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.