Today I am Grateful

This is Natalie. I have been avoiding writing anything because just reading texts, emails, and comments makes me cry. But I want everyone to know how grateful I am for your kind thoughts and all of your prayers. Today I am trying to not cry as much (crying while I type this doesn't count), and I'm focusing on thinking of some of the small blessings we have already seen.

1. I am grateful for a nurse who was attentive and caught this problem early so we can fix it and move on. It would have been way worse if we'd have gone home and Seth went into heart failure.

2. I am grateful for everyone who has taken and is currently taking care of Seth. Everyone has been very kind and helpful at both hospitals. It's amazing to hear the nurses talk gently and sweetly to the children in their care.

3. I'm grateful for family and friends who've taken the time to include us in their prayers. We struggle to feel worthy of the concern of others when so many of our loved ones bravely face spina bifida, autism, premature birth, Down's Syndrome, MS, infertility, and even the passing of a child (in some cases children) and we're being told Seth will almost certainly lead a relatively unaffected life.

3. I am grateful to live during a time where surgeries like this are possible. It's amazing to think of the things that can be done to save a child. I'm grateful Seth can live a long, happy life.

4. I am grateful to my mom who has been dealing with a 6 and 3 year-old for the last 5 days. I know they are wearing her out, but she never complains.

5. I am grateful that for now that I get to hold Seth and feed him as much as I want. That will change in a few days, but I am grateful that there are no restrictions right now.

6. I am grateful that I am still Seth's mom and he knows it. I am the one who can calm him down and it's clear to me that he knows when I'm holding him. (He likes his dad, too. Just not as much :)

7. I am grateful that Seth holds my finger when he nurses. It makes me weep during the feeding, but it also makes me love him that much more.

8. I am grateful for my family: Mark who is such a great big brother and helper; Dax who has always makes me laugh; Randy who has been a rock through all of this and who helps me keep things in perspective; and Seth, who is already a fighter. I can't wait to spend more time with him. I am so grateful we can be a family forever.

Decision Time

Seth at CICU (the first C is for cardiac).

Seth definitely needs to have surgery to remove a narrowed portion of his aorta. We asked about a million questions (that's my strong suit-- I like to ask questions of Walmart greeters, too). We at least have a few answers now.

This condition is likely genetic. That means that it could possibly affect other children we have or his future children (or Mark and Dax's for that matter). The "chance of survival" for Seth is "very nearly 100%" from the surgery. There is a 5% chance that the aorta continues to constrict as he grows and he needs the surgery again in the next 1-2 years. There is a 10% chance that some procedure (the same or a stent to protect the arterial wall) will need to be performed at some point in his life. He can actively participate in any cardiovascular sports (baseball, soccer, basketball), but should avoid isometric activities (weightlifting, wrestling) because they raise the blood pressure "in bursts." I'm praying that doesn't count wrestling with dad.

Now that we know the surgery will take place, we have to make a decision on when the surgery will occur. The doctors recommend doing it as soon as we can get on the schedule-- likely the next 2-3 days. This is the course of action we are most strongly considering. The alternative is waiting several months until he is larger. Not only is there mixed opinion on waiting until the baby grows, Seth is not a normal baby in that he is nearly 10 pounds already. In addition, if we take him home and watch him for several months, I'll need to have heart surgery on the table next to him. I can't imagine every time he takes a deep breath wondering if his heart is giving up. We can't live our life with the phone dialed 9-1- and our finger hovering over 1 again.

The main obstacle we face until the surgery is how to feed him. Natalie can stay here pretty much all the time, but we're not sure she should be here for the next week. (Seth should be in the hospital for 5-7 days if everything goes well.)

Thank you for your prayers, comments, and well-wishing. It really does buoy our spirits. I'd just as soon have never had to face this, but I'm glad to at least face it with the support of those we love.

~R

Natalie needs a longer arm.

Wait and See

Primary Children's Hospital is running it's own battery of tests. The pediatric cardiologist at UVRMC determined that the surgery should be performed and recommended Seth be brought here. Now we are hearing "wait and see." It looks like for now we are on a 2-3 day watch period. Then, they'll make a determination as to whether or not surgery is required. If surgery IS required (still feels likely due to what UVRMC said) then Seth will be here an addition 7 days-- assuming everything goes well.


