In the land of "no news is good news", we have great news! Life is quiet and normal (well, quiet and normal with a little baby and 3 year old running around). In fact, we are pleased to warn that this and future updates may be downright mundane, perhaps even boring. Hooray!!

So the update is that Noelle is making cute little cooing sounds and had her first real smile session a couple days ago. Anna likes to talk to Noelle in her language and thus often will be caught saying "gluh, ahhhhh, and bahhhh" whenever Noelle is sharing some of her deeper thoughts. Anna understands the importance of feeling understood.

We have another follow up appointment with Noelle's cardiologist tomorrow and hope to have very little to report. Since the last update she has continued with weekly doctor's visits and has been steadily gaining weight. She's had her first big round of immunizations and her third shot to prevent RSV and all were accepted without event.

Please know how much we appreciate the continued support and good wishes that have been sent our way. It has and continues to make all the difference in the world when we find ourselves face to face with the challenges of what has passed and what it is to come with Noelle. It is impossible to know what the future will be like, but for now, we are enjoying her for the wonderful , beautiful baby that she is.

I am just so elated I have to share this time (Martin does most of these updates)...

We met with Noelle's cardiologist today and he has declared that Noelle is officially out of the scary zone and is doing beautifully. He said that he is "thrilled" with her progress and how well her surgery has repaired her heart. We also get to discontinue her last medication, so we now are just left with the regular acts of feeding and caring for our little girl. This news combined with the fact that her feeding has significantly improved (we had been threatened with a feeding tube last week because her weight had barely gone up) is just such an incredible relief. It is as though a giant weight has been lifted from my chest, I'm all but floating.

This means that we can share her sooner rather than later which is something we have really been looking forward to. Hope to see many of you soon.

~ :) Happy Mama

The cardiologist visit last week went very well, he was very satisfied with the repair job, Noelle's heart is working great.

The next month or so is still high risk for cold & flu complications, so we'll have to take extra care with checking on the health of visitors. Please delay your visit to us if you have or just had a cold or flu. And be prepared to use the gallons of Purell we have (anti-bacterial lotion). Noelle has been coughing the last few days, which has made feeding a little difficult. Also Anna looks like she may be coming down with something, in which case we'll have to keep the 2 girls seperated; I have no clue how we're supposed to do that, Anna demands Noelle-time just about every 10 minutes

Hopefully in the next few weeks we'll be able to shift our focus from heart-related issues to Down Syndrome. Overall, things are going great now. We hope y'all get a chance to meet Noelle soon.

Tomorrow we'll visit Noelle's cardiologist who will take a thorough and independent (from Stanford) look at her heart.

Slight disappointment today. It had been looking like Noelle would come home this weekend, but her oxygen saturation levels have been down again. Supposedly related to the surgery aftermath, should go away by itself soon. So now we're looking at early next week hopefully.

Yesterday Noelle was transferred from CVICU (Cardio Vascular Intensive Care) to NICU (Neonatal Intensive Care, where she started out at Stanford), she has basically graduated, this is a lower level of care. She should only be in NICU a few more days before she comes home. She is doing great, eating well.

Noelle is recovering quickly, she is looking great. Yesterday 4:20pm she was taken off the breathing machine and has been breathing well on her own since. Last night they resumed feeding breast milk through the feeding tube, this morning she will be bottle fed.

Surgery successfully completed!!!

At 6pm we got a call that surgery would start at 7pm. Melinda was napping but was able to get out of bed in less than 1 second. We rushed to the hospital and got there just in time to send Noelle off with the anesthesiologists (exactly 7pm, no delay…). Thanks to a hospital visit from our friend Paula, who brought us spring rolls and hung out with us, the night went by quickly. We got the message that the surgery had been completed successfully by 11:45pm. Went to see Noelle 00:15am. She will remain sedated for a while.

Surgery went well, Noelle is in stable condition. The pulmonary valve turned out to be small and therefore had to be split; it's not unlikely that another surgery is needed many years down the road to repair or replace the valve.

Our social worker spoke with our surgeon, latest guess is 9pm tonight best case, otherwise possibly tomorrow morning.

Today is shaping up to be a very frustrating day. Woke up around 4:30am, arrived at the hospital 5:30 with the idea to spend an hour with Noelle before she would be taken over to the operating room 6:30. Well, 6:30 passed without anything happening. By 7:15 we were advised by the nurse to get some coffee and bagels, without any explanation for the delay yet. Around 7:45 we got back to Noelle's bed, the nurse had heard some vague rumor that all beds in the CVICU (cardio vascular intensive care) were (still) full; this is where Noelle would go after surgery. A space needs to (and was expected to) clear up before surgery starts, a domino effect/hotel management issue. At that point Noelle started to get hungry (i.e. cry) but we couldn't feed her because the upcoming surgery (last feeding allowed 6 hrs before surgery, she's on IV again). So Melinda spent over an hour trying to calm down Noelle until at 9:30 we finally got an official message that the surgery had been delayed. But we were assured that the surgeon is still very committed to working on Noelle's case today. This should happen between 4pm and 7pm. At least by deciding on that much delay, we were allowed to feed Noelle which did miracles. We left the hospital 10:30am with the intention to return between 3-4pm. Since then we got a phone call from our social worker expressing doubt on whether the surgery will happen today at all, but it may still. @&#%! To be continued…

We met with the surgeon yesterday. It was a very positive meeting, his explanation of the procedure and risks were really clear. We really know what to expect tomorrow.

Initially our meeting had been postponed to Thursday, his schedule changes by the hour due to emergency surgeries. Then they called us again yesterday morning whether we could come in right away. Everytime they call us we get scared that the surgery has been postponed…

He elaborated in detail how the timing of the surgery is a tradeoff between doing it later vs. doing it sooner and how this caused our communication frustrations with some doctors in the first few days at Stanford. Doing it later (3-6 months after birth) has the advantage that pulmonary vessels will have relaxed by then (they're tight right after birth and usually relax during the first few weeks) which results in lower pressure in lungs. This is especially important if there is a chance that they need to split the ring in the pulmonary valve (which is 50/50 in Noelle's case); the more they need to split it (if the opening is small to begin with) the more the valve will leak. The valve should only let blood through from the heart to the lungs (one direction), but if it leaks blood will flow back from the lungs to the heart when the heart relaxes, making the heart's pumping less efficient. This is more of a problem when the pressure in the lungs is higher. Doing the surgery sooner reduces the risk of having to deal with the pulmonary valve potentially closing further or even completely; there is a slight concern for this since Noelle has been having these "blue spells". Doing the surgery this Friday was considered to be the optimal tradeoff.

So "normally" doctors prefer to wait a few months and since Noelle didn't have any spells during the first few days at Stanford (she did before that in El Camino, which is the reason she was transferred to Stanford for surgery), some doctors believed it would be better to wait, resulting in the communication confusion. But now, after Noelle has had spells at Stanford, everyone seems to be on the same page.

I think we have the most experienced surgeon for Tetralogy of Fallot, this is routine surgery for him, he will do a great job. All we can do now is wait (and bite our nails). Best case scenario is Noelle coming home 7-10 days after surgery. We go to Stanford tomorrow 5:45am, snuggle for a little bit and then send her along with the anesthesiologist at 6:30. The whole surgery should be done by 11am and the surgeon will talk to us at that point to report how it went. Stay tuned.

Noelle is opening her eyes and looking around a lot. It's weird how much she has changed already without ever having been home. Anna asks about Noelle every day, especially when mommy is at the hospital. She has a cold now so I doubt she will visit Noelle again before surgery.

Noelle is on the surgery schedule! It has been scheduled for Friday the 14^th 7:30am. We are going to meet with the surgeon on Wednesday. We're very excited and nervous at the same time…

Looks like perhaps we are having our first experience with hospital burocracy/politics. They are telling us that Noelle is doing great and she'll probably be sent home with us in few days. That there are many other kids who need the surgery more urgently than she. While that sounds great for her, we have to remember that the whole reason that she was transferred to Packard in the first place was that both her cardiologist from El Camino and the surgeon at Packard agreed that the irregular patterns of oxygen saturation in her blood combined with the fact there is a little piece in her heart that is growing in such a way that could result in sudden spasm (eek) means that she really ought have things fixed sooner rather than later. The other frustrating communication we had was that we were told by a doctor in the NICU that we have absolutely no choice in which surgeon performs her surgery. While we know that there is more than one surgeon that can do an excellent job, the surgeon we had hoped would perform the procedure is especially expert in her particular defect. And, of course, we want the best, this is our daughter and we only get one shot at this.

But yesterday we had a good talk with Noelle's cardiologist from El Camino hospital (who ordered Noelle's transfer to Stanford), and he still believes that Noelle would be best served with expedited surgery. He also said that the Stanford surgeon (who we haven't seen directly yet) agrees with him. Looks like the Stanford cardiologist and this surgeon are in disagreement. He also told us that we absolutely DO have a choice which of the 3 surgeons would perform the surgery. You just wonder when they tell you now is not a good time, things are too busy, when would ever be a good time then. Are they going to send Noelle home until her problem becomes an emergency and she has to come in one day by ambulance with a low blood oxygen level to be operated on by a surgeon who just worked an 18 hour shift? I'm glad the El Camino cardiologist is being so helpful, he expects to get more updates from the surgeon today.

Martin is going back to work today. His boss has been extremely supportive.

Noelle's second day at Packard NICU went much better than the first, for me that is. I pretty much just chalk up the first, difficult day as a rough transition. Fortunately Noelle has managed to take it all in stride (unlike her Mom). In fact, she is doing so well that now there is talk of her being released in just a few days and waiting for the original three months or so before they perform her surgery. This news is both wonderful, "Yay, my baby is doing great!" and somewhat anxiety producing because we had really appreciated the thought that we could just get past this stage and not worry so much about protecting our little miss through peek flu season. It's really difficult to go back and forth so much between the excitement of having her home with us vs. having the tough part over with. A lot of emotional flip-flopping going on right now but the good news is that she looks great and is extremely cuddly. :)

Hi all,

First of all, thanks all of you for the amazing support Melinda, Anna and I have received from you. The kind words, meals, errands have made all the difference. I don't know how we would have dealt with this without all of you.

Yesterday we were told that Noelle was going to be dismissed from the hospital, which was a little sooner than expected. We absolutely ecstatic, giddy like little kids. We already spread the word to some of you that she was coming home. When we arrived at the hospital last night there was a slight change of plans. Her oxygen saturation level had dropped a little bit. Nothing to be worried about, but unexpected since she had been fine for several days now without additional oxygen supply. So they wanted to keep Noelle overnight for observation with a good chance we would bring her home today. Noelle's oxygen sat recovered quickly, but it dropped one more time that night, followed again by a quick recovery.

This morning we spoke with the cardiologist. He reiterated that nothing serious had happened but his feeling was it would be better to do the heart surgery right away. Since the reason for the 2 spells were not understead he was concerned that the heart condition might get worse faster than expected. He also felt that given the symptoms there is more risk for respitory infections that in Noelle's case could cause nasty complications. Noelle's heart condition is called 'Tetralogy of Fallot', a combination of 4 problems that cause low levels of oxygen in the blood and overworking the heart. Whoever is interested in more details, please check:

The cardiologist had discussed the case with the cardio surgeon at Stanford hospital and he expected that the surgery could happen in 2-4 days. This surgery can be done on newborns right away without a problem, the reason they typically wait 3-6 months is that the infant can get a little stronger and get some immunizations before surgery. We were overwhelmed at first because we expected to take Noelle home. But perhaps it was better this way, just to get over with it so we don't have to deal with it in 3-6 months (and whatever scares we get before that). So, a slight change of plans.

The experience at Lucile Packard (Stanford) NICU so far has been very different (half day). The room Noelle is at (1 of 4 rooms) is very busy, the number of babies per square foot is probably 5x that of El Camino, it's noisy, not a pleasant place to hang out. Also our 'commute' has gone up from 3 minutes to 25 minutes, I doubt we can keep going there 4-5 times a day. It's tough to start over again, they don't know Noelle yet, we don't know the nurses and doctors. What was very dissatisfying today was that nobody knows the 'plan' yet, we expect to learn more tomorrow. We were told though that it is very unlikely that the surgery would take place within 4 days, since Noelle seems in stable condition and other babies need the surgery more urgently. So, at this point we are in the dark on how long Noelle will be in that hospital and whether she will come home before the surgery or not. What a frustrating day.

Last but not least, we want you all to know that we really enjoy you calling and asking questions. We are doing really well and are comfortable discussing any aspect of Noelle's condition, so please don't be afraid that you might upset us. Some of you have tried to call only to find out that we had a doctor on the other line. Please call back, we really do want to talk to you.

Hi there,

I just wanted to grab the chance to say "hi" and give a little update on how things are going. For the few of you that are receiving the news of our newest Voogel for the first time, please skip down and read the email below that Martin sent out last night to get caught up on our current events.

I want to share that I/we are doing better than I would have ever imagined a couple days ago. Receiving the news about our sweet new daughter was absolutely one of the toughest moments of my life but so much of what has transpired since then has been so amazingly positive, I honestly have a greater sense of optimism about life and people than I ever have. In just the past 72 hours (actually less) so many people, friends, family and strangers, have reached out with such love, support and kindness it has been just overwhelming. I haven't even been able to keep up with all the wonderful offers of help, there have been so many and I deeply appreciate each one. And while Noelle's diagnosis poses obvious challenges now and in the future, every moment I spend with her allows me to realize how incredibly lucky we are to have her. Even though we have been through the newborn process before it is still so amazing to experience such intense love for someone you've known less than three days.

We hope Noelle will be home with us very soon and look forward to sharing her with all of you.

Tuesday december 28th a little before 3am baby Noelle Alexis Voogel was born. She weighed 7 lb and 2 oz and was 18 1/2" long. Melinda is doing fine and came home today.

Noelle came with a few surprises. The first is that she came with an extra copy of chromosome 21, which results in a condition commonly known as Down Syndrome. The second surprise is that she has a congenital heart condition which will require open heart surgery between age 3 and 6 months. This condition presents no acute danger but will gradually become more of a problem when the child grows if not operated on. Heart problems are very common for babies with DS, about 50%.

Noelle has to stay in NICU (Newborn Intensive Care) for at least a few more days, possibly a few weeks. They are performing tests to determine what type and severity of Down Syndrome she has. She is being fed thru IV but we're starting to have success feeding her. Once she's off the IV we can bring her home. Anna got to visit her this afternoon and was delighted she finally got to meet her baby sister, also disappointed that Noelle didn't come home with us.

Life has been an emotional rollercoaster the last few days, but support of friends and family has already been great. Fortunately this area has some good support groups and Lucile Packard hospital has 2 of the best baby cardio surgeons that do the type of heart surgery Noelle needs.

I don't know what my work schedule will be like in the next few weeks. We go to the hospital 4 times a day - which is fortunately around the corner. Melinda got dismissed from the hospital early but needs a lot of help with everything. It's hard to focus on anything right now.

Noelle is a real cutie, I attached a few photos of her. Hope to see you all soon.