fall off we'd finally be able to start using his cloth diapers.  The original plan had been to use them from birth but obviously that wasn't possible so when we finally got him home I tried a few of my smallest ones and only one brand of AIO and one brand of fitteds work and then his prefolds do...but fitteds and prefolds need covers and only one of my like 10-12 covers fit and even it I have to put it on just right so it doesn't rub his cord.  If his cord would fall off pretty much all of the diapers would fit, they all are just too high for him right now with it.  I guess it's a good thing he's growing slowly for now, we should still get good use out of them when his cord finally falls off.

Nursing is still going great, no bottles still, yay!!  I really thought he'd never latch after not even trying for 15 days, so glad it's working out perfectly now.  But he's been really grumpy the past 2 days and had another really grumpy night the other night.  I'm almost sure it's an upset tummy so I've decided to cut out dairy because Hayden couldn't tolerate it either, hopefully that helps.  If not I'll try cutting out some other stuff then I'm going to look into probiotics that someone recommended if none of that works.

Speaking of grumpy baby he's yelling at me now on my chest so I should stop now haha.  Man 4 kids is tiring!

Sunday, June 19, 2011

Rough night mom post...if you don't care to know about baby poo and him nursing don't read lol

Last night Preston started acting a little fussy...which we haven't seen from him, he's always so content.  I didn't think he felt very good.  2 days before he left the hospital his right eye started getting really yucky and the nurse said it was probably from his feeding tube being in that side, they took it out that day.  It was still yuck the next day but then Thurs it was better, just a little goopy.  But yesterday and today both eyes are really yucky again :(  It doesn't look like pink eye, he isn't messing with his eyes at all, they aren't red, just lots of yellow goop.

Last night though he was waking up every 1-2hrs to nurse and fussing :(  He didn't have a dirty diaper from the time he got fussy until about 5pm tonight, just tiny bits of poo but not a real dirty diaper.  He finally went lots...I know you all care so much :)  But now he's better so I think his tummy was upset :(  I know the first time he really gets sick I'm going to be so worried, I'm watching like everything the does, analyzing every "symptom" making sure he's ok constantly.  I've barely put him down since he came home, which he loves, he's becoming a mommy's boy already <3

He's been nursing so well, you would never believe he hadn't been nursing since he was born.  He took to it right away and hasn't had a single bottle since coming home.  I almost had to give him one earlier when he was really fussy, he just wouldn't latch right, was letting milk pour out of his mouth but obviously hungry and just having a really hard time.  He finally calmed down and nursed and then after that time was when he finally was able to go potty.  So I figure that was why, his tummy was probably really hurting so he wanted to eat but was having a hard time eating.  But he "enjoys" nursing, he's starting to use me as a pacifier...which I don't mind I'm just glad he took to it so well.  I'm waiting for my supply to regulate for him.  It's amazing what hormones do for your supply.  I can't remember if I wrote about this before, sorry if I did.  But when he was in the hospital the lactation consultant had told me to make sure I pump right after seeing him while at the hospital because my hormones would make me produce more after being around him and touching him...was very true, got the most during those times.  Well when he came home on Wed my supply went crazy.  It was WAY more than when my milk initially came in and my boobs were killing me.  I was sure they were going to explode haha.  It is better today though, thankfully, but I noticed a couple new stretch marks on my boobs!  After 4 kids new stretch was crazy.  I'm sure it was the hormone rush of having him home with me, cuddling him, actually nursing him for the first time...all rolled into one and my supply went nuts.

He is now nursing for 5-10min at a time.  I do wonder what "type" of milk he's getting.  For those that don't know, when you breastfeed the first milk they get is foremilk and it's more to quench their thirst then after that they get hindmilk which is thicker and more filling..more fat in it.  Well when I'd pump the first bottle per side (so 2.5oz) would be all foremilk then the 2nd bottle per side would be the hindmilk.  I highly doubt he's taking 2.5oz or more...he was taking 2oz (most feeds) by bottle before.  So I don't think it's jumped that much with him only nursing 5-10min.  So I do wonder how much of the more filling, fat filled milk he's getting...that might have played into him waking every 1-2hrs last night too since the other milk doesn't keep them full as long.  Hopefully tonight he sleeps a little better.  He nursed just a little while ago and had gone 4hrs since his last feed before that so maybe it's already changing to what he needs.

Tomorrow is his first outing...going to church in the morning and hiding him in my sling so no one touches :)

Friday, June 17, 2011

First check-up!

Preston had his check up this morning, it was really his 2wk check up but also a weight check for the hospital.  He's doing really well.  17 days old today

He was 7lbs 1.8oz at birth, they said 19in but then a few hours later at the NICU he was re-measured and 7lbs .95oz and 20in so I'm sure the 20in is right.  The highest weight that I know he got to in the hospital was 7lbs 15oz because of all the IV fluids.  He then lost back down to 7lbs 4oz, went to 7lbs 7.2oz on Monday night and 7lbs 7.6oz on Tues night and this morning he was 7lbs 9oz!!!  He's only nursed since 10am Wed morning and no weight loss, a couple ounces gain so he's doing great :)  He is now 20.5in and 35.5cm head circumference.  He's little for our kids at this age but healthy.  His cord stump is still on, Casen's stayed on 17 days which was the longest of any of the boys but Preston's doesn't even look like it's coming off yet.  Maybe it has to do with him having the umbilical lines in for so long it didn't dry up.  She suggested starting to use the alcohol on it to dry it out even faster.  She just did a quick look over of him, listened to his breathing and everything looks great.  He doesn't have to be seen again until his 2mo appt on Aug 3rd.  She is putting in the orders for his renal ultrasound and hip ultrasound so I should be getting a call to schedule those soon.

I think I'll like their pediatrician.  It's the boys pedi too but we hadn't seen her yet.  She seemed nice enough.  We didn't have to discuss vaccines, she didn't even ask if he had his Hep B in the hospital (he didn't) so we'll see how that goes at his 2mo visit.  I called around when trying to choose one to find one that was ok with not vaccinating and she is supposed to be but we'll see how she actually acts when the time comes.

