busy week

Virginia has had a busy week filled with lots of progress, alot of growing, a steady stream of visitors and some new experiences.

Heaths parents, aunt, sister, brother in law, and nephews came down to Connecticut for a few days to visit and my parents, sister, brother in law and nieces are arriving tomorrow for a visit. We are enjoying celebrating the holidays with our families, showing off our growing little girl, and getting their help in getting Virginia's room together. We are thankful to each of them for their love and support, home cooked meals, help around the house and always knowing how to make us smile.

Virginia is up to 3lbs 6ozs and 16.5" long. She is now on the lowest level of respiratory support and has truly made tremendous progress in the past few weeks. They have tried to bottle feed her, but it is clear that she needs a little more time until she is ready for that challenge. Like every other milestone, we are confident that Virginia will tackle bottle feeding when she is ready.

We are looking forward to the new year and know that 2012 will be a great year for our family. We hope that it is filled with good health, lot of laughter and happiness for our family and yours.

Our Christmas Gift

Virginia gave us a wonderful gift yesterday, she is now off of mechanical respiratory support and on nasal cannula. This is more wonderful progress. She is still on "room air" oxygen and breathing comfortably.

Virginia's doctors ordered a renal ultrasound last week because of our family history of kidney problems and did discover a few kidney stones which are likely the result of some of the medications that she had several weeks ago. She has not shown any problems clinically and we likely would have never known about them if they had not performed the ultrasound. We are hopeful that the stones won't present any problems, but the nephrologists will regularly check them.

The focus in the next few weeks will start to shift to oral feedings and transitioning to an open crib. While these next steps will certainly present new challenges for Virginia, we are so excited to be able to be more and more involved in her care and help her along in experiencing more and more "baby" milestones.

Specific prayers that we could use this weekend:

That Virginia is able to continue her great respiratory progress.

That Virginia continues to steadily gain weight.

That Virginia's kidney stones cause her no problems, or better yet reslove entirely.

That Virginia takes to oral feedings well.

We cannot thank you all enough for all of the good thoughts and prayers that you have sent our way. We ask you that you continue them into 2012. We expect it to be a very exciting year for us, but recognize that there will be many challenges along the way. For now, we are going to celebrate all of the great things that Virginia has been doing lately and enjoy the holidays with our little girl.

Wishing each of you a very happy holiday season

2 Months Old!

Virginia is 2 months old today. Its hard to say if the time has flown by or gone at a snail's pace. I suppose it depends on the week. Lately Virginia has been doing a lot of growing and has been making great progress, so the days are flying by. She is up to 3 pounds and was moved out of the intensive care room and into a transitional care room this morning. We are thrilled with these milestones!

We feel so blessed this holiday season. While this is never how we imagined starting our journey as a family, we are so happy, thankful, and fortunate to be where we are. We are looking forward to celebrating the holidays and seeing family and friends in the coming week, but we are also looking forward to a quiet Christmas day as a family of 3 come Sunday.

photos

Virginia has now doubled her birth weight. She is 2 pounds 14 ounces and almost 16 inches long. All of her nurses are amazed how well she has been doing and how big she is looking. There are several tiny new babies in Virginia's NICU room. Seeing these new babies around us is a great reminder of how far we have come just like passing the rooms with the "big babies" is a good reminder of the good things to come.

The picture below was taken while her nurses were changing out her CPAP equipment and cap. It was nice to get a good look at her face without all of the tubing.

Even more good news

Virginia was switched from NIP to CPAP on Friday and they have been lowering her CPAP settings each day. She is still on "room air" oxygen support and has been maintaining her oxygen levels and heart rate wonderfully! She has certainly turned a corner in her respiratory progress in the past week and a half and we pray that she continues to improve. This is truly the best christmas gift we could ever ask for.

I will post some recent photos tonight or tomorrow. Thank you all for your continued good thoughts and prayers.

Good News

Virginia was extubated again on Saturday and has been doing great on NIP! Below is a quick summary of the different types of respiratory support that Virginia has been on or will eventually be on:

endotrachial tube and ventilator: a tube placed directly into the airway that delivers direct breaths with specified pressures and oxygen concentration.

NIP: Prongs placed in the nostrils that provide intermittent breaths with specified pressures and oxygen concentration.

