Surgery?!

"Mommy, the FLASH!!" - Hudson

 

 

Ooooops!  Some how I turned my flash on...he's had enough bright lights looking at him this weekend!

 

 

Yesterday Hudson weighed 6 lbs 2 oz, today he's 6 lbs 6 oz. 

 

 

Hudson had his laser eye treatment yesterday morning.  The procedure went great.  The eye doctor was very pleased with the treatment.  She said for the next six weeks he'll be followed each week and after that every two weeks until they feel he can go longer between appointments.  She said in two weeks she'll be able to tell if the treatment was enough of if we have to do another treatment.  He was pretty out of it after his treatment.  He had morphine and versed...he was OUT! 

 

While I was holding Hudson this afternoon one of Hudson's surgeons came to visit us.  Which to be honest...doesn't happen...ever!  He wanted to let me know Hudson's surgery has been scheduled for TUESDAY!  My mouth dropped open, in shock...and his np came over to Hudson to celebrate!  "Hudson did you hear that!!!  You've got surgery!!!"  So exciting! Granted, we don't know what time surgery is, just that it will be some time Tuesday afternoon. 

 

Tomorrow he has his contrast study!

 

 

 

 



first of many big days...

Mommy is so proud of Hudson!!!!  He is 6 Pounds 0.5 Ounces:)  ((that's half an ounce)).

Hudson has been tolerating his food, so he got to go up to 4.5 ml per hour:)

I did Hudson's care today, gave him a bath and went to put MY favorite outfit on him...and he has gotten too long for it!  What the heck?!  Hudson thought it was funny!  But then I got the last laugh because I put him in a cuter outfit...that isn't snap so he doesn't like it as much while getting dressed.

Hudson has a love hate relationship with Tuesday.  He loves it because his Daddy comes to see him on Tuesday's, but he hates it because the EYE ladies come too.  Well, poor kid had two eye exams today.  He had his first one and the doctor said she wanted a second opinion just to be sure.  Hour or so later, second opinion confirmed that Hudson needs to have laser treatment in both eyes for ROP.  More than likely he'll have to have glasses down the road and he'll be near sighted.  He has that laser treatment in the morning (Wednesday at 7a).  They will give him "happy juice" so he won't feel a thing.  He'll be worn out and will more than likely sleep the rest of the day.  If you want to read more about ROP here's a link:  http://www.nei.nih.gov/health/rop/rop.asp#7

Then Thursday he's got his contrast study scheduled.  This is to make sure there is no other bowel issues before his next surgery.

And then Friday...he will hopefully get his 2 month shots.  Something happens every day so they keep pushing it back...so Friday is the new goal for this to happen.

Hudson will be good and ready for the weekend!

And after 10 weeks of being in one spot, a new baby that will have several pieces of equipment needed Hudson's spot.  So we were moved today...and talk about the filling in an oreo!  It is different, and very tight...this next couple of weeks are going to be a lot closer.

Enjoy some Hudson time from today:)

"My Mom insists on putting a different outfit on me every day.  It wasn't dirty!" - Hudson

"Quit teasing me!  I want that pacifier!" - Hudson

"I could listen to my nurse talk to me all day...as long as she keeps feeding me anyway!" - Hudson

"If only Mommy knew what I was really thinking!" - Hudson

"But Dad, I don't want the eye ladies to come back today!" - Hudson

"Daddy, we really need to talk.  How about you do the next eye exam for me?" - Hudson

Live from Riley NICU

Hudson Emmett Murray weighed in at 5lbs 15oz again today!  He's teasing everyone with gaining a few grams so he doesn't tip the scale.  I say TIP the scale already:)  He's been teasing me for 4 days now...he's been gaining a few grams, losing a few grams....story of my life though:)  I know I know, this is JUST the beginning of what he'll do!

Hudson had a wonderful day!  We had our favorite (we have lots, but she was our first favorite) nurse today!!!  During his rounds the doctor decided to go up to 2.2 ml per hour and turn his vapotherm down to 3 lpm!  These are baby steps, but baby steps in the right direction!!!!  During the afternoon rounds, his doctor asked me if I could have a pep talk with him so he handles his eye exam better this week.  I think he'll do great!  But, probably an extra prayer couldn't hurt for this matter.  His eye exam is very stressful to him and we are looking at making baby steps forward:)  It was also good to visit with his doctor that had him his first week, she was in amazement on where he is today!  I had a proud Mommy moment showing him off to her.

Hudson has not only filled out...but he's gotten quite the reputation with the nurses.  For amusement sake they love to come over and say "hi hudson" and they love to see his facial expressions.  For some nurses he gives a full smile and almost a pretend this is what I look like laughing face.  Others get a half smile and a few get a cry...hahaha.  He has his own personality and he doesn't hide it!

