NICU Day #112 - DISCHARGED!!! And Meeting the Siblings

Wednesday, August 11, 2010

Definitely a day that will live in infamy in my book.

I know at least a couple of Timmy's nurses were concerned that we weren't going to be in to pick Timmy up until 6pm.  Believe me, I was ready to take him home ASAP, but really felt that James should be with me for the first trip home with Timmy.  As he has had to take so much time off work this year for pregnancy, broken bones, baby birth, etc. he really couldn't take another day off.  Not to mention that by doing so he would leave one of his colleagues (one of our favorites) as the only dentist in the office for the day.

We were also hindered by the fact that, since I had been told that Thursday would be the earliest Timmy would be discharged, my mom had given the other woman she works with in her office the go ahead to take Wednesday off, as she was still not needed in Tucson.  Or so she thought.  So she had to go into work at least for the morning and then was still unable to get off as early as planned on Wednesday.

The day started out fine for me.  Definitely excited that the day had finally arrived that our older children would get to meet their baby brother and we would all be together.  No more nighttime trips to the hospital.  Definitely a little sadness there, as I already miss my nurse friends, but overall a huge sense of relief.  Even more than the day I was given the news that Timmy would be going home with his trach, the feeling of, "It's over" was overwhelming.  Like the war had finally ended after many battles.  Definitely coming home with some war wounds, having gone through a fair number of vicious skirmishes and losing some dear friends along the way.

Our house was nowhere near ready for Timmy to come home.  Still isn't really, truth be told.  When I had Trevlyn, it depressed me for months that our house - a fixer-upper we had only lived in for a year - was riddled with projects in the works and looming with many more not yet begun.  I hated bringing my newborn baby home to that.  So when I was getting ready to give birth to the twins, I made sure that my house was clean and that I didn't have any major projects going on that I would have a hard time staring at and not being able to work on for months.  How naive I was to think my house would be clean long or that nothing in the house would break down on us until I was ready!  Needless to say, there were piles of laundry and dishes to do in no time.  The house was a mess, but the babies were home safe and sound with plenty of love and attention and I finally learned that's all that really matters.  So, while the house wasn't ready for Timmy, I was. 

But I did spend the morning cleaning as much as I could.  I even tried to get the older kids to help as much as possible.  They have been having such a hard time with James and me leaving so much.  They have become more and more desperate for attention as the time has dragged on.  They never used to hit or back talk like they do now.  (Or did up until Wednesday.  Very relieved to say that things are getting better already in that department.)  I really feel that they were all just feeling starved for attention.  Try as I might, I have been very tired for months.  And very busy.  Especially lately since Timmy has been able to breastfeed.  Although I wasn't overly concerned about nipple confusion, I didn't want him to get so used to the bottle that he didn't want me or didn't want to work a little harder so I tried to nurse him at night at least twice and then occasionally during the day on Monday and/or Tuesday when James was home with the kids.

We did end up watching too many movies again on Wednesday as I was trying to clean and trying to conserve what energy I had left from staying in the NICU until after 3am that morning.  As the day wore on, the adrenaline rush that comes with something long-anticipated finally within reach kicked in.  I called my mom around 2pm to see how close she was to Tucson.  I got her voice mail.  Odd, I thought, if she was on the road.  She had told me that she was planning on arriving at my house around 2 or 3 to help me get things set up for Timmy.  Then she and the kids would drive me over to the hospital and drop me off around 4:30 or 5pm and I could finish getting all the discharge papers signed and clothes and whatnot packed up to be ready to walk out the door with Timmy when James arrived at 6pm.  This plan sounded even better when I received the phone call from Leslie, the pharmacist, that morning inquiring where I would like to have Timmy's antibiotic prescription called in.  We determined the easiest thing would be for her to just call it into the hospital pharmacy and I would have plenty of time to pick it up before James arrived.

