Tuesday, February 23, 2010

Excellent Visit with the Boys! :)

I slept in terribly late today.  I got up to pump during the middle of the night, but I didn't actually get up until about noon!  I had wanted to get up early and go see the boys.  WHOOPS!  But, I have to say that it felt good to get some serious sleep.

As soon as I got to the hospital, the doctor came in to see me.  She wanted to know when we could schedule our overnight visit with Colton!  WOOHOO!!!!  So, here's the plan . . . We are staying over on Saturday night to see if we can manage his feedings.  I have never had a problem feeding him except the first time I did it (you know, when I had no idea what I was doing and made the poor baby cough, spit and sputter!).  But the nurses have had some bad feedings with him, particularly at night.  So, Bubba and I will get a dry run with help nearby.  Then, they will order the apnea monitor and oxygen for him.  The company who supplies it needs to "train" us how to use them.  When the doc told me this, she kind of rolled her eyes like it was no big deal.  I said, "Oh, yeah, I know I shouldn't smoke near the oxygen tank!"  I think she thought I was serious.  I quickly told her Bubba and I don't smoke. (I guess not everyone gets my sense of humor!)  The oxygen he is coming home on is 1/16 of a liter.  It's more than he is actually on now, but it's the lowest the home oxygen tanks can go.  She said it will actually be easier on him to transition home and easier to wean.  I asked about the carseat challenge test.  She said that will probably be done after the overnight visit, but that it only takes 30 minutes.  I thought it was longer than that, but she said no, just 30.  But, they do it when he has a full belly and is sleeping.  This is because that is the hardest time for the babies to breathe.  

He had his echocardiogram and his physical therapy evaluation done today.  The official echo results aren't back, but a little birdie told me everything looks good.  No Viagra for Colton.  The physical therapist called me before the eval and explained how the test is done and what it is evaluating.  She warned me that micropreemies usually score below their gestational age and not to worry when he does.  When she called me back she said she was very excited to test Colton and to calculate his score.  She said she didn't cut him any slack nor give him extra points for being cute.  She said his results were average (there are only two catagories: below average and average) and that a score of -0.5 and above is average.  His score was a +0.23.  According to the test, he is physically between 37 and 38 weeks.  That's exactly where he is in adjusted age!!!  Meaning, if I were still pregnant, I would be 37 weeks and 3 days.  He's not delayed as most micropreemies are!  That's my boy - an overachiever!

The other day, the nurses had some of my breastmilk that was about to "expire" (refridgerated is only good for 48 hours, defrosted is only good for 24 hours when babies are in the NICU).  Because of this, Colton got a few feedings that were almost all breastmilk.  Guess who only wants the breastmilk now?  He is normally given breastmilk first and then the formula.  Not anymore!  Now, he gets about half of his formula, then his breastmilk, and then the other half of his formula.  It's like he's having his dessert in the middle of his meal.  When I fed him tonight, he had no problems at all.  No spitting, no sputtering.  Lots of burping though.  Everytime he burps at least one of the nurses says, "Oh my goodness!  What a burper!  He burps like a man!" 

The doctor and I also talked about Seanie.  We talked about transferring him to my work.  She wants to know the name of the machine that we use for high-flow oxygen and if they are able to do and echocardiogram (and have a cardiologist read the results) and treat him for pulmonary hypertension, if he has it.  She says if that's the case, he can probably go when Colton goes home.  She thinks he will probably be home with us "within weeks," but said she doesn't know if that will be three weeks, four weeks or six weeks.  She says he is a little stuck where he's at with his oxygen support, meaning he is still on the 6 liters/minute, even though his percent of oxygen is down.  They are going to check some of his protein levels to see if he doesn't need a higher protein formula.  Low protein levels in the blood causes fluid to leak out of the blood vessels, causing edema.  Edema is something we are almost always battling with Seanie.  When his edema is bad, his respiratory status is affected because of the fluid in and around his lungs.  So, maybe this is the answer.  We will see. 

