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.

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:

Tiny preemie survives long journey to kindergarten

Tiny preemie survives long journey to kindergarten

The Good News and the Bad News

The good news is that we survived an earthquake today that measured 5.8 on the Richter Scale. I was at Children's National Medical Center in DC with my three girls when it hit. What an experience that was! For a few seconds there, I was sure the building was coming down.

The bad news is that we learned that Veronica's ROP (retinopathy of prematurity) has progressed to stage 3 in her right eye. It is not to the point that treatment is necessary but if it gets any worse, surgery will be required to prevent vision loss. Needless to say, this was disappointing news to hear. And although she presents as a "normal" term baby right now, this was just another reminder of her extreme prematurity and the fact that there will be additional hurdles to overcome in her future. This news could have been worse, but I just feel like she has already been through enough. And we were still feeling so overjoyed to have her home that hearing this news was like it was raining on our parade. So we will return for another eye exam in two weeks to see if there have been any changes and we will continue to go for exams until the ROP resolves on it's own or through surgical intervention. And on a side note, the eye exam in and of itself is traumatic to watch. I was never present for her exams in the NICU but had been warned that the exam is difficult to watch. Today I learned why. I hate to think that she has many more of those in her future.

Please say some prayers that the ROP will not progress and that surgery will not be needed. Thank you!!

Beyond the NICU

Veronica has been home with us for a week and all is well.  She is behaving like a typical newborn and I sometimes find myself forgetting that she is 4 months old.  But the NICU experience is never far from our minds.  I wonder when the day will come, if ever, that we won't think about all she went through in those 119 days.  When I look at her, I am still amazed at how far she has come and still so grateful for all the care she received from the staff in the GW NICU.  I really can't say that enough.....what a difference they made in our lives.

Some have asked if Veronica was discharged with any special instructions.  We are fortunate that the only medication she was discharged on was Zantac for reflux, a condition which is extremely common for preemies.  She started taking the Zantac a few days before she was discharged and we did notice a decrease in her "events" during her feeds; so it does appear to be working.  She is also taking an over the counter multi vitamin to prevent anemia.  But she has no monitors and no supplemental oxygen which I am amazed about.

  

Tomorrow she has a follow up appointment for her eyes at Children's National Medical Center in DC.  We are hoping to hear that her ROP (retinopathy of prematurity) is continuing to regress.  I imagine whatever the news is, she will still have a few more eye exams over the next year or so.  

Here are a few pictures from Veronica's first week at home:  

Sebastian and Veronica

Janet and Veronica

Grandpa and Veronica

First bath at home.

Liesl and Veronica.

At her first outing to the playground.

All six at the playground.



August 15, 2011

August 15, 2011 was a day we will never forget and one that I hope to celebrate in the years to come. The days leading up to it were filled with anxiety and even frustration, but all of those feelings were forgotten the day we brought our daughter home.

Veronica has been home for two days and all is well.  It feels as though everything is the way it should be now, all of us home together.  But we can't help but still think of the NICU - especially all of the wonderful, amazing people who cared for Veronica on her journey.  Saying goodbye and thank you to them was difficult and emotional to say the least.  When I think about it now, I still get tears in my eyes. I know I have said this before, but we really cannot begin to express how grateful we are for all that the NICU staff did for Veronica, and for us, over those 119 long days. 

I'm not sure how often I will update this blog from here on out.  But several of the nurses have asked that we keep in touch with pictures and updates on how Veronica is doing. So that will be my inspiration for continuing the blog - even if only one of them visits occasionally, it will be worth it.  It is the very least we can do. 

Here are some pictures from that wonderful day - August 15, 2011: 

Last temperature check.  She had her temp checked  8 times a day for her entire NICU stay - so it was checked approximately 950 times.



Last exam by the attending neonatologist, Dr. Mohamed. Dr. Mohamed described Veronica as an exceptional baby since the beginning of her NICU stay.



Flying!

Dressed in her going home outfit. No more wires!  

Getting snug in her car seat.

Proud parents.

Some of our favorite NICU nurses.  And there were so many more.

Saying goodbye to Dr. Macri, the doctor who delivered Veronica in the middle of the night on April 18.

Jenny - my nurse the day I delivered. She followed our journey along the way. 

Loving the car ride from DC to Rockville.

The kids decorated the house with the help of our friend , Maria.

