Saturday, December 31, 2011

2011

As the final hours of 2011 come to a close, I am reflecting on the year and how I will remember it.  2011 was filled with some of the most difficult moments of our lives as well as some of the most joyous.  Veronica's birth and the days and weeks that followed were traumatic to say the least.  The experience is still something I think about...every...single...day.  But I also think about how remarkably well Veronica has done and how things could have turned out so very differently.  We are so grateful for Veronica's health and progress and feel blessed beyond words.

So although 2011 was one of the most difficult years for us, it really turned out to be one of the best.  Instead of focusing on the more challenging and traumatic moments of the year, I would like to share some of my favorite Veronica moments of 2011: 

- The day Veronica was moved to an open crib.  The transition from the isolette to the open crib felt so significant - she no longer seemed to be the smallest, most vulnerable baby in the NICU.   

- Holding Veronica for the first time.  She was nearly 5-weeks-old and just over 2 lbs.  I don't even think I can put into words how amazing this moment was.  I will never forget it.    

- When Josephine met Veronica for the first time and we all got to be together as a family.  This was otherwise a very difficult day for us because we thought Veronica would be coming home that day but we learned early that she wouldn't be.  One of our favorite nurses allowed us to break NICU rules and convinced the doctors to allow us all to visit together in the breastfeeding room.  It was a brief visit but it was fabulous!  

- August 15, 2011 - the day Veronica came home!  For me, this was truly one of the best days of my life.  It is right up there with our wedding day and the births of our other five children. 

I can't wait to see what 2012 has in store for Veronica and the rest of our family! 

Thank you for following Veronica's Journey.  Happy New Year!!


After about 30 tries, this was the best we could get.  It's not easy trying to get 6 kids to smile at the same time!

At the Garden of Lights in Wheaton, Maryland.

Veronica enjoyed the Christmas lights but not enough to stay awake!

Sunday, December 25, 2011

Merry Christmas!

"And the angel said unto them, be not afraid; for behold, I bring you good tidings of great joy which shall be to all the people. For unto you is born this day in the city of David a Savior, who is Christ the Lord.  And this is the sign unto you: Ye shall find a babe wrapped in swaddling clothes, and lying in a manger.  And suddenly there was with the angel a multitude of the heavenly host praising God, and saying, Glory to God in the highest, and on earth peace, good will toward men."    Luke 2: 10-14

From our home to yours, wishing you all the joys of Christmas!  

Friday, December 23, 2011

Sisters

See any similarities?

Liesl and Veronica 2011

Liesl and Josephine 2009


Tuesday, December 13, 2011

Progress!

The past few months of tummy time are starting to pay off:


Go,Veronica, go!!

Monday, December 12, 2011

119 Days

Veronica has been home with us for 119 days which is the same number of days that she spent in the NICU.  So after today, we can officially say that she has spent the majority of her life at home, and not in a hospital.   However strange this may sound, I figured out when this day would fall a month or two ago.  But even then, I didn't realize how significant this day would feel.  I feel like we are starting a new chapter in Veronica's life.  And a small part of me feels as though it's now time to let go of the entire NICU experience - although I'm not sure I am ready to do that.  I wonder if I will ever be.  And I wonder when, or even if, the day will come when I don't at some point think about Veronica's birth or NICU experience.  If that day never comes, is that necessarily a bad thing? 

For now, we will enjoy this day and even celebrate a bit - for the past 119 days have been wonderful.  Watching Veronica grow and reach new milestones has been amazing.  I don't want to brag too much, but isn't she adorable?




Thursday, December 8, 2011

We're Back!

It has been too long since I last posted, but I guess that's a good thing.  There really isn't too much to report as far has Veronica goes.  She continues to amaze us everyday just by her being.  This past Sunday she turned 4-months-old, corrected that is.  I like to focus more on her adjusted age since that's the most accurate way to describe her, at least for now anyway.  So at 4-months, she has great head control, plays with her hands, holds a rattle, smiles like crazy and even giggles at times.  We're still waiting for her to roll over but we have a few more months before that would be anything to be concerned about.  Veronica loves to watch her siblings play and doesn't seem to mind all the chaos and noise.  She continues to be fed only breast milk and we'll continue that until she is 6-months adjusted, unless we see some obvious signs sooner that she is ready for something more.  As far as I'm concerned, there is no rush to starting solids.  At times I feel like I already have enough on my plate trying to feed the other five. 

