Hope Everyone Had a Merry Christmas!

The girls had a great Christmas with snow and lots of presents!

Merry Christmas from the Schoonveld Family <3

Sisterly love... followed by something gross.

A Video of Addy and Cameron:

Pre-pre-surgical Appointment

Dr. Baker-Smith met with us today and explained that the more her and Dr. Kaushal look at Addy's 3-D heart images, the more confident they become with making her heart a 2-ventrical heart. Dr. Kaushal says that he can close the ventricular septal defects, and he believes that there is enough room for adequate blood flow through her aorta. He will be looking to do some patch work in her pulmonary artery as well. This will hopefully suffice to ensure adequate blood flow to her lungs(though, as I mentioned before, until he actually goes in he will not be 100% sure). If he feels there is not adequate blood flow for each artery, he may have to do the Rastelli Procedure (placing a conduit, which will have to be replaced every 10-15 years). We are hoping that he can close the holes and be done with it. As I mentioned in my last post, there are more holes than previously thought, so it will take Dr. Kaushal 4 to 6 hours to completely fix everything. He says that Adriana is looking at 10-14 days in the hospital for recovery. We continue to pray that Dr. Baker-Smith and Dr. Kaushal's instincts are correct and that everything can be corrected with one operation. Their optimism is cautious, but comforting nonetheless. Addy measured 12 pounds, 8.8 ounces today, and 24" long... and HER OXYGEN SATURATIONS WERE 98%! That is the highest they've ever been ;)

Just a Heads Up

Adriana's next appointment will be on Thursday, December 13th, with Dr. Baker-Smith and Dr. Kaushal. We are eager to get a better understanding of Addy's heart and hopefully we will get a better idea of what to expect for surgery. The big day is still planned for the end of January, though we do not have an exact date yet.

Hope

Last night Dr. Baker-Smith called me to tell me that Dr. Kaushal is feeling a little more confident about just doing the one surgery on Adriana, to make her heart a 2-ventricle heart (meaning he will just close the VSDs). Of course, he cannot say for sure that he will not have to do a shunt in conjunction, or instead of closing the holes. Unfortunately, it is still a "wait and see" situation. He cannot really know for sure until he goes in. I was also informed that they found a few more small holes in the ventricles--but they are most certain that they will close on their own once the larger ones are closed. Toward the end of December, we will be meeting with Dr. Baker-Smith and Dr. Kaushal in the same day so they can explain. There are images and videos, which I am thankful for, because I am a visual learner. I will be sure and update any further findings. Until then, we will be praying...

Surgery Time Frame

Yesterday the cardiology department discussed Adriana at their conference. Addy's surgeon has decided that he will operate on her at the end of January. She will be almost 6 months old, bigger, and tougher by then, they say. I know her prognosis is a lot better than we first thought, and I know she is strong. Things could have definitely been a lot worse. Addy was able to put off surgery for this long and she was able to thrive. In fact, she still isn't even on any medications. Adriana has surprised all of us with her strength and she is by far the happiest baby I have ever met. Despite the fact that she has proven she is strong, I am still terrified. A surgery date makes her condition real; though this whole time it seemed like it never existed. It is difficult to wrap my mind around it, still. It seemed like she was such a normal, happy, and healthy baby. Now, it's back to reality. Adriana's next appointment is on December 20 with Dr. Baker-Smith. She will discuss the operation more in-depth with Matt and I. We hope and pray that Adriana will only have to have one surgery.

Happy Thanksgiving From The Schoonvelds!

Our menu: Turkey(smoked and stuffed w/apples & cranberries), green bean casserole, sweet potato casserole, deviled eggs, 3 bean salad, cheesy garlic mashed potatoes, gravy, and pumpkin pie! I forgot about the corn & crescent rolls, unfortunately...

And now for some pics!

All Growed Up

It has now been 5 whole days since Tateum gave up her beloved Sea-Wha and she has been such a big girl. On Sunday she randomly decided to throw it away. We made sure she understood that she would not be getting another one, and told her to really think it through. Tateum nodded and replied, "I am a big girl. Big girls don't need Sea-Whas."

