Buddy Walk

Yesterday was our first Buddy Walk. It was really a short walk as an excuse to get people together. I loved being in a place where there so many people with DS and those that loved them. I've talked to a few family members but this outpouring support for the whole community was great to see.  I almost cried a few times when I saw the following shirts and when I really thought about what was going on there.

Love doesn't count chromosomes
Friends don't count chromosomes
My daughter rocks her extra chromosome

A few people talked to us and were really nice. They gave me hope that Russell could lead a wonderful life. I know he can, I just have to overcome my initial thoughts and get the truth of what is possible for him ingrained in my head.

There were booths from a pediatric dentist to Young Life. The dentist said people with DS can have a lot of oral health problems. His daughter has DS too. YL has a ministry just for those with special needs. How great is that? The local group is at the high school nearby in Shoreline.

Next year, I think I'll get more involved, maybe volunteer and/or get more people to join us.

Russell Sure Loves His Mama

Matt calls Russell a Mama's boy. He gets upset if he hears my voice when i get home from work and I don't come see him. Matt has to work to get a smile and I get one all the time just because he is with his Mama. It is very cute. I love it. As I'm writing this, he is on my lap talking, laughing and smiling at me.

Russell is 14 pounds and doing great. He got some shots last week that made him a little grumpy for a couple of days...but who really likes getting shots?

The Last Month

I realized it has been a month since I last posted. All good news with the boys.

Russell is over 13 pounds! That's amazing considering all that has happened. We are cleared by the cardiologist until his birthday. My understanding is that as long as things go well we will only see him once a year for a few more years. Wonderland Development Center continues to come and evaluate and work with Russell.  They are very pleased with his progress.  He acts like he is holding his bottle, making lots of sounds that the speech therapist likes and is holding his head up really well. He continues to roll over and Matt thinks he will crawl soon! His oxygen levels are improving. We hope he will be completely off by December.

Travis knows all of the letters, just not in order.  I swear his favorite is "O." He likes to type it a lot. He also knows some numbers. He is still doing great with his little brother, sometimes he even points out when Russell's oxyen comes off.  Travis is really quite cute in the way he handles Russell.

By the way, in case you're interested, the Down Syndrome Buddy Walk is Sunday, October 5th at Seattle Center. It is for anyone who wants to raise awareness about DS. There are also other activities. More info can be found here: http://www.downsyndromecommunity.org/BuddyWalk.htm   Although it's a fundraiser, it's free to register.

Well-Child Checks

Yesterday, both boys had their regular checkups - Russell for 3 months and Travis for 2 years.

Russell is 11+ pounds! He is also 24 inches long.

Travis is 31+ pounds and 37.5 inches tall!

The doc is very happy with both of them.

The occupational therapist has been coming the last couple of weeks to evaluate and work with Russell.  She is also very happy with his progress. He is eating a lot more and very active.

Travis Counts to 4 and Other Happenings

Today, Travis asked for some of Matt's chex cereal. He loves chex. Matt said "1,' then Travis tried to bargain with him and said "2" then "3" then "4" and took 4 pieces of chex out of Matt's bowl! Travis has said 1, 2, and 3 before but never together. Apparently, if it means him getting more food, he can count.  

This past Tuesday was Travis' birthday and since Matt's is so close (today), we did a joint party. We had friends and family come over for a great dinner, presents and cake. Mom made some cakes in the shape of Legos. They were really cute.

Last Sunday, my cousins Kim and Liz and Aunt Judi held a meet-and-greet so some of my Portland family could meet Russell. They did a beautiful job and it was a lot of fun. THANK YOU!

Monday, we go to the pediatrician for both boys.

Medicine Free!

Russell's cardiologist is happy with how he is doing. Dr. Hesslein stopped the lasix so we are medicine free! Russell is still on oxygen and probably will be for awhile but we don't know how long for sure. We go back in six weeks.

Evaluations

Thursday we had the early intervention group, Wonderland, come to the house and evaluate Russell for different areas of development. It is one the best things you can do for a kid that you suspect will have developmental delays. I'm not entirely sure how exactly they help develop a baby except apparently they play a lot so we not supposed to get mad when it looks like they aren't doing anything (read it in a book). Russell is at a less than one month old developmentally. We aren't supposed to take that information to heart because he is so young.  It's hard to know what is a true delay and what is normal for a kid his age, especially one recovering from heart surgery.

For example, he didn't always follow the object in front of him (except his bottle, of course) very well. It would take him a second to catch up to the object. The pediatrician said it was normal for his age but the therapists didn't give him points for it. (He was scored with a 1 or 0 on every category).

Within a hour of the two therapists leaving, Wonderland called to make an appointment.  They are coming on Monday with a speech pathologist and our Family Resource Coordinator.  Apparently, Russell is not "cooing" enough, at least that's why we think a speech pathologist is coming to see a 2 1/2 month old. Different therapists and the FRC will come to house once a week for a hour.  I will not be at the appointments. I have mixed feelings about it. I would like to be at every appointment he ever has but really, coming home for an hour appointment every week is not practical.  I would lose at least 3 hours of work. I am thinking about asking them to come in the afternoon once I get home.  If not, Matt can teach me the techniques to help Russell.

Friday we had a pediatrician appointment. Russell is 10 pounds 1 ounce! The pediatrician is very happy with how he is doing. He got a few shots and took them like a man. He only cried a little. :)

Both Wonderland and the pediatrician commented on how much energy he has. It is so great that he finally has energy and is moving around a lot.

  

A Little Behind

We went to the cardiologist this past Tuesday,  Russell now weighs 9.5 pounds! That means he gained about 10 ounces in 6 days. I think he is still a little behind for other babies his age but it is progress. We tried taking him off oxygen at the appointment but his numbers were still low. Russell doesn't have fluid in his chest anymore! He has a little residual leak in his heart but nothing to worry about.  Even if the small hole doesn't close, it is so small that it won't be a problem.

Russell is doing so much better since surgery.  He has a lot of energy and he can roll over. He rolled from his belly to his back at 1 month and now at 2 he can roll from back to his belly!

We have pediatrician appointment next Friday and a cardiology appointment the following Monday.

