Thursday, October 17, 2013

Our Little Family: Update

It’s no secret that I have not been good at posting updates lately…or at all.  I have found that since we have been home it is very difficult to find the time.  I have been dreading this update because it has been so long since we have posted anything and it is going to be a big post.  I apologize for not keeping up with our Hannah updates. 

In our last post we were still in the hospital, I think most everyone knows we are home now!  But let me tell you about the events that lead to us coming home. 

The first week in July we finished our parent care and readied ourselves to go home.  We were looking forward to going home and expected it to happen fairly quickly after completing our parent care.  However, Hannah had several bad days in a row; she wasn’t taking in the volumes she should be.  They kept telling us “we will keep you another day so we can make sure she can do this”.  After hearing “just one more day” three days in a row we decided it wasn’t going to happen.  We were frustrated and tired of being in the hospital.  Ethan had to leave the night of July 4th to be back at work on the 5th, he was going to go back to work for good.  We decided together that he had been gone from work for too long and needed to return.
It was such an emotional week for me thinking everyday could be “the day” and everyday being let down.  I began feeling like it was never going to happen.  On top of that emotion I knew my time with Ethan’s support in the hospital was coming to an end.  After I had a meltdown in front of one of the nurses Ethan and I decided it would be best for me to go home for the weekend.  Ethan and I left the night of July 4th and drove home. 

I called Hannah’s nurse the next morning to check on my baby girl expecting to hear she had done poorly overnight.  I was surprised when her nurse reported that the doctor was thinking about sending her home today.  The nurse called me back after the doctors did their rounds for the day and they had made the decision to send Hannah home!  I was stunned; of course, the one time during this whole process that I go home they decide to discharge her.  If I would have known that was all it took to get Hannah to come home I would have left much sooner. ;)

So our weekend was cut short, not that we were complaining.  I called Ethan and work and told him he had to take one more day off work so we could go get our little princess.  We drove back that afternoon and after 54 days in the hospital we were able to take our sweet little girl home!  The strangest part of being discharged was when they unhooked her from all her monitors.  I could walk around the room with her and not worry about yanking her “leash”; I felt like running through the hospital saying “look what I can do!”

We are leaving!

The day after coming home with Hannah, Tina brought Jack home!  I was so excited to have both my kids in my arms in my own home, what a blessing.  Even better, it was just in time for my birthday.

couldn't have asked for a better birthday present!

Coming home was a BIG adjustment, and in different ways than I thought.  I thought it was going to be hard dealing with Hannah’s medical care.  This was a piece of cake after spending so much time in the hospital (and I only have to check her sats once a day).  The most difficult part was I felt like I had to learn how to be a mommy all over again.  I took care of Hannah the whole time in the hospital, but for some reason it was different now that we were home.  I hadn’t learned her cries yet and I was now in charge of her schedule.  It was difficult to adjust to this all the while trying to figure out how to be a mommy of two.  Despite the difficulty, I wouldn’t have it any other way.  I love having my family home!

 Best buddies!

 Hannah's first real bath (she only got sponge baths at the hospital)

 Jack's first time holding Hannah.  He giggled the entire time, even when she started crying

Hannah’s mamaroo came in the mail!!

We were home for a week and Hannah was struggling to adjust.  She still wasn’t eating like she should be.  I took both kids to Indy for Hannah’s first routine checkup and because her volumes were so low they decided to admit her for dehydration.  What a nightmare, BOTH kids with me in a tiny hospital room.  Thankfully the nurses are so sweet and willing to help.  They took over Hannah so I could take Jack out during the day so we all wouldn’t go stir crazy. 

The car ride to Indy

I told him not to bite his he did this instead

 And this was Hannah's reaction to being in the car 

 Playing at the children's museum

We were only in the hospital for 3 days this time, but it was the longest three days EVER.  Jack is so busy and I don’t realize it until I have to try and contain him in a hospital room. 

Other than our 3 day stay in the hospital, Hannah did not get admitted after we officially came home. We came close a few times because the doctors were worried that she was getting dehydrated.  Hannah still struggled to eat, but progressively improved.  The doctors said that as long as she stayed hydrated and gained weight they wouldn’t worry about her volume so much.  Despite the fact that Hannah has never taken in the volumes she “should” she gained weight really well. 