Ten days of living at the hospital! What will Grandma do with Dax and Mark?!

Transfer/Release

One of the hardest things is how perfect and ready to come home he looks.

Natalie has been released from the hospital. We are at home showering and getting ready to go to Primary Children's Hospital. Seth is currently on his way. The life flight (ambulance-- not chopper) people were really excited as they were loading him up. "No IV, no oxygen; this is awesome," one nurse said. They gave him a cute little life flight shirt, too. We are trying to hold it together.

Seth in the life flight carriage getting ready to go.

I really don't have anything to tell or any knowledge other than what has been expressed in the previous entry. I've planned pretty much my whole life up to now, and it's killing me being unable to plan more than one hour in advance . . .

Somehow typing it up helps a little bit. You will probably see very regular updates of the next week.

~R

Too bad he can't quite wear the life flight shirt!

Seth at Primary Children's

So, remember that breathing issue Seth was having at birth? It flared up really badly again last night while in the nursery. The nurse checked Seth's blood pressure in all 4 limbs and found it to be considerably different on his left side. They hooked him up to bp machines and found the difference the nurse detected to be accurate. Seth was transferred to NICU at about 2 am. Natalie called me and I came down. They've detected what's called coarctation of the aorta. In short, it's a narrowing of the aorta that will be exacerbated as Seth grows. The solution: surgery to remove the affected section.

Seth is being transported to Primary Children's today, and Natalie is being discharged from UVRMC. They predict the surgery will take place in the next few days. The surgeon will make an incision in Seth's back, spread his ribs, and cut the narrow section of his aorta out. Then they'll reattach it. There are risks of infection, and of course, his aorta will be shut off for about 20 minutes. Long term, he will have to see a heart specialist often at first, and every 3-5 years for the rest of his life. He will lead a full and healthy life barring any complications. (No scarring, aneurysms, or infections.) Seth will be at Primary Children's for around a week if everything goes well.

The good news is that Seth is stable (unlike his mom and dad) and in no immediate danger. Also, it was caught very early, for which we thank Heaven.

We are not really sure what else will happen and confront this challenge like strangers groping in the dark. There is not much else we know . . .

Hospital Night #2

I guess it is my turn to add to the blog. Randy took the boys home to put them to bed and I was given instructions to put something on the blog. Today was a great day. I took a shower, walked around a lot, ate real food, hardly any pain--it was nice. We also had a ton of visitors which helped pass the time. It was fun to have so many people want to see our new little boy. Now it is 9:15 PM and I think Seth and I are ready for bed. My mom is staying here for a little bit just to keep me company before she goes home to sleep at my house. We'll see how tonight goes all by myself--well, by myself with a team of nurses. :)

Here are some pictures that we took today of our new family. I love seeing Mark and Dax love their little brother. Hopefully the newness will never wear off and they will always help take care of him. Thanks for all your emails, texts, calls, and visits.

Randy loves Seth. Seth is not so sure about Randy.

Dax was more interested in Seth today.

Mark is a great big brother! He is so loving with Seth.

Our new family of 5.

Seth was a little more awake today than yesterday.

I took about 20 pictures of Seth today. This is one of my favorites.

Baby Update

10pm that night (6/29)

Things seem to have cleared up with Seth's breathing. He is eating really well. Natalie was up and around-- well, as far as the bathroom tonight. Her incision is bleeding a little more than they'd like, but no worries right now. I will be staying with Nat tonight because she can't pick him up, so I'll have to set him on her lap.

Seth is very calm. He whimpered and grunted all morning, a sign that he was struggling to get air (or so they tell me). He has been mostly quiet since. He is a cute little thing and played with us for a little while when he was awake this evening.

Dax was here earlier and said, "Dad, I think we should keep him."

Mark just smiled and as we were saying goodnight he said, "I'm really glad we have another brother in the family."

We didn't have too many visitors today, but if you'd like to drop by tomorrow, just call ahead.

Try not to look so skeptical, Seth!