CPAP: same as the NIP but instead of providing breaths it provides continuous pressure.

Nasal Cannula: Prongs placed in the nostrils that provide continuous pressure at a lower rate than CPAP.

Everyone is very happy with how Virginia is doing off of the vent. Her settings are fairly low and she is on "room air," meaning the oxygen concentration is the same that you or I breath everyday (21% oxygen). She has had very little apnea and her breathing is nice and comfortable.

Now that she is extubated she has been sucking on a pacifier and let us hear her first cry. Even 7 weeks after most people hear their baby cry for the first time, it was still the most beautiful sound in the world.

our little burrito with her big pacifier

Happy Holidays from Virginia

In Lieu of Holiday Cards this year, we are e-wishing each of you a very happy holiday season. We are so happy to celebrate Virginia's first christmas together as a family.

bright eyes

Virginia has been more alert lately, letting us see her pretty eyes. She has developed a reputation for being extra expressive and lets her nurses know exactly what she wants. Some may say that she has developed a reputation as a diva...

1 pound...

Virginia now weighs 1 full pound bigger than her birth weight. She is getting bigger and stronger each day and her doctors are getting her prepared to try to take her off the vent again in the next week. We could use LOTS of prayers that the second attempt is successful and that she stays off of the vent.

Virginia has had a very good week save for about 24 hours mid week where she was retaining too much fluid and needed a round of diuretics. After receiving the diuretics she was significantly better in a matter hours. Her doctors have restarted her daily diuretics, which should help keep the fluid under control. She was on these about 2 weeks ago, but her kidneys were too sensitive to them so they had to discontinue the daily dose and give a different diuretic "as needed." The problem with that was determining when she needed the intermittent dose, like earlier this week where it took her having a bad day to know that she was in need of the medication. So far her kidney levels are great on the daily dose, so we are hoping that it stays that way.

She also had her first eye exam this week. Her eyes looked normal for her age and prematurity and will be checked again in 2 weeks.

Our growing girl is now 15.3" long and about 2.5 lbs and we are finally seeing her get a little chubby. She is getting more beautiful each and everyday. She will hate me for this in about 15 years, but check out her double chin below :)

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

That Virginia continues to steadily gain weight.

That Virginia is able to handle her daily diuretics.

Just a few Photos

Virginia loves her new snuggling blanket, which was knit by her great grandmother :)

Big Girl Clothes

Some of Virginia's nurses have started dressing her in big girl clothes! She is now 2 pounds 4 ounces and will start fitting into the rest of the adorable clothes that Dylan sent her very soon.

Virginia has been doing really well since she has been back on the vent. Her settings and oxygen requirements are well below the settings that she had before they transitioned her to the NIP. We are praying that she continues to do well and that they can try to take her off the vent again in the next week or so. She now gets about 1/2 an ounce of food every two hours and continues to impress the doctors and nurses with how well she handles the feedings.

We are so thankful for all of the good thoughts and prayers that are sent to Virginia everyday.

A Step Back

Unfortunately Virginia's doctors reintubated her yesterday. They did a chest xray in the afternoon and she simply wasn't keeping her lungs full enough and needed the added pressure that the endotrachial tube and vent provide.

While this is frustrating and disappointing we are thankful for a number of things:

She lasted over 24 hours off of the vent and had only one apnea episode.

She was initiating her own breaths comfortably.

The reintubation did not have to be done urgently and went very smoothly.

Virginia just needs to gain some weight and strength before attempting the change again.

Thank you for your continued prayers.

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.

A Bumpy Few Days

Luckily most of the bumps were for Mom and not Virginia.

Virginia has been doing very well with only a few minor setbacks. Her 2nd head ultrasound remained the same and showed no bleeds. This was wonderful news to receive yesterday! She has been doing really well with her feeds so they have been quickly increasing both the quantity and frequency of her little meals. This is great news for a number of reasons. First, because they were never able to successfully adjust her central line into the "perfect" position, but they now don't think they will need the central line because she is getting so much of her nutrition through her feeding tube. Secondly, the quick progression of her feeds means that she will soon start gaining weight, a critical component to getting her off of the ventilator.

The biggest challenge for Virginia these days seems to be her reliance on the ventilator. The ventilator makes it too easy for her sometimes, and she slows down the amount of breaths that she takes on her own. This is a very normal problem for babies her age. They have been adjusting some of her settings to help her be more consistent with her breaths.