Travis is loving his baby brother. He is talking a lot, naming things that I didn't even know he knew. He has been able to spend a lot of time with my parents lately and he has had so much fun. Every morning he says, "Papa, Mama call." He manages to get my phone and calls my Mom all by himself.  Travis has also called my Father-in-Law using Matt's phone a couple of times. Yesterday he got to play with the hose and got soaked.  When Matt and Travis came inside, Matt told him to go get a shirt and shorts and pants. He came back with a shirt. Four times Matt sent Travis back to get shorts or pants. Four times Travis came out with a shirt.  Matt put each shirt on him.  Finally, Travis brought back a pair of pants.

As for me, I had a particularly hard week. There is just so many phone calls to make and appointments to go to. Then, there is work which has been hard as well. Matt continues to be strong enough to take care of me and the kids. Friday night my parents babysat the kids so Matt and I could go out. We went to a favorite restaurant in Ballard then walked around Green Lake. It was nice to be out without the kids. Yesterday, I got to hang out with my old roommate, Lindsey. It was really fun to see her again. Then Kit and Sally came over. (Kit is the guy holding Russell in the picture on Facebook). Overall, a great weekend and I'm feeling much better.

Video Take 2

The link to the video was linked to word "video" in the last posting. Here is the full link:

http://www.turtlebayandbeyond.org/2014/abortion/world-down-syndrome-day-at-un/

Video

My friend, Chris, sent this video to me.  It's very good, it was exactly what I needed to hear and it made me cry.

Finding God in a Mani/Pedi

A strange title, yes, but stay with me.

Yesterday, I had a "spa" day. Thanks to Mom and Mary, I got a much needed facial, massage, a manicure and a pedicure. It was wonderful. I was talking to the person doing my nails about Russell. She said to me that there is so many things in the human body that have to come together just right to make a "normal" person. I don't know if she believes in God but it confirmed for me that yes, I do. I don't believe for everything that has to come together "perfectly," and even when it doesn't come together "perfectly," can happen by accident. I put perfectly in quotes because there are different definitions of perfect. To me, Russell is perfect as my little baby. Society says otherwise due to his Down Syndrome. I'm trying to not let society sway me because I believe he is how God created him and God doesn't make mistakes.

It surprises me when people say that because they are scientists they can't believe in God. I think, of all people, how could they not? One day I was looking at my fingerprint at work (a little strange, I know) and  I got distracted thinking how amazing it was that everyone has an unique one. Plus, everyone has unique DNA but those that are blood related have similar DNA.  If a Master Creator didn't exist, how could that be? I don't believe it is random.

On a somewhat related subject, I think it would be rewarding and tough to be a hospital chaplain. Although I think, technically, Catholic women can't be "chaplains" per se but can be "ministers" but not the way most people think of the word minister. From my days working for the Archdiocese, I think Chaplains are ordained positions. I can't find a reliable source on the internet to confirm this. Regardless, I think it would be tough, especially at Children's Hospital where young, innocent children die often. It would be hard to console families, believers or not, and be able to give them answers as to why it happened. I don't know and I don't pretend to know.

Now, why did I write this post? You were probably looking for an update on Russell but it is not about him. That's why the blog is called "The Small Family" and not "All About Russell." Once the initial shock and overwhelmingness (no, that's not a real word but can't think of a real one) of Russell's health is over, I wanted to make sure that I included the rest of the family more.  I have tried to interweave them throughout the posts although they have been focused on Russell. 

And, I'm pretty sure that not everyone that reads this blog believes in God. I didn't write it to make a case for Him but as a way to get everything I've been thinking about out of my head. One of the great things about this blog is that I've been able to think about and come to some realizations about my feelings and beliefs about Russell's health and life in general.

Whether or not I am scientifically or theologically right, I still standby what I wrote. Because I'm married to an attorney, I have to put in the disclaimer that my views do not necessarily reflect the views of the Catholic Church or my husband. 

Discharged!

Russell was discharged yesterday.  He is still on oxygen. Each time they tried taking him off he did a little better but not good enough. There is hope that Russell will only be on it for another week but we don't know. We have a cardiology appointment next Tuesday and they can test the oxygen levels then.

Maybe Tomorrow

Russell had another chest x-ray today.  He still has some fluid but it is getting better. They also did an EKG and an echo.  EKG looked good, haven't heard about the Echo yet. The surgeon, Dr. Nuri came by while I was out and said the post-op echo (not today's) showed the pressure in his lungs was normal. He was also happily surprised by Russell's eating. There is talk that we might go home tomorrow.  I'm trying not to get my hopes up. Russell may go home with oxygen but ideally not.

Although I wanted to thank Dr. Nuri for taking care of my baby, it was worth the trip out.  I got to meet with a good friend, Chris, who I haven't seen in forever. It was so nice to see him again. His wife and I are also good friends and got to see her a few weeks ago.

I'm pretty relaxed right now.  I pass the time by cross stitching and reading a book on Down Syndrome.

We're Out of the ICU!

Russell is doing great so he is out of the ICU! Matt is excited because we can eat in the room now (besides the fact that Russell is getting better). He is eating pretty good from the bottle.  Sometimes babies with breathing tubes reject the bottle for awhile but Russell took it no problem. He is certainly his father's son. :)

Travis got to come yesterday and see "baby." He was excited to see us but I think most excited to see baby. It was good to see Travis.

Chest x-rays are looking good.  He still has some fluid but it is getting better.

All of Russell's tubes and lines are out except oxygen and a line in his foot for blood draws.  He is on half a liter of oxygen which is less than yesterday so that is progress.

I think that is the full update.

I GOT TO HOLD MY BABY!

After 53 1/2 hours of waiting and looking at him, I finally got to hold Russell.  Matt is taking a turn and fed him a little bit.

Breathing on his Own!

They took out the breathing tube and everything else besides an IV and the feeding tube.  Russell has sensors on him and is on oxygen (1 liter as opposed to 1/16 of a liter at home) to make sure everything goes well. The oxygen will be tapered down eventually.

We're not allowed to stimulate Russell a.k.a. not talk or touch him. :( They want him relaxed and he is easily stimulated by touch or sound.

Last night's nurse said Russell is very strong.  When she went to move him, she only took one side of him out of the blankets at a time.  Otherwise, he would move all of his limbs and she couldn't wrangle all of them at the same time. She was also concerned that he would kick out his breathing tube.