I did get to feed little Seanie today.  He ate almost two ounces in about 20 minutes.  He eats like a champ!  He is getting about half of his feedings by the bottle.  The other half are started by bottle and then finished with his tube when he shows that he is getting tired.  They are doing this so that he doesn't get worn out.  It's the combination of the breathing, the forced air from the vapotherm, and the eating that wears him out.  Everyone believes that if it weren't for the breathing issues, he would be taking all his feeds by bottle.  In fact, he is a better bottle feeder than Colton.  About 45 minutes after feeding him, he was really fussy and wouldn't settle down.  I picked him back up and held him.  He kept wiggling and wiggling and fussing and fussing.  Then, he started sucking on my shirt.  Um, kiddo, it doesn't work that way.  So, I tried breastfeeding him.  At first, he wasn't sure about the whole thing and was clearly frustrated.  Then, he settled down and started to feed.  Now, he wasn't getting much of anything since I had just finished pumping and he would suck and stop and suck and stop.  He spent most of the time in the stop mode.  But, it treally settled him down and he fell asleep. 

Night all! :)

Sunday, February 21, 2010

Weekend Update

Bubba and I made a quick trip to see the boys yesterday morning.  I had to work last evening, so we were only able to stay for about an hour.  Seanie was sleeping while we were there.  His nurse said he had been fussy for quite some time and she had just got him to sleep.  So, we didn't wake him while we were there. 

Colton was hanging out and woke up when we came in.  That meant I spent all my time there holding him.  He is such a sweet little cuddler!  He is getting to be such a big boy!  He is 6lb!  :)  And, so far, he is continueing to move towards coming home.  :)  Of course, my "to-do" list that needs to be done before he comes home is about a mile long!

Last evening at work, I talked to the pediatrician who was working.  On Monday, she is going to talk to the neonatologist at our sister hospital to find out about getting Seanie tranferred to us.  It seems we don't do vapotherm, but we have something that does the same thing (high flow of oxygen that is humidified and warmed).  Maybe Monday we will have some good news about Seanie moving closer to home when Colton comes home.  Aaaaww, that would be so nice!

Also at work, I had a patient who had an emergency c-section in the middle of the night like I did.  She was worried about her recovery.  She and I definately bonded over our experiences.  Her husband was trying to get her attention and she told him not now, she needed to hear my story because it was making her feel batter about hers.  I also spent some time talking to a family who is very upset about their baby being in the NICU.  Their baby's NICU stay will be nothing like Colton and Seanie's.  I don't think they realize how lucky they actually are.  But, I also think that having a baby in the NICU is traumatic no matter what is going on.  I also told another family their baby was big.  He was only about 7lb!  Well, to me, he was HUGE!  LOL!

Today I work again.  I won't be able to see the boys.  :(  Bubba will go up and spend some time with them today a little later on. 

Friday, February 19, 2010

One day, two updates!

When Bubba and I went in to see the boys, the doctor came in to talk to us almost immediately.


Because Colton has a discharge plan!!  What does that mean?  He has a list of things to do in the next week and then he can come home at the end of the week.  Now, something could happen to keep him there a little longer, but that's just how it is in the NICU.

Colton needs to not have any A's or B's (apneas - stop breathing; brady - drop heartrate) that he can't recover by himself.  He needs to continue to eat well and gain weight appropiately.  He needs to pass his primary pulmonary hypertension echocardigram (if he has PPH, the treatment is a course of low dose Viagra, called Revatio).  I told the doc that if she gives him Viagra, I'm not changing his diaper - Bubba can do it!  LOL  And, finally, he needs to pass his carseat challenge test.  Before he comes home, Bubba and I will spend the night in the hospital with him.  We get a room and have to take care of him.  This is done to make sure we can manage him.