Preston is such a good baby, he sleeps so much better than the boys did at this age.  He sleeps pretty much all day, will have probably 2 awake periods of maybe an hour or so but that's it he sleeps the rest of the time and sleeps great at night too.  Last night he slept 4hrs then nursed, then 2.5hrs and nursed and 2.5hrs and nursed again.  He nursed at the dr and then went to sleep as soon as I put him into the car, drove forever home and I got him out of his seat and brought him inside and he stayed asleep so I put him in his crib and he's still sleeping, he's been sleeping now over 2hrs even with all the moving him around and crazy loud brothers haha.  I think when he wakes up we'll try out his cloth diapers for the first time :)

Thursday, June 16, 2011

Follow ups

Tomorrow Preston will have his first check up with our pediatrician, I hope we like her, we actually haven't ever seen her before just her partner and we didn't like him at all but she's supposed to be ok with not vaccinating...hopefully we like her.  He's only been nursing since we got home from the hospital, yesterday was actually the first day he ever nursed and he's doing great.  It takes a minute to get him latched on but he's really patient trying to get it, doesn't scream like the boys did when it took too long.  I'm hoping he's gained a few ounces, he was 7lbs 7.6oz Tues night.  He's peeing tons so I'm sure he's getting enough just want to see a bit of gain to feel even better about it

I was reading through his discharge paperwork that I have to give to his pediatrician tomorrow, we have a copy too to keep in his diaper bag in case of an emergency to give to any dr so they know his history.  It's crazy all the things he's been through, it has all of his medications, procedures and just everything he went through.  From the CPAP, nasal canula, ventilator, nitric oxide, sepsis (which was suspected 2x, only confirmed once but they did antibiotics that 2nd time too to be sure it didn't turn to that), meconium aspiration syndrome, pulmonary hypertension, jaundice, hypotension, pulmonary hemorrhage...the list goes on and on too.

We have to do some follow up appts too from everything.  Within the next 4wks he has to have a hip ultrasound to check for hip dysplasia since I had it...apparently the older boys should have had that too.  He also has to have a renal ultrasound to check his bladder and kidneys since he had the back up so bad, it hadn't fully resolved yet so they have to make sure it has by about a month-6wks old or he'll be referred to a urologist for further testing.  In October he has to see developmental pediatricians because he is at risk for delays from the lack of oxygen :(  I really think he's fine though, he is acting like a normal newborn, he follows us with his eyes and responds well to us but we won't know for sure until he's older.  Then he will be followed closely by his pediatrician and we have to be really careful about him being exposed to anything.  His lungs aren't fully healed yet so a respiratory illness could be really bad for him at this point, they say by age 2 though he should be completely healed and normal in that sense and those things shouldn't be an issue anymore.

Hopefully his appt tomorrow goes well, I'll update afterwards.  Last time the waiting room wasn't the cleanest in the world...well it was clean but old and lots of kids, I'm going to ask if we can wait with him in a room or the car, I don't want him around all that.....

Wednesday, June 15, 2011

Preston is finally home!!!!

As I sit here with Preston sleeping on my chest I'm just on cloud 9.  I am so happy that we finally have him home where he belongs.  The past 15 days have been the toughest of my life.  I want to thank everyone from the bottom of my heart for all the love, support, comments and most of all prayers for Preston and our family over these past 2wks.  Without all of you I don't know where we'd be.  There were many times where your comments picked us up and helped us get through all of this with him.  We are just amazed by how many people have shown our family love and how many people care about our little boy.

I have always felt for moms who have had babies in the NICU but until you go through it yourself you just can't get how hard it really is.  We were lucky that our stay was shorter than a lot and our little boy pulled through it all.  I hope it has made me a better mother and person, it has made me stronger for sure.  We were lucky that while his first few days were very bad once he turned the corner it was only up from there. We have had so many nurses and drs tell us how sick he was.  The dr that saw him today for discharge was talking about how our first dr that we had for about 6 days who was just amazing, saved Preston's life and he truly did.  I can never thank Dr. Randall enough for what he did for him, he did everything right, he made the best decisions at the perfect times that saved our baby's life.  Those first few days were so touch and go, he was one of the sickest babies in a level 3 NICU and here we are 2wks later with a completely healthy little boy thanks to the wonderful doctors and nurses at Presbyterian Hospital of Dallas.  I always wanted to be a NICU nurse but after this experience I realize I could never do it.  It takes a special kind of person to do something like that, to deal with all the sick tiny babies, perform the procedures required and support the parents through it all as well.  We had many wonderful nurses but we are especially thankful for Nurse Michelle who had Preston most days.

Also, we are so grateful to have had Stephanie be able to come into town and help us.  She has been absolutely amazing, a lifesaver for sure.  He has kept the boys everyday for us while we went to the hospital, helped clean the house, cooked, kept things running when I couldn't.  She was also there at night just to talk, whether it be about Preston or whatever else, watch tv with me, just hang out and helped me get my mind off of worrying about Preston even if just for a few minutes.

And my awesome little family...the boys have been so great through it all.  I know it was really hard on them suddenly having me leaving them everyday for hours, having Preston be born but not coming home.  They had a hard time with it, they had a few moments where that showed but for the most part they were really great.  Mark was so amazing, I'm so lucky to have him.  He is the best Daddy and husband, I couldn't ask for anything more.  When I had my hardest days he was always there to support me and pull me out of it.  He always does anything I ask and really took care of me and the boys when I just couldn't do it.

Also have to say thank you to Brandon, Mark's boss, even though I'm sure he won't read this....he has been really great about everything.  Letting Mark take so much time off of work, work from home, after hours, from the car, from the other employer would have been so understanding and not docked his pay.

Really thank you all, I have the best friends and family, we couldn't have gotten through all of this without all of your support.

2wks old today!