As far as growth goes, Veronica is currently 24 1/2 inches long and weighs 14 lbs, 6 oz.  The big news is that she has actually made it onto the growth chart for her weight.  The doctors measure her growth in terms of her actual age (7 1/2 months) and she is currently in the 5th percentile for weight and almost on the chart for her height.  I am amazed by her growth and so glad that this has not been an area that we have had to worry about.  She has actually doubled her weight from the day she was discharged which I think is remarkable in four months. 

Today Veronica had a follow up at the developmental Clinic at the Children's National Medical Center (CNMC) in DC.  She was evaluated by a neonatal nurse practitioner who had no concerns regarding her progress which of course was a relief to hear.  She will return to CNMC at 9 and 18 months corrected age as part of a research study.  On Veronica's 2nd day of life, we agreed to allow her to participate a study called Neurodevelopmental Outcomes of Very Low Birth Weights (VLBW) Infants Managed with Early Nasal Continuous Positive Airway Pressure (ENCPAP).  Although I really didn't understand what I was agreeing to at the time, I am glad to have enrolled her in the study. I am hopeful that whatever is learned from this study will at some point be beneficial for other premature babies.

Veronica continues to be visited once a month by an occupational therapist from our county's early intervention program.  Over the course of two visits, she trained me on the techniques of infant massage.  I try to do it every day but admit that it doesn't always happen.  When we do get the chance, Veronica really seems to enjoy it (who wouldn't?) and I love that it forces me to give her some undivided attention.  See the photo below.  Can you tell she is enjoying it?

Friday, November 25, 2011

Preemie Community

At some point while Veronica was still in the NICU, I began to notice comments on this blog from a few other preemie parents.  It meant so much to know that there were people out there who knew what we were going through and who were cheering us on.  Soon after, I came to realize the multitude of blogs out there written by preemie parents.  It is an entire community which I am now glad to be a part of.  I have learned much from some of these women and I enjoy following the stories of their children.  A recent post by Jack's mother shares some of their amazing stories and I feel honored that Veronica was included.  Please take a look!

Thursday, November 24, 2011

Thanksgiving

What a year it has been.  Last Thanksgiving, we found out we were expecting our 6th child.  Little did we know that Veronica would be born less than five months later.  The weeks and months that followed were some of the most challenging of our lives.  We never imagined that come Thanksgiving, we would feel so incredibly grateful for all that happened this past year. 

During Veronica's NICU journey, we were supported in so many ways - by friends, family and even acquaintances.  Prayers, meals, babysitting, quarters for parking, gift cards, gas money, etc.  We were humbled by the outpouring of support and we will always be thankful. 

The doctors and nurses that cared for Veronica will always have a special place in our hearts.  I know I have said this before, but they were simply amazing and we are eternally grateful for all that they did for Veronica.  To put your trust in people who are caring for your child 24 hours a day and essentially keeping her alive is not an easy thing.  But it quickly became clear to us that Veronica was receiving the highest level of care.  Knowing that made our NICU experience, and our lives, so much easier. 

Veronica's NICU journey could have been so much more challenging and we feel so incredibly blessed that she has fared as well as she has. Every day I look at her in wonder, amazed at how far she has come and that 7 months after her birth, there are virtually no signs of her extrememe prematurity.

Thanks to all who continue to visit Veronica's Journey and for keeping her in your prayers.  We are grateful for all of you!

Happy Thanksgiving!

Happy Baby Veronica!

Happy Thanksgiving from the Aments!

Saturday, November 19, 2011

7 Months

        Happy 7 Months, Veronica! 
                                            (1 day late!)


Besides turning 7-months-old, the big news this week is that Veronica had her final ROP exam.  The retinopathy of prematurity is completely resolved and according to the opthamologist, her eyes look "great"! Amazing!!  





Monday, November 14, 2011

What if...