Now, what about little Seanie?  Seanie will have to stay at the hospital.  He's not eligible for transfer to my hospital.  My hospital doesn't do vapotherm and he's not doing well enough to do high flow oxygen, which is what my hospital does do.  :(  It's going to be hard managing Colton and visiting Seanie 90 minutes away.  And, of course, we can't take Colton into the NICU to see Seanie.  :(

Didn't forget about the blog! :)

Hey everyone!  I know I've slacked off this past week.  I'm sorry.  First, let me say the boys are doing well.  There's nothing to worry about. :)  They are going to be 37 weeks on Friday (that's 11 weeks old!).

Sean is now 4lb 5.1oz.  He is taking about half of his feedings from a bottle.  He is now eating 48ml of a 27 calorie mix of 50 % 30-calorie formula and 50% 24-calorie fortified breastmilk. He eats every 4 hours and will often fall asleep while eating, but he continues to eat!  While this higher calorie mix will put some weight on the skinny peanut, it's not easy on his digestive system.  It makes for a very stinky boy!  His nurse walked away tonight while I was doing a diaper change and said, "Good luck with that!"  When I left, he was pooping again.  On my way out the door, I told her, "Good luck with that!  I'm going home!"  Seanie is now on vapotherm.  He is doing well on it.  He is always active and alert.  He gets some cuddling every visit now.  We have to make up for all that lost time.  All the nurses know when Seanie wants something.  He's not quiet about his needs.  Wonder who he gets that from???  One thing that I have noticed this week is that is appears that his eyes are changing from the newborn blue-grey to something darker, maybe brown.  If his eyes are in fact getting darker this soon, he will definately have brown eyes.  The little bit of peach fuzz he has on his head is definatley dark!  To my family - he looks like a Gaffagan.  No doubt about it!

Colton is now 5lb 13oz!!  The kid is a freaking MOOSE!!! :)  He is still on his low flow oxygen of 25ml/min.  I asked, "Can't I just blow in his face every few minutes??"  LOL  Up until yesterday, they would have to increase it during feedings, but now he's able to keep it at the 25ml.  Really the next step is to turn it OFF!! :)  He is taking all of his feedings by bottle.  He gets as much as he will eat.  So, usually it's between 50ml and 80ml.  For awhile they were trying to get him to dictate his schedule.  That didn't work. He would rather sleep.  So he's on a 4 hour schedule unless he wakes up sooner.  He, like his brother, likes to fall asleep while eating but continue to eat.  And, when it comes time to burp, he likes to impress the ladies!  The nurses across the room will say, "Good boy, Colton!"  He burps like a man!  Colton looks like his dad.  That's for sure.  The nurses even comment about it.  He has light hair and his eyes are blue, not the newborn blue-grey most babies have.  It will be interesting to see what both Colton and Seanie look like in a few years.  No doubt about it, they are NOT identical.

For the last two weeks, the nurses have told us that Colton will be coming home in about two weeks.  So far, his homecoming is two weeks away.  He needs to feed better and the doctors would like him off that little bit of oxygen he's on.  However, he can come home on that amount of oxygen (Sean will probably come home on more oxygen than that).  No estimated homecoming date for Seanie. 

I have returned to work until the boys come home.  It's okay being back to work.  I love the gals I work with.  I will miss Chewbacca.  Chewie and I shared a due date.  Monday was her last day before her maternity leave.  It was my first day back.  We had a potluck and a baby shower for her.  Sadly, she won't be coming back to work with us once she has her baby.  She will be moving to another hospital.  We will all miss you Chewie!  Being back at work did bring back some memories of the night I had the boys.  And, let me tell you, it wasn't the good parts of that night!  I used to think women who said they had PTSD from their deliveries were a little (okay, a lot) wacky.  Um, yeah, not so much anymore.  I can see how it happens. 

And, I promise I won't wait a week to update the blog.  I really am sorry.