You wouldn't know it from this picture, but the kids were thrilled to have Veronica home. I will never forget turning onto our street to see them jumping for joy.

NICU to Home

Veronica on one of her last days in the NICU.

Veronica coming home.

NICU Journey by the Numbers

Number of days in the NICU: 119
Number of blood transfusions: 17
Number of attempted spinal taps: 3
Number of head ultrasounds: 3
Number of eye exams: 4
Number of days on the ventilator: 12
Number of NICU meltdowns: 6
Number of trips to and from the NICU: 300 plus
Number of parking tickets: 7
Number of parking tickets contested: 3
Number of $ per day to remain in NICU: 1,025
Number of phenomenal nurses: 30 plus
Number of times we were told that V was coming home and didn't: 3
Number of pounds at birth: 1 lb, 4 oz
Number of pounds at discharge: 7 lbs, 3 oz

Home

"Every worthwhile accomplishment, big or little, has its stages of drudgery and triumph; a beginning, a struggle, and a victory" ~Ghandi

Veronica came home today!! Words cannot cannot express how happy we are to finally have her home with us. Thank you for all of the prayers and support.

More soon.....

4th Time

Three times we have been given a discharge date and three times it didn't happen. Hopefully the 4th time will be the charm. I am almost afraid to say this, but we are expecting Veronica to be discharged tomorrow. We were actually given the option of taking her home today or tomorrow and believe it or not, we chose tomorrow. We just figured it was the safer option. She has been "event" free for over 30 hours which is a good thing. We are told to expect some events when she comes home; now it's just a matter of us being comfortable with dealing with them. Over time, the events should decrease in frequency and eventually disappear altogether.

So tomorrow could be it......or not.

Family Photo Shoot

Josephine meets Baby V!

Sisters

Baby V

Josephine gives Baby V her 'nuk'.

Josephine tries to give Veronica her 'nuk' while Linus holds her.

Theodore

Cutie pie

Together at Last

I wish I could say that this photo was taken from the comfort of our own home.  But unfortunately, Veronica was not discharged today as we had hoped.  We found out early this morning that she had an "event" overnight in which her heart rate dropped (bradychardia) and she required stimulation before her heart rate stabilized.  The concerning part was that the brady occurred while she was sleeping which is not usual for Veronica.  Later in the morning, when I was giving her a bottle, she had another brady and became completely limp and unresponsive for several seconds.  These two events were enough for the doctors to say not today, and probably not anytime soon.  We were assured that this is still within the normal range for a 24 weeker but needless to say it was extremely disappointing.  We woke up this morning thinking this was the day she would finally come home.  To find out otherwise was nearly devastating.  I had my typical mini meltdown in the NICU.   Later, however, I found some strength when I spoke with the charge nurse who agreed to allow Josephine, who has never seen Veronica in person, to look at her through the observation window in the term nursery.  I immediately called Andrew at home and he loaded the kids in the car and made the trip into DC.  What I wasn't expecting was what you see in the above photo.  The charge nurse spoke with the attending neonatologist and he agreed to allow us to have some family time.  So we were snuck in through the back door of the NICU and were allowed to be together for about 5 minutes in the breastfeeding room.  So for the first time in 117 days, all 8 of us were together....and Josephine finally got to meet Baby V in person.  It was emotional and wonderful and certainly made a difficult day a little less difficult.  We're still hoping we're all be together again soon....but only when Veronica is ready.  Please keep the prayers coming.  Thank you!

Tomorrow

I know I have said this before, but Veronica's discharge is tentatively scheduled for tomorrow, as in the day after today or in less than 24 hours. I don't want to get too excited but it's hard not to. Veronica may be home with us tomorrow.....August 13, 2011!! We can't wait!!

GW NICU

If you read my post from yesterday, I am sure you picked up on my frustration at the fact that Veronica is still in the NICU. It is true that we are tired of not having our daughter home with us and are anxiously awaiting her discharge. But it is also true that we are incredibly grateful for the care she has received while she has been at GW. I cannot imagine a better group of doctors and nurses. They have been nothing short of amazing. The attending neonatologists are brilliant as far as I am concerned. Had Veronica been in another NICU, I firmly believe she would not have done as well as she has. And the nurses have been phenomenal, always patient, kind and compassionate. We have gotten to know several of them quite well over the past four months and we'll miss seeing them everyday.

