A Big Step Forward

Virginia was extubated this morning! This means that they removed the endotrachial tube and ventilator that was providing her respiratory support. She is now on a lower level of respiratory support called NIP, where she must initiate each breath that she takes and is only supported with additional oxygen and pressure. Her previous support also took breaths for her at a set rate. While this support appears physically more cumbersome (as you can see in the photo below), it is much better for her respiratory development.

I was elated to finally get to see Virginias little lips, tongue, chin and cheeks. I left those out of the photo below so that Heath can see them for the first time in person when he sees her tomorrow.

We are very hopeful that Virginia can continue to make positive progress in her respiratory development (There are 2 other step down therapies before she would be completely off of oxygen support). The next few days are critical and they have warned us that she may have to reintubated and be back on the vent if her oxygen levels drop or she has prolonged apnea episodes. We could use some prayers in the next few days that she continues to do well on NIP.

As we enter the holiday season, blood banks are often in need of donations. Virginia has received several rounds of blood transfusions and we are very grateful to those people who donated the blood that has gone on to help Virginia fight. We encourage those of you who can to donate blood this holiday season. It is the most valuable gift you can give.

2 pounds!

Virginia has hit a hefty 2 pounds! She is now clearly getting bigger by the day. Her doctors are very happy with how well she is handling her feedings and nutritional supplements . Preemies often have trouble digesting foods and growing off of calories that are digested rather than given intravenously, so Virginia is definitely excelling in this area. Virginia also had her last head ultrasound this week, which thankfully came back completely normal. We are so thankful that Virginia has avoided problems so far in these areas, which are common chronic problems for premature babies.

Virginia's doctors are continuing to take a "wait and see" approach to taking her off of the ventilator and onto a lower level of respiratory support. They have her on very low ventilator settings and are very happy with the condition of her lungs but want her to grow a bit more and have less apnea episodes before making the change.

We have so much to be thankful for this year.

Our beautiful daughter

All of Alyssa's doctors and nurses that helped us bring Virginia into this world.

All of Virginia's doctors and nurses, who care for her with compassion, love, and incredible knowledge and experience.

The constant support of our families and friends.

Our parents, who have driven many miles to support us during the darkest days and the happiest days.

For the many prayers that are coming from near and far, from people we know and many whom we have never met.

Specific prayers that we could use this weekend:
That her doctors are able to successfully take her off of the ventilator soon.

That Virginia continues to steadily gain weight.

That Virginia has less apnea episodes.

1 month old!

Virginia is one month old today! Thank you all for all of your good thoughts, prayers, phone calls, emails, cards, packages and support. We have so much to be thankful for this year.

Arts & Crafts

Virginia and her nurses completed their first arts & crafts project. I think we have a budding artist on our hands ;)

Virginia has a a good few days! She is up to 1lb 14oz and 13.75 inches long. The doctors are very impressed with how well her feedings have been going and anticipate that she will continue to steadily gain weight. Virginia had been on diuretics to help clear her lungs of excess fluid, but she started to show higher than normal potassium and creatinine levels. We are hopeful that she either does well off of the diuretics or that they are able to find a dosage level that her body will be able to handle well. Because of this, they have not changed any of her ventilator settings in a few days. Once her levels normalize (hopefully by tomorrow) they will consider lowering her settings again. We are so thankful that she is doing so well and that we are dealing with relatively minor setbacks like this.

eyes wide open and names

Virginia has had her eyes open for a week and a half now, but we finally caught it on camera. They are dark right now but they will certainly lighten up in the coming months.

Virginia has had a steady, uneventful week, both very good things in the NICU. She has gained some weight and is up to a hefty 1lb 12oz and 13.5 inches long! Her progress on the vent has stalled a bit, but we are hopeful that her consistent growth helps her get stronger and off of the vent very soon. We have learned that patience is a virtue and "2 steps forward and 1 step back" is not necessarily a bad thing as long as there is consistent progress. The highlight of each day continues to be kangaroo care time. Virginia settles right in and we all are instantly relaxed and happy.

Names

Norma Jean's comment in the last post reminded me to write about Virginia's namesakes. Many of you may know of either Virginia Klem or Kathryn Buckley, but I dont think any of you know of both of these special women.

When it became apparent to us that the baby was going to come early, we decided that strong family names were especially important to us. We figured that such a little girl was going to need a big name and some extra help from some very special angels.

Virginia Klem is my grandmother, my father's mother. She lived to be exactly 91.5 years old and was legendary in Greenbelt. She raised 5 kids, cared for my Pop Pop during his fight with MS, cooked killer spaghetti and fried chicken, was a regular at the Greenbelt Municipal pool, and never complained about the ruckus that her grandchildren would make each night after blackout at the Greenbelt Labor Day festival.

Kathryn Buckley is Heath's great grandmother. She lived to be 99 years old! She played a mean game of rummy and spared no mercy on her opponent no matter their age. Kathryn always had a dish of M&M's on the table, little debbies in the cabinet and Stewarts sodas in the fridge as a treat for anyone who stopped by.

Virginia and Kathryn both valued family, community, and faith above all. We wish for our Virginia to covet these same values.