"I need a hug" - Hudson

"Mommy tricked me, I thought we were looking in the mirror!" - Hudson

"I wish my pacifier would just stay in...my arm gets tired!" - Hudson

"Growing, digesting, holding my pacifier in...it's exhausting!  Nap time:)" - Hudson

New week

Hudson is off to a better start this week!  He went up and down with his weight over the weekend, but yesterday was 5lbs 15oz!  And 17 3/4 inches long.  He was on 1 ml per hour of food yesterday and tolerated it well!  And I put the feeding tube in...he wasn't exactly happy with his momma at the time.  So we shall see what today brings and adjustments his doctors want to make.

Have a Blessed Monday!

turkey photo shoot 11-19

Turkey Photo Shoot...in order:)  You can see just how much he's like his father:)  Because if he took after his Momma, he'd be a total ham for the camera:)  Enjoy!

"Thank goodness that's over!" - Hudson

That photo shoot really wore him out!  

2 days too long

Hudson had a good day today!  Yesterday was good too!  Slowly but surely he's feeling better and getting a little spunk back!  

Today when we called to check on him we found out that he is 5lbs 15oz...1 more ounce and we will have a 6 lb baby on our hands!!!  The team was also going to start donor breast milk again, 2ml per hour to see if he tolerates it.  He has had a few brady's but none of significance like Tuesday/Wednesday episodes.  We are just thankful for the prayers!!!  His UTI threw him for a loop!

Ben had felt well all day and decided he'd go see our lil man so he didn't think we forgot about him.  I on the other hand feel a lot better, just not 100%, more like 95%.  Anyways, if I wake up in the morning and I'm feeling 100% there is no holding me back!  So, I instructed Ben to take LOTS of pictures!!!!  Hudson was so happy to see his Daddy, you could see it in his face!  

Sickness

Well, it must be a family thing.  First Hudson got sick over the weekend, then Kim and now me.  This means that we cannot see Hudson until we are better.  The last thing Kim or I want is to make Hudson or any baby in the NICU sicker because we brought a virus in with us.  There probably won't be any pictures for a few days, but we may find a way to get creative.  The good news is the phone works well so that is how we get our updates.

This afternoon Hudson has a blood transfusion because his hematacrit was low, 28 I think.  He tolerated that well.  He also had a stomach xray done this afternoon which showed the air in his intestine had moved from its previous location, thus implying no blockage. Yay! However, it is enough to warrant a concern so they are monitoring that.  He also had a chest xray done as well and while he had good expansion - 9 ribs expanded, he showed some haziness.  So they upped the LPM's to 5.0.  If his respiratory gets any worse, they will most likely move him back to the CPAP machine. I asked the reasoning and the NPP told me they can monitoring his breathing needs much better on the CPAP than the vapotherm.  The vapotherm isn't the most accurate in terms of the settings on the machine and the expected outcome due to a variety of reasons, one of which is not having his nostrils sealed so that all of the air gets to his lungs, inevitably some of it escapes back out his nose thus losing so air.  We'll wait and see how he does.  The last I knew his oxygen needs were around 24%.

The surgeon came back in to dilate his stoma and some air came out, he does not believe there is an obstruction at this time.

I asked the NPP what could be the cause of the major episodes he has been having.

1. UTI has progressed into his blood - waiting on results, will take about 48 hours to know for sure.
2. His reserves are gone.  The way I understood it is if your power goes out and you have a generator, it doesn't work either because you are out of fuel to run it. Because Hudson's reserves have been wiped out, he has nothing to fall back on when he decides to have a Brady or apnic episode.  The reserves in these cases typically would kick start him back in the right direction but without them, he falls lower and lower.
3. Could be a variety of issues. This isn't comforting but at least they were honest.

I asked what the game plan was for tomorrow, Thanksgiving, and they did not know yet.  They were going to see how he did overnight and go from there.  That's the Hudson we know and love, not letting anyone plan for him.