Well, no.  My mom wasn't able to get off work until after 3pm.  I was nearly beside myself when she called at 3:30 to let me know she was just leaving.  (It's a 2-hour drive from her house to hours.)  But what could I do?  She would still be here early enough for me to meet James at the hospital.  I was just getting VERY anxious by then to have my baby boy in my arms.  He was cleared for discharge and there was a part of my mind thinking, "He knows!  He's probably so sad right now because he could leave if only his parents would come get him.  How mean that we're making him wait. What if he changes his mind and doesn't want to come with us because we took so long and left him there by himself all day?"  The crazy thoughts of the sleep-deprived brain.

The kids and I made pizza for dinner and were about halfway through eating when my mom called again to tell me she was at Alvernon and Broadway.  (10 minutes away, in normal traffic.)  She was arriving during rush hour, so it took a little longer, but that gave me time to make sure I had the camera, book and blanket to return to the NICU, purse, cell phone and the little ice chest I have been using to transport milk to the hospital.  (Yep, the overstocking now coming back to bite me.  Oh well.  It all made it home.)

We loaded the kids in the van and she dropped me off at the hospital at around 5:45.  James had called that he had finished up early and was on his way.  Hooray!  So I picked up Timmy's Cephalexin prescription and had just called James's cell number to find out where he was when he walked through the front doors of the hospital. 

It was a thrill to know we were walking down the long hall to the NICU without our baby for the last time.  We couldn't walk fast enough.  The elevators couldn't move fast enough.  Nothing could happen fast enough.

Kay was Timmy's nurse for the day. 

This was her second time having him and the first time had been when he was in the second pod in the old unit prior to his first surgery.  We had never met her before, but she was great in getting us out the door.  She was still taking care of Axel when we walked in, but she told us we could pick Timmy up and get started.  I have been saving Patient Belongings bags for the past few months, bringing the empty laundry bags back with me because they are nice bags, but I don't need a lot of them at home and hate to waste.  They came in very handy in emptying all of Timmy's drawers.  We loaded all his clothes and blankets in one, stuffed animals from his wonderful primaries in another, trach and other supplies in yet another one.  With those three bags bulging in addition to the compressor for the moisture collar, the suction and monitor machines, my equipment for the breastpump, the little ice chest for the milk from the NICU freezer and the folder of paperwork from discharge, there is no way we would have made it out the door by ourselves.  Kay was so sweet.  She blazed through the paperwork with me, showing me the sheet that had Timmy's upcoming appointments with the pediatric pulmonolist, surgeon and eye doctor on there in addition to his pediatrician and Dr. Parry.  Another sheet listing his medications and time he was due for the next dose.  So many papers, so many appointments!  And we had yet to schedule anything with the home health nurses!

It was a surreal feeling to know we were in room 4206 for the last time as parents of a NICU patient. 

I wanted to search out every friend I had made in the NICU, hug them and thank them and tell them goodbye and schedule a playdate so I could see them outside the NICU.  At the same time, I wanted to get Timmy out as fast as I possibly could.  I was like a whirlwind packing.  I had waited nearly four months for this day and it was finally our turn.  I didn't want to waste time or give anyone else time to come up with yet another excuse to reneg on Timmy's discharge.  The sooner we could get him disconnected from the monitors the better!

We didn't get a chance to roam the NICU looking for people, but did get to say goodbye to Ashley, who was taking care of the other two babies in the room but has taken care of Timmy on several occasions and Virginia, the amazing woman who could place Timmy's IVs when others had had no success.

 

Kay was a huge help and pushed the stroller loaded with stuff to the car for us.  James carried the compressor and a few other things and I got the best part of the deal - Timmy.  My heart was full to bursting.  The relief of FINALLY having my baby in my arms and getting to have him with me all the time now, words can't touch.  It was equal in joy to the sorrow I felt back in April when I realized I was going to have to leave him in the NICU.  As we walked out the doors of the hospital, I just wanted to cry.  It was finally over!  I could hardly believe I had walked through those doors pregnant and experiencing very sharp contractions, hours away from delivering a 29-week preemie and out those doors three days later without a baby in my arms nearly four months ago.  It seemed like an eternity.  And so like the movies with the sudden rush of memories of so many trips made back and forth to the hospital since my water broke five and a half months ago.

