The Big Reveal

As many of you already know, Maura is home with us now! She came home on Thursday. Yesterday, we had a doctors appointment at our pediatrician, and we are just trying to settle in here at home. The newborn is easy, the toddler is difficult! While we are still having some nursing challenges, we are confident that it will all work out just fine, simply because this is what we wish!



I started this on Wednesday night to share with all of you, to try and explain the whole story. Thank you for keeping us in your thoughts and prayers as we continue to recover from the longest 20 days of our lives!

2:50 a.m. - It's been a long night already..day too! I've had to keep big secrets from all of you..because we just wanted to be sure. A neighbor of ours in the NICU had been told numerous times her little guy was headed home, only to be filled with disappointment. We didn't want to share in our joys until we were ABSOLUTELY SURE she was headed home.

Let's start with what happened.



9:30 a.m. - Wednesday - Lucky 13th day - The doctors made their rounds. Maura is now seizure free for day 3 and doing wonderfully. She's nursing during the day very well, and having good awake times...Then they say it..The time has come, if we are OK with it, to take her home. We've got lots to do before that. Car Seat Study, Back to Sleep Video, Shaken Baby Video, and the biggest milestone yet - removal of the G-tube...which means that Maura will have to take ALL feeds by mouth and meds as well from here on out, and we have to learn how to administer those meds and get them filled at the pharmacy. She also needs a pediatrician appointment for Friday just to see how we did overnight. Then performance anxiety steps in - they deliver a baby scale to the bedside....the same scale they've wanted to leave out from the beginning, and here it is, and we've got to prove to it that we can do this.

A scale! A stupid piece of electrical equipment! And We've got to prove to IT that we can go home!

All Day Long - Nursing is a disaster. How can my baby possibly even think about coming home if she doesn't want to nurse?! What am I going to do?! She's a ZOMBIE. A zombie unlike any day here so far that we've been nursing. What's the deal?! Our nurse hovers often, trying to reposition Maura, trying to wake her up, trying to make it happen, which in itself is really awkward. I mean really, I'm all about hanging my boobs out after 15 days in the NICU, but this is ridiculous.

It gets to a point in the afternoon where I completely melt. I tell H, our nurse, that I hate the scale, and that I know she nurses, because I know my baby, and we can do this. Joe and I head to lunch. We drop off her scripts at the in hospital CVS, eat lunch, and head back to pick up her meds and carseat from the car. Insurance doesn't have her on it yet, so I have to pay out of pocket for her meds. Fine, whatever, anything to get one step closer to home. It wasn't as bad as I thought it would be anyway. Insurance may have covered another 10 dollars out of it.

After Lunch - 2:30 p.m. - Joe heads home to pick up Patrick and bring me back what I need for the night. I'm staying so as to show that Maura can indeed take all of her feeds by mouth. I've got to give him a list of things and I'm cursing myself for not packing another hospital bag like I had planned...Perhaps I never thought they'd really let her come home, but here we were! I give him my list and off he goes. His plan is to bring Patrick back to visit Maura and hand over my stuff for the long night.

I decide to call our family doctor to schedule her Friday appointment only to find out that they won't take Maura. They are concerned about her meds and will not accept her as a patient. They feel it is in her best interest to see a pediatrician at this time. Wonderful! One more snag in our day. But this girl has resources. The hospital doctors from Virtua won't cut it. We thoroughly interviewed them with full consideration of potentially switching Patrick as well. They won't follow an alternate vax schedule, so we knew it was a dealbreaker. Dr. Sears to the rescue! I knew his site listed doctors that were alternate vax friendly. One just so happens to be in Lawrenceville, so I give them a call...no problem! They'll take her! Amazing! How excited am I? We've got an appointment!

Late Afternoon - After trying to get Maura to latch, getting more and more frustrated by my otherwise normal but sleepy baby, a lactation consultant shows up like a beacon to me! She's got tricks to show me. She watches Maura latch and explains why she latches like she does. Suck, Suck, Suck, Swallow, Breathe. It's about her style - or so I thought, but in reality, it's because Maura is a pokey little preemie. She shares a supplemental feeder with me that we can use if we need to. It can be used either by hand or by breast...and all of a sudden things are looking better.

Joe arrives with all my stuff and Patrick. I still can't figure out for the life of me how he got all that stuff upstairs with a toddler, but by god he did it!! Patrick wants to play with the toys here, which are many. We want to take him to dinner and share Maura with him....but he doesn't want much to do with it all. Time flies too fast and before I know it, my boys are on their way and Maura and I are left for the night.

It was by far the longest night of my life. I got a total of about 4 hours of sleep. I vividly remember the first night that Patrick stayed with us, and I remember that being a long night. The first night Maura slept in the NICU at Virtua was long. Last night was much much longer! We did get her to nurse OK! She's setting her own style, taking a particular amount of milk at each nursing, and that's just her, and I'm OK with that...She'll get it in her own time. We can supplement if we really need to, I've got quite a stash of milk!

5:30 - Sneaks up fast. Nursed twice over night. Four hours of sleep. Very tired business...but rounds happen at around 9, and if I shower, I can feel human again!!

By 8 oclock, Dr. S was in examining Maura. He didn't order the scale, he knows its not productive, and he says it doesn't matter what it said anyway because she gained weight! Take THAT scale! He sees no reason why Maura can't come home.

I still couldn't believe it. Really? They were going to let me take this baby home?



Rounds came and went uneventfully..and all we had to do was wait for Joe and Patrick! The scale disappeared shortly after Dr. S came to see us. No more of that business!

We just needed to wait they day out for Joe and Patrick, and then we were out of there! It was very weird to pack up and move out. It was the place we called home for the last two weeks. When we walked out, we gave hugs to the nurses, thanked the doctors, and stopped at the front desk so that they could cut our bracelets off. They took them. I almost asked for it back, but really, I didn't want it. I have plenty of things to remember the NICU by, I don't need my NICU bracelet. I just needed Maura.



When we got in the car and started to drive away, I cried. It hit me that we didn't have to drive back to CHOP on Friday, and while we are thankful for everything they did for us and how they made us feel while we were there, 14 days in their NICU was plenty for us.

Today, it's Friday...Today, I wonder about the little baby that took our spot in bed 13 in NICU West. I only hope that they don't spend as much time there as we did. They are in my thoughts!