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!

"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.

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.

 

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.

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!!

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.

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!

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.