Going Home - Part 2

Back on January 23rd I posted "Going Home - Part 1" and spoke about the positive outlook we were taking that one day she would be coming home with us. After 114 days/16 weeks/almost 4 months, that time has come. Enduring 3 surgeries, many blood transfusions, medicines, tests, x-rays and scary moments, Natalie was finally ready to come home.

Last Saturday, we arrived to news that she would be going home on Tuesday. We were not surprised because she had been eating well, but we were far from prepared. We decided not to spread the news in case the day changed, which we know happens often. I went to work on Monday, signed all my leave paperwork, met with HR, met with my coworkers to go over projects and rushed out the door so I could get to the hospital and go over any discharge information needed. I got there kind of flustered to news that she was leaving on Thursday. She was not gaining enough weight on the breastmilk alone and they wanted to add back in the formula supplement to give her more calories. They wanted to wait 48 hours to see how it went and then she had her ophthalmologist appointment on Thursday, so they decided to keep her until then. It ended up being a blessing because I got to spend two days with her nurse showing me how to administer all her medicines and when to give them to her. I got to ask all my last minute questions and felt a lot more confident taking her home because of it.

It was a very strange feeling knowing that she was coming home. Part of me was ecstatic and the other part terrified. I was unsure of dealing with the medicine and the 8 different specialists we had to follow up with. Most of all, it was an unreal feeling of "I'm not ready" to take care of a newborn. As much as our situation was unique, it was the same feeling all new parents have. We cleaned the house, set up everything we would need and prepared the best we could. Everyone at the NICU kept asking: "are you ready?" No, no no no no! I don't think anyone can ever be really ready to go to the hospital in the morning and come home with that kind of life-changer, an adorable one, but still a complete lifer-changer.

Saying goodbye to Natalie's nurses and respiratory therapists and everyone who we had contact with over the past four months was extremely hard. They have an amazing community there that they opened to us over this time and it was like the last day of school. There are a handful that have extra special spots in our hearts that helped us through the scary times. Maybe it was because it just happened to be their shift that day or a relationship developed over the many weeks we were there, but they saw our little family at our worst and at our best. I loved how excited everyone was that Natalie was getting ready to come home. If it was their last day working before she was supposed to be discharged, they would make a point to come in and wish us good luck and get one last squeeze in from her. They were so happy and I have to imagine watching these little ones grow strong to go home is probably one of the highlights of their jobs. We are going to miss them very much and we will make sure to stop by and show off our sweet girl, but more important catch up with the many friends we made.

So, she was discharged. It happened very fast and then they kind of just looked at us like "umm..you can go now". It was the weirdest feeling ever. Jimmy and I just exchanged glances, like shouldn't there be more to this after all this time? We wheeled her out in her Britax chariot and said our goodbyes quickly before I started crying at them. She looked so tiny in her stroller even at 7 lb 10 oz and fell asleep almost instantaneously as we walked through the hospital. I kept my cool and we were almost out the door when we ran into the priest who baptized her a few days after she was born. He had not seen her since she was sick in February and he could not get over the healthy, pudgy little infant that was leaving that day. He had a visiting priest with him and explained the situation, then they both blessed her. Then I lost it. I think it was the fact that this was the man who had blessed her at her most vulnerable, when she was first born and then we she got very sick. To see him do it now kind of brought the whole ordeal full circle.

We drove home; Jimmy in the drivers seat and me in the back with my hand by her stomach (it is really hard to tell if she is breathing sometimes!). We had been warned about difficult transitions from the NICU to home, but Natalie has entered seamlessly into our lives. She sticks to her three-hour NICU schedule and lets us know if we are a minute late with her food. She sleeps good and though she prefers to be in our arms, does not cry if we put her in her bed (usually). She showed off for her pediatrician the next day performing all her tricks of babbling at her and holding her head up. We have a ton of doctor's appointments in the next few months, but we feel like life is starting again after months of being on hold while she was in the hospital.