Well Preston is 2wks old today!!!  Everyday seems to go by so slowly not having him home with us yet at the same time I can't believe he's already 2wks old.  I feel like I've missed so much with him already :(

This morning I called his nurse to see how his feeds went throughout the night and he had done 4:30pm, 7:30pm and 10:30pm complete which I knew, then he had done his 1:30am, 4:30am complete too but the 7:30...first one with the new nurse he had done only 55ml of his 65ml so she put the rest in his tube and said that the dr would probably "restart" his 8 in a row in 24hrs because of that...over 1/3 of an ounce when he had done all those others complete, I was not happy.  So I got Mark home from work to stay with the boys and headed to the hospital to talk to the dr myself.  I got there just as the occupational therapist was starting his 10:30 feed, they were just checking to see how he was doing since they started him on feeds a few days ago.  He did great for her, we tried out our Breastflow bottle for the first time which is much harder to drink from and he took almost all in it then started getting sleepy so we put the rest back into the easier bottle and he finished it off...70ml so 5ml more than "required"!

Soon after that the dr called me, didn't know I was actually at the hospital, and he said that his antibiotics were finally done and he was doing great but he thought he needed a few more days to work on feeds.  At this point I've had enough, they are just prolonging his stay, he is healthy now and there is NO reason for him to be there anymore, he is eating great and eating like a normal newborn....not always the exact amount you think they need they dictate that.  I've always fed on demand with my babies, the time they want and amount they want....they are making him eat every 3hrs the amount they say he needs, and the amount he is not taking is such a small small amount it's ridiculous that they are forcing that on him by putting it in his feeding tube.  So I told the dr that this is my 4th baby, I know what to look for to make sure they are eating enough and I'll check in with our pediatrician in a few days but that we feel it's time he comes home, he's ready and I wanted him discharged.  So the dr made a "deal" with me that if he eats well for 24hrs he will come home tomorrow!!

They started getting everything ready for discharge today :)  He did his newborn screen, hearing test, we signed some consent forms for things, denied Hep B vaccine...all that good stuff.  I called his pediatrician and got him an appt for Friday morning to do a weight check.  Everything is all set up and/or done for his discharge :)  He's been feeding pretty good all day.  He did the 70ml at 10:30am then at 1:30 he took 64ml but then at 4:30 he only took about 55ml but the nurse actually didn't check that bottle when he was done so I tossed it and no one asked haha.  He was just fine, he wasn't worn out from drinking he was just full, I sat there trying to force him for awhile then just said screw that I'm not going to force feed him when he's obviously just full it's not that he doesn't have the endurance to finish the feed.  Then at 7:30 Mark had gotten there so he gave him his first bottle feed and he took 68ml for Mark.  We then went to dinner and he dropped me back off and I stayed for his weigh in and bath.  Which he screamed through so I thought he might be too tired to do a complete feed but nope!  He did awesome and took all 70ml then even laid there awake looking at me for a little bit before I put him to sleep and got ready to leave.  He is 7lbs 7.6oz....he's been 7lbs 7.2oz the past 2 nights so he hasn't gained much but the night before those he had gained 2.5oz in a day so I think he's just evening out from that big gain.

He is such an awesome baby, he sleeps tons and is so content all the time.  The only time he gets upset is when the nurse messes with him or yesterday he was laying on my chest and when I'd lay him back to fix his leads he'd get upset but calm as soon as I put him back to my chest.  He is happy to just lay there awake even though I like to hold him as much as possible.  He is just the best baby.  It was sad, yesterday I was looking at his arm as he was sleeping and on just one arm there were 6 spots from him having IVs...just the one arm, he's had them in his other arm too, both feet, his legs and his head :(  Poor little wonder he gets upset when the nurses mess with him, I would too.

But he's doing so awesome and should be home tomorrow!!!!!

Monday, June 13, 2011

June 13th Update

Today was great :)

Stephanie came to watch the boys for me, Mark had to work, so I went up to the hospital and got there just in time for his 1:30 feeding.  I got to take his temp and change his diaper and then do that feed.  He was really sleepy but managed to take 54ml of the 65ml "required" so 11ml went into his feeding tube.  It kind of annoys me how they do it because now he's acting like a normal full term baby, he is now "39wks"...they don't always eat what you think.  I remember Landon would sometimes eat the full 2oz and then sometimes he'd eat a little less.  Well they expect him to always eat the 65ml or more...not less.  Like the 11ml is about 1/3 an oz...not much at all and yet that doesn't count as him completing a feed.  Luckily the 4:30 and 7:30 feeds he completed!!!  I'm going to call in just a minute to see how he did at his 10:30 feed and also find out his weight.  He was 7lbs 7oz last night so he needs to have gained just something, an ounce or 2 is fine, just show that he's gaining.  If he does well all night with his feeds and gained tonight I'm going to be pushing his dr to let him come home tomorrow.  It's getting ridiculous now, he's healthy, he's eating fine, not all babies eat the exact amount they "should" at every feeding.  It's my 4th baby I know if they are eating enough and we can check in with the dr in a few days- week to make sure he's gaining well if that makes them happy but it's really time for him to come home.  He is doing great now, there is no reason for him to be there, medically.

But I hung out with him all day, he is such an awesome baby, so content.  He loves laying on mommy's chest and the only time he got mad all day (except during diaper changes too) was when I would take him off my chest to fix his leads because they kept peeling up and then the machine would start screaming at us lol.  As soon as I'd put him back to my chest he was quiet.  He liked having me there with him all day <3  I can't wait to get him home with us all the time

Time to call the dr.......

Sunday, June 12, 2011

Preston has moved to special care!!!