He did get weighed today, 5 pounds and 11 ounces.  He is still gaining weight, this is good.  Since his blood transfusion he has not had any major episodes, lets keep our fingers crossed, all 5 or 10 of them, however many you may have. :-)  

morning phone call

Got a call this morning from Hudson's doctor.  He had another episode like yesterday's only this time he had to be bagged.  Which means they gave him breaths like you would for cpr, but no chest compressions.  She had a chest xray done and saw the picc line was a little deep, so they were going to pull that back.  If it's in too deep sometimes it can cause an irregular heart rate, but shouldn't cause brady's of this significance.  She said it could be a combination of his eye exam, which happened 15 minutes before the brady, uti and reflux.  They stopped his feeding to put a tube down his throat to suction the air off his belly.  (air from them bagging him)  He is going to be fed strictly tpn for today and possibly tomorrow.  She was also getting another blood culture work up to see if the infection had spread to his blood stream.  She said even if it has, he's got the two antibiotics working against that bacteria.  His eye exam showed the same findings as last week, so they will be doing a follow up next week.  Hudson has been through quite the roller coaster this last week, but he is a fighter for sure.  As scary as this is,  I'm thankful he's surrounded by the best of the best medical team.

Thank you for your prayers!  He is resting comfortable right now.

Backwards

I am thankful for Hudson!  He's 62 days old today!

Hudson doesn't like plans.  We know this, yet Ben and I were expecting surgery to happen next week.  Well today, I found out that there is a "revised" plan for Hudson.

1. Surgery:  The doctor talked to the surgeon...surgeon said he didn't want to do Hudson's surgery until he was 3kilo (6lbs9oz) and he was off vapotherm and actually he preferred him to be on no respiratory assistance, which they are predicting to be around his due date.  Mid December surgery. Because of the past few days the surgeon just wants him to get stronger.  
2. Feeding:  The medical team said he wasn't ready for his feeds to be increased yet.  So still, 4ml per hour today (which he was getting 16ml's per hour).  They decided because they weren't increasing his feeds and it might be several days before we are back up to full feeds that they'd start TPN again.  He has an iv in his right hand, but TPN is best in a picc line.  Shortly after 2 today he got a picc line in and tpn to follow.
3. Respiratory:  The goal is to wean him.

Today's adventure:

I'm not going to lie.  Today was a rough one, even though I knew it'd be later December before we would go home.  The realization of surgery now not happening at the earliest mid December means the earliest discharge is mid January.  I had a pity party for myself, I do love the riley staff and I know Hudson is in the best care possible.  And I know that we are blessed beyond measure.  Just wasn't the news I was ready for today.  However, with that said...Hudson took it upon himself to remind me that we don't need to go anywhere too quickly!  After his picc line, which he put up a good fight, it was time for his care.  The nurse finished up getting his new iv's hooked up and then I finished up with Hudson's care.  I did his oral care, always the last thing I do.  Anywho, I stepped away from his bedside and threw that stuff away.  (and when I say I stepped away, literally maybe 2 steps)  When I turned back I saw his heart rate dropping, which isn't that unusual, but when I saw it go below 68 I looked at Hudson and well I'll spare you the details.  Every nurse and RT in the room came to his bedside and started to work on him.  Stimulating him to breathe.  Giving him more oxygen.  Talking to him.  His heart rate got as low as 53, they gave him 100% oxygen and he still wasn't coming up.  SO they increased the flow on his vapotherm.  After what seemed like minutes later, he decided to breathe again.  After that, his nnp and I talked about his lungs.  They'd learned from the xray they did from his picc line placement that his lungs weren't as inflated as they'd like to see.  So the move to a higher lpm might be just what he needs.  They'll monitor with a follow up chest xray in the morning.  If his lungs still need to be inflated, cpap might have to return to Hudson's bedside.  Keep in mind, Tuesday is eye day.  So, his eye doctor is waiting for him as he's having his "break from breathing" episode.  The eye doctor and nnp decided not to put him through any more stress today that he needed a break.  So, early am he's having his appointment.  And they cannot skip him this week because of his one eye being a zone or level 3.    Needless to say, Hudson scared the bageebers outta me!  As everyone is working on him, all I kept thinking is, how selfish of me to be pushing him when he is clearly not ready.  The nnp also reminded me that a side effect of a UTI is bradycardia (brady) and he'd had quite the stressful hour before that with his picc line.  He's just a sick little turkey!  The hour after his episode I sat by his bed and looked at him.  He slept, and slept hard.  They were able to slowly turn his oxygen down to about 30, but he is still at the higher lpm and will be for the next day or so.  He slept through his next care time, which for him he hasn't done since he was just a few weeks old.

Glossary:
Bradycardia:  A heart rate less than 100, slower than normal for an infant.
Apnea:  A pause in breathing that lasts for longer than 15-20 seconds.
lpm:  liters per minute humidified oxygen delivered through the nose.

So needless to say...after learning our new plan and then Hudson's major episode I heard "well with preemies one step forward several steps backwards"  I cannot stand that phrase!  But we've learned it is so true!