We would go to Indy every other week for our routine checkups.  Every appointment the doctors would say things like “she looks so good”, “She is doing amazing”, “She is so strong”.  Hannah is at risk to be developmentally delayed, but she shows no signs of delays at all.  She is such a rock star, so proud of my little girl.

 We blessed Hannah on August 4

 She has learned how to "escape" from her swaddle

 And she thinks its funny

I couldn't resist!

 We tried rice cereal for the first time

In one of her checkups we decided to schedule her second surgery for November 22.  This way we can do it over thanksgiving and Jack could go to Alabama and play with Nana and Papa and Ethan could be at the hospital with me.  If we do it over thanksgiving everyone could take off minimal amounts of work. 

October 8

Hannah had her heart catheterization today.  This is where they place a catheter in her groin and feed it into her heart.  They then measure the pressures in her heart and check the different areas to see if anything looks too small and needs to be ballooned.  This is a standard procedure they do before the second surgery to see if she could even survive the second surgery. 

A cathe is usually pretty taxing on Norwoods.  They are put under with anesthesia and put on a ventilator.  Our little Hannah didn’t like waking up and was very cranky.  She came back to her room very fussy and on oxygen.  The doctor sent the nurse to come and get me from the waiting room because he had to stay and hold cranky Hannah.  She was only on oxygen for about five minutes; she ripped her nasal cannula out and threw it on the floor.  They decided to keep us overnight because she was still very fussy.  She wouldn’t sleep or eat anything, she just wanted some mommy snuggles while she whined.  Four hours after her procedure I finally got her to sleep. 

Her cathe went really well, everything looked great.  However, the doctor said she has outgrown her shunt and we need to move up her surgery.  The doctor came in and told me they have moved up her surgery and it will be NEXT WEEK, October 18th.  YIKES, I nearly had a heart attack.  I thought I still had a month and a half to prepare, but I should know by now that I shouldn’t ever try and plan anything when it comes to Miss Hannah.  Everything has always been up in the air with her and we have had to look at things one day at a time.

We were discharged the day after her cathe, but almost had to go back to the hospital because Hannah wouldn’t eat anything.  Every time I offered her the bottle she would scream and throw herself around trying to get away from the bottle.  After talking extensively with her nurse practitioner we decided it was the lingering effects of the anesthesia.  Needless to say I am not a fan of Hannah and anesthesia. 

October 17

We drove down to Indy today for Hannah’s pre-op.  Nana and Papa met us in Indy to pick up Jack.  I am so spoiled to have such great in-laws.  Tina is taking a week off work so she can watch Jack for us.  We made the mistake of telling Jack a few days ago that he was going to go play at Nana’s house.  He came in my room the other morning saying “go to Nana’s house?!” over and over again.  I told him, “nope, not today”.  He saw that I was feeding Hannah. Being the clever boy he is put two and two together and said, “we take Hannah with us” and went to go pick her up. (If we can’t go because you are feeding Hannah we’ll just take her with us.)  What a funny boy.  He has come in every morning since then asking if we were going to Nana’s today.

Before leaving Indy today Nana and Papa took Jack to the children’s museum. 

 He loves the “robot” and refers to the children’s museum as “go see robot?”

We were at the hospital for 8 hours today (4 of those hours were spent waiting to talk to her surgeon) getting an echo, chest xray, and labs done in preparation for tomorrow.  This was all outpatient stuff so Hannah doesn’t have a room at the hospital yet.  Thankfully we got into the Ronald McDonald house again, so we will be staying there tonight.   

At the beginning of this post we mentioned that we hadn’t updated this post since the last time we were in the hospital. Well guess what we are back in the hospital. It is almost like we never left. It is pretty sad when the cleaning ladies smile and wave when you pass because they know who we are. We had a half dozen people come in and say hi while we were in the heart center. Hannah is so loved here!  Is it sad to call this our home away from home? They love us here and we love them. They are life savers in more way than one.

Surgery is scheduled for 10 AM tomorrow morning.  We ask that you please add little Hannah to your prayers.  Even though recovery for this surgery easier (because she is older and should tolerate it better), it is still open heart surgery and just as invasive and intricate.  We need as many prayers as we can get.  Thank you for all the support, we feel truly blessed.

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