Home Tomorrow!

We are on track for discharge tomorrow at 4:30pm.  Andrew's last dose of antibiotics is scheduled for 4:00 and will run for 30 minutes. After that we are out of there!  His reflux continues but we finally decided today that his discomfort is worth giving Reglan a chance.  He got his first dose this afternoon and we will of course continue it at home. If there is no change by next week, we'll stop it. His diaper rash is mildly improved, too.  Our night nurse last night came up with quite the elaborate setup to encourage it to heal.  For those of you that are nurses, it's butt blow-by.  But this set-up is far more advanced then what we used in my PICU days.  Basically, they cut a hole in the buttom part of his diaper.  The urine is still targeted to the front of the diaper. They then make a "tunnel" for his stool to direct downwards.  His cheeks are up in the air with cream on them and oxygen breezing by.  And then, to prevent his tush from getting cold, they have a heat lamp shining down on him.  Crazy.  Here is a pic in case you don't believe me:)

Healing my diaper rash!

And here is a picture of how big our guy is getting.  He looks so big to us with those new chubby cheeks.  Today marked a record 4 pounds 15 ounces!!!

6 weeks old!

I can't wait for out little ones to be reunited tomorrow night!  They must have missed each other...

Ready for Thursday

Today was a hard day for me. I'm exhausted, frustrated and just overall done with the hospital.  Andrew is miserable.  He constantly grunts, grimaces, cries and dribbles milk out of his month.  Today I held him for almost two hours after each feed, and the second I would put him down after, he would start with these symptoms. The only thing that seems to help is if I hold him completely upright, on his stomach, on my chest.  This may be possible to do quite a bit at home if I had one child....but not with two.  None of the attendings want to treat with anything other than prevacid at this point since he continues to gain weight.  Prevacid helps with the acidity but not mobility.  Reglan is the other option, but with all the recent media focus on its neuro side effects, everyone is hesitant to use it.  Their only suggestion at this point is to eliminate dairy from my diet again.  It may also help the crazy stools he is having.  Actually, both Paige and Andrew are stooling nonstop, but Andrew has this horrible diaper rash that is also undoubtedly contributing to how miserable he is.  A dairy free diet is annoying, but I'm totally willing to do it if it will help.  I cannot stand to watch him be so miserable.  Those of you that know me know that I never cry.  Today that is all I have done.  I cried over spit up and a diaper rash!  I think I'm just done with this whole experience.  I'm ready for us all to be home and have some sense of normalcy.  And did I mention that my milk supply is completely dropping off?? I'm sure its related to stress.  Please just let it be Thursday...

Flying Solo

Another day behind us with Andrew at the hospital.  Hopefully only three more nights without him.  His reflux continues to make him miserable, although we haven't decided on how or if we should treat it with anything additional.  His last remaining IV infiltrated last night, too, and apparently there was difficulty getting access.  We walked in to a scalp IV today which I just hate. He also now has a little diaper rash that doesn't look very comfortable.  He just needs to come home where we can take care of him. But overall, nothing major is going on, which is good.

Jack goes back to work tomorrow, so I am doing all the nighttime feeds starting tonight.  My mom will then come and stay with Paige again during the daytimes so I can visit with Andrew. We'll see if I can survive through Wednesday!  But then we should have several days when we don't have to leave the house (aside from one pediatrician appointment for Andrew) so we can all catch up, rest and work on establishing a routine.  Everyone says that with twins you have to stick to a schedule and have a set routine.  I guess we'll find out if Andrew and Paige like that plan:)  More to report tomorrow.  To bed now for an hour of rest before pumping and feeding Paige. Goodnight!

Packing on the Pounds (or ounces!)

We made it to an open crib!  He maintained his temperature all day with the lowest setting in the isolette, so they moved him out this afternoon. We are all hoping that he does well overnight in his new bed. We are having some worsening reflux though, which is just about the most annoying thing ever.  Poor guy has classic reflux symptoms and is going through several outfits a day.  We should be buying stock in Dreft!  I talked with our favorite attending about other treatment options today that we haven't tried.  I'm not in love with any of the ideas so we are going to watch him more closely over the day or so and make a decision.  His reflux doesn't seem to be affecting his weight gain so far though.  He weighed in at 4 pounds 10 ounces today!!!  This is the closest he's ever been in size to his sister.

Speaking of Paige, she continues to be amazing.  We are so in awe of her and just want to cuddle with her all the time. She is really starting to master the eating thing and is chugging her bottles in shorter times and with less dribbling.  Her awake and alert periods are also getting more frequent and more lengthy, which is really fun -- although not after her 3am feed when she doesn't want to go back to bed!  The difference between one baby and two is huge!  We learned that just from the two nights Andrew was home.  We laughed today that we feel so well rested and full of energy after a night with just Paige feeding every 3 hours! Ha!

Jack goes back to work Monday, so tomorrow night I will be feeding solo.  We'll see how that goes!  We are all heading to bed now to try to get some rest saved up for during the week.  Its always hard to be without Andrew at night, although tonight is a little easier.  One of our favorite night nurses has him and she already called saying they were hanging out together watching the Hokies game.  It's so comforting to know that he is in good hands and is getting special attention.  Thanks, Vivianne!