I was able to check the tears when we saw Jenny.  She was just coming on shift.  And such a welcome sight.  I didn't get any pictures of her with Timmy the night before and it was so nice to get the chance again to do so.  She has been such a wonderful support throughout this entire ordeal and become such a dear friend.  I will definitely miss nights chatting with her.

We saw Sharme and Christina in the parking garage.  I kind of felt like we were making some conspiratorial escape.  We hadn't run into too many friends inside the NICU and now we were passing them on the way out.  (Passed Marnae as well as we were exiting the elevators.)

It was hot in the parking garage.  I wondered how Timmy felt leaving the air conditioning of the hospital and being outside for the first time.  He just had a onesie on.  He has so many cute preemie clothes that I didn't buy him a special coming home outfit.  (Amazingly enough, this doesn't guilt me any at this time.)  He's just cute in anything.  It was a little trick to get everything into the car but we did it.

I sat in the back with Timmy so we wouldn't have to connect him to the monitor and he did really well for the 10-minute drive.  He was awake and alert the entire time, needing a little suction, but seemingly unbothered by anything else.  He has always been such a mellow baby.  I think maybe it's another one of the tender mercies we have been afforded that he isn't much of a noise maker, trach or not. 

We walked through our front door just after 7pm and barely got a few steps in before we were accosted by, "Baby! Baby!"  Landon and Callie were thrilled to see Timmy.  They just wanted to touch him and hold him.  Trevy was very patient, but also very excited to finally get to meet "Baby Timmy." 

 

 

Yes, we have instructed on not touching baby's face.

 

 Worries were unfounded.  Landon LOVES being a big brother!

 How could he not?

Our neighbor, Abby, had been outside and came over to meet him as well.  She and her husband have been such a great support to us as well and it's so sweet to get to share our "triumph", if you will, with them.

After she headed out, we gave each of the kids a chance to "hold" Timmy.  I have feared Landon not wanting anything to do with Timmy, the other mama's boy, but boy was I wrong!  Timmy will not want for being held for a long time, if ever.

Callie copies a lot of what we say and will now tell us, "Baby Timmy so cute!"

She's such a sweet little mommy!

Kisses from Callie.

Kisses from Landon.  Such sweetness!

Kisses from Trevy.

 

 My boys!

 All four together at last!

 I LOVE this photo!  Marker marks and all!

 

 And I love this little boy!

 

 

 Mommy and her "mama's boys."

 Random shot of beautiful Trevy.

 Repeating the holding post-bath.

 

 More kisses.

 Callie giving Landon instruction.

 Love this picture.  Such a sweet photo, even if Timmy is crying his head off!

Nothing so sweet as seeing your children so happy to be together.  So right.  So complete.  So disorganized, as we had to fumble around finding suction catheters and diapers, but everything was perfect!  Daniel and Bridgette came over to jointly celebrate Timmy's homecoming and Daniel's birthday two days before.  Another one of our amazing neighbors, Melissa, also came over and held Timmy for a while.  She and Dorian had come over earlier in the afternoon to put a Welcome Home Timmy sign on our front window.  It's still there.  It makes me so happy every time I come home from somewhere and read it.  He IS home!  He is finally home!

For the record:

Birth date: Wednesday, 21 April 2010
Discharge date: Wednesday, 11 August 2010

Total: 16 weeks / 112 days in the NICU

6 trips to the OR
2 PICC lines
1 broviac line
4 blood transfusions
At least 10 extubations, reintubations
At least 4 attempts to start feeds before being able to get even as high as 10mls
At least 7 beloved primaries
Kisses that number the sands of the sea

Birth weight and length: 2 lbs. 6 oz. and 12. 75 inches.
Final weight and length at discharge: 6 lbs. 6 oz. and 18.5 inches.