Day 365

Day Of Life: 365

Weight: 19.3 lb

Height: 27 in

Corrected Age: 8 months 10 days

Happy Birthday Natalie Rose!

I cannot believe it has been one whole year since Natalie came bursting into our life. 12 months later and 8 months out of the NICU and she is doing fantastic.  She goes to physical therapy once a week and we love her therapist, Elsa. She is rolling really well and she is starting to test out the crawl position so she will be on the move in no time! She has had some trouble doing exercises on the side of her body where her scar is, but recently they tested out using kinesio tape on her and it has made a great difference. Her doctors have been very happy with her and the only specialist we still see is her pulmonologist (which we now only have to go every 6 months!) and, of course, the NICU Follow-up Program which we will be doing for the next few years. The only real problem we have encountered was she is having problems eating. We put the food in her mouth and she just stares at us like she does not know what to do with it. This is not surprising considering how hard it was to drink out of a bottle for so long – so back to the feeding specialist we go. However, if this is our only complaint, we are doing pretty well. Thankfully she loves her bottle and is even able to hold it herself now!

Natalie has recently learned how to clap her hands and shows this new trick off to anyone who looks at her for longer than 2 seconds. She has started waving recently and we cannot help but cheer for her every single time. She smiles constantly and loves to laugh her deep, throaty baby giggle. She loves her Mom and Dad, but, let’s be honest, her 60 lb dog (Willow), is what gets her most excited. She is always happier if there is music playing even if it is low in the background. She loves bath time with Daddy and dancing in the kitchen with Mommy (usually to the 90s pop station on Pandora). She just started daycare a few weeks ago and is enjoying every minute. When I walk her into her room in the mornings and she sees the lead teacher she starts beaming and tries to jump out of my arms.

As for us? We are doing good. We are adjusting to this new life of daycare that has not been too difficult just trying to figure out how to get everything done in 24 hours is challenging like for every other parent. I have found that as we have gained more distance from the NICU that I have a harder time dealing with certain memories. It is not the fact that she was born early or in the hospital for months because I am very grateful for how everything turned out and for the people I met along the way. I do not look back on what happened with anger or stress in general. However, I do find myself dwelling on the weekend she got sick and had her surgery at the most mundane times. I’ll be in the shower or driving home from work and it will hit me and I cannot help but think about it and (usually) end up crying.  In its own way those memories haunt me a little. From getting the phone call to showing up to find her grey and motionless with a dozen of people working on her. The talk with the doctor about how she might not make it to the xrays every 4-6 hours to see if anything changed. I look at my healthy, happy, beautiful baby and it just bothers me so much. As we get closer to the year anniversary it has been bothering me more, but I know in time it will fade. I tell my friends that I am experiencing some weird sort of PTSD for NICU parents and laugh because I feel like I am being dramatic, but I do think there is some trauma to get over.

However, I am also very appreciative for the start of Natalie’s life. Not that I wish it on anyone, but I can take the good from it. I cannot imagine not knowing her for the 4 months before she had been born. She was so spunky and noisy and fought so hard. Around 40 weeks when we were going home she had mellowed out into her infant laziness of sleeping and eating all day, but in the past few months as her personality emerges more and more she is that same sassy little girl. It is amazing that at just 24 weeks these infants have personalities – that is not something I would ever expect. Those months in the NICU also introduced me to some of the most amazing people I have ever met. All the staff there have a very difficult job and most people probably think they spend their days playing with babies which is the furthest from the truth. They selflessly give their heart over to every baby knowing that there is always a chance that heart will get broken and I could never thank them enough for that kind of devotion. We made friends with fellow families that were there for months with us and that is a special bond that I treasure as well.

Today, the only thing I wanted to make sure I did was visit the NICU on her birthday. The visit went great and we got to see lots of familiar faces I have missed. They could not believe that it has already been a year and Natalie gave every single person a big, juicy grin. They kept thanking us for coming and I thought that was odd - where else would I go on this special day? It felt great to be back and I know we will continue to visit throughout the years.

Tonight, as my family sung "Happy Birthday" to Natalie, I had to find against major tears. I did not think I would get emotional, but it has been a crazy year and the enormity of it all hit me as I held her close and made sure she did not get too near the flame. So, on her 1^st birthday I would just like to say how proud we are of her. I am thankful for the doctors and nurses’ decision-making and care and the excellence of her surgeon, but it was Natalie who had to fight and not give up when she was only a few pounds and 28 weeks gestation. I am in awe of her. In her little life she has already influenced so many people: family, friends and strangers. She taught us all that miracles do exist and reminds us everyday when she shoots us one of her giant smiles.