Besides Veronica's size (looking more like a 3-month old as opposed to an almost 7-month old), the only physical reminder of her extreme prematurity is a small scar on her abdomen.  We're not entirely sure what the scar is from but my guess is that it's from something that was taped to her skin - when you look at those early photos you can see how delicate, practically translucent, her skin was.  (If any of the micro preemie moms out there have an idea about the origin of the scar, please share if you will.) Anyway, every time I change Veronica's diaper, I see the scar and I am immediately reminded of her NICU stay and how far she has come.  I am still amazed and incredibly grateful that she is doing as well as she is.  But my mind has a tendency to wander at times and I begin to ask myself  'what if' questions.  Being connected with multiple micro preemie/preemie groups, I am constantly reading about prematurity issues.  I have read about all of the possible complications associated with prematurity and for most of those complication, if not all, the smallest and youngest babies are at greatest risk.  24 weekers such as Veronica definitely fall into that category.  I want so much for her to continue on the path she is on - medication free, growing, developing.....but what if, just what if that doesn't happen?  Or what if the worst is yet to come?  I would like to think that the fact that she has done so well up to this point means that she won't have any long term issues.  But nobody can say that for sure.  I try not to dwell on these thoughts because I know we are incredibly blessed....but to be honest, the thoughts and worries are never far from my mind. 

Saturday, November 12, 2011

Bronchiolitis

We did our best with hand washing and staying close to home but the inevitable happened - Veronica got sick.  It started with a mild cough yesterday which evolved into a stronger, more consistent cough this morning.  Eventually, her breathing sounded like that of a purring kitten.  So off to the pediatrician we went where she was diagnosed with bronchiolitis, which is basically an inflammation of the airways in her lungs.  Bronchiolitis is often caused by RSV but when they tested Veronica she came back negative which was a huge relief.  (Even though she had her Synagis shot this week, I am still terrified of RSV.) The doctor recommended a nebulizer treatment which took about 10 minutes - she fussed a little bit but overall she was such a trooper.  I guess she figured 10 minutes of a nebulizer treatment is nothing compared to almost four months on CPAP.          


Bronchiolitis tends to last from 7 - 10 days so unfortunately, the worst might still be ahead of us.  We were given a nebulizer to take home and a prescription for albuterol.  Hopefully, the two will provide some ongoing relief over the next few days.  Poor Veronica - after everything she has been through, I just hate seeing her sick.  Please say some prayers that she gets better soon!

Monday, November 7, 2011

Jack

For some time now I have been following a blog about Jack, a now 2 1/2-year-old who was born at only 23 weeks, virtually on the cusp of viability.  When my water broke at 23 weeks the doctors told us the grim statistics and asked if we wanted our baby resuscitated if she were born that early.  I remember the tremendous relief I felt when we made it to 24 weeks just a few days later.  The six days I spent on bed rest were a blessing in so many ways.  Not only did Veronica get more time in the womb, but it also gave me and Andrew a chance to at least try to prepare ourselves for her early arrival.  Jack's parents didn't have that opportunity.  Their story is inspiring to say the least.  Jack's father has written a book about their experience which he is now trying to get published.  The excerpts are beautifully written and I hope you will take a look.  They call him Miracle Jack, and that is truly what he is. 

Saturday, November 5, 2011

3 Months

Veronica is 3-months-old!  Well, not exactly....her adjusted age is 3 months.  Prior to her birth, I can't even remember if I knew there was such a term as a child's adjusted or corrected age.  But Veronica's adjusted age is the one we focus on and I am happy to report that she seems to be developing on track, at least for now.  She smiles, coos, lifts her head off the ground, recognizes us....all the things a 3-month-old should be doing.  Her growth, however, is tracked by her chronological age, which doesn't really make sense to me.  But given that fact, it will probably be a long while before she is even on the growth charts for her chronological age.  But if that ends up being the greatest of our worries, then I would say we are in pretty good shape.  