Tubes and Lines

Russell is still doing good.  In fact they took out a chest tube and an artery line. They are hoping to take the breathing tube out in the morning, Then I should be able to hold him. If all goes well, we might leave the ICU on Monday or Tuesday and move to a regular floor. Matt's anxious to leave the ICU because we can't eat in the room. :)

Hospital Update

Russell is doing well. His oxygen levels drop once in awhile but the medical staff are not concerned. It is usually when they re-position him. So he is still on oxygen. They put a feeding tube in him which I hear they wouldn't do if they were concerned about his oxygen levels. They've been taking x-rays and took an ultrasound. Russell has a little fluid built-up on his right side, but again, they are not worried. As long as the staff aren't worried, I'll try not to be.

I'm actually doing pretty well. I have been sleeping most of the morning and last night which has been great. Matt has gotten some sleep as well.

The staff here are great.  I talked to a guy at breakfast that gave me an insider tip - if you buy a cafeteria card, you save money on the food! He agreed the staff are great and if I need something the other parents are really great too.

Sometimes I just go over to look at Russell.  He is adorable even with all of the wires and tubes.

Yesterday, we were visited by our good friends Kit and Sally.  Then Jim and Becky brought us dinner after dropping off Travis and their kids at our house with my parents. It was so great to have them take care of Travis so I didn't have to worry about him during the surgery. I hear Travis had a great time.

I continue to hear from people who are continuing to pray for us. It makes me feel good to find messages on Facebook or via my Mom. Thank you!

Today

Today started at 4 a.m. I woke up in a panic because my alarm did not go off at 12 like it was supposed to. Russell couldn't have formula after 1:30 a.m. so I wanted to makes sure he ate.  I didn't really need to worry since I knew my parents and Matt were on top of things, but it's my job as a Mom to worry about making sure my son gets the food he needs. I finally rolled out of bed about 4:30 and got ready.  I woke my parents to say goodbye to Russell and give kisses.  We left about 5:10 which was ridiculous (I knew it was) since it took us 20 minutes to get to the hospital, but I wanted to make sure we were checked-in by 6:15 as directed. Nothing was going stop this heart surgery if I had anything to do with it.

We waited for awhile in the waiting room until they called us about 7:30. Chip and Mary (Matt's parents) got to come back and give kisses. Then we met a few more people, saw the surgeon and hugged and kissed him one last time.  I made Matt hand him over, I wasn't going to hand over my baby boy.  I cried but was fine before we got to the waiting room.

I didn't allow any medical talk or any other talk that wasn't 100% positive.  It was the only way to possibly keep me from crying, which I didn't do at all while we were waiting. Pretty impressive, if I do say so myself. However, every time the pager went off for us to call I got a little nervous. Every update was positive.

Finally, we got the call to meet with the surgeon.  When we arrived he was smiling.  He asked how we were and I said, "You're smiling so I'm good." Everything went well.  Matt asked the medical questions and I asked the "Mom" questions: when can I see him (about 30 minutes) and when can I hold him (probably tomorrow but I can hold his hand now).

My parents, Matt and I (Chip and Mary left for a bit once he was out of surgery) got to visit him in the ICU. They took off after a minutes, we got the orientation and Matt is now somewhat asleep in the chair.  He must be tired if he is napping and doing so in a chair.

Russell is doing well.  He has tubes and wires coming out all over him but it is not as traumatic to see it as I thought it would be. The staff and Matt did a good job of preparing me for it.

Russell has woken up a bit then fallen back to sleep pretty quick so I've been able to see his eyes. I loved it.

I think I'm going to try to sleep a bit.

Yesterday

Now that things have calmed down, I thought I would give a little debrief.

Yesterday was multiple clinic appointments, labs, tests and meeting a myriad of medical staff. We were at the hospital from 9-4:30 so it was a long day but well worth it.  I only cried once and that is when the surgeon, Dr. Nuri, left the room for a minute.  I pulled myself together before he got back.  I started to get close again as he was talking but I held it together.

While Dr. Nuri was explaining the details of the heart and surgery, I couldn't help but be reaffirmed that we must be created by God. The heart, along with the rest of the body, is very intricate and works together so well.  That can't happen by accident. Now, we have a lot of medicine, surgeries, doctors and nurses to fix a lot of the problems when things don't work together.  I didn't get to really dwell on that as I was trying to pay attention.

We went home to my parents, a wonderful meal and a happy Travis. He was excited to see us and even asked where Russell was when he didn't come in with me (he was with Matt).  That's significant because he has only said "Russell" a couple of times. Usually, it is "baby."

All night, I was emotionally unstable but held it together most of the time.  I finished packing, hung out with Travis and relaxed with Russell. Jim came to pick up Travis for the night and Travis got really excited.  Jim wasn't even out of the truck when Travis was saying bye to everyone. That made me happy.

I fell asleep holding Russell then went to bed and passed out within minutes.

HE IS OK!

We get to see him soon!

Surgery - Part II

Just got a page that everything went as expected. In about 30 minutes they should be moving Russell to ICU and then about 45 minutes later we will get to see him. We will talk to the surgeon while he is being moved.

Surgery Day - Part I

I have been pretty "emotionally unstable' the last couple of days.  I managed to get through a full day of appointments without crying in front of staff.  I only actually cried a couple of times last night and this morning, not too bad I think.  I did cry when they took him from us.

They took Russell about 7:30 and we got a page a few minutes ago that said he was going to the OR. They said everything was going well.

Thank you for all of your prayers and support, it's been very helpful for me.

I'll update again later as I can.

Surgery Time

We finally have a time for surgery - 7:30 AM! We have to be there at 6:15 AM! The good news is that we're the first surgery of the day so we can get it over with.  It is supposed to be 3 hours. Dr. Nuri (not Murray) is the surgeon. Tomorrow is full of appointments with nurses and doctors. I'll update when I can.

Russell's Baptism

Russell was baptized yesterday.  It was beautiful. Fr. Cleaveland did a great job. Several of our family and friends were there. It was so good to have people around that love us (and we love them!) and not obsess about Russell's health and upcoming surgery.

Thanks to our family photographer, Becky, for taking the wonderful pictures!