Preston is finally healthy!!!  No more breathing issues, he is still on antibiotics but will get his last dose of those at about 2am and after his blood work in the morning he should get off the IV completely!  Last step until he can come home....learning to eat!  He has now been moved out of the NICU (neonatal intensive care unit) to special care :)

I feel so much better about him being down here.  I was there for the 1:30 feeding up in the NICU and again they refused to let him try and bottle feed or nurse, he hasn't really been able to since that first feeding 2 days ago!  So we moved down after that and I met his new nurse who was great, saw his room which is a private room just for him where we can stay with him overnight if we want.  I would love to but with the 3 boys at home and Mark having to work I don't know how much I will be able to :(  But I decided to run Mark and the boys home and come back for his 4:30 feeding which his rate was a little high but they let him bottle feed anyway!  The nurse did the first part then burped him and gave him to me.  He did really well but ended up taking about 30ml...he's now on 65ml per feed.  So the rest went into his feeding tube and then he got his 2nd to last dose of antibiotics, I pumped and then ran to get me some dinner.  I got back a little before his 7:30 feed and got to do his diaper and all of that then again his rate was just a bit high but the nurse let me do his entire feed alone :)  He ended up taking 57ml out of the 65ml!!!!  He did awesome!  I barely had to pace him, he did most of it...which is not letting him take too many drinks without stopping to breathe because at first he would just suck suck suck and not stop to breathe, he's already figuring it out.

They are doing a bath tonight before his 10:30 feed so I decided to stay and watch that and then do his 10:30 feed then I'll head home.  Right now he's sleeping peacefully and his respiratory rate is perfect.  The nurse said she thinks it will just be a couple days, he's getting it fast!  This is the first time they've said something so close. I hope she's right, he's ready to come home I know it!!

Pics to come later :)

Yesterday's crappy update :(

Last night I was just too upset about the day to sit and write this so I put it off until today, today has been a much better day so I'll update with that after this.

We took all 3 boys up to the hospital yesterday to give Stephanie a break, she's been such a huge help and staying with the boys everyday for us.  When we got to the hospital I went in alone and Mark stayed in the family room with the boys.  First thing I noticed was he was in an open crib, yay!!!!  No oxygen, no IV fluids but did have the IV still in because he's on antibiotics because it looked like his PICC line was getting infected and they have to give those antibiotics over an hour through IV.  Then I look over at his "bedside" the counter next to his bed...and there was a box of newborn formula!!!!!!  I was NOT happy.  I asked his nurse if that was for him, knowing the answer because they can't put anything for another baby there.  She said yes because his next feeding (due in 20min) there was only 35ml left in a bottle of breastmilk in the fridge and he needed 60ml.  I then asked if she had checked the freezer because they are supposed to let me know when they are running low and yesterday it was fine.  She said NO...she hadn't even checked!!!  WTF?!?!  He's ONLY had breastmilk, you see pumped milk in the fridge why in the world wouldn't you check and make sure you were actually out before getting formula out???  So that pissed me off from the start, didn't like her from the beginning.  BTW there was plenty of milk still in the freezer :|  She then asked me if I wanted to hold him and I said yes so she looked at the clock and said "oh his touch time isn't until 1:30" I was like wtf...that's for yall, not when we can touch him.  So I was just like whatever.  Asked how he'd been doing with his bottles because that 1:30 feed would have been 24hrs from starting them...she tells me he hasn't had anymore that his respiratory rate has been too high, it was fine right then.  So I just walked over to his bed and he was kind of half awake half asleep so I just touched his head and was talking to him, she then tells me "why don't you go pump so he has fresh milk".  Like she was pretty much telling me not to touch him and go do something else.  By this point I was getting really mad and upset and even though it had only been 1.5hrs since I last pumped I went and did it anyway.

So went to pump and then brought her that milk so he'd have fresh for that next feed.  She says she'll let him try a bottle and I can do it.  But first she has me take his temp, change his diaper and put his "littlest brother" shirt from Landon on him.  He had never worn any clothes before so he was not pleased with me, what baby really likes having their diaper changed and a shirt put over their head he got really worked up.  She hands him to me and gives me the bottle and starts watching the monitors at his respiratory rate.  She gave him 30sec to calm down and me trying to give him the bottle, which he never even sucked on and she took it from me and said his rate was too high it had to go in his feeding tube.  I was soooo upset.  First time ever getting to give him a bottle and we weren't even given a chance.  So I held him while it went through his feeding tube, about 1min after she had taken the bottle he snuggled up to me and his respiratory rate was perfect through the entire feed, if she had just given him a minute to calm back down we could have fed but no.

After that I went out to the waiting room with Mark and told him what happened and just started crying. He went in and talked to the charge nurse, he was so mad.  Then he had them send the dr out and we told her what happened too.  We then asked for him to be moved to special care, she agreed he was ready and said she just wanted to watch him overnight and then he could go over Sunday.  I didn't go back in there I was too upset so we just came home.  I was really upset the rest of the day.  It's been getting harder and harder and the past few nights have been really bad, especially last night, I just really want my baby home.  I feel like I carried a baby pretty much full term then suddenly I wasn't pregnant but have nothing to show for it.  I didn't have any recovery time because I've been going nonstop dealing with him and the boys, but he isn't home so it's like he isn't really my baby.  I'm so lucky though that I have Mark.  He has been amazing, so supportive and he just feels so bad that I'm upset, he would do anything to make me feel better, which it upsets him there is nothing he can do.   We are perfect together, his bad days somehow I'm stronger and able to be there for him and then on my bad days he can do the same for me.

Saturday, June 11, 2011

Update 6/10/11

Another busy day around here today.  I went to bed really early last night because I was just sad, I miss my baby and it's getting harder and harder to leave him at the hospital each time since he's getting better.  We want him home and nights are the worst.

Today I had to go to the hospital alone because Mark really needed to work, he's taken so much time off with everything going on and really can't keep doing that.  So I got up with the boys, did some laundry and hung out with them for awhile.  Then I made them lunch and left them with Stephanie while I went up to the hospital.  Not long after I got there the occupational therapist came in to do his first bottle feeding.  He did pretty well, she had to pace him so he wouldn't just keep sucking and not breathe.  He is taking 48ml per feed right now and he managed to drink 22ml...the rest went in his feeding tube.  Not bad she said, she said usually they are happy with 5-15ml for their first feed so he did really well.  I was still hoping he would just drink it, breathe and everything be great like a normal baby would so he could come home sooner.  She said babies that have been on oxygen typically have a harder time figuring it all out and it could take a couple weeks even.  He has to be able to take 8 full feeds before he can come home :(  For now they are starting him out on 3 bottle feeds a day and after a day or so they'll see how he's doing on that and see where to go from there.