One thing we do worry about these days is RSV.  Any parent of a micro-preemie is all too familiar with the risks associated with RSV.  Since micro-preemies miss out on the valuable 3rd trimester antibodies passed through the placement, they are at greater risk of contracting RSV and becoming seriously ill as a result.  It is the leading cause of re-hospitalization for preemies and can even lead to death.  So it's certainly something we think about.  Some of the micro-preemie blogs I follow reference RSV isolation  or quarantine.  But given the fact that we have five other children, in addition to both Andrew and I working full time, it is just unrealistic to think we can keep Veronica home all of the time.  Instead, we try to avoid crowded areas (shopping malls, church) and we frequently wash our hands.  We have hand sanitizer in just about every room in our house.  Did I mention that we wash our hands, a lot?  Keeping Veronica at home all the time is not even a guarantee that she won't get sick.  Just this week Josephine was ill with some sort of virus - a fever and a horrible cough. We did our best to keep the two separated but trying to keep an active toddler isolated is next to impossible.  It was a little nerve wracking at times but we made it.  But how many more colds and viruses will we go through over the next few months?  Next week Veronica will get the first dose of five synagis shots to help protect her from RSV.  Synagis is an antibody used specifically to prevent RSV and, at $2700 a dose, is reserved for those babies at highest risk for contracting the virus.   Unfortunately, since its not a vaccine, there is no guarantee that she won't get the virus.  I'm thinking this is going to be a long winter.....please say some prayers for us!


Veronica's Halloween Outfit

A Pink Butterfly

Tummy Time

Thursday, October 27, 2011

Milkin' Mamas

If you followed this blog in June, you might recall the post about me pumping and the large quantity of milk I was collecting and storing.  I didn't note it at the time, but that photo was of our 2nd refrigerator in our garage.  Our kitchen freezer was also stocked with milk.  A few weeks later we bought a deep freezer, which turns out to have been too small.   


I was beginning to feel completely overwhelmed with breastmilk.  While Veronica was still in the NICU, I was told we would go through the milk quickly when Veronica came home, the theory being she would drink the older milk, and I would pump fresh milk to be frozen and used at a later time.  So that was our initial plan but I wasn't expecting Veronica to begin nursing exclusively as soon as she did.   If she was able to nurse, then I would no longer need to pump (to this day I still thank God for this....it has made life sooooooo much easier).  But then the question became, what were we going to do with all of the milk, which at one point was probably well over 1000 ounces.  Someone at some point suggested that I donate.  Initially I didn't even consider this option.  I feared that there might come a time when Veronica would need all of that milk.  What if something happened to me, or what if my milk dried up?   Evenutally I came to the conclusion that donating would be the best option.  I wish I could say that this decision was out of the goodness of my heart.  But the reality is that it was the sheer volume of milk that pushed me to look into donating.  But whatever the reason, I am so thankful to have found Milkin' Mamas.

Milkin' Mamas works with Prolacta Bioscience, the creator of the only Human Milk Fortifier (HMF) made from human milk.  HMF is a fortifier added to the breastmilk of mothers who have extremely premature babies in NICUs.  HMF provides additional protein and nutrients that micro preemies need, which believe it or not, are not found in breastmilk.   For a long time, HMF was made only from cow's milk. 

I contacted Milkin' Mamas about a month ago to begin the donation process which included collecting a DNA sample and giving a blood sample, all from the comfort of my own home.  Milkin Mamas contacted my OB/GYN and Veronica's pediatrician to ensure that there weren't any reasons I shouldn't donate my milk.  They also sent me a thermometer to check the temperature of my freezers.  The entire process was quite fascinating and surprising simple.  Once I was cleared to go, Milkin' Mamas sent me two coolers to pack up my milk and ship it to Prolacta in California.  (You can see Liesl leaning on the box containing one of the coolers.  And there is cute Baby Veronica to her left.)


A few days later, I packed up over 200 ounces of breastmilk.  Unfortunately, much of my milk I couldn't donate because of medications I had taken at the time I had pumped it.  So basically our freezers are still packed with bottles.  Oh well....

After the milk was packed in the coolers, FedEx came to my home, picked them up, and less than 24 hours later, the milk was delivered to Prolacta  in California.  From there it will undergo additional testing, pasteurization, etc.  Eventually it will be made into Human Milk Fortifier, delivered to NICUs around the country, and given to extremely premature infants.  Amazing!!

