Thursday, January 26, 2012

We have come a long way

This week marked a major milestone. Virginia spent the first 94 days of her life on oxygen support. On Monday they removed her nasal cannula and she is now free of all oxygen support. Virginia has come a long way. She spent 50 days on the ventilator, 6 days on NIPV, 7 days on CPAP, 5 days on high humidity nasal cannula, and 26 days on 1 liter of nasal cannula.

Looking back on pictures from her first weeks of life we are reminded of all the answered prayers, all of the progress, and truly how far we have come.

Below is Virginia at 4 days old with an endotrachial tube, a feeding tube, 3 IV's, umbilical lines, and monitoring lines.

And this is Virginia today with only a feeding tube and monitoring lines. On her 4th day of life we were worried about a possible infection, praying for the skill of her nurses and doctors to get central line in her tiny arm, and nervously awaiting the results of her second head ultrasound. Today on her 97th day of life we are obsessively tracking her bottle feeding, snuggling and reading books and inspecting all of Virginia's perfect features.
We love holding her fingers....

kissing her forehead...
stroking her hair..
tickling her toes...

and watching her sleep.

Virginia continues to make progress with bottle feeding. She is choking alot less these days and just gets tired while eating. As she gets bigger and gains strength she will have more and more stamina while bottle feeding.

Monday, January 23, 2012

3 months old!

Virginia turned 3 months old on Sunday! Looking back at her photos from her 1 month and 2 month birthdays, it is easy to see the amazing progress that she has made. Despite this great progress, 3 months in the hospital is a LONG time. We now know more doctors, nurses, occupational therapists, respiratory therapists, cafeteria ladies, security guards, food truck workers and hospital staff than we ever could have imagined. The days are definitely getting repetitive and sometimes the little things and the routine wear on us.

By far the biggest roadblock to bringing Virginia home is bottle feeding. She does still have some oxygen support, but we are confident that she will be able to wean off of the nasal cannula once her feeding issues are resolved. Virginia has made progress, albeit sometimes excruciatingly slow, with the bottle. She continues to do great at breastfeeding and is building her strength and stamina each day. We are hopeful that she can continue to make progress in the coming week and start slowly replacing her feeds with full bottle or breastfeeding sessions.

At 3 months old, Virginia weighs 4 pounds and 10 ounces. She is still rather quiet and content but squirms, stretches, squeaks, and chews on her fingers when she is hungry or wants attention. She is outgrowing her smaller preemie sized clothes and has an ever growing double chin :) Heath and I are involved in almost all parts of her care. On any given day we change diapers, give baths, rock and read together, and feed her. What a change from the days where we sat at her bedside staring at her in her isolette!

Specific prayers that we could use this week:

That Virginia is able to successfully feed from the bottle and start replacing entire feeds with bottle feedings.

That Virginia continues to steadily gain weight.

That Virginia's kidney stones cause her no problems.

That Virginia's tests and lab values continue to come back normal.

That Virginia's doctors, nurses, therapists and parents remain patient, allowing Virginia to lead the way in tackling all of the challenges that stand between her and discharge.

Tuesday, January 17, 2012

virginia shower

My friends managed to pull a fast one on me this weekend. They came together from Boston, Hoboken, New York City, Albany, and Connecticut to surprise me and celebrate Virginia.

These girls are all friends from RPI who have been more than just friends lately. They have been cooks, therapists, and cheerleaders for us. They coordinated care packages, took turns visiting me while on bedrest, made endless calls, sent many emails, brought over meals and most of all believed just as much as we did that we would fight, that Virginia would fight.

I am so thankful for these women. It made my heart happy to celebrate Virginia with them.

Thank you Diana, Liz, Amanda, Bess, Colleen, Jess M, Jess C, Alexis, Anne Marie, Jenn and Suzanne. Thank you for all that you have done, your thoughtfulness, generosity, friendship, and empathy mean more than you will ever know.