This blog has been a great way for me to keep everyone posted. It started as a tool to keep my family and friends in the loop, but quickly grew as Natalie's story spread, sometimes to people we have never even met. You have been our best cheerleaders and supporters. I will not say we could not have done it without you because I have confidence in our strength together as a family, but your presence did make it a whole heck of a lot easier and we can never thank you for your thoughts and prayers.

I will continue posting once a week to update you all who are not on Facebook of Natalie's progress and of course, post cute pictures of her. I do not think I will ever go back and read this blog. Jimmy started to and after a few entries just sat there crying. We look at our strong little girl and cannot believe she is the same girl as that tiny baby who careened into our life back in January. She seemed so frail then and we get emotional even thinking about it. We are so proud of her and grateful she is such a little fighter.

Maybe, one day, someone will stumble upon this while going through a similar situation. I do not know if it would help them, but at least it might help put words to their feelings and give them hope that the tiniest forms of our species are the strongest of us all.

And here is your daily dose of Natalie Rose:

After her eye exam - what just happened?!

Going home outfit - had to have roses on it 

In her car seat

Ready to go!

Took a nap as soon as we came home

Pediatrician appointment is so exhausting

Milk coma

Tummy Time!

We do not like baths

But this isn't too bad

Love cuddling up to Daddy

 

Happy Due Date

15 weeks ago, May 8^th seemed so far away. Today is Natalie’s due date and she is finally 40 weeks. This means that tomorrow we can start her corrected age of 1 Day Old. What I once hoped would be my "Mother's Day Baby" is already 3 1/2 months old and I cannot imagine her any other way.

Natalie is progressing into a beautiful, healthy baby girl. The past couple of weeks have produced astounding changes as she now stares directly at you when you are talking to her and she looks from person to person while there is a conversation going. She cries for her bottle and has even started whining when you put her back in her crib. I have spent months not feeling guilty for putting her back, but now she whines and gives me a big puppy dog look when I tuck her back in bed. She hates her baths and acts like it is torture. And like any other child on the planet, getting her face wiped clean is a major offense.

She lost almost a whole pound on her diuretic and is now working her way back up. She is 7 lb 3 oz and she looks so much better. People ask how you can tell that is fluid she is retaining and let me tell you there is a big difference between a chubby baby and a bloated one.

Her tongue was bright white and they found out she has thrush on Sunday. They started her on medicine that day and by the next day there was a huge difference. Thrush is a type of yeast infection in her mouth and they said it probably burned while she was eating.

Between her fluid coming down and mouth healing she has been eating like a whole new baby this week.

A lot of the nurses and staff have been taking vacations and have returned this weekend. Their reactions when they see Natalie are amazing. They all think she is adorable, and beautiful and they promise, “they are not just saying it”.  They cannot get over how alert she is and how well she is doing. It must be one of their favorite parts of their jobs to see one of their babies do this well after all these months. They all want to know if she is on the discharge team and when she going home, but we still do not know. My nurse yesterday said probably in the next 10-14 days. Eek!

In our time at the NICU we have met so many families going through similar situations as us. Though a lot of children come through the NICU and stay for a couple of days, there is a core group of us that are there for the long haul. It is impossible to not feel a connection with them as we experience this together. In talking to them it is amazing to see that though we have encountered many of the same challenges, every experience is entirely different. I guess the NICU team was right back in January when they said they could not tell us what to expect.

We are both excited and scared for her homecoming, but I am sure that is normal for everyone including parents who have full-term, “normal” babies. I just cannot wait to not have to say goodbye to her every night and being there when she wakes up throughout the day is going to be an inexplicable joy.

Until next week friends. I apologize for how boring these entries have been, but hopefully, they excite you all as they do myself for their wonderful news.

Here is your dose of Natalie Rose - 

Stop taking pictures of me and give me my bottle. Or else.

Our happy girl

Milk Coma

After bath and holding her pacifier like a pro