They had to take his PICC line out today because it looked a little red like it might be getting infected so they are doing tests to make sure there aren't any infections and he's on antibiotics until those come back.  They had to put an IV in his foot because he still needs fluids but they hope to have that gone tomorrow.

He is down to .5L at 21% oxygen on his nasal canula and they hoped that by 11pm tonight it would fully be gone.  I can't wait to go in and see him tomorrow, hopefully that's gone, the IV is gone and he's in an open crib.  If he does all that he SHOULD move to special care soon so I can stay with him there...if we have someone to stay with the boys.  I won't do it all the time because it's just not fair to the boys at home but I will stay some at least. I get to try to nurse him tomorrow which I'm really nervous about but hopefully he does ok.  Tonight I pumped 10oz in one session, I've been getting SO much and my let down is really fast so I'm scared to actually nurse him.  But the occupational therapist said to give him the chance and if it's too overwhelming then the next time we'll pump a little first then let him nurse.

Overall he's doing really well it's just all going way too slow for me, hearing yet again it could be a couple more weeks when you look at him and see a healthy baby now is so hard.  I hope he yet again proves them wrong and gets this feeding thing down really quickly so he can come home with us.

Tonight was Casen's final tournament game.  They lost but they played really well, they ended the season as #1 American league team but #2 overall for tball...out of 17 teams!  So they did awesome this season!!!!

First bottle feeding

Sleeping on Mommy with his full tummy

Casen and his trophy

Go Orioles!!!

Casen and his coach

Thursday, June 9, 2011

Another good day but somehow feeling disappointed

So I really can't complain, Preston is doing great, but for some reason I'm just feeling blah about today.

I got up this morning and realized I had missed my 4am alarm, either it wasn't set which I'm 99% sure I set it or I turned it off while half asleep and don't even remember it.  Either way I went almost 8hrs between pumping last night...go up and pumped almost!  That was about 8am, managed to go back to sleep for an hour and a half and then got up to get me and Hayden ready for an appt.  It was supposed to start at 10:30 so we get there and it takes forever.  We didn't get home until 12:30 and it was right down the street.  Because of that I was an hour late pumping it had been 4hrs.  Came in and pumped right away and as soon as I was done Mark got here to head up to the hospital.  Did find out at my appt though that I've lost 5 more pounds since Monday so now I'm at 17lbs below my pre pregnancy weight.  Oh yeah and at the appt there was another baby there born the day before Preston, 37wks too and born at 6lbs....glad that baby is ok of course, but did make me really sad that my baby has to still be in the NICU

We were really hoping to get there and see the canula off but he still has it, but he's doing really well and they hope that maybe tomorrow that can go away.  He is breathing really fast though so no feedings today :(  Well he is getting his tube feedings still....36ml....but not able to nipple feed yet because of how fast he's breathing.  They hope that tomorrow they will be able to but I also found out that he has to start on a bottle and I can't do his first feeding the occupational therapist has to do it. *cry*  But the nurse did call them and set up a time so that way I can at least be there to see we are doing that at 1:30 as long as between now and then he regulates his breathing and slows it down to under 60 breaths per min. Sometimes he's hitting over 100.  His bed has been turned off and he's regulating his temp just fine so hopefully he'll move into an open crib tomorrow as well.  The poor baby though is telling them constantly he WANTS to nipple feed.  He has been grumpy all day she said.  I got to hold him for an hour and he slept most of that but at the end it was getting to about 45min to feeding "time" (which BTW I HATE schedules for newborns, they don't tell time, they eat when their body tells them...well not in the NICU if the clock doesn't say it's time they wait, not matter how hungry they show they are or how much they cry....that kills both me and Mark)  He was going crazy sucking on his paci and it wasn't giving him what he wanted so he'd get really upset.  I went to go pump and Mark held him and he was able to keep him calm most of the time but when I came back in he got really was about 30min til feeding time.  So Mark gave him back to me and he cried on and off until I got him comfy on my chest and he finally calmed down but you could tell he was just so hungry...hated that I could have "fixed" his problem but I'm not allowed.  :(  So when he finally got his feeding we left so we could make it back for Casen's game.

Got home and sat down for all of 3min and had to leave for the game.  I was hoping to stay home and take a nap but Casen really wanted just me and Mark to go with really upset that Hayden was going even and we always go places as a family, never leave certain kids behind but have been doing it a bit lately with Steph Landon didn't want to go to the game today.  Poor kids are having a really hard time with us being away so much.  We sat out in the heat watching his game which he won, yay!!!!  They have their final tournament game tomorrow to see who gets 1st and 2nd place.  Go Orioles!!!!!!

We got home and again I was an hour late pumping.  Tonight I only got 6.5oz which lately I've been getting 7-8...really hoping today's off day hasn't screwed things up.

But yeah, just a crazy day and left feeling really down for some reason.  Hoping things go better tomorrow and he is able to eat, going to have to go to the hospital alone again though :(

Pics to come later....

Wednesday, June 8, 2011

The best hospital visit yet!

Today was such an awesome visit!  We got there about 12:15 and they had just got his first blood gas back since taking him off the ventilator and it was great!  When we walked in they were taking away the ventilator machine, it had been left until they saw he was doing fine off of it, so glad to see it gone, 2 big pieces of equipment gone now :)  He was wide awake when we got there too.  Since his blood gas came back good the dr came to talk to us and told us they were going to take out his umbilical line and then he needed to stay still for an hour to make sure it clotted so he wouldn't bleed badly so we decided it was best we just leave and let them do that so I went to pump and then hung out with Mark in the waiting room until about 1:20.

