Prayers for John Paul

For some time now, we have been following the story of John Paul, the 5th child born to a family we know from our parish.  John Paul was a full term baby but he was admitted to the NICU shortly after his birth in early December.  A few days later, he was transferred to Children's National Medical Center in DC where he was eventually diagnosed with Spinal Muscular Atrophy, a rare and very serious disease.  John Paul has endured two surgeries, one for the placement of a g-tube (to include a nissen), and the other, for the placement of a tracheostomy.  Needless to say, the past few months have been challenging for John Paul's family. We were thrilled to learn that John Paul was discharged home on Valentine's Day but saddened to find out the following day that he was readmitted as a result of irritation in his trach which caused some difficulties with his breathing.  His parents are hopeful that he will be discharged within the next few days.

With all of John Paul's challenges, his parent's strength and faith has been amazing.  The family has created a CaringBridge website to keep people informed of John Paul's progress.  If you would like to be inspired, please take a look.

10 Years and 10 Months

Veronica is 10-months-old today!  Hard to believe she is into the double digits.  Today also happens to be the 10th birthday of our oldest child, Liesl.  She adores Veronica and has been helpful to me and Andrew in so many ways.  Liesl requested her own blog for her birthday but she settled on having a guest post on this one: 


"Hi everyone. Today, on February 18, 2012, I turned 10-years-old at 8:45 p.m., and Veronica turned 10-months-old at 1:45 a.m. She has come so far. I always thought what a coincidence it was that Veronica and I were both born on the 18^th. We were also born on Mondays; I was born on President’s Day, and she was born on the Monday of Holy Week.

Veronica is amazing and I love her sweet round face. She is conscience of her hands and the world around her. Veronica reaches for my hands and the toys I offer her. She smiles at me and can almost roll over; her hand is in the way.

I can’t wait to play with Veronica when she is older; though there is a 9 year and 2 months difference. JoJo can join us. There are many things in this world I can introduce her to. Like I said, I just can’t wait.

So now Veronica is 10 months into her life. She will accomplish great things, and (I hope) will be a lot like JoJo and me. I hope she knows she can be whatever she wants to be (well, she can, but the chances of becoming president are like one in a trillion). We have many memories to make, but I already have a lot."


Here are some photos from the birthday celebration:

Liesl, the birthday girl.

Linus, Josephine and Theodore

Andrew and Veronica (10-months-old!)

Liesl and Sebastian

Six Months Ago....

Six months ago today, Veronica came home from the NICU.  I will never forget that day, or how I felt.  It’s something I still think about daily.  I never took the time to post about that amazing day so I thought I would do so now. 

Shortly after waking up on August 15, we called the NICU to ensure that all was well and Veronica would indeed be discharged.  We were told four other times that she would be able to come home and then she didn’t for various reasons.  I would like to say that on that day it was different, and that we knew she was really coming home, but we didn’t.   But when we called and spoke with Veronica’s nurse and learned that her night had been uneventful, we knew that it would be the day.  We couldn’t wait to get to the NICU and take our baby home.

Our wonderful friend Maria, the same one who watched our children the day my water broke, came to our home again to watch them until my father and his fiancé arrived a few hours later.  Maria helped them decorate the house for Veronica’s homecoming.

Ironically, Veronica’s nurse that day was Beverly.  Beverly was one of the first nurses who cared for Veronica and was often her nurse during those first few, difficult weeks.  She was Veronica’s nurse the first time I laid my eyes on her in the NICU.  I remember standing by the isolette, scared and unable to stop the tears.  Beverly didn’t tell me that everything was going to be ok, because at that point nobody really knew how she would do.  But she handed me a box of tissues, and without her even saying a word, I could feel her compassion.   So it seemed only fitting that Beverly was Veronica’s nurse on her last day in the NICU.  She was the first nurse we saw when we started our NICU journey, and the last one we saw as it came to a close. 

When we arrived at the NICU that day, we anxiously awaited for the moment when we could take Veronica home.  It took a little longer than we had expected, as we had to wait until the doctors were finished with rounds before they could complete the discharge paperwork.   When we finally got to the point when Beverly could review the discharge paperwork with us, I remember asking myself if this was really happening.  Were we really going to be able to take Veronica home?  It almost didn't feel real.  Veronica had one final exam with Dr. Mohamed, the attending neonatologist which put us one step closet to discharge.  

Dr. Mohamed "examining" Veronica.

When Beverly unplugged Veronica from the monitors, I almost cried.  She had been unplugged before for baths and two days earlier for our special family time, but this time was for good.   That moment felt significant in so many ways.  She was no longer a NICU baby. 

Andrew left to go get the car and pull it up to the hospital entrance.  I began saying my good-byes to some of the nurses.  That of course, was emotional too.  These were the people that cared for our daughter for 119 days.  They were her parents when we couldn’t be there.  What a difference they made in our lives and it was difficult to put our gratitude into words. 

We finally made our way to the exit door of the NICU, and as we opened it, I felt this tremendous sense of freedom.  It was as though I had been the one who hadn't  left that room for 119 days.  What a relief it was to now be on the other side of the door.  Just standing outside was Cynthia, the charge nurse, Rebecca, one of the residents and one of the receptionists.  I gave each of them a hug and I think I began crying.  I was overwhelmed with emotion. 

Just down the hall, I saw Dr. Macri, the doctor who delivered Veronica.  I had no idea he was even on duty that day and being confined to the NICU, it was rare to even see the attending OB/GYN’s.   And then I saw Jenny, my nurse the night Veronica was born.  She was the first one who arrived to my room when I knew something was wrong and she was with me during the birth.  We had seen her a few times during the previous four months and she had always inquired about Veronica’s progress.  It meant so much to see the two of them, to thank them and to show them how well Veronica had done.    