Better Than a Hallelujah

I heard a part of "Better Than a Hallelujah" by Amy Grant the other night on the way home. For those who don't know it here are the lyrics:

God loves a lulluby

In a mother's tears in the dead of night

Better than a Hallelujah sometimes

God loves the drunkard's cry

The soldier's plea not to let him die

Better than a Hallelujah sometimes

We pour out our miseries

God just hears a melody

Beautiful, the mess we are

The honest cries of breaking hearts

Are better than a Hallelujah

The woman holding on for life

The dying man giving up the fight

Are better than a Hallelujah sometimes

The tears of shame for what's been done

The silence when the words won't come

Are better than a Hallelujah sometimes

We pour out our miseries

God just hears a melody

Beautiful the mess we are

The honest cries of breaking hearts

Are better than a Hallelujah

Better than a church bell ringing

Better than a choir singing out, singing out

We pour out out miseries

God just hears a melody

Beautiful, the mess we are

The honest cries of breaking hearts

Are better than a Hallelujah

The song is very beautiful.  I recommend listening to it. I was just going to give the first verse about the Mom's cry and the chorus but all the examples help me to realize that God is with me all the time. It helps me remember that I don't have to have it all "together" to come to God. He knows what is in my heart, what I'm worried about and what I need in that moment. I don't have to have the right words or prayers, I just come to Him and He hears me. In those times that I'm scared or just sad, I've remembered this song. I'll probably be singing this song a lot in the next week as surgery draws near.

I'm relieved to have a surgery date.  I'll find out the time on Wednesday when the nurse calls to give us feeding instructions. We'll have a pre-op appointment on Thursday. The person I talked to today is supposed to email a package of information and let me know what time the appointment is.  I believe the main doctor will be Dr. Murray.

I will be praying for Dr. Murray by name. I pray that he has the wisdom, skill and team to take good care of my baby.

(Better than a Hal

Surgery Date!

Surgery is next Friday, June 27th! I don't know what time or any details.  I'll keep you posted as I know more.

Cardiology Appointment

We had a cardiology appointment and even though I pretty much knew what Dr. Hesslein would say, it was all I could do to not cry. I didn't return to work after the appointment because I was feeling too emotional. I don't think I would have been productive.

Dr. Hesslein presented the case "unofficially" to surgeons yesterday and they all agreed the surgery needed to happen soon, as in within a month.  He explained exactly what would happen.  Russell would be away from us for 3-4 hours but actual surgery was only 1 hour.

Dr. Hesslein had the "official" conference with more surgeons today and called us afterwards. Again, the surgeons unanimously agreed it needed to be done.  In fact, there was a cancellation and it could happen next week.

It will be nice to get surgery behind us but I'm really scared.

Success

As I told a co-worker this past week about Russell, I realized, one reason I was so distraught the first week was that he may not have what I think is the successful life I want for my children: College degree, married with kids - what I have. Not that those who don't have a degree, married or have kids aren't successful and I wouldn't necessarily require a degree from my kids - it is just what I hope for. I told my co-worker that I just had to redefine success for Russell. He said Russell may still have what I imagined for him - we don't know.

Today as I thought about it, I remembered a talk I went to in college.  I don't remember for sure what the speech was about or who gave it but I remember he said there were two times the word "success" is used in the Bible. One of which is below:

This book of the law shall not depart out of your mouth; you shall meditate on it day and night, so that you may be careful to act in accordance with all that is written in it. For then you shall make your prosperous, and then you shall be successful. (Joshua 1:8).

If we can teach Russell to follow that verse and focus on God - that will be success.

Back to Work and Another Appointment

Today was my second day back to work and it was fine.  Not as dreadful as it could have been and a lot better than last time I came back from leave. People are glad I'm back and I drove right back in....by lunch yesterday I had scheduled two meetings. It's pretty slow still as projects are being handed back to me. I'm helping a co-worker get ready for her big seminars until my plate is full again.

More importantly...Russell gained enough weight to keep us out of the hospital! He gained 1 ounce (8 lbs, 6 ounces) since Monday, then he ate 2+ ounces at the doctor's office, so Dr. Matin (remember, Dr. Peterson is on vacation) weighed him again and he was 8-7. If Russell hadn't gained any weight since Monday we probably would have gone back to Swedish. She was borderline about calling the cardiologist when he was 8-6 but after the second weight check she was happy.  Dr. Matin said Russell "clinically" looked good - same as the other doctors. They are just not ok with the lack of weight gain. She was encouraged that he ate 5 ounces in one feeding last night...and kept it down. (He has only been eating 1-2 ounces at once).  He hasn't had that much in one feeding since. Dr. Matin did watch him eat part of his bottle so she saw that he eats well, he just isn't gaining weight. Next appointment is the cardiologist on Tuesday. Hopefully, Dr. Hesslein will have already presented the case to the surgeons and he can at least give us first impressions.  I assume the surgeons will talk about it and get back to him but maybe Dr. Hesslein can give us some indication of what will happen.

Today's Pediatrician Appt

Today's appointment with Dr. Peterson wasn't good.  Russell did not gain any weight since Friday and he is eating less. Dr. Peterson mentioned a feeding tube but we are not acting on it yet. He talked to Dr. Hesslein, the cardiologist, who is presenting Russell's case to the surgeons at Children's Hospital. I can't remember if it is next Tuesday or tomorrow but I think it is next week. I hope it is tomorrow so we can get the ball rolling and get this behind us. Dr. Peterson did say Russell looked good and the only problems seemed to be the eating (he is not eating close to what he was) and lack of weight gain.

We have an appointment with a different pediatrician (Dr. Peterson is gone for three weeks) on Thursday. This pediatrician, Dr. Matin is my doctor and delivered Russell and Travis so we trust her. We will reassess then.

Wednesday

With Travis, I remember being ready to go back to work.  I took 8 weeks off which was a little ridiculous because Matt was home too.  This time I planned to take 6 weeks off.  I'm heading back to work on Wednesday after only 5 weeks (I'm saving that last week for when Russell has his surgery).

I'm not ready to go back.  It will probably be good for me to get out of the house and focus on something else but I'm dreading it.  I have to call my manager and department director tomorrow to let them know that I will have a lot of doctor's appointments for Russell and I will probably be coming in early to make up the time. Then at next week's meeting, I will be telling the rest of the team.

So, for those of you who like the specific prayer requests:  Until tomorrow, my request is that Russell has gained a lot of weight so surgery won't be so scary (his doctor's appointment is at 11:20 a.m.).  After that, it is that going back to work won't be so dreadful and I'll have a good first day.

Really I Don't Cry All the Time...