Thank you to everyone that has followed her story from the beginning and prayed and rooted for her. I was thinking this would be the last blog entry, but who knows, maybe I will visit every January 20^th and update you on our special little girl.

And to anyone who might stumble upon this who is dealing with a similar situation – I hope this helps you cope and understand what is happening around you. We learn quickly that there is not always a happy ending to these stories and we were lucky enough to get one. I hope you do too.

A dose of Natalie Rose throughout the year:

What a difference a year makes...

Our visit to the NICU

Merry Christmas from Natalie 

Christmas Morning

Happy Thanksgiving!

Our little Snow White on Halloween

Pumpkin picking with our favorite little pumpkin

Natalie's Baptism on August 8th

Natalie's first vacation - Long Beach Island

Photoshoot from when she first came home

Being discharged from the NICU on day 114

My first (and quick) look at Natalie right after she was born before they whisked her away

6 Months of Natalie Rose

On July 20th, it was 6 months since our little munchkin came tumbling into our world. As of this week, I am very happy to say, Natalie is officially off all medication and any medical aid for the first time in her little life. She hasn't been weighed in a few weeks, but I would guesstimate that she is over 13 pounds and a good 22-23 inches long. She is growing nonstop and has new tricks to showoff to us every single day.

Her doctor's appointments have lessened big time. She has been released from her GI and home care. Her pulmonologist appointments have gone from weekly to monthly to "see you in 3 months". She is going the her physical therapist monthly and always performing above her corrected age (which right now is about 2.5 months old).

Natalie smiles all day long and is starting the beginnings of a laugh. She stays awake for most of the day but then sleeps like a darling through the night. 11 pm - 7 am? We'll happily take it!

She is having her full baptism in a couple of weeks (she was baptized in the hospital but we're doing the full mass and party for her now) and then right after that I am going back to work. I cannot believe my time home with her is almost over and am super sad about it, which I know is normal for any returning mother. We've made arrangements so she will not be going into daycare until at least October and I am sure everything will work out.

As for Jimmy and myself? We could not be happier. She is the light in our world and we are so grateful for her every day. Every baby is a miracle, but we got an extra dose of that after the rocky first four months of her life. During her hospital stay everyone would always comment on how well we held up and I really do not think the magnitude of what happened really hit us until recently. I get very upset when I think back to the hard times or see pictures of her from when she was sick. I think now that everything has settled down I have had the time to process it all and, phew, I hope it is the hardest time we ever go through, but at the same time I just feel so completely happy and grateful for how lucky we were that a healthy, happy baby came home with us.

So, all in all, everything is going well. Between taking some unpaid leave from work and hospital bills, it will be awhile until we are back on our feet financially, but it is a small price to pay. We have the baby's first big followup appointment in September that the hospital does every 4 months for the first 2 years of her life and then we will get a real good look at where she stands on everything. Obviously, she will not catch up to her birthday age status for a couple of years, but she is doing pretty darn good.

And the only reason most of you come here - your dose of Natalie Rose:

Medicine Free and Happy Girl

all those smiles!

When she was first born, Jimmy's engagement ring fit around her whole foot 

This was her - 'I'm 6 months old today' pictures!

First time in a bathing suit - still too little to swim though!

Still no play better than sleeping on her Mama

Our silly girl

Her first day home from the NICU until today - my what a difference 2.5 months makes!

Home Sweet Home

Tomorrow will be 4 weeks since Natalie has come home. I cannot believe how fast time is flying. I am already done with 1 month of my 3 months off. Her doctor does not want her in daycare when I go back, but we will cross that bridge when we get there.

We are doing great. Natalie slid seamlessly into our home and never really showed signs of struggling with the transition. It has been us getting use to this new life we now have: who does which feeding, how do so many bottles get dirty so fast, why do wipes seem to evaporate at an astonishing rate, and hmm maybe we should pay those hospital bills. Happily these are the normal adjustments of any new parents and other than administering her medicine and all her doctors appointments, things have been pretty "normal".