Though she cried the first two nights when Daddy and I put her down to bed, she has not mentioned Sea-Wha since Tuesday! Our lil girl is growing up :-)

Long Day in Baltimore

Addy had to be put under anesthesia today in order to have a 3D echocardiogram and an MRI. Unfortunately Matt and I were unable to be with her during the procedures, but she did very well.

Adriana is now 11 pounds, 10 ounces and her oxygen saturations are still around 90%.

The 3D echo and MRI were in preparation for surgery--basically so Dr. Kaushal (Addy's pediatric heart surgeon) has better measurements. It ensures that he will know exactly what he is dealing with beforehand. The cardiology team at UMMC will meet on Monday to go over the pictures and videos of her heart and discuss her case. They will then determine a game plan. Dr. Baker-Smith will call us back in a week or two when they have all made a decision on exactly what the operational procedures will entail.  Surgery is still planned for sometime between January and March... Though Matt and I will never be ready for it :-(

Halloween!

Halloween was cold but it was also a blast!  Here are my butterflies and me!

Getting So Big...

Any minute now Adriana will be rolling over! It's crazy that she is already almost 3 months old, smiling, coo'ing, and playing. Addy has never once acted like she was anything other than a normal, healthy baby. A passerby would never know she has congenital heart defects. She really is amazing and not to mention a VERY happy baby! I am excited for many more milestones in her life!<3<3<3<3

Hooray for Fall!

We all went to the pumpkin patch on Friday! After a quick tractor ride and a romp through a corn maze, Tateum and Cameron picked out their pumpkins for carving/painting!

I was also able to snap & edit a few fall photos of Adriana being cute as usual ;)

Finally.

While Tateum and Cameron were with Daddy in California this past week, I've been able to cuddle Addy a little more and get some things done around the house! Finally, I can claim victory over Tate & Cam's room. It's all painted, organized, and clean! I was also able to clean out the walk-in closet in their room, paint it, and turn it into additional toy/play space.

Party Hardy!

Tateum's 4th Birthday Party was this past Saturday.  She and her friends had a blast:

Growing Baby Girl

Addy is now 9 pounds, 10 ounces and her oxygen saturations are still around 90%!  She has also grown to 23" long! Things continue to look hopeful--our plan is still to wait until 4-6 months of age to do heart surgery.

Happy 4th Birthday, Tateum!

Good News...

Adriana's oxygen saturations went up again!  She has gone from 85 to 90 to 93!  We are very excited, especially because this past week she has had a cold.  It's encouraging to know that it did not affect her in the least!  Addy is now 8 pounds, 13 ounces and eating "like it's going out of style", as my mom would say ;)

This past weekend we also attended the Air Show where Daddy works at Martinsburg Air National Guard Base:

A Visual of Adriana's Heart

Matt, the kids and I attended Addy's cardiology appointment today.  Good news--on top of steadily gaining weight (she is 8 pounds 2 ounces now), her oxygen saturations went up!  She is now back up to 90!  Anything under 95% is still described as a "blue baby", but her body will cope well until saturations drop below 80.  When it drops (later down the road) we will consider beta blockers, and then the plan is surgery between the age of 4 and 6 month--as long as her tissue obstruction in her pulmonary artery does not call for  an earlier intervention.

I have attached a drawing of Addy's heart that I copied from Dr. Baker-Smith.  She is almost 100% convinced that both VSDs will need to be closed, but the ASD should not affect her.  She predicts that the obstruction, if it does not worsen, should only need "patchwork" for the pulmonary artery to function properly.  A shunt is most likely unneeded (cross your fingers), since the annulus of the pulmonary artery is of sufficient size for blood flow.  Again, that would mean the one surgery would suffice, and Adriana could move on with her life as a normal child, save for a few routine cardiology check-ups throughout her years.