So, I feel like I only post about me crying.  In reality, I'm doing so much better, especially in the last couple of weeks.  The first week, I cried practically non-stop.  My mom had to get up with me every three hours to feed Russell because I couldn't be alone without sobbing (thanks Mom!).  Then I would go back to bed and wake Matt up with my sobbing. So I know what crying all the time means.

With that said, I cried at church today.  I've already said how I hate crying but I hate crying in public even more. I was fine until they prayed for the sick about mid-Mass. Of course the next part of Mass is mostly quiet prayers with only the Priest talking. So, I left. First, I went to the cry room - who says the cry room is only for crying kids? Then I left and went outside.  I'm sure I wasn't bugging anybody with my sniffling but I didn't want to be there sniffling. Russell and I spent about the last quarter of Mass outside. Thankfully, it was pretty nice. I sat there and swayed to the little bit of songs I could hear.  I was trying to think of a hymn or other worship song that would express how I was feeling or what I needed to say to God/hear from Him. I could only think of a couple songs and none of them were right. Any suggestions? I knew there has to be 100 out there.

I promise I don't cry 24/7. :) In fact, I find joy in the middle of the night feeding Russell.  Yes, I said joy. Once I get over the, "please don't wake me up it is 4 in the morning" feeling, I get to hold and look at my precious infant while he has his bottle. How great is that?

By the way, a few people have said they can't figure out how to comment on the blog.  There should be a link at the bottom of each post that says "0 comments" If you click on the link I think it will open a box.  If you still can't figure it out or want to send a private message, you can always email me.  I don't want to put my email address on the internet but I bet you know someone who has it (or can get it).

Amazing

I'm amazed at how many/who is reading this blog. I started it at Becky's suggestion, which I didn't really think much of (sorry Becky!). But then I thought about it and it would be easier to keep my Oregon and Alabama families updated without having to call/email each time.  Ok, so my mom would probably be the one calling. So, I started one thinking that I wouldn't post often, but I'm at 20+ in about 4 weeks. Another amazing part is that I hear about someone new reading this almost everyday. Or they at least know about Russell and are praying for us. They usually thank me for writing when really I thank you for the support you've given me. I'm pretty sure there are people I've never met reading this, which is great, it just means more people are thinking and praying for us.

Someone sent me a sweet email this morning and said someday I would be the one encouraging someone else - I hope that is true because I would love to share my story if it helps. I think this will all be worth it if that happens.

Random Thoughts

Jim and Becky's friend also had a baby go through surgery (thankfully, their story has a happy ending).  I was able to email with her and she sent me a beautifully written journal entry about her story.  She had me from the beginning with the bible verse James 1:2-4 that starts, "Consider it pure joy, my brothers, when you meet trials of various kinds..." It was a verse that I knew from high school and college. As I continued reading her journal, it was like she was in my head!

I trust God that, whatever happens, has a plan for our lives. But it is easy to lose sight of that. My mom side is scared out of my mind and my Catholic side is relying on Him to get me through this.  It's the only way. 

I wonder what it will be like to kiss and hold my child for the last time before surgery, hoping and praying that it won't be the last. On one hand, I want to hold Russell 24/7 and soak up every second, just in case. On other the hand, it is unrealistic. I remember wanting to hold Travis 24/7 but this time seems more urgent and my time with Russell really might be short.

I think of the two Moms that I know that lost babies in the last few years. I don't know how they are putting one foot in front of the other, let alone raising other kids, holding jobs etc. I think of one of them that has a very strong faith and still has it.  When she lost her baby, I prayed that she wouldn't lose her faith as I imagined it would be very easy to do.  That's my prayer for me too, should the unthinkable happen, I would continue to have my faith in God.

I think of Travis and what I would say to him.  He LOVES his baby brother.  What if we don't come home with "baby." I think of the students in college religion classes.  We went around and said why we were taking the class.  A few were trying to figure out why a sibling/parent/someone else close to them was taken. They had so much pain and no faith in God.  One even called Him a very bad word that I don't think you are allowed to say even if you don't believe in Him. I don't want Travis to be that student.  I want to make sure we raise Travis to know that God exists and loves us and we don't know why things happen sometimes, we just have to have faith.

I pray we never have to have those conversations.

On a happier note, aren't these two so cute together?

Four week check

Today, we went to the pediatrician.  While everything was good or fine, it wasn't great.  Russell was awake and active. He did gain a couple of ounces since Monday  (he is now 8 pounds 5 ounces) but not enough to make everyone happy. We are going back on Monday morning for another weight check.  Dr. Peterson likes that we are tracking all of Russell's feedings. No changes to his care are recommended at this time.  We will evaluate again on Monday.

Expectations

Some of you may wonder if everyone knows about Russell's diagnosis why are we not putting it on Facebook.  It was at Matt's request, partly to avoid the negative labeling from random people on Facebook. I didn't really get what we he was saying until this morning.  It is something I've been thinking about but had different words for it. I don't want expectations for Russell to be lower than for others.

We've received various charts that show when "normal" kids reach certain milestones (sitting, crawling, walking etc) and when those with Down Syndrome reach them. I find the charts disheartening not only because my son may be slower to reach those milestones but also because other's expectations of Russell will be lower.

Now, I realize that Russell may not sit at 6 months like other children but I don't want myself, or anyone else, to just assume that it will be longer (average is 11 months for kids with DS).  Instead, I find myself wanting to prop him up in a boppy at 4 weeks which is a little ridiculous but you get the point - I'm extra driven to see him beat the traditional DS milestones. He has already rolled over twice so who is to say he won't sit at 6 months?

All this to say, we need to be realistic that he may not sit at 6 months but encourage him and believe that it could happen.

 Russell lounging in his frog pajamas

My curly haired boy

Children's Hospital Appointment

Yesterday was the much awaited Children's Hospital Appointment. It did not live up to my expectations. Everyone wanted us to go there and it is hard to get into.  Based on the materials we received in the mail and the build-up to it, I thought we would see a lot of different doctors and get life changing information.

We saw two doctors, one for about one minute, and they said he looks great! They gave us a packet of information with a list of therapists and more information about Downs.  It includes a list of when different exams need to be done to make sure the doctors don't miss anything.

Since Russell has other health issues (the heart and little weight gain that is probably related to the heart), they don't expect therapists to visit us for a few months.

