Looking good

Our appointment was full of good news!  Adelina's heart is doing as well as they wanted.  Her oxygen saturations are in the high 80's, which is amazing :)  Her EKG looked good and she no longer has wet lungs.  She is also not aspirating liquids into her lungs.

None of her meds have changed and she will remain on oxygen for some time which kind of surprised me but her cardiologist explained that the main concern after this surgery is fluid build up in and around the lungs, so the oxygen is more like a medicine than a life line.

We saw the feeding clinic and were cleared to give her bottles once a day and turn off her feeds for two hours a day.  We tried the bottle the first day and she took nothing :(   I was a little disappointed but hey, we have her and I can live with a tube.

I asked about going back to Texas and was told that we can talk about it in May.  It wasn't a no so I'm hopeful :)

Next appointment coming up

We are meeting with our cardiologist in the morning.  It's been nice to have a little break from the hospital :)

Cuddle time

I just can't get enough of this little one.  If I could hold her all day every day, I would!

We believe in sleep

We were awake for one hour before we decided a nap was in order.  I walked away for just a minute and came back to this peaceful little one.

4 months old

We are so excited for Adelina to hit four months old!  She is such a light to our lives with such a ready smile.  She is determined to roll over even though she is not allowed to just yet :)  She has found her voice and it's so sweet.  She loves to sit up and see the world.

No news is good news, right?

I feel terrible that I have not posted since the 5th.

First, Brent picked up the stomach flu on the 6th so I ran him to my parent's home... with the computer.  Yes, that does explain a lot :)

Adelina had some issues with her incision needing to drain so she needed a little more help with pain.  I would call in the morning to see how her night was and they would reply that it was "rough."  Eventually we decided that we were not on top of her pain so they added morphine and were able to get her back on track with just one dose.  Good thing too because her IV failed shortly thereafter.

We then kept her on round the clock doses of Tylenol and Oxycodone.  The combination worked but if they waited even 15 minutes to give her the oxy she would struggle for a couple of hours.  They kept her on both and we were discharged on Thursday the 9th.  We were sent home with instructions to wean her off the oxy in the next couple of days.  Now that I've had this experience I wish they would have done that at the hospital.  We have now had four nights of very little sleep.  The first night I had meds to give her every hour- two hours and she was upset in between, the second night was the same.  I did not wean her completely until last night and even then we had a rough night.

Luckily, she seems like her happy self again this morning.  I'm hoping she will take a great nap this afternoon so I can join her :)

I keep hearing comments about why I can't take care of other things.  We still have babysitters come in the morning when Brent is not here and my mother takes care of the kids in the afternoon.  It is all I can manage to pump (at 8, 11, 2, 5, 8 and before bed), keep up on meds (at 8, 2 and 8 not including pain meds), mix bottles (usually around 4), change out feeds (8, 12, 4, 8, and before bed), clean up throw up (we went through 8 outfits and blankets on Friday), change clothes, change diapers etc.  This part I have down pretty well the real trick is basics like making and eating food? Showering? Laundry? Washing bottles and pump parts? etc.  I am sure we will get there but right now it's taking a community to function and I am so grateful for that community :)

Daddy love

Brent guarded Adelina all day so that her pain was well managed and she was allowed to sleep for six hours straight.  Thank goodness for her Daddy!

Tomorrow will be a better day

The day has continued much as it started or maybe it's the migraine I finally kicked at 5 am... that's working it's way back.

We went to have her NJ tube placed under x-ray and they wanted to tie it in through one nostril and out the other so she will associate tugging on it with pain.  No Thank You.  I think we have enough pain in our little lives.

We tossed 24 hours worth of milk because she can't tolerate the formula they mixed it with and now she's not tolerating the other option well.  We only have two options.

We do not have our pain well managed today and Mommy is NOT okay with it.  We just got an order to add Morphine to the mix.  I'm hopeful that she will finally get a real stretch of sleep.

I finally held her but it caused her discomfort so I think we will wait a couple more days.  As much as I want to hold her I want it to be in her best interest, not

mine.

She should be sound asleep after getting some oxy an hour ago but instead she's checking out her swing.  The child life specialists here are amazing, Jen is our favorite and keeps us well supplied with swings, bouncers, mobiles etc.  She has started to enjoy board books, I love being able to distract her for a little while.