Sunday, January 15, 2012

in the moment

As we closeout a wonderful weekend (more on that tomorrow) and an up and down week I am reminded that we do best when we stay in the moment and either enjoy or sometimes merely survive each day. This journey, our life, only gets overwhelming when we think too far into the future, whether that be thinking about the next day, week, month or decade. The moment is always manageable and usually joyous. The future was incredibly uncertain on October 22, 2011 and it still remains uncertain today. What is certain is that there will be tough and scary days ahead as well as many happy and exciting days.

The focus of the week was feeding by mouth. Something that Virginia is clearly going to do on her own terms and on her own schedule. This is true to form for Virginia, and I am quite certain that this will be her personality for a long time and we will love her for it. She started the week by utterly refusing a bottle and scaring just about any nurse that tried to feed her with one. By mid week the doctors ordered a battery of tests to rule out any respiratory, neurological or physiological reason for her refusal to eat. All of these tests and evaluations came back completely normal, thank goodness. We now know we just need more patience. Virginia has not yet coordinated the complex suck, swallow and breath sequence and is just stubborn. By the end of the week Virginia was taking some milk from a bottle for some nurses but not for others and most surprisingly took to her first 2 attempts at breastfeeding like she had been doing it forever. We will continue to be patient, enjoy each day and stay in the moment.

Monday, January 9, 2012


We have learned to have alot of patience in the past 4 months. Patience while on bedrest, patience with doctors, patience with hospital food, patience in the parking garage, patience with doctors, patience with Virginia, patience with traffic, patience with life, patience in our faith. We have definitely felt tested and have been able to cope by taking this journey one day at a time. As we transition from intensive care and can start to see "the light at the end of the NICU tunnel" we are tested with a whole new level of patience.

Virginia still needs to learn to eat from a bottle, wean off of her nasal cannula, maintain her heartrate and oxygen saturations consistently, all while experiencing more and more of the world outside of her isolette. We can no longer track her progress by lab results, oxygen requirements or ventilator settings. Her progress and set backs are much more subjective these days. She is still making great progress though! She is just an ounce shy of 4 pounds, is doing great in her open crib and was even moved into the "feeding and growing" room which is less intensive than the transitional care room that she was in for the last few weeks. She isn't showing much interest in eating from a bottle and is certainly making us all work hard at it. She has always done things on her own schedule, so we knew to be patient with bottle feeding too!

We have really been enjoying spending more time helping with her care and getting to know her little personality better. It has been hectic getting to the hospital after work, but we love spending each evening together as a family.

Monday, January 2, 2012

New Digs

Virginia graduated from her incubator today and now is the proud new resident of an open crib. She is a warm baby and has had no problems maintaining her body temperature.

We have also enjoyed doing kangaroo care again. We had been wrapping Virginia up and holding her for several weeks in lieu of kangaroo care because it was cumbersome while she was on NIP and CPAP.

Heath and I are both back to work tomorrow. I haven't been in the office since the end of September, so it will be quite the adjustment and we both will be settling into a new routine and certainly be busier than ever.

Thankfully Heath is on winter break from his MBA program for another week. He started his fall semester only a few weeks before I was admitted to the hospital and just received his excellent grades today. I am so proud of how well he has done and how he has handled the stress of work, school, and hospital visits.

New Year, New Photos

Happy New Year! We know that 2012 will be a wonderful year for Virginia and for our family. The latter half of 2011 was certainly a rollercoaster filled with the scariest and happiest days of our lives. We are hopeful that 2012 treats us with a bit more normalcy and an equal amount of love and happiness. We have started the new year preparing our home for our little girl, a seemingly normal thing for expectant parents that we finally have the time and mindset to do. We have an all new perspective regarding priorities and what is really necessary. For a very long time we cared less what color the nursery would be or what kind of baby gear that we would need. Now it feels really good for us to be able to paint her room, put together her crib and do some "normal" baby preparations.

Virginia has started the new year looking extra cute. She now weighs 3lbs 10ozs and is more and more alert each day.