They gave us a referral to an eye doctor because people with Downs often have eye problems and got a complete blood count blood draw done.  It is 100% normal according to the doctor who was nice enough to call.

We did learn that he needs a neck x-ray if he plays any contact sports or participates in the Special Olympics (although we're going for the real Olympics) and NO trampolines.

One doctor answer lot of questions and talked to us for over an hour. The appointment just wasn't what I was expecting.

We are supposed to go back in three months.

Time Machine

I asked Matt what this post should be called, he said time machine because I would like to have a time machine to take me to a week or two post-surgery.

Until one is invented, I'll have to live in the present (which is supposed to be good for you anyway).

I had a wonderful visit with a friend this morning.  Good way to start the day!

Then, we went to the cardiologist. Russell grew a little but not enough to make everyone happy.  We are going back in two weeks (the 17th) for a weight check and chest x-ray.  If things have not changed much by then, Dr. Hesslein will present Russell's case to the surgeons at Children's. That means surgery could be sooner rather than later, depending on scheduling and urgency. On one hand that would be great to get it over with, on the other, we would like him to be bigger. However, Dr. Hesslein said that Russell was big enough for surgery right now (he is only a little over 8 pounds).

Some fun news - Russell rolled over from his tummy to his back twice!

Travis is a great big brother.  He likes to inform us when Russell is crying and asks to kiss and hold him a lot.

Talks

I think the time has come for me to talk to those people that you all have offered to set me up with, particularly if they have a child that went through surgery. I'm just trying to figure out how to get through until post-surgery without crying every time "surgery" or "vsd" is brought up or any other random time I think about it.  I assume eventually Matt and I will have to make the decision on when exactly we will have surgery unless it's an emergency. So, Matt and I have to have these conversations but I can't without crying. 

I appreciate the encouragement that crying is ok.  At some point, though, I have to stop so I can take care of my family and make it through conversations without breaking down. Some moments are better than others.

I mentioned before adjusting to life with an oxygen tank is a little challenging.  We went to church yesterday and I suddenly felt on display.  We got a lot of attention for how cute and little Russell is. But I'm sure people were wondering why he was on oxygen. Plus, it is not as easy to carry around an oxygen tank.  I can't simply hold Russell and walk the short distance to the kitchen to get his bottle.  I either have to take the tank with me or lay him down first. 

Pediatrician Visit

We went to the pediatrician today.  Russell looks good and was alert at the appointment. Dr. Peterson was happy except Russell only gained .5 ounces since Tuesday.  That's really not good. I think he is supposed to gain an ounce a day. We are going to the cardiologist on Monday for a follow-up from the hospital. He'll be weighed then.  If Russell still hasn't gained weight, we may have to do a feeding tube.  We're supposed to go back to Dr. Peterson at then end of next week.

Adjusting

Yesterday morning was emotionally difficult and yesterday evening was logistically difficult.

I'm not sure why yesterday morning was so difficult.  Maybe because I just got of the hospital after five days with my newborn.  Maybe it was seeing my baby on an oxygen tank and realizing my life has completely changed. I'm trying to stay positive and see the opportunities and joys that will come.  Right now, I'm just adjusting to my new reality - doctor's appointments almost daily and carrying around an oxygen tank. Hopefully, we won't need the tank too long.  That means Russell is doing well. He does seem a little more awake now, besides just long enough to eat.

Last night we ran some errands and had to figure out how to take two kids to Target, one with an oxygen tank.  Maybe I'm focused on the oxygen tank too much like I was focused on his diagnosis at first. Once we got settled, we did ok at Target.                                                            

Then, I got home and tried to write this post.  It didn't go well. Before I knew it, I was in tears again. Not just a few tears, but a lot. Some may say it was because I just had a baby three weeks ago.  I think it's more than that. I think my new life is just overwhelming right now. Matt, and everyone else, say it is ok to cry.  I don't like crying, especially as often as I have been the last few days. I have done pretty well the last two weeks, except for a couple of short moments. Right now, I feel guilty for crying.  I wouldn't want Russell to ever feel like he was a burden on me and made me cry a lot.  It is not his fault and I wouldn't trade him for the world. My life may be a little more challenging now but he is mine.

Here are a couple of happy pictures:

Travis holding his baby brother's hand.

Every time I got a blanket to cover my feet, Travis would take it off me and put it on Russell.  He now has three blanks on him.

Home!

We're home! After 5 days in the hospital, it feels great. We were able to bring oxygen home for Russell.  His pediatrician will help determine when to take him off of it. We see him on Friday.  We see the cardiologist on Monday and have an appointment with Children's on Tuesday. I think he will be examined by a few specialists and we will get resource information at Children's.

Russell gained a couple more ounces to make him 8 pounds exactly (he was 7-7 when we got to the hospital)! Adding a few extra calories to every bottle is helping a lot. We have instructions on how to continue to give him more calories per bottle (more formula per bottle).

I know I said I didn't want any pictures of him on oxygen but since he is going to be on it for awhile, I couldn't just stop taking pictures.  Plus, he is too cute, oxygen tubes or not.

Relaxing in my hospital bassinet.  

Travis is also home! We were excited to see him and he was excited to see us. Most of all, he was excited to see his baby brother.  We have to teach him to be extra careful around the oxygen.

By the way, you can now "subscribe," which means you will get an email anytime I post (you may be able to change the frequency of the emails) instead of having to check back.  On the right side, put your email address in "follow by email" box.

Going Home Tomorrow!

We saw both the pediatrician and the cardiologist today.  The pediatrician agreed to let us take home oxygen since we see a difference in his alertness, feeding, skin color, strength and general health. Plus, it will put us at ease.  He doesn't need much.  He is currently on 1/16th liter.  He even did great on 1/32nd The cardiologist agreed that was fine. They both said that they weren't sure how much oxygen was helping versus just having the air flow. From our point, whatever works is great. We would go home today but because it is Memorial Day, we probably can't get the oxygen until tomorrow.

For those who know about the heart, the upper hole is a PFO which will probably be stitched up at the same time the VSD is fixed. The surgery is likely not to happen until 3-6 months unless he gets worse but everything looks as positive as it can with two holes in his heart.  The cardiologist confirmed what someone else told me, it will be open heart.  Not what I wanted to hear - it sounds really scary. But my faith in God will get me through the next few months - I just have to remind myself that He has a plan although I have no idea what it is.