When we came back in the nurse had just started his "touch time" and had me do his temp and change his diaper then she told me I could hold him <3  So she gave him to me and he was really hungry trying to eat his blanket so I put his paci in his mouth and he sucked on it like crazy, she started his tube feed and let Mark hold first time he's fed him.  He sucked on the paci until it was almost gone then spit out the paci like since he wasn't hungry anymore he didn't want to suck.  He was so content with a belly full of mommy's milk :)  He's now taking 1oz per feeding and digesting all of it!  I held him for an hour and he was just so content, it was definitely something we both needed badly.  I kept asking Mark if he wanted to hold him but he didn't want to take him from me so I sat holding him and just watching him sleep for an hour.  I finally told Mark to take him I knew he was dying to hold him so he held him for awhile then we laid him down so he could sleep.  We needed to get home to the boys anyway they have been having a really hard time the past couple days with us being away from them so much, we never leave them much less everyday for hours.

Now Preston needs to get the PICC line out, in order to do that he has to start taking more feeds so he doesn't need the nutrients from the IV.  If he stays stable all night we'll get to feed tomorrow :)  If he can start taking his feeds well and keep his oxygen levels stable to get off the nasal canula and he'll be able to come home.  But we still don't know how long that will take...hopefully he does it fast and is home in a few days!!!

Today's visit <3

First time being held since getting to the hospital, up until now he's just been lifted to change position or move blankets...even the nurses haven't held him

Mommy finally gets to hold him!

My <3

Daddy giving him his food

Gorgeous boy

Daddy finally getting to hold him

Loving on Daddy <3

Best news ever!

This morning I got a call from the Dr. in the NICU with the best news!!  They have removed the ventilator!!!!!  My baby is breathing on his own!!!  He does have a nasal canula but the dr said he thinks he doesn't even actually need it but he put it on to keep him comfortable and he has a repeat blood gas at noon and if that looks good they'll start taking that down.   Also if that blood gas comes back good his umbilical line will come out meaning we can finally hold him!!!!!!!!!  I seriously can't wait to get to the hospital and actually be able to hold my baby for the first time in over a week, since he was 1hr old.  He said if all goes well we will also be able to try and breast or bottle feed tomorrow.  As much as I want to nurse I actually think I *might* ask them to do bottles at first because I have SO much milk I'll probably drown the poor kid since he's never had to suck, swallow and breathe I don't want that to screw it up for him.

Come on Preston, continue to prove them wrong....praying for good blood gases all day so he can start eating tomorrow and possibly show them he knows what he's doing and get home in a few days!!!

Tuesday, June 7, 2011

2nd trip to the hospital 6/7/11

Since I had to go alone to the hospital earlier when Mark got off he wanted to go see him too so we went back up there <3  When we got there he was sleeping and the nurse asked that we let him sleep until 8 because they had taken him off the nitric oxide!!!!!!!!!!  She had to do a blood gas at 8 and if he got worked up before then it could mess with those numbers and since this was the first since going off the nitric the numbers needed to be as accurate as possible.  So we watched him for a bit then I went to pump.

I feel like a cow with all the milk I've been getting lol.  The hospital is fully stocked, I don't even bring anything from home and haven't in days, I pump every time I'm up once a day until today...and I leave that there.  Each time I pump that is more than a day supply for him lol.  So they have like a week supply right now.  Then I have sooo much in my freezer already it's crazy.

After I pumped we went back to see him and she had just done the blood gas and was doing the rest of his "touch time"...switching his position, changing diaper, cleaning him up, moving leads around, etc.  Then after she gets him all settled he gets his feed.  He's a really good baby as soon as he gets his feed he goes to sleep for about 4hrs.  He hasn't had pain meds or sedation medication in over 24hrs now!  He really loves his paci and we were able to see him sucking it this time, earlier he just had it next to him but he was asleep.  As soon as she put it in his mouth he calmed down, stopped sucking and went right to sleep.

She said the same as the other nurse, he should come off the vent hopefully tomorrow.  She thinks he'll just need the nasal canula, not CPAP but of course only Preston can decide that.  She said SOME babies it's like a light bulb comes on and they just "get" it and he could possibly come home in just a few days but a week is more likely and 2wks is very possible.  We are just so happy he's off the nitric and doing well though, that's a huge step!  Praying he does well all night and is able to be weaned down off the oxygen and off the vent tomorrow!!!  Once he's off the vent and they can take out the umbilical line I can hold him :)

Pics from earlier

Baby all tied down lol, he really likes being wrapped up like this

6/7/11 Update

Today was the first day I've had to go to the hospital alone.  Mark's boss, Brandon, has been really awesome and allowing him to work from home/car/hospital instead of having to be in the office.  But they really needed to catch up on things today so Mark needed to work.  So I made the trip up there myself today, really long drive's an hour each way.

When I got there he was sleeping peacefully all wrapped up. He can't be swaddled because of the umbilical lines, if those were to come out he could bleed out quickly so they have to keep those where they can see them.  So they had taken a blanket and almost tied his arms down and another and tied down his legs...sounds bad, tied down haha, but he likes being restrained like that.  He also had a paci, wasn't sucking it when I went in but the nurse said it really calms him down and he likes sucking it...which is a good sign, hopefully he'll be able to suck and eat when the time comes.

His nitric was turned down to 0.7%!  The nurse said she thinks he'll be off that completely before she goes home at 7pm. They are giving 16 breaths per min but he's taking a total of around 70 a min so he's doing a lot more work on his own today. His oxygen was up at 37% but she thinks he'll come down off that quickly when the nitric is gone and he'll be off the vent tomorrow.  He will then go on CPAP or a nasal canula for oxygen and he'll need to prove he can hold his levels on that then be weaned off onto regular room air.  We are hoping no CPAP!  If he's on a nasal canula he can nurse.  She said it could easily be a week though before I'm given the chance to nurse him :(  Hoping he proves them wrong and is nursing in the next couple days.  After getting off all oxygen the only thing he needs to do is prove he can eat.  Once he's off all oxygen he will move to special care and I can stay with him.  He'll start out trying to do 4 feeds a day on the breast or bottle then 6 and if he can do 8 he can go home as soon as he does that. So come on Preston, move fast and come home way sooner than they think!!!  Makes me really sad to think he could easily be there another 2 wks :(  We just want him home

Through church I've met some really awesome moms that we do meet ups with once a month, they found out about the situation with Preston and one of them is bringing us dinner tonight which I think is really sweet, it's nice to not have to worry about that for tonight and the kids will still get a good meal, not just a sandwich or something else we throw together really quickly.  She should be here in about 30min.