Hudson weighs 5.5 lbs today!!!!  (so for surgery he's got 1 lb 1 oz to go to meet that requirement)

This morning before everything happened, Hudson and I had a great time.  We talked and had picture time, of course every day with Mommy is a picture day!  I told him about Granny's birthday and we needed to take a special picture for her...well I'd like Granny to think he was focused on the camera...but he was more worried about what I was doing with his pacifier.  He loves that thing!

"Mommy, give me my pacifier back and you won't get hurt!" - Hudson

(One would think I'm taking this picture, but really I took Hudson's pacifier and put it next to the camera for him to look there:)  You can tell where his interest is now!)

"See, nobody got hurt!  Now leave it!" - Hudson

"One eye security for my pacifier!  It seems to disappear when I close both my eyes." - Hudson

"So, do I get any of Granny's birthday cake?" - Hudson

"I give, where's my pacifier?" - Hudson

"I just want to sleep!" - Hudson

(This was after his brady caused by apnea...you can tell a difference in his color)

As easy as it is to wish away the days to be home, I'm so thankful I have each day to learn Hudson's quirks!  He is such a turkey!  Very Blessed and Thankful.  God is still very much present and listening to our prayers!  Every day is a gift!  My new motto is to Wake up and unwrap it like it is Christmas morning!!!

Have a great day!!!!

I'm 2 months old today!!!

"Mommy is that you?  I heard Daddy put up the Christmas decorations, is that true?" - Hudson

 

"I love belly time!" - Hudson

"I was a little chilly so my nurse got me a warmer.  I'd like to think she read my mind, but I think she took my temperature.  And check out my o2 number!" - Hudson

"it's be a rough day!" - Hudson

"I love how Mommy makes my hair crazy and massages my head!" - Hudson

Found out on top of Hudson not tolerating the formula he also has a UTI.  So he's now on antibiotics for that.  UTI's usually take about 7 days to clear up.  I've not chatted with his surgeon yet, but the neonatologist did tell me today that surgery will not happen until the UTI is gone.  Hudson weighed 5lbs 7oz today.  The biopsy results came back and Hudson does not have Hirschsprung Disease!  Woohoo!  On to the next test before surgery can be scheduled.  They started Hudson's feed up again today.  Starting out at a smaller volume and over the next couple of days will work back up to the full feed.

 

Thanks to wikipedia...Hirschsprung disease (HD) is a disorder of the gut that occurs when all or part of the large intestine has no nerves and therefore cannot function. During normal fetal development, cells from the neural crest migrate into the large intestine (colon) to form a network of nerves called Auerbach's plexus. In Hirschprung's disease, the migration is not complete and part of the colon lacks these nerve bodies that regulate the activity of the colon. The affected segment of the colon cannot relax, which blocks the passage of stool through the colon. In most affected people, the disorder affects the part of the colon that is nearest the anus.

 

 

Hudson and I had lots of snuggles today...we also had a photo shoot today!  Those pictures coming to you soon!  Hopefully soon Hudson will be back to his happy go lucky self with all smiles:)  I don't like him not feeling well and being fussy.

Sunday

Today Hudson was 5lbs 7oz and 17.5 inches long!
Ben and I came back to Lafayette today and shortly after noon got a call that Hudson had some changes, just to make us aware. 
((Tuesday they started weaning him to formula and Friday was all formula)  Friday he was really gassy and stinky...boy!  He got fussy and started throwing up a bit here and there.  Friday night gas so bad he popped his bag off his skin...twice!  Which meant wardrobe changes...which he hates!  Saturday more gas and just not happy with way more than usual output in his bag.  More pukes.Saturday night another blowout!)
Today output wasn't as bad but gas was worse and more pukes and fussy...so belly xray ...showed lots of air in his intestines so they stopped food.  He is on clear liquids through an iv and has a tube down his throat taking stuff off his stomach.  Had another xray at 2p and was worse but 8p xray was improved!  Another xray in morning and day shift will make adjustments to feed nutrients by feeding tube via breast milk or another formula or tpn through iv (stuff he was on before he started eating breast milk)...surgery was consulted and they put a catheter in his stomach to relieve air and check for a blockage.  Needless to say it scared us enough to go talk face to face with the doctor especially since I got one story at noon and Ben got a slightly different one later in the day ...
Thanks for your continuous prayers!  We appreciate them!
Lots of love!

Friday & Saturday

Picture with Hudson and his surgeon pre biopsy.  Hudson's onesie said future M.D. his surgeon got a good laugh!  Biopsy went great and should know results Monday,Tuesday at latest.  The third picture is post biopsy ...he was exhausted!

Fourth picture is right after Ben kissed him.

Fifth picture is Ben doing Hudson's oral care.

Final two are just funny Hudson faces.