As someone told me to, I am taking it one day, one step and one doctor's appointment at a time. Looking forward to going home, and staying home, tomorrow.

Day 4 evening & Day 5 morning

So, technically it is day 5 but we'll finish out yesterday:

Russell gained about 2 more ounces as of last night (May 25)! He is at 7 lbs 13 oz. We will probably be sent home today.  Matt and I won't leave without getting oxygen for Russell. Oxygen levels remain high and we want to keep it that way.

I had a minor moment of fear and tears for Russell's heart surgery last night.  It sounds so scary. Yes, I know it is best for him and he needs it but the scared Mom in me came out for a few minutes.  I think I'm allowed to be scared - my baby is having heart surgery. I'm not sure how I'll sleep the night before.  I guess I shouldn't worry about that and cross that bridge when I get to it. For now, I'm just enjoying holding and looking at him.

Russell was awake for about 30 minutes at 5:30 this morning so, of course, I couldn't sleep until he did.  I wanted to see those eyes.  Then he was still hungry, so he ate a total of 78 ml instead of the usual 58!

Now, we are just waiting for the doctors.

Day 4

So, apparently we've been here 4 days.  I don't even know anymore, it all blurs together.

The cardiologist said we could go home and we said no.  We want him on the oxygen, which they took him off of, and wanted another weight gain.  I don't want to go home just to come back, I would rather stay. His oxygen levels dropped between the 80s and low 90s.  We kept bringing it up and the cardiologist apparently wasn't concerned until it was under 85 for 15 minutes.  Before we were told they wanted it above 92.  The nurse got the pediatrician, who did not want to put Russell back on oxygen, but we talked him into it.  The numbers are great - usually 99 or 100 (100 is the highest it can go).  We were told we could take home oxygen for nighttime and a sensor to monitor it.  Since Russell sleeps most of the day, I think we want it for anytime he is sleeping.

We had a great visit with Becky, JT and Haley.  They brought everything for a sandwich "hospital picnic." It was so fun and a great break from hospital food and the monotony of the stay. Plus, I got my nails done! It felt so great.

Travis is off in Wenatchee with Grandma and Granddad Small.  I won't get him back until Friday! But as Mom pointed out, we can focus on Russell, do stuff around the house and not worry about him for the doctors appointment we are bound to go to this week. Still, I miss him already and it hasn't even been 24 hours!

I think that is everything so far today, I don't expect much else to happen today, except them trying to take Russell off oxygen again.

Day 3 Update

Russell's oxygen levels kept dropping so we finally talked the staff into putting him back on oxygen.  His levels immediately went up - amazing how that happens. :)

He gained some weight so we're happy about that - I think he still has a long ways to go.  They haven't given us an actual weight he has to meet before we get discharged.

Other than that, we've just been hanging out - Jim came for a little bit which was great, Travis was here for a while and Matt's parents, Chip and Mary, visited.

Thanks again, for all of your continued support, love and prayers - it helps keep me going and staying strong.

Love to all.

Day #3

There isn't much new to report and I don't think there will be much more all day.  The thyroid test came back normal which surprised me - both Matt and I have thyroid issues and it is common in people with Down Syndrome.  The salts were low which I don't totally understand what that means.  He is off oxygen and his numbers are the same as before the oxygen so we would like to see him put back on it but the doctors and nurses think he is fine.

Two doctors (today's pediatrician and today's cardiologist) mentioned surgery but did not commit to a time frame. I hear from a couple of nurses in the family that they like to wait until he is at least 10 pounds.  We estimate that will be a couple of months but we just don't know when/what will happen.  I think that is the hardest part for me. When will surgery be? What will happen? The cardiologist that we originally saw said it is relatively a pretty easy surgery, but there are always risks. He is so young and my baby.


We are basically playing the "wait and see" game.  I don't anticipate seeing anymore doctors today. I'll update the blog if anything new develops.

Day 2

Today (May 23), Russell had a repeat echo.  Not much has changed since the first one 11 days ago. Dr. Kraybill mentioned a hole in the upper part of the heart that I don't think was mentioned to us originally.  She said it would take at least four doses of digoxin (the new med started last night) before we saw much improvement.  Dose four will be tomorrow morning.

They also took some blood today.  Mainly to test thyroid levels since that is a common problem in people with Down Syndrome.  Plus, both Matt and I have thyroid issues so it is good to check.

Russell is on a lower dose of oxygen.  They are hoping to wean him off since that is one of the conditions to go home - off oxygen plus weight gain.  Sounds like we could possibly take him home with oxygen for the nighttime if needed.

Best case scenario, we go home Monday.

On the religion side, a couple of people asked if we had a religious background, we told them Catholic and suddenly a priest appeared to give a blessing.  I really appreciated it, especially since they also have a chaplain who we met earlier as well. I emailed our parish to find out about baptism and if we needed to expedite it to make sure he is baptized prior to surgery.  They called within a hour to say Father Cleaveland could come tonight or be available after Masses on Sunday.  I explained we didn't need it right away but wanted to know options.  Father then called and said that we would get the baptism done and worry about the details later. I thought that was great of him to personally call and reassure me that Russell would get baptized one way or another prior to surgery.

Tonight Russell is actually awake. That doesn't happen often.  I would post more pictures but it breaks my heart to see him with the oxygen tubes in his nose - I don't really want a picture of it. Yes, I know, it's great for him but I still don't like seeing it.

A special thanks to both sets of Grandparents who are taking great care of Travis so we don't need to worry about him (besides the usual Mother instincts to worry about her child).  Travis visited today, along with both sets of Grandparents, and gave Russell lots of kisses. We are so fortunate that (as my father-in-law, Chip, point out) Russell can have all four grandparents and both parents in one room.  Then we add Travis to that and all of you, Russell is one loved boy.

Hospital Trip #2

On Thursday, May 22 we went to the pediatrician, Dr. Peterson, for Russell's two week check-up.  We stayed for about two hours.  Russell has not gained any weight in 10 days.  Since he is supposed to be at birth weight (7-9 and he is about 7-7), Dr. Peterson was concerned.  He talked to two cardiologists (ours and the on-call doc) and they all agreed Russell should stay a couple of days at the hospital to try and determine if it was his heart or just the Downs.  Apparently, Downs babies are slow to eat, get tired often and slow to gain weight. Russell sleeps except to eat and a few other rare occasions.