I have pics from today but I haven't uploaded them yet, I'll do that in just a bit, only got a couple since he was sleeping so well didn't want to disturb him much.  OH!!  And he hasn't had ANY sedation or pain medication since yesterday!  He is also up to 20cc for his feeds now :)

6/6/11 Update

I think hearing the nurse tell us yesterday that she hoped he'd be off the vent today got us too hopeful, I feel almost disappointed by today's progress even though it's still and it's still moving in the right direction...guess just not as much as I was expecting.  He still had a good day and is doing better and that's what really matters even if it takes longer than we expected.  We had been expecting this to go on much longer than this just 2 days ago but hearing it yesterday made us really excited that we might have him home much sooner than originally thought.

His oxygen level was back up a little today at 40% but his nitric oxide was down from 14% to only 4%!  That is the medicine helping his lungs and it has to be a 0 before they can even think of removing the vent as it's the only way to give him that medication.  The nurse said that starting now they will move it down 1% each time his blood gas comes back good, which is done every 6hrs right now.  It was going down 2% but now that it's so low they take it really slow to be sure not to make him have a rebound and go back to needing it a lot.  Once it gets to 1% they will go down by like .1-.2% each time until he gets all the way off.  He still needs to come down on pressures as well and of course his oxygen level too.

He was off the jaundice lights and the whites of his eyes looked much better today.  He hasn't needed much sedation medication today and was able to open his eyes better today.  Yesterday it was like they were really heavy and hard for him to open and today it seemed easier though most of the time was spent with them closed still.

He is up to 7lbs 15oz...but again most of that is fluid from his swelling.  He has also moved up to 15cc of breastmilk each feeding too!!!  They hope to move up to 20cc tomorrow.  It was really hard to watch earlier though because while I was there it was getting close to his feeding "time" and he was putting his hands in his mouth by the tube and was rooting around you could tell he was hungry but he had to wait the 20min to his "touch time" and then wait for her to finish everything else she has to do during that time before he could eat so he was hungry a good 30min before actually getting his food which killed me as we feed on demand and he couldn't have his food because the clock didn't say it was time :(

But during that "touch time" today I got to change his diaper for the first time!!!  His cath is out and he's peeing really well now.  They think the back up was because of his pain meds.  They repeated the u/s on his bladder today and the right side has completely resolved and the left is much better.  They also did an echocardiogram but they didn't have the results of that while we were there, so we should get those tomorrow.  When he finally got his feed he settled right down and went to sleep so I went to pump.  The lactation consultant in the other hospital told me to be sure I always pump at the hospital after seeing him because when you are around your baby your body just knows and you get more milk...boy was she right.  This morning I had pumped at home and filled 2 bottles for the first time so I knew I'd get more at the hospital as I always do so I grabbed 3 bottles to go back in the room to pump.  Yeah filled all 3 and still had more milk haha, I didn't get more because I would have had to put everything away go get another bottle or 2 and then get it all back out but I'm sure I would have gotten at least one more.  I've been pumping every 2-3hrs around the clock and the hospital is stocked and my freezer is getting so full I have to reorganize it tomorrow so I will have places to keep it all!  I'm hoping to get him completely breastfeeding once this is all over, maybe save some for the occasional bottle Mark can give him...maybe he can get up every once in awhile at night haha.  But I'm going to donate the rest to the milk bank so the other babies at the NICU there can have it.  It's amazing the difference in Preston since starting breastmilk.

Also, today was the first day we've brought one of the boys up to see him in the NICU, they haven't seen him since the first hour after he was born besides a couple of pictures.  The other day when we brought the gifts from the boys up to Preston we laid them over him to make it look less scary for the boys and took pics and those were the first ones they had seen.  After looking at 2 Landon's eyes got really red and watery and he said "I've already seen him I don't need to look at pictures, can I go?"  like he was all tough and mad I'd be showing him pics.  Really he was very scared and upset.  Mark went back to talk to him and he said he really wanted to see Preston.  So we took just him up there today to show him that he is ok.  Landon really enjoyed seeing him and was talking to him, telling him about Halo of course lol.  Telling him he'd teach him to play Halo and build things with Legos when he got bigger.  That his brothers missed him at home and he needed to get better so he could come home.  It was so sweet <3  We are going to take Casen up soon, we are trying to decide if we want to do it tomorrow or wait the 2-3 days and hope he's off the vent then and do it then.  Though I think Casen would handle it really well because he's really matter of fact, he just understands things. Like he gets that Preston is sick and therefore needs these machines...Landon is really emotional about it all, he's just so caring that it makes it harder on him.  Hayden is only allowed one pass to see him so we will wait for a bit, until we can hold them and he's about to come home to use that.  Probably wont' take Landon and Casen up again until that time either.  We don't want him exposed to anything more than he needs to be so it's been just me and Mark and will be until he gets home except these couple of visits with the boys.  Even after he comes home we will be really careful about how many people are around him and making sure everyone is completely healthy and washing hands, etc.  Don't want him to end up back where he is now, we want him home to stay!  Hopefully that's within the next week!

Today's pictures!

Landon was so happy to see him

Looking at his big brother Landon

Eating his hand when he was hungry

Sleeping peacefully after his feed

Sunday, June 5, 2011

Awesome Update 6/5/11

Preston is doing amazingly well today!!!!  He is impressing all of his nurses and the dr, doing things none of us expected for another few days at very minimum!  We are so happy right now!

First, I got a call this afternoon before heading up there from his dr who was so happy and told us they are weaning down on everything, his oxygen level was lower, the pressures on the vent were lower, the nitric oxide was lower, breaths per min were lower and he was doing more work.  Also his jaundice levels had dropped and they were hoping to have him off the lights tonight or tomorrow morning.  Also told us he was getting more to eat.  I told him we'd be heading up there soon so we got off the phone and when  Mark got home we went up there.   When we got there we knew he was doing better but did not expect what we saw.