For the past six months, we have benefited from the generosity and prayers of so many people.  And we feel so very fortunate and incredibly blessed that Veronica is continuing to do well.  It may sound strange, but I feel good knowing that from this entire traumatic premature birth and NICU experience, I am finally able to give something back by donating milk to help other babies.   It's the very least I can do....

Monday, October 17, 2011

Six Months

Six months ago this evening, I was sitting in one of the ante partum rooms on the labor and delivery floor of the George Washington University Hospital.  I had been on bed rest for six days but at that point I was feeling great...no contractions and confident that we would at least get to 28 weeks, or even 32.  It was Palm Sunday and when I received Communion from a Eucharistic Minister earlier in the day, I remember telling her that I would see her the following Sunday (Easter).  Of course I would see her because I knew I would still be there....still on bed rest.  When I went to sleep that night, I had no idea that Veronica would be born only a few hours later. 

Six months have passed and so much has happened.  There were so many low points along the way but also so many moments to celebrate.  Not a day goes by without us remembering Veronica's beginning and her journey through the NICU.  Would I change the circumstance of Veronica's birth if I could, yes, of course.  But would I change the outcome?  Never.  Everyday we thank God for bringing  Veronica into this world.  And we continue to thank Him for how well she is doing.  We feel truly blessed. 

Below is a video of our NICU journey.  Even now, two months after discharge, I can't help but get emotional when I watch it.  Although we have started to feel that those first four months of Veronica's life are a distant memory, the entire experience will always be a part of us.  

For those of you who continue to come back to this blog, thank you.  Thank you for your prayers and support.  And thank you for allowing us to share Veronica's journey with you. 


Monday, October 10, 2011

October

October was the month I had been dreading since Veronica was discharged from the NICU because I knew it was the month I would be returning to work.  Shortly after Veronica's birth, Andrew and I made the decision that I would return to work while she was in the NICU so that I could be home with her once she was discharged.  April 18th was the day she was born and I returned to work eleven days later.  At the time, I wondered if that was the right decision.  But as difficult as those months were, working full time, traveling back and forth to the NICU, caring for five other children, I know it was the right decision.  The past eight weeks have been amazing and I am so thankful to have been home with Veronica and the rest of my family.  Normally, I would complain about returning to work.  But the entire NICU experience has given me such a different perspective.  How can I possibly complain about working when Veronica is home now, and healthy.  We feel so incredibly blessed that she continues to do as well as she is doing.  Here is the latest update:

- Veronica weighed in last week at 11 lbs, 1 oz. Wow!  Her length was 21 3/4 inches which is short for her adjusted age but a long way from the 12 inches she was at birth.
- Veronica had her first appointment with the occupational therapist assigned to her through our county's early intervention program.  The OT was impressed at how well she is doing but was a little concerned about her head control.  She recommended that Veronica have as much tummy time as possible - something that sounds easy to do but not necessarily so with five other kids around.  But we've been doing out best and have definitely seen an improvement.  The OT also recommended infant massage which we will start in a few weeks. Premature babies often develop sensory issues and the thought, or hope, is that the massage techniques could help prevent some of those issues from ever surfacing.
- Veronica is no longer taking Zantac, a medication she was taking for possible reflux.  We slowly weaned her off and haven't seen any problems so she is now medication free! She still takes a multi vitamin daily, primarily to prevent anemia.

Veronica is doing great overall and she has a wonderful disposition.  I've heard several times that premature babies tend to be fussier than term babies but we haven't seen that at all.  Just look how happy she is:


In other family news, our son Theodore celebrated his 8th birthday this past Friday.  Happy Birthday, Theodore!  The following day, he broke his clavicle during a soccer game.  Poor Theodore!