As we approach the end of our NICU journey, I wonder how we can really thank the NICU staff for all they have done. Saying 'thank you' to people who have helped keep your child alive just doesn't seem sufficient. And as much as I would like to forget this entire ordeal, I never want to forget all of the wonderful people who have cared for Veronica over these past months. We will forever be grateful.

7 lbs

Veronica hit the big 7 lb mark earlier today.  Weight gain isn't something we focus too much on these days, but it is nice to know that she doesn't seem to have any problems in this area (she probably gets that from me :).  Some other good news we learned today is that Veronica's brain MRI came back normal.  She also had another eye exam which revealed that although she still has stage 2 ROP (retinopathy of prematurity). it is now regressing.  This is good news!  (Thanks for the prayers Lucy!) She will have another follow up appointment in two weeks - which hopefully will be on an outpatient basis. 

Still no word on discharge.  She had an event during her bottle feeding this evening which means she won't be discharged tomorrow since they would like her to be 24 hours event free before she comes home.  Maybe she will come home on Friday and give her big sister Josephine the best birthday present ever. 

Liesl's new sign to celebrate 7 lbs.

Veronica's wall - she needs to be discharged soon; we're running out of space!

A sign from one of the nurses.  We love the NICU nurses!

Update

In case you haven't heard or figured it out, Veronica is still in the NICU. And the reality is that she could still be there for several more days or even weeks. I'm not entirely sure how we went from the plan being she could leave yesterday to not knowing when she can leave. There has been no change in her behaviors. The issue that remains is that she has "events" with her feedings. But this has always been the case so I don't know why they ever told us she was ready for discharge to begin with. So at this point, I am feeling a little frustrated and even discouraged. On top of that, I started my maternity leave last week because I thought she was coming home. So now I will have less time with her when she actually comes home. I have thought about going back to work, but I keep hoping with each day that we will be given the green light to take her home. Some people have said that this part of the journey is just as hard as the beginning. I wouldn't necessarily agree - those first few weeks were almost unbearable. But to be where we are now is certainly challenging. When she was so tiny and in the isolette, it was easy to see why she couldn't come home. But now when you look at her, you would never know all that she has been through. She is big, beautiful and looks so ready to come home. The waiting is hard on all of us. Even the kids are anxious to have her home. Andrew returns to work in a week and a half....please say some prayers that she will be home with us well before then.

Veronica

Here is a short video clip of Veronica in the NICU, which hopefully will only be her home for one more day. 

Maybe....

Veronica is still in the NICU but maybe, just maybe she can home tomorrow. We won't know for sure until tomorrow which is soooooo hard, but not nearly as difficult as the 112 days we have already spent in this place. Not that we aren't so grateful for everything the nurses and doctors have done for Veronica, but enough is enough already.

So here is an update on where things stand as we prepare for discharge:
- Veronica passed her hearing exam which is one less thing to worry about.
- the results of the sleep study were positive which means it is unlikely that she will go home on an apnea monitor.
- the brain MRI has still not occurred. There was one attempt but the MRI folks ended up dealing with an emergency so it never happened. The docs have ordered it again for today and have informed the scheduler that Veronica is going home tomorrow which hopefully means they will make sure it gets done today.
- when Veronica takes her bottles, she occasionally has "events" but they are self resolved. Last night when i was giving her a bottle, she gagged, stopped breathing and her face changed color. But once she was stimulated a quick second or two later, she took a breath and all was fine. It's a little scary to be taking her home knowing that this could happen but we do feel prepared in case it does. The events never occur when Veronica is breastfed so we will hopefully be doing more nursing when she is home.
- the NICU folks have already connected with our pediatrician's office in Rockville and they will expect to see us the day after discharge.


So we will wait to hopefully hear some great news tomorrow. If not tomorrow, then maybe the next day or the one after that.

Stay tuned....

1 Day Old

Today is the first day we started calculating Veronica's adjusted age as opposed to her gestational age. So although she is actually 3 1/2 months old, she is considered to be 1 day old adjusted or corrected So in terms of developmental milestones, her adjusted age is used as opposed to her actual age for obvious reasons.

In terms of development, Veronica will have a developmental evaluation at Children's Hospital at some point after discharge to track her progress. I imagine there will be additional appointments as needed for follow up. We have also referred her to the program in our county which provides early intervention services. Because of her low birth weight, she automatically qualifies for services due to the "high probability for developmental delay". The wonderful thing about this program is that it is home based and completely free. They will come to our home in a few weeks to conduct the initial assessment.