Virginia continues to be a fighter and is impressing her nurses and doctors. We, of course think she is getting more beautiful by the day. Her coloring and skin look great, her eyes are very close to opening to the world, and her personality is definitely emerging.

I was readmitted to the hospital on Saturday night due to some complications from the c section. While I am very anxious to start feeling better, it is nice to only be a few floors away from Virginia. I am very ready to be back in my own clothes, eating real food and sleeping in my own bed though.

Sorry for the lack of photographs. I thought Id only be her for a night at most, so I don't have my camera here.

Thank you all for your continued prayers, good thoughts and support. Heath, Virginia and I are very lucky to have so many people thinking about us and sending good wishes.

Specific prayers that we could use:
That her doctors are able to further lower her ventilator and isolette settings.
That Virginia start taking more and more of her own breaths on the ventilator.

That Virginia start to gain weight.

11:11am and the past few days

The two things that I will never forget from Virginia's birth were when the nurse called the time of birth as 11:11am and when they finally called over from the adjacent room to tell us "it's a girl!". Normally the doctor would make that announcement after the baby was out, but in a premature birth there is no time for a gender check or a peek over the curtain.

Back to 11:11am. Other than being a cool number, this time of birth wouldn't typically strike me as something too special. However, that time of birth was immediately special to me when I heard it. As I said in a previous post we spent 3 days on the labor and delivery floor. The distinct features of the rooms on labor and delivery were the rock hard beds, the tv set to the newborn channel, and the large red digital clock that sat above the bed. That was the slowest moving clock in the world during those days, but for some reason I noticed 11:11am and 11:11pm every single day. 11:11 is definitely a special time to us now.

The past few days

Virginia has continued to amaze us and has certainly been a little fighter the last few days. She has remained stable and they have been able to lower her ventilator settings each day. They have also started to lower the humidity settings in her isolette. We joke that she is bathing in French Polynesia because of the high heat and humidity that she lays in each day. The heat and humidity help regulate her temperature as well as mature her skin. By lowering the humidity it means that her skin is maturing and we are closer to being able to hold her and start kangaroo care. They have started feeding Virginia breast milk through a feeding tube this week and have been very happy with how well she has been tolerating the feeds, so much so that they have increased the frequency of the feeds as of today.

The biggest news of the past few days is that they successfully placed her central line last night and were also able to take out the lines that they placed in her belly button at birth. She was not very happy during these procedures and gave the staff a good fight but remained stable throughout and never let her heartrate or oxygen levels drop. Unfortunately this morning they realized that the line had slipped out of place a bit. The doctors will be doing a small adjustment tonight, which will hopefully put it back into an optimum position.

The most recent chest xrays look great and she had her 2nd head ultrasound this evening. We should get those results over the weekend. We are praying hard for good results and ideally no changes from Monday's ultrasound.

Specific prayers that we could use this weekend:
That her doctors are able to further lower her ventilator and isolette settings.
That the doctors are able to successfully maneuver her central line into the perfect position.
That her second head scan report comes back clear and unchanged since Monday.

Day 4 & 5

Virginia has had pretty uneventful days on Tuesday and Wednesday.  Uneventful days are good days!  They have been able to continue to lower her ventilator and her blood pressure has be mostly stable off of her medications.  Her Lumbar Puncture culture is still negative, which is great, but they will continue to watch it for 5 more days.  The big hurdle in the next few days will be to get her central line in successfully.

Today was discharge day for me, which was difficult emotionally and physically.  Thankfully our day was made much brighter by being able to hold Virginia in my hands while they changed her bassinet linens and getting to change her teeny tiny diaper.  I have included a few photos below.  She has lots of wires and tubing on her, but that has become very normal to us.  We love watching her furrow her brow, try to open her eyes, wiggle her huge feet and grab at her tubes with her hands.

We could use the same specific prayers as yesterday:
That her lumbar puncture cultures continue to come back negative.
That her doctors are able to further lower her ventilator settings.
That the doctors are able to successfully put a central line in so that Virginia has a more stable access point for her medications.
That her second head scan and next chest xray come back clear.


Thank you all for your continued prayers and support! It is powerful