VSD = Ventricular Septal Defect
ASD= Atrial Septal Defect
Purple Arrows = mixing of oxygen-rich and oxygen-poor blood

American Girls

God Bless the USA

Appointment with Dr. Baker-Smith

Dr. Baker-Smith is our assigned pediatric cardiologist and she is absolutely AMAZING.  She's very upbeat and caring as well as brilliant.  Adriana sees her once a week for routine checks.  Luckily, her office is in Westminister, MD and not in Baltimore.  Although it takes an hour and a half to get to her office, distance-wise it is actually closer (and more scenic) to us than Baltimore.  Also, it's nice not having to pay $7 for parking for every single appointment!

Today Adriana received an ultrasound of her heart, her oxygen saturation was checked, and she was weighed.  She is now 7 pounds, 11 ounces!  Her goal was to gain 15-30 grams a day, but she is actually averaging about 38 grams daily!  Her goal for eating is between 2.5-3 ounces every 2-3 hours:  She has been eating 3-5 ounces every 2 hours!  This is extremely important because the bigger Addy is when she goes in for surgery, the better.  It is very encouraging that she has developed such a "talent" for eating, because that will make for an easier recovery as well.  As for her saturations, they have dropped, but not by a significant amount.  Dr. Baker-Smith says that she will put Adriana on beta blockers next week if her oxygen level drops any more.  The medication will slow her heart rate, giving her ventricles more time to fill up with oxygen-rich blood to go out to the lungs.  This will buy time for her to grow and fatten up before having surgery.

Since Addy has been born, her heart has changed a great deal.  She still has two ventricular septal defects (VSDs or holes) as well as a hole between her atriums--hence the mixing of oxygen-rich and oxygen-poor blood.  She also still has double-outlet right ventricle, meaning her two valves are pulling from the one ventricle on the right (they should be pulling from opposite ventricles).  However, the concern before was that TOO MUCH blood was going to the lungs and not enough to the body.  Well, our special girl decided that she was going to form defenses inside her pulmonary artery to slow blood flow to her lungs.  Her cardiologist worries that she developed a little too much obstruction in that artery, unfortunately.  Because of the change in her physiology, this affects surgical options.  Surgical option #1 is closing one of the VSDs to make sure her two arteries pull from different ventricles and then doing some "patch work" in her pulmonary artery to allow more blood flow.  These are straight-forward procedures with great statistical outcomes.  Option #2 would be closing the aforementioned VSD, and installing a shunt in her pulmonary artery to allow more blood flow.  Like the other procedure, the installment of shunts is relatively common, and statistics are promising.  However, if Addy's heart requires a shunt, she will have to endure other surgeries down the road to install bigger shunts as she grows.  Obviously we would like to avoid that.  We hope that option #1 is viable, and it will be Adriana's only surgery.

The hole between her atrium will not affect her, and the second hole between her ventricles will most likely close on it's own.

I hope that I haven't confused anyone!  Basically, it's a "wait and see" situation, as before.  We cannot wait until we can put this all behind us and move on--we have no idea when that will be.  Surgery could be a few weeks or a few months from now.  Until then, we will be fattening her up... and she is not opposed to that ;)

Tateum sings to Addy and Cameron Kisses Her

Home Sweet Home...

Addy's labs and xrays looked great so she was finally released from the hospital yesterday! We will be attending many cardio appointments in Frederick and monitoring growth to determine when heart surgery is needed and what exactly it will entail.

We are soooo excited to have her home!!!!!

The girls are simply in love with her too...

Guess what!

Today Matt and I were told that Addy's heart is actually forming defenses by itself inside her pulmonary artery in order to regulate blood flow to her lungs better!  How amazing is our little girl?!  Although surgery will still have to be done to close the ventricular septal defects, her heart has proven to be strong as well as independently proactive.  This means that we will most likely be able to put off surgery for months.  Addy will have to attend many progress check-ups and we'll play it by ear. 

We are so excited that she is achieving all of her goals in regards to eating, oxygen levels, heart rate and blood pressure.  The doctors explained that unless there is a drastic turn of events, SHE WILL PROBABLY BE DISCHARGED ON MONDAY!!!