Veronica has been doing well after her brief return to CPAP. She has been off since 9:00am yesterday and has been doing fine. The attending physician indicated that he likes to keep babies for observation for at least 48 hours after "events" such as the one Veronica had. So we are back to watching, waiting and wondering when she will come home. But we know we are close and we take great comfort in knowing that. They have already scheduled an opthamology appointment at Children's Hospital on Thursday which means they are thinking she will be home by then. Let's hope so....

Keep the prayers coming! Thank you!

40 Weeks

Today is Veronica's due date which really is something to celebrate when you think about it. Almost 4 months ago, when I was admitted to the hospital and before she was born, the doctors cautioned us about Veronica's chances of survival and we learned about nearly every potential complication she could face in the NICU. And being born so early, she had a higher probability of developing the most serious complications that preemies can face. But she has done remarkably well. And although we don't know what challenges are ahead of us, we will always be grateful that her NICU journey went as well as it did. I know it's not over yet but we are so very close and reaching 40 weeks was indeed a milestone. Happy due date, Veronica! You've come a long way baby!

We brought a cake to the NICU to celebrate Veronica's due date - and also to thank the doctors and nurses.

Not Tomorrow

Unfortunately it does not look like Veronica will come home tomorrow. Last night she went back on CPAP, something which is not uncommon for babies who have been on CPAP for an extended period of time. I don't have any of the details yet, but needless to say this is a huge disappointment. We have seen it happen numerous times before - parents given a discharge day and then for whatever reason it gets pushed back and back and back.....this is all part of the NICU journey. While we knew this could happen, nothing could really prepare us for how disappointing this would feel. So we will give ourselves some time to feel sad and discouraged. But then it's time to hold our heads high. She WILL come home. We know that to be a fact. And she IS doing well which often is not the case for 24 weekers. We will get there....slowly but surely, we will get there. Thanks for all of the prayers and support.

Friday

The plan is still for Veronica to be discharged on Friday despite her having an increase in desats over the past 24 hours - specifically when she feeds.  She also had one brady (heart rate drop) which was self resolved.  We were worried that these events might delay Friday's homecoming but the doctors aren't overly concerned at this point.  She was given a diuretic today which should release any excess fluid in her body which could be impacting her breathing.  And since the desats are occurring when she feeds, it may just be a matter of her learning to pace herself which is something we will have to work on with her.  Although she may look like a full term baby now, we have to remember that she was born 4 months early and is still impacted by her extreme prematurity.  The suck/swallow/breath reflex can still bechallenging at times because of her prematurity.

Tomorrow they will complete some blood work and if all looks clear, we will plan to take her home on Friday, which is in TWO DAYS.  We're still waiting on the sleep study results and she still hasn't had the hearing screening, which should be tonight, or the MRI, which should be tomorrow.  But none of these things should hold up her discharge, which, if I haven't already mentioned could be on Friday.  FRIDAY - two days from now!!! We are so excited it's hard to think of anything else. Veronica's coming home!!!!!!

August

August has finally arrived and we couldn't be more ready to have Veronica home with us. Yesterday during rounds the doctors ordered several things that need to happen prior to her discharge. The first was her car seat test which is basically a test to see if babies have any events while seated in their car seat. Veronica passed with flying colors. The next was a sleep study to assess whether or not Veronica has any episodes of apnea while she sleeps. She had the study today and we should get the results in a day or two. She also needs the newborn hearing screening which every baby must have prior to leaving the hospital. She will be getting that tonight. Finally, she needs an MRI of her brain to see if everything is clear. Hopefully, the MRI will be completed tomorrow. If all goes as planned, we have been told that Veronica could be discharged as early as Friday....Friday, as in three days from now!! Can you believe it? Veronica will be home soon!! We are thrilled!! Hooray!! Go, Veronica, go!!

    

So Long CPAP

Liesl made this sign for Veronica's CPAP machine, which is still next to her crib side and will probably remain there for a few more days.  It's still too soon to say if she is off for good but we are feeling fairly confident that this could be it.  I still have moments when I find it hard to believe.  My little 1 lb, 4 oz., 24 week micro preemie is breathing completely on her own with no support at all.  It is truly amazing and we are so proud of how far she has come.