His oxygen level on his vent was 70% yesterday, it was 35% when we got there and before we left had been turned to 30%!!!!!  We breathe 21% so he is very close to room air!  Also the pressures that were 27 over 7 yesterday are down to 21 over 6!  So he needs to come down some more on that but he's getting really close to the minimum!  His nitric oxide was down to 14 ppm from 20ppm yesterday.  That is the medicine that is helping the vessels in his lungs...that needs to come to a 0 before he can come off the vent.  Also yesterday he was on 34breaths per minute but he wasn't working any more above that, he was letting the vent do all the work.  But today he's down 18 breaths per minute and he's breathing on top of that at around 70+ breaths total (with the 18 they are giving him) per minute!  Everyone was just amazed.  They said it's like last night he just turned a corner and decided enough was enough, he was tired of this and he was getting better and coming home.  They said normally they wouldn't wean so aggressively but that he is forcing them to do it :D  That's my man, he'll be home soon!  Mark said it's the mommy's milk he started getting.  Yesterday was the first day he wasn't sedated and he knew we were there, then he got his first breast milk and suddenly he's a new little baby <3

His jaundice level was at a 14.8 this morning, will be redrawn at 9pm if he's at 13.5 or lower he'll come off the lights, they expect him to be :)  He also went from 5cc of breastmilk (which is 1 teaspoon) yesterday every 4hrs to having that every 3hrs and now I got to feed him again today his first 10cc feeding!  He's already digesting most of it.  Also his cathedar is working really well today and he's peeing tons which they said is a great thing, it's because he's coming off the meds and his swelling was way down today.  He is getting better.  He is out of that really scary zone, he IS going to be ok, he is going to come home with us.

They are thinking he may be off the vent tomorrow at this rate, we can't believe it!  Just yesterday the dr was saying we easily had another week on the vent.  Preston wasn't having that.  Today when it was about time for him to feed he was rooting around and getting upset, he wants to nurse.  If he gets off the vent we'll start trying to nurse, so hopefully tomorrow.  Once he's off the vent and shows he can maintain his oxygen levels the only thing he has to do to come home is prove he can eat.  He's been sucking on his breathing tube and rooting around so we don't think that's going to be an issue.  My baby could be home in just a couple days!!!!!!!!

Pictures from today

How he was when we arrived, sleeping peacefully with the blanket from Casen and the lovey from Hayden

Holding Mommy's hand

Finally opening his eyes for us!

Getting his first 10cc feed

Resting peacefully when he finished eating

Daddy saying bye

Saturday, June 4, 2011

Update 6/4/11

Today when we walked in and looked over he was moving his arms all over!!!!  He has been so sedated up until this point he doesn't move at all.  But they took him off the main sedation and are just giving him other meds that are allowing him to be more awake....well not really awake but not completely out.  So he's fighting the tubes now though which isn't good and he's getting more worked up then he should be so they will be upping those meds again but he shouldn't be completely sedated again unless he is getting really agitated.  Because he's grabbing stuff we had to hold his hands down but he was holding my hands almost the entire time <3  He cracked his eyes a couple times but not enough for us to get a good look.  He definitely knew it was us there, he calmed down for us but would get worked up again with the nurses or if we stopped touching him.  He responded best to me, he knows Mommy for sure.  He was holding my hand and if I moved it to do something he'd start flailing around again and getting worked up but if I'd touch his hand again he'd grab it and calm right back down.

He is completely off his blood pressure medication!!!!  His blood pressure was too low that's why he needed it.  His oxygen was just a little higher than yesterday when we got there at 75% BUT the machine isn't giving him as many breaths today as it was yesterday.  But while we were there they did another blood gas and it looked even better and they were able to go down to 70% oxygen and also decrease the pressure from 27 to 26.  He is currently being given 34 breaths per minute.  Since he has been able to come off some of the sedation and is fully off blood pressure meds they were able to start feeds for the first time today.  Since he's been born he hasn't had a bit of breastmilk....or any other food, only IV fluids.  Since I was there I was able to give him his first feed, it was through his feeding tube and only 5 cc but it's something.  She said he'll be on 5 cc every 4hrs for awhile.  His next feed is at 7 and she said they'll pull back on the feeding tube, draw up whatever is in there and that it is very common to bring back up the entire 5cc he was given first because his body hasn't had to be digesting it, so they'll discard that, give him 5 fresh and see how he does.  It may take 24hrs or more for his body to start responding and digesting it like it should.

He is jaundiced today, his levels this morning were high so they started lights, this afternoon they were even higher so they are waiting to see what they are tonight they may have to add more lights.  His next blood gas is at 7 so I'm going to call about 8pm to find out about that and see if they were able to go down more on his vent and also see how his bili levels are, see if they had to add another light.  Right now he has a light above him and then he's laying on a pad that has the lights.

They had to put a cath in because his bladder was really full and urine was backing up.  They said it is most likely all the pain meds he's on but it's possible it's something else so they did the cath and on Monday he will have another u/s to make sure it's emptying correctly with the cath and go from there.  If it isn't they'll have to check the structure of his penis, like the urethra and valves in it they said to be sure everything is good there but most likely it's the pain meds causing the issue.  He is retaining a lot of fluid but they said that's normal for how sick he is, his belly is a little swollen from it and you can see the swelling in his hands too.  He is up to 7lbs 7.9oz but they said it's from all the fluid and when he gets better he's going to drop below his birth weight like a normal newborn would and have to start working from there.  He also has had 3 poo diapers today, I know you all wanted to know, but it's his first ever, he hadn't been going another good thing!

So all in all a good day, more small steps in the right direction.  He has a long way to go still to come off the vent but they said when he gets there things will probably move fast it's just getting him going in that direction better.  But he's doing good :)

Holding my hands

Holding Daddy's fingers with his toes

Preston's first ever feed!

Under the lights for the jaundice