       

Tuesday, September 27, 2011

Photos

If you have been following this blog, you of course noticed the change in the photo above.  I always wondered if I should remove Veronica's "birth" photo but I was never completely convinced that I should.  My older children, who absolutely adore Veronica and did so since day one, sometimes comment that she looks like an alien in that photo.  But that photo pretty much sums up why this blog was created to begin with.  And it will always be a reminder of how far Veronica has come.  Not that we don't think about that every day anyway.  But after having a photo session which produced the photo above, along with several other beautiful ones, I knew it was time....time to move away from where she had been and to show how amazingly well she is doing right now.  We never did newborn photos before but this time I felt in some way that we deserved it.  We are fortunate to have a friend from St. Patrick's who is a photographer and someone who has followed Veronica's journey along the way.   She was more than willing to take the photos; she was super patient and did a fabulous job.  You can check out her blog here.   Thank you Michele!



Thursday, September 22, 2011

"Great"

Veronica had her follow up ROP appointment this morning and the doctor described her eyes as great.  The ROP (retinopathy of prematurity) has regressed and laser surgery has been avoided.  Hooray!!  This really is great news.  We will return for another follow up in November but that should be the last of her ROP exams.  What a relief this is in so many ways. This does not necessarily mean that her long term vision won't be impacted by her extreme prematurity.  But I think wearing a pair of eyeglasses is a small price to pay for being born four months early.

I promise not to bore you with too many videos but I can't resist with this one.


Tuesday, September 20, 2011

5 Months

Happy 5 months Veronica! (Two days late, but what can I say, I have six kids and just couldn't get around to posting.) All continues to be well with Veronica.  She is doing everything she is supposed to be doing to grow and thrive. I finally got a picture of her smiling.  Isn't she amazing?  I admit I'm not the best photographer, but I think this turned out alright considering I was trying to take her picture and make her smile at the same time - not an easy task with any child. 
 

Today Sebastian, my 4-year-old, asked me if he could watch some of the video from the time when he was a baby.  So then it dawned on me, I have very little video clips of Veronica.  And the ones I do have are from the NICU.  Those of you with multiple children will understand.  The more kids you have, the fewer photos and video images you have of each subsequent child after your firstborn.  So I am now determined to take more videos of Veronica no matter how uneventful what she is doing may seem to be.  Here is the first one from today.  Beware, if you are not a close relative, or even if you are, you will probably find this video quite boring.  But at least she is darn cute.

 

Saturday, September 17, 2011

September 17, 2006

Today I dedicate this blog to my mother, Diane Williams, who passed away on September 17, 2006 after a 10 month battle with ovarian cancer.  She was only 61-years-old.  At the time of her death, we only had three children; now we have six.  It breaks my heart that she never got to see or hold Sebastian, Josephine or Veronica.  The births of Sebastian and Josephine were so bittersweet for me because she was not here to celebrate their arrivals into this world.  With Veronica, there were so, so many times during her NICU stay that I wished my mother were still here.  And oh how I wished she could have been here to celebrate Veronica's homecoming.  I know she would have loved it.

My mom with Liesl and Theodore,  November 2003.

In memory of my mother, I would like to share some of the symptoms of ovarian cancer;  having knowledge of these signs and symptoms could someday help save a life. 

- Vaginal bleeding or unusual discharge
- Pain in the pelvic or abdominal area (the area below your stomach and between your hip bones).
- Back pain.
- Bloating, which is when the area below your stomach swells or feels full.
- Feeling full quickly while eating.
- A change in your bathroom habits, such as having to pass urine very badly or very often, constipation, or diarrhea.  (http://www.cdc.gov/cancer/ovarian/basic_info/symptoms.htm)

 These symptoms may be caused by something other than cancer, but the only way to know is to see a doctor. The earlier ovarian cancer is found and treated, the more likely treatment will be effective.

Thursday, September 15, 2011

Neonatal Nurses Day

September 15 is National Neonatal Nurses Day. I never even knew this day existed but I am in total agreement that NICU nurses are deserving of their own special day.  They truly are amazing people. A quote from an article I read today pretty much sums it up:

“Many times, you are fighting against the odds. You play the leading role in the effort to save newborn lives. Though your story may not be broadcast to millions across the world, it is still being told. It is told through the smile of a mother you’ve just comforted or the warmth of a baby you’ve nursed back to health. We hear your story, and we hope many others will hear your story too. Thank you for all the work you do for newborn babies every day."  (http://www.healthynewbornnetwork.org/blog/neonatal-nurses-high-value-given-low-priority?page=3)

Veronica was discharged from the NICU exactly one month ago and I have thought about her nurses every day since then.  I know I have said this before, but we will never forget all they did for Veronica (and for us) and we will always be grateful.