One Day Closer to Home

Andrew continues to do well in the NICU, although we all miss him terribly.  He remains in his isolette and they are slowing weaning down his temperature.  They brought in an open crib earlier today, but his temperature is borderline so we are holding off for now. His cultures are all still negative but we are definitely completing the seven day course of antibiotics because of his clinical symptoms and other lab work on arrival.  His ANC has more than tripled in the last day though, which is good.  If all goes according to plan, he will get his last dose of antibiotics Tuesday evening and then may get to come home again.  It will be so nice to have him back!

Visiting with my favorite little guy today

Paige visited our new pediatrician's office this morning and they thought she looked great.  She came in well over 5 pounds, which was very exciting!  They talked about giving her 2 month shots at the next visit.  Can you believe we are already there?!?!  Crazy. 

Look at he cute outfit I wore to the pediatrician!

And I sat in the comfort rocker for the first time tonight (please ignore that its blue and my brother's! Mom & Dad have been slow about assembling mine!)

Please think warm thoughts for Andrew tonight and hope that he can come out of his isolette and play tomorrow!

Our Strong Little Guy

Andrew is doing much better.  He seems to like his antibiotics, although they still haven't found a source of his infection.  He also responded very well to the blood they gave him last night.  Yes, he finally required that transfusion that we've been debating about for a month.  He has color for the first time and looks great with his pink hue:)  His breathing was labored throughout the day so they wouldn't let him eat until late this afternoon.  Poor guy was starving and very mad about this.  It was so good to see him have energy to be mad though! They got a chest xray, which was a little hazy but not overly concerning.  They think he may just be a little wet from all the fluid and blood last night, so he got two small doses of a diuretic to help him better manage this. He was breathing a little more comfortably when we went back tonight though and he was so ravenous during his feed that he finished his entire bottle in under three minutes! You would think he hadn't eaten in days!

It is a little sad to see him back in his fancy isolette, which is the exact same bed that we started out in long ago.  This time around though, he almost looks big!  Here he is hanging out tonight:

Look how big our little cutie is!

It will take a couple days to wean his bed temperature back down to the point that he can self regulate and come out again to an open crib.  They also want to do about a week of IV antibiotics, so he will stay back in the NICU for at least that long.  It is amazing how strong our little guy is though and how beautifully he has handled everything that he has been through in the last 24 hours.  Hopefully, this next discharge will be for good and this will be the end of his torture. 

We did contact another pediatricians office this afternoon and talked with them about their management of high risk preemies.  They were very responsive to our questions over the phone and want to meet us, including Paige, first thing tomorrow morning.  I am so hoping that we like them and feel comfortable with their care.  The pediatrician we had chosen before was incredibly liberal in her management and didn't think frequent weight checks and labs, as the NICU recommended at discharge, were necessary.  She also didn't seem to think a barely 4 pound baby with a temperature of 96 degrees needed help.  Our NICU team called her office last night, as a courtesy call, to let them know their patient (Andrew) had been readmitted and was pretty sick.  They never called the NICU or us today to see how he was.... This only solidified our decision to switch care.

Paige continues to do great at home. We are slowly increasing the volume of her feeds, as she is waking up hungry and taking the amount with ease.  You can almost see her growing in front of you.  She looks great and we are hoping to break the 5 pound mark when we meet the new pediatrician tomorrow morning!

Thanks for checking in and for all the calls, texts, emails, and support last night and today.  Last night was very stressful but we are ALL doing much better today (besides the exhaustion which isn't going away any time soon!). 

Back to the NICU

Sorry for the lack of post yesterday. We were exhausted and then today has been rather eventful and quite stressful. Andrew had his first pediatrician appointment this afternoon and they took his weight and temperature. His weight was good - over the four pound mark! But his temperature was very low - 96 degrees rectally. This greatly concerned me but the pediatrician seemed pretty relaxed about it. She advised us to turn up the heat at home and buy a space heater for next to where we sleeps. In her defense, he did look great at that point with awake periods and effortless feeding. I was more worried though so I called the NICU when we left just to run it by them. They were much more concerned and advised us to bring him right in as a direct admit to be put in an isolette. They said that with a baby as small as he, it is nearly impossible for them to bring up a core temp that low on their own. We immediately packed him a bag and jumped in the car to head back to the hospital.

When we arrived, his temp was better and everyone's initial thought was that he is just small and needs some more help with temperature regulation. Then, as if a light switch was hit, he was more sleepy, wouldn't eat, and wasn't acting like himself. After a few quick labs, we realized he is likely septic or has some sort of infection that he isn't mounting a response to with a super low white count, super low ANC, and dropping crit (for those of you that are medical). The team just sent us to the waiting room (where I am writing this on my blackberry, please excuse typos) while they draw labs, get cultures, do a spinal tap, and get IV access. We will anxiously await all of these results and I will stay at the hospital tonight with him. Jack will go home to give my mom a break and do a couple feeds with Paige. Please keep Andrew in your thoughts and prayers tonight and hope that we caught this early and that he makes it back home with us again soon.

P.S. We are searching for a new pediatrician...