Two IVs have blown today.  Her foot is huge.  So grateful her nurse caught it when she did.

The IV team is on their way... enough said :(

Rough night

We called our nurse this morning to see how Adelina was doing and learned she'd had a rough night.  The top of her wound is not healing like it should (it's seeping) and she just looked and acted miserable.  Her labs looked good and her oxygen saturation's look great, she's only on a 1/2 a liter of low flow and can cry without dropping into the 50's.

Dr Griffiths came in and poked around her wound and decided if it doesn't look better tomorrow they'll intervene a little more.  She is back on antibiotics, just in case.  Our little advanced three month old pulled her NJ feeding tube during the night.  Food has not agreed with her since they took her off fat so I can't say that I blame her.  The plan is to put back the NJ and start feeding her again but they only have two fat free formula options and she isn't tolerating either one.  She has severe reflux and arches her back over and over again.  They spin down her milk to cut out the fat but then a full feed is only 10 calories instead of 20 which is just not enough.  She is our second baby that can not tolerate formula.

Look how far we've come!

The tower behind Daddy has no medicine flowing from it!  We are down to just her feeding pump.  She in on 1 liter of oxygen, down from 12 liters of high flow on Monday.  She no longer needs nitric oxide and although she is getting medicines in her feeding tube she is no longer on anything continuously.  We are waiting to see if she keeps her chest tubes today...  We hope to hold her soon and the chest tubes make that tricky.

Busy day

We have had a pretty busy day.  Addy no longer has one chest tube, an IJ line in her neck, anarterial line in her wrist.  We did gain to regular IV's but they were able to get both in on the first try.  She is no longer on presidex (sp?) or phentanol (sp?) and is weaning off melrenone (sp?).  I know these don't mean too much to you so I'll explain that the first two are sedation drugs and the last is a heart function drug.  She is no longer on nitric oxide and is down to four liters of high flow oxygen.

Unfortunately she has Chylothorax :(  This means that her lymph nodes are over drawn and leaking fat into her chest cavity.  She is now getting fatless feeds.  They spin down her milk and add calories without adding fat, we expect this to continue for the next four to six weeks.  We are still hoping a little that she'll prove us wrong but she's in charge.  Her last two chest tubes usually come out first but due to the Chylothorax they will need to stay in until this excess stuff is drained.

She is still on oxycodone for the crazy headache that they know she has but she is doing so well considering the battle she is fighting.

Hope

Our heart friend Melissa came today, we loved seeing her and will always love and miss her sweet Hope.

Progress

We are hoping today that Adelina will be able to lose her chest tubes and pacing wires.  The anesthesiologist came by and told us that they COULD NOT place an IV even when she was sedated.  That is now the third doctor to tell us how hard the Glenn was for them.  She has little bruises all over from trying.  They left in the one that was placed a week ago Tuesday but, yesterday, it fell out (it's miraculous that it lasted as long as it did), we lifted her foot and found we were successfully taking care of her bedding,  They want to take out the arterial line in her neck but need to place an IV before that is an option.  The anesthesiologist couldn't place an IV so I'm sure the IV team will struggle.  IV placement is the hardest thing for me when we are admitted, I dread it (even going in for surgery at least I knew she would be sedated before they would try).  The silver lining is that we will likely get to hold her today :)

Baby steps in the right direction

Adelina was extubated this morning!!!  Brent and I were finally able to be useful.  She wasn't too upset but clearly still drugged.  They gave her a little tylenol and with some parental comfort she is now sleeping peacefully and enjoying her high flow nasal canula at 12 liters of oxygen with nitric oxyide.  Her swelling has gone down considerably although she still has a ways to go.
 
Adelina opened her eyes and focused on Brent, she sure loves her daddy.  She is still getting sporadic help from her temporary pacemaker wires but we are expecting that she will start losing extra tubes today.  She's down to six meds but three are sedation, one is antibiotics and one they will wean off.  She had poor heart function after surgery so they gave her melrenone (sp?) which they expect to wean off after another heart echo is done.  She has not needed any blood pressure medicine but was on three before surgery, yay!

We are really looking forward to being able to hold her.  Maybe tomorrow :)