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.