So off to Swedish, First Hill we went.  This is a great hospital for babies and is blocks from the cardiologists. We would prefer going back to Children's since, if he had to have surgery, that's where it would be. But they have a high level NICU (if I remember correctly).

As soon as we heard we were going to the hospital, we called our parents. My parents, of course, dropped everything and came up to get Travis.  They took Travis to JT's graduation and he got to spend the night with them in Port Orchard.  Matt's parents are in town as well and got to visit a little bit.

The on-call cardiologist (who we were supposed to see originally but couldn't get into), Dr. Kraybill, put Russell on another med that helps his heart pump more efficiently. She said they try not to do surgery until at least 3 months.  They will do it sooner, if necessary.

They did a chest x-ray.  I don't know the results but Dr. Kraybill is trying to get the x-ray from Children's to compare.  We will probably do another echo on Friday.

A different doctor put Russell on a little bit of oxygen since his numbers would drop to 88 and 89 once in a while.  They like the number to be as close to 100 as possible.  It's hard to see my precious baby with tubes in his nose but there was an immediate improvement so it's worth it.

Right now, it's 3:30 am and Russell and Matt are sleeping.  Matt woke me when he came to bed and I can't get back to sleep.  Just trying to digest everything. I'm scared but trying to be calm and realistic. Nobody seems to be nervous, except me, so that's comforting.

Sounds like we are staying until Russell gains weight. She also put him on a higher calorie formula to try and get him to help him with that.

Thank You!

I just wanted to say thank you to everyone who have given me encouragement, support and are praying for us.  Thank you for the reminders that God has a plan and gave us Russell for a reason. THANK YOU!

 When he was born and coming home!

 A rare awake time at home

Hospital Follow-Up

I talked to Russell's cardiologist, Dr. Heissline, today (Monday, May 19).  He said the heart wasn't "terribly enlarged" and it was actually good that there was some fluid in the lungs because it meant the lungs weren't restricting and they were doing their job. He wants us to come back the beginning of next week, sooner if there is a problem.

Hospital Visit

Friday, May 16, we had a trip to the hospital with Russell.

Thankfully, we have some wonderful friends, Kit and Sally that adore Travis and Travis loves them.  They were able, and happy, to babysit at the last minute at 10:30 p.m. When I told Travis that he was going to see Uncle Kit and Aunt Sally, he said "k" and went to the front door. I had to explain that we weren't ready yet. :)

Russell was breathing really hard - we could see his ribs.  This was expected but not for a couple more weeks.  We talked to the pediatrician and he wanted a chest x-ray and possibly get him on medication. So, off we went to Children's Hospital. We saw about 4 doctors and got an x-ray. They didn't seem worried and gave us lasix, a diuretic, to give him once a day.  Somehow, it makes it easier for Russell to breathe.  We are also supposed to follow up with our cardiologist on Monday. The cardiologist we saw at the hospital is going to send a report to him so he knows what happened.

We were discharged at 3:30 a.m.

I've made it through the last two days without crying, that's progress. I talked to Kim about her brother-in-law and Russell.  She was positive and realistic at the same time. It was helpful to talk to her. I also made a care binder, that lists all the pertinent information about Russell.  Thanks to Becky for sending me supplies - it was just in time to take it to the hospital.

Echo

Russell had an echo on Monday.  The diagnosis is relatively good compared to what could have been.  He does have a hole in his heart between the left and right ventricles. It may repair on its own, he may need meds and ultimately he may need surgery.  Surgery would probably not happen for awhile and as for difficulty, on a scale of 1-10, it’s a 2. The good news is he is not in pain and it won’t limit his play time as he gets older. We go back in 4 weeks.  Russell’s primary care is very happy with his weight gain (at 7-7, birth was 7-9) and everything else. 

Test Results

Friday, May 9 Dr. Jennings called and left me a voicemail.  It sounded urgent.  I called her back and she gave me the news - my perfect boy had Down's Syndrome. I made it through most of the call without crying. She wanted him to get re-checked for jaundice and to see a lactation specialist on Sunday and get an echo done on Monday. Down's Syndrome babies tend to have heart problems. Dr. Jennings also gave me resource information for the Children's Hospital Special Needs Clinic in Seattle, who apparently are the experts in the field.

I made Matt call to get the echo scheduled. I cried and cried.  I decided I needed to hold my baby so even though I was sobbing, I entered the living room and told my parents and Matt's mom. I held and kissed Russell.

My mom went into action and started calling family. I wouldn't let her call them in front me, I was crying enough as it was and to hear her say that Russell had Down's over and over, would just make me cry harder. I sent a message to my cousin Kim who is the only person I know that has a personal relationship with someone who has Downs. I couldn't talk about it then but hope to in the next couple of days.

The response from family and friends was overwhelming.  It helped give me hope that everything was going to work out.

That night, and the following days, were more of the same, crying, learning, hoping that tests would come back with positive news and trying to get my head and heart one the same page - everything was going to be ok.  Russell was loved by so many people no matter what happened. Matt has been amazing to me, trying to get me to see that most people struggle with one thing or another - we just know it from birth with Russell.

  

The Possibility

At 12:15 p.m. on May 7, 2014 the newest addition was born into our family - Russell Thomas Small. My perfect little boy was 7 pounds, 9 ounces and 19 inches long.  Travis and our friend Kit was the first to hear the name. Both sets of grandparents met him a short time later.  After while, it was just Grandma Small, Granddad Small, Matt, myself and Russell.  His doctor, Dr. Jennings, came in for the initial exam.  She asked the Grandparents to leave so she could talk to us.  She said there was a chance he had Down's Syndrome but they were sending for a test. We would find out in three days.

Matt and I had a few minutes alone to digest and talk about it but it seemed unreal. It wasn't a possibility. Matt told his parents and when my parents returned with Travis, I told them, forcing back tears. Then Becky and the kids came and I told her.

After we changed rooms and Matt and I were alone, I cried.  It couldn't be, it wasn't possible.  This wasn't what I planned.

The next day, Thursday, I thought about it but I was ok.  Maybe I was in denial, maybe I was just handling the news better. Our perfect angel had a few other issues (low temperature and a little jaundice) but as we found out later, only the low temperature was related to the Down's.

Dr. Jennings said we could find out Friday about the test results. On Friday, we were sent home.  Russell's temperature and jaundice were under control enough to go home.