Dr. Macri, Veronica, Beverly

Jenny, Veronica, Beverly

Beverly escorted me and Veronica out of the hospital where we met Andrew, who had the car.  We said our goodbyes and thank yous to Beverly and then put Veronica in the car.  And just like that, that was it. I knew at that point there was no turning back.  After 119 days, we were on our own now and it felt wonderful.

On the way home.

One of my favorite parts of that day was when we had almost made our way home.  As we turned onto our street, I could see our other five children in the yard.  They were all wearing their "Veronica" shirts, ones they had made several weeks earlier in support of their sister.  They noticed our car and their excitement was evident. They were jumping and yelling.  The pride I felt at that moment is indescribable.  And finally having us all home together was priceless.

Our oldest three, looking in to see Veronica.

                            

 

 

Catching Up, New Crib and First Food

Veronica's occupational therapist made her monthly visit last week and while impressed with her progress, she noted that Veronica is "delayed", not just for her actual age which we would expect, but for her adjusted age as well.  I think I already knew this given the fact that she still isn't really rolling over, but I don't think anyone likes to hear that their child is delayed in any way.  For a moment, I felt disappointed but then  reminded myself at just how far she has come.  If on her first day of life, someone would have told me that Veronica's biggest concern 9 months later would be a delay in her motor skills, I would have been thrilled.  It really does seem to be a small price to pay for all that she went through.  So for now, and the foreseeable future, we will work on helping Veronica "catch up" with her peers.  We'll be increasing the frequency of the OT visits from once a month to probably twice a month.  The OT seems to think that she has the potential to catch up by the time she is 2-years-old, or even sooner.  I guess only time will tell....

In other news, we finally moved Veronica out of her bassinet (and our room) into her own crib.  I was hoping this would get her sleeping through the night but, oh well....maybe soon.  She does look awfully cute though, doesn't she?

We also started Veronica on solids yesterday.  For anyone interested, feel free to take a look:

I'll admit I was a little nervous about this since micro-preemies can be prone to feeding issues and oral aversions. She took several bites and seemed content but then started to cry after a few minutes.  Today, she did the same thing but hopefully this won't be a pattern.  We're fortunate, though, that she is still doing great in the weight department which I think gives us a little leeway with solids.

This week Veronica will go in for her fourth synagis shot (out of five) which means we are getting closer to the end of RSV season.  Hooray! 

 

9 Months

It's hard to believe but Veronica is 9-months-old.  She is doing wonderfully and continues to amaze us everyday.  Take a look at some of her new skills:

At her 9-month doctor's visit, Veronica weighed in at 16 lbs, 2 oz and was 25 1/4 inches long.  She is on the growth charts for her actual age which is remarkable, considering she really is only supposed to be 5 1/2 months old.  On top of that, premature babies often have challenges in the area of growth.  We are so thankful that this is not an area we have to worry about, at least not for now.  The doctor was impressed with her progress and really had no concerns.  She suggested that it might be time to unswaddle her and move her out of the bassinet and into her own crib, which is something we already knew....maybe one of these days we'll actually do it.

Happy 9 months, Veronica!


   

5 Months Corrected

 This past week, Veronica turned 5-months-old in terms of her corrected age and believe it or not, she is still sleeping in a bassinet, in our room.  All of our other children were sleeping in their own crib by the time they were 3 or 4-months old.  But Veronica is different and I am not quite ready to move her out.  Maybe it's because she spent 17 weeks in the NICU and I'm still trying to make up for all that time she wasn't with us.  But one of my New Year's resolutions is to move her into her own crib....at some point.   It will happen....someday, it will.  Once she can sit up on her own it won't even be safe for her to be in the bassinet, so surely by that point we will have moved her.  She still looks so darn cute, sleeping all swaddled.  As much as I want her to grow, develop and meet her milestones, part of me wants her to stay an infant.  I love this age and they just grow up too quickly. 

Other happenings in Veronica's world:
  - she still hasn't mastered rolling over.  After rolling from her stomach to back two times on New Years day, we have yet to see her do it again.
  - she currently weighs close to 16 lbs!
  - she had her third synagis shot this past week which means we are about half way through RSV season.  Hooray!!  Spring couldn't come soon enough.
  - she continues to be fed exclusively by breastmilk but we will look to start solids within the next few weeks. 

Here are some recent photos:

Smiling at Theodore.

She loves her hands!

How cute is she?

Veronica in her Christmas dress which she wore for about 10 minutes.





Looking Back - Veronica's Baptism

Yesterday was my son's First Reconciliation (congratulations Theodore!).  We don't usually take Veronica to church for fear of germs and RSV, but we made an exception for this special occasion - and we tried to sit  away from others, with our sanitizer in hand.  While at church, we ran in to Father Rogers, the priest who baptized Veronica.  Father Rogers left our parish in June so he hadn't seen Veronica since he baptized her in April, on her second day of life.  He marveled at how much she has changed and he seem genuinely moved by her progress.  It was a special moment for us and brought back memories of her baptism. 

We chose to have Veronica baptized on her second day of life because at that point, we didn't know what the future might hold.  It wasn't as though we were expecting her not to survive; we just didn't know.   The baptism was an emotional experience to say the least and obviously quite different from the baptisms of our other children.  Father Rogers wore sterile gloves and a gown and used sterile water.  Veronica didn't wear the same baptismal gown that her siblings wore, the one my mother-in-law made from my wedding gown.  There were no family members with us to celebrate and no party afterwards.  While I cried just as I did for the baptisms of my other children, the tears I cried for Veronica's were tears from completely different emotions.  Part of me mourns the loss of that experience for Veronica and for ourselves, but I don't regret the decision we made.  I know there will be plenty of other wonderful moments and occasions in her life that we will get to celebrate. 


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