So on this day, I would like to publicly thank the wonderful GW NICU nurses who cared for Veronica during her 119 days.  Thanks to Beverly, Leslie, Whitney, Reggie, Lavona, Keyona, Didi, Mia, Teresa, Katie, Alana, Eileen, Maria, Chara, Vivian, Sarah, Vlodka, Sophia,  Mary Jane, Renee, Carmelita, Misha, Leslie (the other one!), Julie, Nance, Lisa, Anabell, Anjanie, Kristen, Ramone, Jennifer and the charge nurses, Cynthia and Ruth.  Thank you!!







Monday, September 12, 2011

Smiles, 9 lbs and Pre-School

I feel like so much has happened since I last posted.  I've been telling myself daily to update the blog but I've  just been too busy enjoying my life.  I can't use a lack of time for not updating because the reality is that I  have more time on my hands than I have had in a long time.  I never thought I would say that with six children but it's amazing how you perspective on time changes after spending 119 days going back and forth to the NICU.  Anyway, one of the biggest things that happened is that Veronica smiled!  Her smile was huge, from ear to ear, and all 7 of us were there when it happened, although not everyone got to actually see it.  It was wonderful and brought me to tears (shocker).  When she smiled, it was as if she said "Mom, dad, don't worry about those first four months. I am really happy now."  I think I was finally able to release that last little bit of guilt I had been feeling for her premature birth.

The next big news is that Veronica went for a weight check today and she weighed in at a whopping 9 lbs, 6 oz. Wow!! She is now officially 'huge' and weighs more than all of my other kids did at birth.  I know for a 4 1/2 month old, 9 lbs is quite small.  But when you compare her to other 1-month-olds, I think she is in pretty good shape.  It's funny how I still get so excited about her gaining weight.  Today I was nervous just before I put her on the scale and I think I might have even heard a drum roll in my head.  I was thrilled when the I realized she was over 9 lbs and also felt a sense of accomplishment, which might sound strange.  She has been home for 4 weeks and has gained over 2 lbs since her discharge so we are obviously doing something right. I know we have parented five other newborns, but I wondered if parenting a micro preemie would be much different.  Fortunately for us, it hasn't been too different, mostly because Veronica has done so well.  And we are now at the point where she is essentially exclusively breastfeeding. We give her one bottle feeding a day since we still have hundreds of bottles left in the freezer.  Anyway, this has made life so much easier.  I never realized how much more work bottle feeding can be, particularly in the middle of the night.

Finally, I feel the need to give Sebastian some attention since the others had a post dedicated to the first day of school.  Sebastian, our 4-year-old, started preschool today at St. Mary's. (A wonderful community by the way; they provided prayers and support to us during Veronica's NICU stay.)  Sebastian did wonderfully and didn't even look back. I was so proud of him. 

Here are some pictures from the week.

Chubby!!!

Veronica's serious face.  I promise she smiles now though. I'll try to get a picture up soon.

Big boy Sebastian on his first day of preschool.

Sebastian and Josephine.

Sebastian and Josephine (Both pics were so cute, I thought.  I couldn't decide which to post!)

Sebastian and his little sisters. No, he did not have to go to the bathroom. I was trying to get them to squat down next to Veronica but this was the best they could do.