Thursday, February 11, 2010

Big Boys! :)

Colton is now 5lb 7.6oz.  Seanie is 4lb! :)

Colton is taking all his feedings by bottle now.  When the nurses feed him, he eats aboiut 2oz in 30 minutes.  He should be eating his meals in 30 minutes or less.  Feedings taking longer than 30 minutes are too tiring for the babies.  Now, when Mommie feeds him, it take quite a bit longer to get 2oz in little Colton.  Not only does Colton need to learn to drink from a bottle, Mommie needs to learn to feed him using the bottle.  Colton also had his eye exam yesterday.  NO ROP!  He gets to have his next eye exam in one year! :)  His oxygen is now down to 30cc/minute.  And, he got a visit from his neurosurgeon who is very happy with his progress. 

Seanie is tolerating his SiPAP very well.  Everyone is very happy about his progress.  He has had a few attempts taking his feedings from a bottle.  He doesn't do too well, but the nurses say it's difficult to eat with all that oxygen flowing in from his SiPAP.  He had another eye exam this week, too.  No ROP, but he does need another check in two weeks.  It's not because the doctor saw something he didn't like, it's because he is still on oxygen.  During our visit tonight, Daddy got to hold Seanie for about 30 minutes. :)

Tuesday, February 9, 2010

Update of a long week . . .

I've been busy celebrating the good news! :)

Colton has been taken off the vapotherm and is on a regular nasal cannula.  It's only on 50 milliliters/min.  This is something he can come home with!  He feedings and care have been switched to every 4 hours instead of every 3.  He also had a few days where he tried eating one meal a day by bottle.  Yesterday the doctor said to take out his feeding tube and have him take all his meals by bottle!! WOOOHOOOO!!!  The nurses are estimating that Colton will be home by the end of the month!  He still needs to complete his car seat challenge test.  He has to be able to sit in his car seat for an hour and tolerate it.  That is done about a week before he gets to come home. 

Seanie has stayed off the vent! :)  He was on SiPAP for about 4 days and then was switched to vapotherm.  He is on the highest setting, but he's on it and tolerating it pretty well!  :)  He is now allowed to have the top of his isolette open, but they have to keep a little heat on him or else he gets too cold.  He does get to wear a onesie as well.  His feedings and care have also been moved to every 4 hours.  This little man is definately moving in the right direction!  WHEW!  Seanie weighs 3lb 12 oz now! :)


Wednesday, February 3, 2010

Colton's Surgery

Colton's surgery went off without a hitch!  Both surgeons were very happy with how things went.  When he came back from the operating room, he was still really sedated and remained on the vent.  After a few hours they were able to extubate him and put him back on his highflow nasal cannula.  His settings are higher than they were before surgery, but it's what was expected.  Colton did have some pain when he got back to the NICU.  His heartrate jumped to 200 (normal is about 170 for him).  He was given some tylenol and fentanyl (a pain medication).  He's only had the one dose of fentanyl, but he's getting tylenol every six hours. 

Tonight when we visited, Colton was very sleepy at first.  Then after about 30 minutes he was wide awake and wanted to be social.  So I held him for about 30 minutes.  He was his normal snuggly self! :)

And, now a little GREAT news about Seanie.  He is off the vent!!!  The doctor decided to try him off the vent to see how he would do.  So far, so good.  The nurses are keeping the vent at his bedside to "ward off evil spirits."  I say they can keep it there until he comes home!  Because he is off the vent, he can now be held!!!!!  It took him about 10 minutes to figure out that it was okay to be held.  He was a little squirmy for awhile.  But, he settled down for a bit.  I held him for about 20 minutes.  :)

Monday, February 1, 2010

Update on Colton

Colton's surgery went well.  Both surgeons were pleased with how things went.  He was back in the NICU within about 3 hours.  He was very sleepy and kept on the vent for several hours.  But, now he's off and back on his vapotherm.  His settings are a little higher than they were, but that was to be expected.  As soon as he acts hungry, they will restart feeding him.  They will start out with a low volumn and then quickly increase it back to where he was.

Seanie is hanging out on the vent.  The plan is to get him off it this week.  Gosh, I hope so.  He's been vented this time since Jan. 12th!  Poor kid!  He did get his feedings increased.  He is now eating over an ounce every 3 hours.  :)