Home Sweet Home

We made it home!  What a great feeling.  We got home really late last night...the early morning discharge did not work out at all.  They had a lot of stuff that we had to get done before Hope could be discharged.  Finally, around 7pm we were done with everything and loaded the car with all of Hope's stuff (yeah, she had a roomful) and made it home a little after 8pm.  It was actually kind of scary driving home because Jerry and I were in separate cars and I was worried the whole way home that something might happen.  We got everything organized and set up and finally went to bed after her midnight feeding.

Today was our first full day at home and even though it was hectic and we had some learning curves, it was perfect.  We had the pulse ox delivered and Hope was at 84...higher than most of the time at the hospital!  I think some of it was from the nice air she was breathing outside.  Yes...the weather was nice enough for her to spend a little time watching the boys play.  We also had the home health nurse come over and talk to us and show us how to do everything else that we need to do every day...like weighing, feeding, medicine, etc.  Some it was stuff we already knew, but we both had to be here to make sure we both know how to do everything we both know the schedule.  I put together a spreadsheet with the days and times everything needs to be done.

I am posting a bunch of pictures from the last few days.

Pretty in Purple

Look at all her stuff....this is from the first trip to the car!

Dressed for home:

In her new car seat

I want to thank everyone again for everything they have done.  I know everyone went out of the way to help us and we appreciate all of the help more than words can express.

Homeward Bound

So far, so good.  It looks like I am bringing Hope home tomorrow.  I am spending the night at the hospital to make sure I know her full schedule and then I am getting tested tomorrow on replacing her NG tube tomorrow.  So far, everything is looking good for her to be discharged...just not sure what time.  When we get home we will have a few visitors delivering stuff for her.  She will get her own pulse oximetry machine that checks her oxygen saturation levels.  I will need to check that at the same time every day and call the cardiology nurse every day with the results.  I also need to weigh her and give the nurse that information as well.  I bought a scale and I am hoping that will be delivered tomorrow or Thursday as well.  The home health care agency will also be delivering a food pump for her NG tube and I need to be there so they can show me how to use the machine.  I guess it is a little different than the ones they use in the hospital.  I am sure it won't be too difficult to figure out, but it is nice that they will be showing Jerry and I how to use it.

Today has been pretty uneventful around the hospital which is great.  I brought a suitcase to pack up all of Hope's stuff...and there is a lot.  Marilyn and her family bought Hope a new stroller and car seat which is awesome.  It is pink and brown and I have strolled the halls of the step-down unit to get her comfortable with being in the car seat.  She kind of liked it, but I know that she enjoys being carried around a lot more.

I have requested an early discharge, but I am guessing early around means sometime in the afternoon.  I asked for 9am...let's see what time we actually get out of here.  It will just be so great to be taking my little girl home for the first time.  I am sure the boys will love seeing her and we can finally all be at home.  I am so excited and I think Hope is as well.

I didn't bring the connection to download pictures, but I will get some posted tomorrow when we get home.  I know I will be taking a bunch when we are getting ready to leave.

Boys Visit and Pictures

Today was a wonderful day with Hope...other than her throwing up two of her feedings (more on that later).  Because Hope is basically OK to be discharged for rehabilitation I was allowed to take her out of the step-down unit to the 4th floor waiting room.  Jerry and the boys were there waiting for us.  They are not allowed in the step-down unit because of flu season, so they have not been able to see her for almost a month.  They have missed her and I think she has missed them as well.  I spent 1/2 an hour with all of them and it was the greatest 1/2 hour I have spent in a really long time.  I felt like we were a family for the first time in a long time because we were all together.

Tomorrow Jerry and I are taking a tour of the rehabilitation center to see where Hope will be going for a little while when a bed opens.  They don't think she will be able to get in until sometime next week...I am hoping for early next week.  The sooner she gets in there, the sooner she can come home.  I am getting prepared to learn how to measure and insert the feeding tube.  I get the feeling that she is going to come home with a feeding tube and I need to know how to check and change it before she comes home.  I already know how to check it...that's the easy part, but changing it is the scary part for me.  If you insert it wrong, it can go to the lungs rather than the stomach and that is what scares me the most.

Now to the problem with throwing up...I am sick of it.  I really wish I knew what was wrong, but I really don't have a clue.  They are going to have an ENT (ear, nose, throat) doctor take a look at her on Monday to see if there is any problem in those areas.  I have also asked if they could have a stomach doctor take a look at her...it looks like she is throwing up a lot of mucus, not formula.  She is also not throwing up during the feeds and it is happening with both NG feeds and when she is fed with the bottle.  The weird thing to me is that it is happening about an hour after she is done eating and it is not happening with every feeding.  It is puzzling to me and I am hoping maybe a doctor can figure out what the problem is...she really needs as much food to stay in her as possible.  Big news this morning...she now weighs 2.7 kilos (she was in the 2.6s for so long).  That is almost 6 pounds!!!

Thank you once again for keeping us in your thoughts and prayers.  We appreciate all of the support we have received through this journey.