All her appointments have gone well so far. We have seen her pediatrician (multiple times), her GI, her Pulmonologist, physical therapist and a visiting nurse comes once a week. Everyone is very happy with how well she is doing and a lot of the specialists we will probably lose after awhile. The Pulmonologist will probably stay with us because she does still do a lot of heavy breathing with her immature lungs and we have to wait and see when she gets sick for the first time (hopefully not for awhile) how her lungs hold up. He told us that preemies have a 50% chance of asthma, and with my family history of a lot of asthmatics, that he won't say she will definitely have it, but there is a very large chance. If that is the case, we will probably be with him throughout her childhood, but I really liked him so I am OK with that.

Natalie is now 9 lbs 6 oz. She is almost 5 months old, but 4 weeks corrected age. She is enamored with light fixtures and ceiling fans. There is no greater indignity than getting her face wiped or her diaper changed. The greatest offense she takes is to the wind when it blows ... I mean, really. We are still waiting for those adorable cooing sounds - but it is still mainly farm animal noises that come out of her. She curls up on anyone's chest and wraps her arms against them like a little tree frog and still has not noticed our 60 lb black dog that runs around the house after us. Needless to say, she is perfect.

So that is the deal. Now I am busy planning her full baptism (Baptism Part II) and am very grateful for the nice weather that allows us to go visit people outside so I don't get cabin fever.

My good friend, who also took pictures of Natalie in the hospital, came by last week to work her magic yet again. So, your dose of Natalie Rose, is extra special this time:

Mmm - milk coma

Love hanging with my Daddy

This is probably the most common face I see from her

Her princess chair. Full proof that my friends will be spoiling her rotten

This is really what she was like almost the entire shoot, thank goodness for pacifiers

The Nursery - beautiful wall mural done by Tracey Feller

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

One Hundred Days

Yesterday (Wednesday), was 100 days since Natalie was born and since we have been on this roller coaster ride in the NICU.

She is 19 inches long and weighs in at 7 lbs 8 oz (some of that is her retaining fluids, so take a few ounces off for a realistic weight). Natalie looks at you when you talk to her and turns her gazes on the different people in the room and checks them out. Losing her pacifier is pretty much the worst thing in the world, but nothing is better than curling up on a warm lap, be it family member or nurse. I would be lying if I said she makes sweet, baby cooing sounds. She grunts and can best be described as sounding like anything from a little piggy to an angry goat.

She is doing terrific. She is still struggling with eating and it is taking longer than we thought it would, but she is moving along. They keep raising her food amount and they try to bottle-feed her every other feed. If she seems tired, they just give it to her through her gavage. Sometimes she eats great. Sometimes she chokes on her food, turns blue and the nurse has to rush in to help her breath. That happened last night while I was feeding her and it scared the crap out of me (and my Dad and Jimmy). Any thoughts I had about wanting her home ASAP were lost and I am very happy with her taking her time. The nurses are not too concerned about these episodes. Their response? “She’s being a preemie”. I pointed out that tomorrow she will be 39 weeks gestation, so she really is not a preemie anymore. They laughed and said “once a preemie, always a preemie ... for the first 18 months anyways”.

I find myself absolutely in awe of her. She is so strong and alert. I have that I have blocked out a lot of the scary events of the past few months, but as she is getting stronger I cannot help but think of how far she has come in these 100 days. Driving home the other night, I started thinking about the weekend in February when she got very sick. I remembered how the night after her surgery we stayed at the hotel down the street from the hospital because we felt sleeping 20 minutes away was too far. I have this poignant memory that, unfortunately, I think will always be with me. After that terrible day of events, I decided I would try to relax and take a nice, long bath. Jimmy came in to find me hysterically crying in the bathtub. I was in almost a panic because I realized while soaking I washed the smell of her off my hands. I was inconsolable because I was so afraid she would not make it through the night and I would never smell her again. I drove home the other night crying at that memory. Crying partially because of the pain of it, but also tears of relief that our little girl made it.

So we trudge along on this journey. Hopefully, she will be home in the next couple of weeks, but I am not concerned with time as long as when she does come home she is ready. Her baby furniture arrived yesterday and we have started setting up her room. I cannot wait to welcome her into our life completely. The nurses tell me she is a morning baby and I am excited to see it for myself!

As for this blog? Today's post marks the 40th entry and we have had over 25,000 page views. Natalie is a lucky girl to have you all cheering for her and I am glad you have stuck with her story so far. 

Here is your dose of Natalie Rose, her new room's window does not get a lot of sun, so it is harder to get good photos: