Today I was initiated

Today I was initiated into having a boy! He got me this morning when I was changing his diaper. Luckily I moved fast and managed to get it covered quickly so I wasn't completely drenched, but we sure had a mess on our hands (and clothes and changing pad). Things are going well. Last night was our first night at home and he didn't exactly do great as far as the feedings. I set my alarm for 4 hours after I had last fed him. When I woke up I tried to feed him, but he was so tired he wouldn't wake up enough to feed at all. I set my alarm again for the following hour to try again. He still wouldn't wake up enough to eat, so I did it again for the next hour. This went on and on, he never ate overnight. I was sure tired, but he wasn't! He slept all night, which I should have been too. But he ate real good this morning and throughout the day, he just doesn't want to wake up at night to feed. Hopefully we have an easier time tonight. I am going to try to undress him and make him cold to wake him up so he will eat.

We had the home nurse from Alegent come to the house today to check us out and make sure everything was going okay. They weighed him and took his vitals and measured him and talked to me about feedings, etc... He had dropped back down to 8lb. 1 oz. but she weighed him again after he ate and he went up to 8 lb. 2.4 oz. He grew in length and is now 21 inches. They continue to come out once a week for 4 to 6 weeks. So, that is nice that we still have some checks on him to make sure everything is still going good.

I was able to get out and go to the store today. It was nice getting back out into the real world and even nicer to not have the kids to deal with. I could just go, go, go and get what I needed and get out. My mom came to help me today since Vernon went to work. It was nice to have the extra hands with Sophie and meals, etc... Vernon will be home tomorrow and half of Saturday, that will be nice he will get a little more time with baby V.

We have his first doctor's appointment in the morning with his new pediatrician. I will update when we get home from that.

Then I have a massage, I can't wait. My shoulders, back and neck get so tight and sore when my milk comes in and from feedings just being in awkward positions again. I think it will really help. Then we are going to take pictures in the late afternoon. Super excited to get those done.

Happy One Week Old Vollen!

Here are those mangled heels I have been talking about. I finally remembered to take a picture of them.
Him sleeping this morning.
With his little hand peeking out.

Vollen taking the car seat test!

Sophie welcoming her brother home.

Amazing what can change in a week

I can't believe it has been a week since I had my new baby boy. This week flew by. I barely even remember parts of it. It is GREAT to be home, although I don't know what happened to all that nesting cleaning I did before I had him. No one had time to keep it up I guess. Unfortunately, it is all gone and time to start over. I like how he sleeps all the time and I can actually get a lot done. We have been cleaning fools already since we have gotten home. Just so much to do, put away, laundry, & clean. Whew!

This morning Vollen did not pass the car seat test that all NICU babies have to pass in order to leave. They strap him into our car seat that is sitting on it's own base on the floor of my room and then they put a monitor on him that measures his heartbeat and oxygen levels. He is then in there for 30 minutes while they run the numbers. This morning, the guy had put the monitor on his finger and the readings were not good. He dipped down into unacceptable levels. They had to re-do the test later in the morning. This time they put it on his foot and he passed with high levels. It still made me nervous once we were in the car because the car seat is tipped so far towards the back seat to make sure the level is straight. It made his head tip forward a bit and I was afraid that he wouldn't be able to breath. I made Vernon drive home fast!

We finally were able to leave around 1:45pm, which actually if they would have had everything together already and hurried up, we could have been out of there at least an hour earlier than we were. And if Vollen would have passed that test early this morning the first time then we really would have been home earlier, but we are home and we are good and it is nice.

We are going home!

We will be going home tomorrow (Wednesday)! Not sure of a time yet, but my guess is mid-morning or by lunch time. Pretty much everything is done and he is still doing very well off oxygen. So, I figured since all the paperwork the nurses have said that our discharge date is Wednesday. I was the only one maybe not ready, but the more I think about it, they would not send me home if they had any doubts. Plus, the more I think about it I am getting excited about finally going home. Even though I don't mind it here, it will be nice to get back home and settled there with our newest addition. Plus, it will just be easier since Vernon will be working on Thursday, but he will be home on Friday and is only going in for a half day on Saturday. So, I am happy that he won't have to worry anymore about going back an forth everywhere.

He had his picture taken for the hospital website. He was sleeping and didn't have his eyes open, but he hardly does anyway. It was a really cute picture though. Here is where you will go to look his picture up. Facility: I am assuming they will put it under Bergan Mercy and not Lakeside since we are here now. Name: Vollen. Birth Date: April 2009. I just checked and it is not up yet.

He was circumcised this evening and was a little crabby and fussy, the most I have seen out of him, and it is really not that bad! He is resting really peacefully now and did a great job.

All they need to do is a car seat check with the babies that leave the NICU since that is where we were released from and still technically a part of. They need to make sure their airway isn't crushed when he is in it and he can still breath while strapped in. My nurse said they usually do it in the middle of the night (probably since they are not as busy as during the day).

That is about all we have left to do. So, if you were planning on coming up to visit, you will just have to come to the house. I accept any visitors there as well! So, come on over.

Sophie and her brother

Yesterday when Sophie and Vernon came to visit I was feeding Vollen. When I was done Vernon told Sophie tell Vollen he did a good job eating. She said, "Good girl Vollen". Vernon and I started laughing so hard because Sophie always tells Raja good girl for coming inside when called. It was really funny. We said Vollen is a boy, say good boy Vollen and she did. She was also being funny later and saying good girl daddy.

Lately, she seems so much older. It is crazy how much she has seemed to advance this past week. She is saying sentences now and just the funniest things. Her little personality is really showing now. She gives the funniest looks and just cracks us up. She truely is the joy in our lives and make us laugh and smile constantly. We feel so blessed to have such a great girl!

Sophie kissing her brother today when they came up to visit. I was so proud of daddy dressing her cute and fixing her hair cute. I taught him well! ; ) Good girl daddy!
Today was the longest she has held him. She was examining every part of him. It was so adorable to watch.

Brother and sister snuggling.

Holding Vollens foot.

My neighbor Jenni and her daughter Addison came up to visit. They brought Sophie a book, so nice!!! Sophie just lit up when she saw Addison. We are lucky to have such great neighbors.

Morning update

He had his hearing screen done early this morning and he failed it. Which I am not really surprised about, I kind of had an idea he had some hearing problems. Anyway, his right ear was just fine, but his left ear was the one that failed. There still is a chance it is fine because there could still be fluid and gunk in the ear from being in the womb and if there is then the sound waves can't get through that, so we have a follow up appointment already set up for Friday the 8th at the new Boys Town Clinic at 144th. He will be re-screened at that time and we may know more. I am just glad at this point that one ear passed.

The doctor came in and said since he is doing so well still off oxygen that we may be able to leave sooner than Friday. He even said a possibility of tomorrow and I said I would feel more comfortable if we waited just a little bit longer, he said he didn't want to rush me, but usually people are wanting to get out and back home. I said no, not me, I would rather be really, really sure that he is not going to slip back into needing it. So, as for now we said lets look at Thursday. The only problem is that was the day Vernon was going to go back to work. He still has Friday off, but was going to go in on Thursday. So, we will see what happens and Thursday wasn't set in stone anyway there is a good chance we could just wait until Friday still.

His bilirubin went down to 12 from 13 yesterday, so they don't need to recheck it anymore thank goodness because his poor heals have been poked so many times there is barely any room left to find a spot to do it. (I have got to get a picture of that!)

He is going to get circumcised as we speak. Poor thing. : (

Picts and Video

A birds eye view compliments of my personal photography assistant "Big V". Here you can actually see how tiny he really is. Some of the pictures make him look enormous (I know he is 8 lbs. and all, but he is just a tiny little thing). It's those chubby cheeks that make him look big.
Daddy and baby last night. Daddy is so sleepy and getting worn out, poor guy!

This morning baby V, bright-eyed and bushy-tailed.

He is really opening his eyes a lot more. They are so cute and are going to be bright blue (I can tell).

My little man.

His hairy back just like daddy. I love all the soft, fine hair on his back and shoulders. It is like silk and so fun to play with. I can't stop feeling it!

Maureen & Dave (family friends) stopped up with a gift for each of us. SO sweet, they got Sophie a new baby doll. She was just in heaven and LOVES her new baby. It has a pacifier too (her favorite!!!!) That was so thoughtful of them to think of Miss Sophie too.

This is the very first time I heard my baby cry. It was this morning when they took the oxygen tube out of his nose and ripped the adhesive off his cheeks. He did not like that one bit and actually cried. I grabbed my camera because that is seriously the first time I heard him make more that a little screech. He is such a good baby, very relaxed and calms himself down really quickly and self-soothes so easily. I am glad he is so relaxed and laid back. What a sweetheart.

Here till Friday

The doctor came for rounds this morning and said that since Vollen was having so many problems yesterday with staying off the oxygen completely and flipping back and forth from needing it and not needing it, that he would feel most comfortable having us stay until at least Friday. Which again, I am totally fine with since I don't want to go home with any feelings of is he okay or not really. BUT some good news is that he is still doing excellent today with staying off the oxygen he has been off still since 6:30am. So we are going on 16+ hours now in the clear.

The follow up ECHO that was done today showed the same results as the first time. Everything is perfect with his heart/lungs. So that is a relief that nothing had been missed and we are still in the clear as far as that is concerned.

We met with the genetic counselor and she went over the results of the chromosome test. It indicated that it did not come from Vernon or my family history genes, it was just a fluke in how the chromosomes split at conception and there was that extra third chromosome on #21. So, the chances of it happening again are only 1 to 2 percent.

I also had the hospital social worker come in and talk to me about how everything was going and make sure I was feeling okay and let me know more resources that are out there, etc... if I would need them. I told her we were just fine about everything and that I was a little down until I was able to be with my baby, now all thing are good!

We had a visit from the speech pathologist and she was awesome. She was very helpful and informative. She was ablt to answer a lot of questions I had about a lot of different things.

I have now changed my feeding schedule to be more of an on-demand feeding than waiting a rigid 3-4 hours between feedings. So, that was nice to get that changed. I am going to be talking with the lactation consultant tomorrow to ask some more follow up questions.

I have talked to a lot of different people about the pediatrician that I want Vollen to see and the genetic specialist that I had talked to yesterday had given me the name of a paediatric doctor that had quite a few Down Syndrome kids and he specializes in special needs kids. Everyone has had nothing but EXCELLENT things to say about this guy and so I am going to call him tomorrow and see if he will take Vollen on as his patient. He is also in Papillion and really close to us, so I am excited that so many different people have had such positive things to say about him.

I had a few visitors come up today it was nice to have someone here to talk to, the days can get a little long and I like when people stop in to chat for a minute, it made the day go faster and helped lift my spirits. Plus, they all enjoyed holding the baby!!!!

Quick Update

Vollen has been off oxygen all morning since 6:30 and it is 12:30, so far so good. I am not crossing my fingers though, he always seems to slip back into needing it. They also took the tube out of his nose and the adhesive off his cheeks which is so nice to at least have one last tube/wire to maneuver around when feeding and holding him. Plus, I told Vernon last night that when they had him on and off it why they just didn't take the tube out of his nose, because now that tube is just in the way of his breathing and blocking it. But they were saying if they had to put him back on they could just easily start it back up and not mess with putting it back on every time. This morning the neonatal nurse practitioner came into see him and said lets get that tube out of his nose since he is not on the oxygen and it is blocking some of his airway, I told her that is what I said last night!!!

He had his follow up ECHO done this morning, we should have the results back probably late afternoon.

His bilirubin is up a little more to 13 from 11 yesterday. I think the cut off they said they like it to be under is 10.

He has had some really good feedings where he eats for like 30 minutes straight, and then he has had a couple that have been kinda crappy where he only eats for like 5 minutes and then falls asleep and won't wake back up to eat. But he when he does eat he is still doing really good with the sucking and swallowing parts though.

We finally have a meeting time set up with the genetic counselor. It will be today at 2:00pm. So Vernon will be able to be back here and we can both be here to talk to her.

I will update again later this afternoon.

Baby V

Wanted to let you know some new information from today. The last update you read was that he was off oxygen. Well, shortly after I wrote that, he actually had to be put back on that puff of air. He was on it all day long. They did have to up it a little bit (100 ml) during the day, but have slowly dropped it back down through out the day (50 ml and then 25 ml) and actually just right now the nurse took him off completely again. So, we will see how he does off of it. (*Update: he just now had to have it turned on again, but it's at the lowest level 25 ml and they will try again later to take him off once he shows signs of doing well on the 25 for a while). It is frustrating that he is not able to go very long being completely off of it, even though it is just the tiniest amount, for some reason his body just needs that itty bitty kick of pure oxygen to get to all his organs and extremities.

The genetic specialist came by today to introduce herself and kind of quickly explain what all will be going on. She was very nice and had a lot of information for me. She was also very excited that Vollen didn't have any heart problems at all, because such a high percentage of Down Syndrome kids do. She said that over her many years of experience in this field that Vollen is starting off with such positive news, not having a lot of the physical problems a lot of other babies have to deal with on top of the developmental delays to come. So, that made us feel good that he is off to a good start.

We will be meeting with the genetic counselor tomorrow to go over Vollen's chromosome test and talk about Down Syndrome in general. I am sure my brain will be on overload from all the info. to go over and take in.

Vernon and I wanted to let everyone know that we don't want people to feel uncomfortable in regard to the diagnosis or about seeing Vollen. We are completely comfortable talking about it and having visitors come see him. We are very positive about everything and actually excited about this challenge given to us. We are going to do everything we can to set him up for the most success he can possibly have. We are treating him as any normal baby and hope that everyone else is able to also! There is no need for anyone to feel any uncomfortableness about our situation, which is sometimes easier said than done, we know, but being around him makes it easier to bond with him and see that he is just a normal baby that needs lots of love!

Pictures and Videos

Sophie getting to see Vollen for the first time since he was born.
She loved all the baby bears on his blankets and bedding.

She was measuring her height on a growth chart in my room.

Waiting patiently to hold her brother.

She loved touching all his little parts.

She liked holding him so much that she didn't want to give him back.

Brother & Sister

At first she had some difficulty remembering not to touch his soft spot.

Baby Vollen.

He was getting a bath last night.

This cardboard cutout is outside my room. The first time Sophie saw it she looked over and said, "Hi Bigbird, Hi Elmo" and waved to them and went in my room. So matter of fact and like it was no big deal. I laugh everytime I see that cardboard and think of how Sophie reacted.

This morning Sophie waiting to hold him.

Sophie holding her brother.

Morning Updates

Vollen's doctor just stopped by to check on him. They are going to wait now to release us until at least Tuesday since he had to go back on that puff of oxygen. Even though this morning he is off of it again and doing just fine. It was on so low that the nurse barely had to even turn the dial more than a millimeter or two. She wants him to be off of it completely for 48 to 72 hours before we are released home. I am actually fine with this because there is no way I would know what his oxygen levels are at home and if he is low, so I would rather be safe than sorry and go home too soon. I think it will be stressful enough going home with him and best not to be worrying about anything more that I already will be having a new baby at home.

She checked his umbilical cord and it is already looking a lot better. She thinks they may have clipped it too low or the clamp was too low and irritating it a bit, but there is no infection.

His bilirubin number was just above the cut off for being a little high, but it's not so high that he even needs to be on the light therapy. He is just a tinge orangish, but not bad at all.

That is about all the new updates I have so far.

Sophie was able to come up again this morning and hold her baby brother. She was so excited she was sitting on the bed wiggling her little feet in anticipation. Then he held onto her finger with his hand. It was precious. I will post picts and video here in a moment.

A couple bumps in the road

It was so nice today to have him in the same room as me! We got a lot of bonding time in today. He is still eating like a champ. It helps though when Vernon sits with my and strokes his cheek. I only have two hands and they are full holding other things and little mister likes to fall asleep while eating quite often, so it helps so much when Vernon talks to him and keeps him awake for me, then his belly gets really full before he passes out.

When they brought him up today from NICU his IV in his foot started coming out and bleeding, so they were going to take it all the way out and put it back in, but then they decided to call the dr. first and see if they could just leave it out and see how he did on his blood sugar off the iv sugar water drip. He had to get his blood sugar taken for about 4-5 feeding (which means he had to be pricked 4-5 times in his heel). Poor thing, I will take a picture of it and post it. It looks awful and painful, but he doesn't seem to mind, he doesn't even really wince at all the pokes. He has done so good with his readings and doesn't need to be back on it!

I had been noticing that his belly button has looked awful big and bulky and red. The nurse called the pediatric nurse practitioner up to look at it. She said it did look odd and it could possibly be infected, so she is going to have the dr. look at it in the morning.

He also was dipping down into a little bit of lower levels of oxygen and so they put him back on for the night, but it is at .01% which is the lowest it can go, but that bumped his numbers back up to 100% so it is hardly anything, but is working.

Other than those couple of things he is doing fabulous still.
We didn't get a visit from the genetic specialist today, so hopefully she will come see us tomorrow.

Roomies

We are both settled in our room TOGETHER!!! It is room 306 on the 3rd floor at Bergan. You are welcome to come visit now that we are in one place. Again, we should be discharged on Monday. He is sleeping soundly after eating really well at 11.

More good news!

Things just keep looking up and up. I was told this morning when I went down to feed him that the doctor is so pleased with how he has been doing that he no longer needs to be in the NICU. They are going to transfer him up to my floor on Peds and then move me into his room to stay with him!!! It will be so nice to finally have us together in the same room. They are still going to keep the monitors on him so they can watch everything at the nurse's station, which I feel better about anyway that there is extra 'eyes' on him. This also means that now Sophie will be able to see him, she is really excited.

His doctor just called me to update me on the latest findings she has tested. She said she was able to look in his eyes and see that he does not have cataracts, which we are elated about. Vernon was so worried about that. She said we are probably looking at getting discharged on Monday and she is going to do one more ECHO just to make sure everything is good before we leave for home. We are so excited about all of this good news and wanted to share it with everyone. If I hear anything else, I will post again later.

Here are some pictures from yesterday.

Sorry I didn't have time to mess with turning this close-up picture of him. I just wanted to get this up asap.

His little ear.

The O.T. testing his muscle tone and flexibility. He was mad.

More testing.

Testing the startle reflex (which he did really well on).

Me finally getting to hold my baby.

Me very happy to finally be with him.

Daddy and baby.

The three of us in the NICU.

Today was a good day

Today I was released from Lakeside at 11:00am. Vernon and I went straight over to see Vollen at Bergan. I had a pretty rough morning and wanted to hold & feed my baby and was really feeling down. It was so weird being the only room without a baby crying in it and to leave the hospital without a baby. But as soon as I got my hands on him all was good again.

He was off of his oxygen tubes and looking really good and calm and peaceful with great coloring. We got great news from Vollen's main doctor here that his pulmonary hypertension is pretty much gone already (that is why they could take him off oxygen). So, he will most likely be discharged from the hospital without any problems with his heart & lungs at all! The tube that needed to close going from the heart to the lungs has closed, it just needs to structurally (or securely) close up, which it is in the process of doing and could take up to a week to fully heal, but once it is closed it is closed and that is the end of the pulmonary hypertension.

He has a bit of the rapid breathing still, but it is few and far between and it doesn't raise his CO2 levels. He is able to stop it pretty quickly and remain constant and steady with his breathing. They also said that the rapid breathing will completely cease in up to two weeks.

It helped me so much to be with him today and finally feeling like I have a baby, since I hadn't seen him for so long. I was able to start nursing him and he did so good. The night he was born I had put him on as soon as I could and he did great then also. Today he picked it right back up like he knew just what to do. He latched on really well, and was sucking hard and swallowing like a champ. So, they gave me a room to stay in on the floor above him, so I can be right here to feed him on a regular schedule. I like that I am in the same hospital as him again.

When we had left to go eat lunch and say hi to Sophie, they had given him all the colostrum I had pumped up until now, in one sitting and he was still hungry! So, they gave him a little formula also (which he didn't like as much). He his eating really well and should be gaining back some of the weight he lost. He was down to about 8 lbs. 1 oz.

Now all they are waiting on to release him from the hospital is for him to get on an established feeding pattern with the breast milk and be gaining some weight back. They said it is going to be totally up to him and how his body reacts, but they didn't think it would be any longer than 2 to 3 days. At the rate he is going with eating and how good he is at it, I am sure it won't be any longer than that!

The hospital's speech pathologist and occupational therapist came by to talk to us today a little bit about having a baby with Down Syndrome. They were both really informative and helpful. It was SOOOOOOO nice to finally be getting some questions answered and just told where we go from here and what all is out there and available. We are so thankful that there are so many resources out there for children with special needs. We had no idea all these services were out there! It really put our minds at ease that we are not alone in this process and that help is everywhere and so easily accessible for our little boy.

Tomorrow (well, actually today it is after 12) we are going to be meeting with the genetics specialist and they are going to go into more detail about what all Down Syndrome entails and give us a lot more details. We were also told that we will be seeing a counselor to talk about all of this, which I think it great and they do for all parents that have a special needs baby.

Today was a good day and we are feeling much better about everything.

As for me, I am healing pretty good, even though I am not technically supposed to be out of the hospital yet, I am trying to take it really easy and slow. I feel like this section was a little easier to recover from. I still have a slight cough from having a cold earlier in the week and it is sure torture on my wound. I have to hold and support the muscles under the stitches every time I cough, so I don't rip or tear anything inside or out. It is annoying and hopefully will be gone soon.

Sophie is not allowed to be in the NICU due to it still being rhino virus season. They won't let little ones in under 6, but they did tell us tonight that we would be able to take Vollen over by the window and she could look in at him, so we might try and do that soon. She sure talks about her little brother a lot and wants to see him and hold him. Today my mom showed me a video of her singing a song to mommy and baby Vollen into her karaoke toy with only a diaper on. It is really cute and I will post it on the blog as soon as I get my mom's cord to go from her camera to my computer!

We wanted to again thank everyone for all of your calls, e-mails, facebook messages, visits, etc... everyone has been so understanding and wonderful. We want to let you know that although we are not able to talk with each one of you individually and answer every single call and e-mail, that we do SEE each and every one and we know you understand that there are just not enough hours in the days right now to give everyone the responses back that they deserve. This blog is the best way that we can communicate with everyone what is going on and not be repeating the same information over and over again to every person. Even then, I usually don't get a chance to even sit down and write the newest updates until this hour of the night (or morning). But we feel it is so important to keep everyone up to speed as to what is going on. I just wish I could do it more often. Maybe, since things have settled a bit and there is no more moving for a while, there may be a little bit more time to squeeze in an update earlier in the day. I will try my hardest, but sometimes snuggling with my little one comes before any updates!!! But thank you from the bottom of our hearts for all of your well wishes and beautiful messages we really, really appreciate your thoughts and prayers for our family. We feel very loved and blessed that we have such great family and friends that care about us so much.

Update

Vernon was able to go spend a little time with our little guy down at Bergan. He got some cute picts. and video. Here is what we know so far from the results of the ECHO: He has what is called Persistent Pulmonary Hypertension of the Newborn - which in short is high pressure in the lung blood vessels, which is preventing blood flow to the lungs. The restricted blood flow limits the body's ability to deliver oxygen and nutrients to the tissues and get rid of carbon dioxide, acid and waste products in the blood. We really don't know much at this point and feel like we are not getting a lot of answers. It is all kind of just unknown right now. He will be staying at Bergan for at least 2-3 days and so I should be released to go home in the morning and then Vernon and I will be able to go down to Bergan and be with Vollen together. We have a lot of unanswered questions and really need to talk to the main doctor that is caring for Vollen and see what the plan is. We are trying to stay optimistic, but we just don't know what is going on fully at this point, hopefully tomorrow will bring some answers.

Pictures from this afternoon when Vernon went to visit.

Big V & little v

Vollen's Name

How we got Vollen’s name:
Vernon and I were at his apartment downtown just hanging out and listening to music and talking one night. This was about 2 months after we started dating. We got to talking about kids, our future, etc…….. Vernon had always thought about naming a kid after one of his favorite musicians Andreas Vollenwieder http://en.wikipedia.org/wiki/Andreas_Vollenweider. Vernon has just about every cd that Andreas put out.He asked me if I liked the name Andreas. I said NO! Then, he said what about Vollen.? At first I didn’t really like it, because it was so different and unique, but the more I heard it and thought about it and the more Vernon played me his music the more I liked the name. So, we then did decide that we would name our first born son Vollen. I like a lot now because it is so different, but not too crazy and we made it up, so no one has it! I had e-mailed Andreas to tell him that we were naming our first baby boy after him. Here is what he wrote back:
Dear Casie, thank you for your friendly note and for sharing your story with me! Naming a child is always very difficult, since under normal circumstances you meet the baby much later ;-) . I waited with all my three children until they were here and we had a chance to first get to know each other a bit for a day or two. Then suddenly the right name appears. I think it is far too important to decide in a rush. But of course I am honored by your idea...;-)
We are sooooo terribly sorry for not coming to the Midwest this time. It just didn’t work out with the schedule that our booking agency had put together for this time. We have already complained and were promised, that our next tour (within the next 12 month) will include several dates in your area.
Wishing you all the best with and for your baby, hoping to see you at one of the concerts in your neighborhood.
Warm regardsAndreas Vollenweider
That is how we came up with Vollen’s first name. As for his middle name, Van, this is a family name on Vernon’s side. His mother’s maiden name is Van Ackeren and his maternal grandfather’s first name was Leonard, but his nickname that everyone called him was ‘Van’ due to his last name.
So, that is how our little boy got his names.

Our beautiful baby boy

I wanted to share an e-mail that Vernon had sent out to one of his friends. It sums up very nicely how we both feel about this unexpected situation:

Thank you for your response, thoughts and prayers. Reflecting on my life so far, I can immediately recollect dozens of experiences that God has used to help me to prepare for this specific road ahead. Casie and I are fine with the diagnosis-we feel privileged that we have been selected to take on this challenge and that God trusts us enough to care for this child. We would rather be the parents of a Down's child than, say, an 18 year old single mother who may not have the resources to provide for the child or another couple who rejects their child because of this diagnosis. Whether Vollen is with us for only a few days or 56 years, I am confident that our life will be more fulfilling and rewarding because of this experience and with his presence in our lives. He is a gift to us greater than any other.

Another one of his friends had written us this nice story we also wanted to share: By: Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this. When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice Holland has windmills and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy. and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away because the loss of that dream is a very, very significant loss, but if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. ©1987 by Emily Perl Kingsley. All rights reserved

Here is Vollen this morning before he went to Bergan. I got to spend a little time alone with him before they took him.
I miss holding my new baby and this whole experience is so different than our first.

In total I don't think Vernon and I have held him more than an hour each. He was in the NICU overnight on some oxygen and monitors for his lungs and heart.

He is resting peacefully at Bergan and had the EKG and ultrasound done on his heart. We have no results as of yet. Vernon went down there to be with him and try to get some skin on skin and snuggle time in with him. He will have to stay there overnight and depending on the results he could be released back here tomorrow and then we would be here a couple more days. Otherwise, if he has to stay at Bergan, then I will be released tomorrow and we can go visit him there.

Here he is as the ambulance/nurse techs. were transporting him down to Bergan.

One of the nurses was shielding his eyes from the bright lights an he was opening them. I haven't even seen his eyes open for more than a couple of seconds.

We are praying that everything turns out good with the results, but he still has rapid breathing and they need to get that all figured out. I will update as soon as I know anything.

Thanks again for all of your thoughts, prayers, calls, and e-mails for our baby boy. We know that is it difficult for people to know what to say. It is hard for us too, but we want to let everyone know that we understand and that it will hopefully get easier for everyone to talk openly about. This is all new to all of us and we will all get through it one day at a time together!

All our love, The Schlueters