Specific prayers that we could use this weekend:
That her doctors are able to further lower her ventilator settings and make progress toward getting off of the Vent.

That Virginia continues to steadily gain weight.

That her lungs continue to clear excess fluid.

Good Progress and Pippi's Homecoming

Progress

Virginia has made good progress in the past few days. She is now up to full feeds and they have been able to remove her central line. The removal of the central line is great because it means that Virginia is getting all of her nutrition, supplements and medications through her feeding tube, but more importantly it reduces the potential for infection that is inherent with any intravenous line.

As of yesterday Virginia is up to 1lb 10oz and steadily growing! We are hopeful that her consistent growth and her lower ventilator settings mean that her breathing tube can be removed in the coming weeks.

Pippi!

Pippi has come back home after a 6 week vacation in Maryland. We are thankful that my parents were able to take care of her and obliged every time we wanted to skype with her from the hospital. Pippi seems to be happy to be back home and cant wait to meet her little sister.

A very special package and an update

We have been so blessed with so much support from family, friends, coworkers, and strangers. Everyday we come home to cards, emails, phone messages and packages. Each and every one of them help us keep our spirits high and remind us how lucky we are.

A very special package arrived this week, not only because of what was in it but because of the little girl (and her parents) that sent it. Amber, my cousins' cousin (got that?), and Todd have certainly been in our shoes. A little over a year ago they experienced a lengthy hospital bed rest and the preemie rollercoaster. Their beautiful daughter Dylan was born early and is now a beautiful and healthy 1 year old. Their story gave us hope during the darkest days of bedrest and continues to give us hope each day that we walk into the NICU.

This week we received a GIANT box of preemie clothes, blankets, hats and booties as well as a very special note from Dylan and her parents! Not only will Virginia be the best dressed baby in the NICU but she will be wearing clothes full of luck, hope and happiness. Thank you Amber, Todd and Dylan!

An Update

Virginia has had a good week. She has even gained a few ounces. They continue to increase her feedings and lower her supplemental nutrition. She currently receives 6cc's of breastmilk every 2 hours and the goal is to get her up to 8cc's every 2 hours. We are hopeful to reach this goal in the next few days. Once Virginia is at that goal we can remove her central line. Yes, we are now hoping to remove the central line that just weeks ago we were praying to get in.

Virginia has been making progress with her ventilator settings. It tends to be a "2 steps forward one step back" type of thing, but we are happy that she is making steady progress. We are hopeful that she can get off of the vent in the next few weeks. She needs to get a bit bigger and her vent settings need to continue to be lowered in order for her to graduate from the vent.

V opened her eyes earlier this week! Ill try to catch a picture of them in the next few days :)

Specific prayers that we could use this weekend:
That her doctors are able to further lower her ventilator settings and make progress toward getting off of the Vent.

That Virginia continues to steadily gain weight.

That the Doctors are able to remove her central line and discontinue her supplemental nutrition in the next few days.

That her lungs continue to clear excess fluid.

diaper comparison

A little diaper comparison!

To the left are the diapers that Virginia currently wears. In the middle is one of the pampers newborn diapers that they sent us home with in our new baby package. To the right is one of the "all in one" size cloth diapers that we have for Virginia. We cant wait till she is home with us and wearing those big diapers :)

Dad's Turn

Heath got a chance to hold Virginia for the first time on Friday! Virginia continues to do well, her ventilator settings are steadily going down and she is back up to the amount of milk she was receiving before she developed the PDA.

Back on Track

Yesterday we received the news that Virginia's PDA in her heart was successfully resolved with the first round of medication! Thank you all for your thoughts and prayers. They have restarted her feeds and her ventilator settings are gradually being turned down again. We are hopeful that Virginia will be back to making good progress in the next few days.

They have now turned off the humidity in her isolette and her skin is looking great. Because her skin was looking good and she had stabilized since her episode with the PDA we were able to start kangaroo care last night. She responded very well to the skin to skin contact and we were able to snuggle for a few hours. We were all on cloud nine. I think the picures speak for themselves...

Specific prayers that we could use this weekend:
That her doctors are able to further lower her ventilator settings.
That Virginia reacts well to the lower ventilator settings and increased feeds.

First ride of the rollercoaster

They say that the NICU is a rollercoaster. We spent the first 10 days on the gentle part of the rollercoaster but now Virginia is encountering her first real ride. Virginia has developed what they call a PDA (Patent Ductus Arteriosus), which is basically a duct in the heart that has not closed. It is quite common in preemies and can even happen in full term babies. The duct is essential to fetal blood circulation, as it bypasses the lungs, however it usually closes shortly after birth in full term babies. The doctors are treating Virginia with a medication that is usually quite successful in closing the PDA. In the meantime, they have had to discontinue her breast milk feeds, turn her ventilator up, and overall provide a little more support so that her body can focus solely on closing the PDA.

Virginia has remained fiesty and is definitely a fighter. She started to open a little corner of her left eye this morning, so we'll take her winks as a sign that she is in control of the rollercoaster.

Specific prayers that we could use:
That the medication is successful in closing her PDA

That Virginia is able to bounce back to her previous ventilator levels and number of feeds quickly.