Tuesday, September 6, 2011

ROP Update

Today Veronica had another eye exam at Children's National Medical Center in DC. The good news is that there really isn't any bad news to report, at least I don't think there is. The ROP (retinopathy of prematurity) in the right eye, although still stage 3, appears to have regressed a bit. But the ROP in the left eye is now stage 3, which means that it has progressed. But the doctor was not as concerned about the left eye. She said that technically it had progressed but it didn't look that bad. Although she stressed that the ROP in both eyes is very "active". So it's a little confusing if you ask me. And to be completely honest, I don't understand much of it. What I do know is that we are no worse off than we were two weeks ago which we have to be grateful for. And at least today's visit was not interrupted by an earthquake which really counts for a lot. So we will follow up in two weeks and will probably continue to do so for the next few months until the ROP is resolved or until surgery is needed. Please continue to pray that we won't get to that point. Although it is a fairly common surgery, I understand that one of the risks is the loss of some peripheral vision which if course is something we would like to avoid. It's interesting in that if you had told me on the day she was born that our biggest concern in four months would be whether or not she was going to lose some of her peripheral vision, I would have been relieved. There just seemed to be so many other things to worry about, like breathing and living. But she has come so far and done so well, we just want so much for that to continue. Please pray that the ROP resolves itself, and sooner rather than later. Those eye exams are not at all easy to watch. Thank you for the prayers and support!

Monday, September 5, 2011

Million Dollar Baby

In case anyone was wondering, the total cost for Veronica's stay in the NICU was over a million dollars. ( $1, 077, 585 to be exact).   I had no idea it would cost that much.  Thankfully, from what I can tell, our insurance is covering all of it.  I can't say I ever really followed the national health care debate but I can't imagine what this NICU experience would have been like had we not had health insurance.  And I suddenly have a deeper appreciation for having a job which provides decent insurance.

In other news, we had a visit this week from our county's early intervention folks.  They stayed for a few hours, observing and asking questions.  The good news is that Veronica was assessed to be functioning at the newborn to 1 month age level, which of course is right there with her adjusted age.  Because of Veronica's extremely low birth weight (ELBW) and the high probability of a developmental delay of some sort, she automatically qualifies for early intervention services.  So for now, the plan is for a physical or occupational therapist to come to our home once a month to check in and assess how Veronica is developing.  At any point additional services can be added. 

Something that  surprised me during the visit was that I was brought to tears when I was asked to share Veronica's birth story.  I was not expecting this after all of these months and being so happy to have her home.  It was just a reminder of how traumatic that day was.  I often wonder how I will feel on Veronica's birthday every year.  For our other children, their birthdays are filled with joy and we frequently look at baby pictures or videos of them when they were just born.  Will it be the same for Veronica?  I am already planning what we will do on August 15, (the anniversary of her coming home); but how will we celebrate April 18th, one of the most traumatic days of our lives?   It makes me sad that I will always remember her birthday in that way.  But on the other hand, I suppose we will just have to look at that day and remember how far she has come, which is something we do everyday anyway.   

Our milllion dollar baby.

Josephine holidng Veronica, take 1.

Josephine holding Veronica, take 2.

Tuesday, August 30, 2011

Back to School


My intention was for this blog to be about Veronica but it is nearly impossible to blog about her without somehow talking about her five siblings as well.

Today was the first day of school for Liesl, Theodore and Linus.  It was great to be back and so special to have Veronica along for the ride.  The St. Patrick's community has been overwhelmingly generous to us with prayers and support so it was nice to be able to show her off a bit.



Liesl  (4th), Theodore (2nd) and Linus (K)

Boys in the back, girls in front.


Linus, so excited for kindergarten.

Daddy helps Josephine with her shoe. (For those who don't know, Andrew is a teacher at St. Patricks.)

And then there were three.  Sebastian will start next year, Josephine in three years and Veronica in five years.

Monday, August 29, 2011

Two Weeks

Two weeks have passed since Veronica came home but it still feels so new and exciting.  It seems like every day is a day to celebrate.  We are loving our time with her and are so thankful to have her home.  She is conitnuing to do well and we were happy to learn today that she is now a hefty 8 lbs. Whohoo!! I must admit I was a little worried about her weight gain because she hasn't been eating nearly as much as she did when she was in the NICU. Somehow those fabulous NICU nurses were able to get her to drink 3 or 4 oz;  for us, she seems only interested in 2 or 3 oz.  She is breastfeeding as well which is great, but of course we have no way of knowing how much she is getting during her feeds.  But today's doctor's visit put me at ease and I was thrilled to know that she is doing all that she needs to do in the growth department.  We'll return for another weight check in two weeks. 

Here are some more pictures: