Catching Up!

Wow, I've been terrible at updating the blog....sorry, we've been busy. Russ keeps busy with school and work (on top of everything else). Work for me has been steadily busy, which is great as far as extra money goes, but not so much on the stress levels. And of course there's taking care of the kids and doctor's appointments, therapy, etc. Melina turned 4 in August and then started preschool in September (my little girl is growing up:'(). She's a good helper, when she's not being a pest. I don't know how younger siblings manage to survive the older siblings. I guess Carson will get even later on. And Carson, well....what can I say about Carson....he's our miracle baby.

Carson is almost 8 months old and has been doing amazingly well! He is completely off of the oxygen and has been for a while now. We don't even have the tanks anymore. The only thing that we're really still dealing with is his feeding problems. He is still aspirating, so he can't have anything by mouth. We are allowed to give him little tastes of some foods, but that's it. He soooo wants to eat. We're grateful that he doesn't have an oral aversion, he's your typical baby....everything goes in the mouth. We have another swallow study scheduled for next month. We're hoping and praying it will go well. Either way, a change has to be made. Even if it means having surgery to place a more permanent feeding tube.

He has made so much progress with his development. He's still a little behind, but we are confident that he will catch up soon. He is army crawling now and very close to full on crawling. He just needs a little bit more arm strength. He's very fast when he wants to be. Let's just say that the feeding tube is a challenge. We've had to resort to blocking him from leaving the room. It's either that or we have to pretty much follow him around with the feeding pump. He can also sit up on his own now....well sort of. He can hold it for a little bit and then catches himself when he falls forward.

Carson was finally circumcised a couple of weeks ago and at the same time he had an echo done. Everything is fine except for his aortic arch. His cardiologist is a little concerned because it has some narrowing. He doesn't know if it is because it isn't growing with him or what, but it is something he is keeping an eye on for now. If it becomes a problem, it is something that can be fixed in the Cath lab, not the O.R.

Well that's it for now. It has been hard and stressful, but we have also been so blessed. Stay tuned for some pics and video clips (if I can figure out how to post them).

Long overdue!

This is long overdue...Enjoy!

Carson Update

It's been a while, so I figured I should do an update post. Carson is doing well. He has been home for about a month and a half since the last hospital stay. During that time we have had 3 ER visits, one of which resulted in another hospital stay (he caught a stomach virus of some sort). Luckily this time it was only for 2 days. Unfortunately the timing was bad and it happened the day before Father's day.

Carson is now about 4.5 months old and is finally healthy enough that he was able to get his first round of immunizations. He hasn't really grown very much. He is 12.6 lbs. (10th percentile) and 24.5 inches long (30th percentile). I'm used to having a child on the opposite side of the spectrum. He continues to have physical therapy and occupational therapy which he is making progress in. He is still on oxygen and a feeding pump. He also still has some breathing issues that we are trying to figure out. He is scheduled to have his airway checked out with ENT in the OR next week. We're hoping it is as simple as some scar tissue that can be zapped with a laser and not something that will require another surgery. We will see....

Anyway, that's the gist of it. I will post some pictures soon. I just haven't had a chance to upload the pictures yet.

What is a CHD?

What is a CHD?

by Shannon Arnold Smith

What is a CHD? You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked..."What's a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix, aspirin, Captopril...
It's wondering... Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?
It's cringing inside...at what she's been through.
It's dozens of calls to her pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's...praying...it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected.. .
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us...we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD

Here we go again...Carson Update

Most already know this, but Carson is unfortunately back in the hospital. We had him home exactly 1 week. He was having respiratory distress and some other symptoms. It was a combination of 1) Rhino virus (the common cold) 2) withdrawal and 3) fluid retention. He has been kind of up and down, but we think he is finally on the mend and will hopefully come home again soon. We will just have to be home bound for a while and extremely careful (not that we weren't before). We think Melina gave him the virus, since she had cold symptoms show up the next day.

Here are some of the latest pics.

Before we left the hospital.

Going home!

Sleeping in my lap.

About to cry.

Much better...got my binky.

For grins and giggles....Melina insists that she is done with naps.

Back at the hospital:(

Donations

During Carson's long hospital stay, he received many donated gifts. Most of them came from playing bingo. How does a baby play bingo? Well, he didn't actually play. The hospital has bingo every Wednesday and every patient in the hospital gets a prize whether they play or not.

He received:
3 blankets (one isn't pictured)
3 crocheted blankets
1 hand stitched quilt
1 cross stitched pillow (it's personalized and we have no idea where it came from)
1 burp cloth (not pictured)
3 "hugs" (those long things with the hands on them)
2 teddy bears, a stuffed bunny, Mickey Mouse (he came to visit), and a stuffed moose (from FM100 radio-thon)


This of course, doesn't include all of the wonderful gifts we received from our wonderful family. Thanks everybody!

He also got a couple of birthday signs made by the University volunteers. We were glad that he didn't get a 3rd one, but then he ended back in the hospital for his 3 month birthday:(

It's Official!

He did it! Well, he actually graduated back in October, but he finally had commencement. He says that it finally feels official. It's been a long time coming. I'm proud of you Russ! Now on to graduate school.

Carson Pics and update

As most of you know, Carson moved out of the ICU on Saturday. Yay! He is doing well. They changed the last of his IV meds to oral, so the Broviac (central line in his chest) will come out tomorrow. This means that he can come home soon! I was told that he should be able to come home the end of the week. Ahhhh! I can't believe it! We're hoping that I will be able to "room-in" with him (which is required before he can come home) on Thursday and then bring him home on Friday. The nurse told me that that shouldn't be a problem, but as we've learned many times throughout Carson's hospital stay, things can change. So we'll have to just wait and see if that actually happens. As of now, it looks like Russ will get his wish, which is to have his whole family at Graduation on Saturday. Carson will come home with a feeding tube and most likely oxygen. We have to learn how to give him his meds through the feeding tube and how to handle the feeding pump and oxygen. We are nervous, but also so excited to finally get him home!

Here are the latest pics. There are a bunch of them, so I did a slide show.

Quick Update

I just thought I would do a quick Carson update. He is doing really well. He has pretty much surpassed everybody's expectations. He was extubated yesterday and so far so good. He is so much fun to visit now. He is awake and alert a lot of the time. We've even been able to get him to smile. He is just the cutest! (No, I'm not biased at all.) I will post some more pics soon.

Be Not Afraid

After meeting with the surgeon last Friday, I was terrified. Because of Carson's complicated case, the mortality rate more than tripled (from 5% up to 15-20%). There were also risks for many different complications. I was really worried that he wouldn't pull through. But as I prayed and fasted, I began to feel peace. I started to feel that Carson would be okay. He was also given a great blessing by Russ. I was still nervous for Monday, but it ended up being a lot better than I thought it would be. We showed up bright and early (actually it wasn't bright, it was still dark) at the hospital and got in a good visit with Carson before surgery. He was awake and alert and I got to hold him. The surgery went well...every time we got an update it was to tell us that things were going well. The surgery was done sooner than we expected and the prognosis was good. I think it even went better than what the surgeon expected it to go. It is such a big relief to have this huge hurdle done and over with. Carson still has a long way to go, but as of now he is doing really well. We hope that he will have a good recovery and that his breathing issues will improve so that we can bring him home. Thanks for all of the love and support. I have no doubt that all of the prayers have helped immensely.

New Plan

Carson was extubated in the O.R. on Monday and then was later intubated again. Are you noticing a trend? They didn't really find anything new, just confirmed what they already knew. His airway is being compressed in a couple spots. They were hoping (and so were we) that he would get better with a little bit more time, but it doesn't look like that's going to happen. His arteries are compressing his bronchial tubes, so the only way to fix that is to move the arteries. So the plan for now is to have surgery on Monday (of course we know that things can change). He will have the transposition repaired (which will move the arteries) and they will fix as many of the VSD's (holes) as possible. We were all hoping that he would be able to grow and get bigger before the next surgery. Having the surgery doesn't guarantee that his breathing problems will go away, but they definitely aren't going to get better before the surgery. So, they can't wait to do the surgery. He just has to finish his antibiotics for the bowel infection (which is looking better last we heard). So anyway, that's the update. I hope it all makes sense.

We plan on fasting for Carson on Sunday. Any and all of you that are able and willing are invited to do so as well. We are terrified for this surgery. It is a complicated surgery and Carson has to go on bypass for it. We hope and pray that it will go well.

Here are some of the latest pics of Carson.


He can get pretty grabby some times and we took a picture right when he was pulling on one of his tubes.


Here are some pics of Melina looking for eggs. I just thought I would throw these in. We had a good Easter.

Complications

We've been told a few times that the longer somebody is in the ICU, the more complications that can come up. Unfortunately, Carson is proving that theory right. He has gotten a few blood clots from where IV lines have been placed and now is limited to where they can go. He had to have a pic line placed in his Superior Vena Cava through his neck/chest area (I forgot what the actual name for the pic line is). They think he may have a factor deficiency with his liver that is causing the clotting issues.

He also contracted a bowel infection. They were pretty concerned for a couple of days that he may need surgery for it, but fortunately, it is getting better. He is on antibiotics and bowel rest, which means they had to stop his feeds. They were just about to increase his feeds to help bulk him up some more, but then noticed some blood in his stools which led to the diagnosis of the infection. Although, I did find out that he has gained about one pound since he has been there.

And then there is the breathing problem. They still don't really know what is causing the problem. He still has the breathing tube and the plan is to extubate him in the O.R. with ENT. He is scheduled for that on Monday. In the mean time, they will just let him rest and give him some spontaneous breathing tests. We're hoping that it will go well.

Crazy Snow!

It's technically Spring, but here we are with a bunch of snow. It's not the melted by the end of the day snow either.


Melina sure had fun playing in it.


We even built a snowman.


Here is the final product (I know, it's not very big).


And here's what happens when a certain someone can't leave it alone.

New blog

Now that I'm just about 6 weeks postpartum, I've decided that it's time to try and lose weight. So I decided to start a new weight loss blog. It will be a place for me to express my thoughts, frustrations, and triumphs with my weight loss efforts. It is going to be a private blog, so if you want an invite, let me know and I will decide if I want to invite you;) Note: I will need your email address if I don't already have it.

Update and Tummy Time

Well, we are still playing the waiting game. ENT found a few small things, but nothing significant. They decided to give Carson some more time and then try to extubate again. Well....he failed extubation again (for the 3rd time). He had a CT scan and they found what may be causing the problem. I won't go into too much detail, but basically his bronchial tubes are collapsing and being compressed, so not enough air is getting through to his lungs. The doctor's are still reviewing his case and trying to decide what to do next.

Carson is now getting some tummy time each day. He's a strong little guy.


We are now able to hold Carson. It's hard to move him with the breathing tube and everything else, but they finally decided that it's been long enough and he needs to be held more often.


Just for grins and giggles, here's a cute pic of Melina I just had to share.

7 years

Yesterday was our 7th anniversary. We weren't able to do a whole lot to celebrate, but we at least went out to dinner. Thanks for a wonderful 7 years, Russ! I love you!

Here is the most recent pic of us together (other than hospital pics). It was taken the day before Carson was born. Yes, I know...I was HUGE!

The waiting game...Carson update

Carson is quite the fighter. Unfortunately, he is still struggling to breath though. He came off the breathing tube and was put back on the CPAP on Saturday. But he had to be intubated again today. He was just breathing too hard and fast. I was told that an Ear, Nose, and Throat Specialist was going to take a look at him because they think there is a problem with his air way. Hopefully they will figure out the problem soon. We are very anxious to get our little guy home. Here are a few pics we took yesterday (he is on the CPAP).

"I want to pump!"

As many of you know, I've been pumping so that Carson can get some breast milk. Well, Melina thinks it is pretty cool that I can "make" milk. When she first saw me pump, I told her it was milk for Carson and she exclaimed "You make milk from your nipples!?!" And then the other day she said that she wanted to pump and this is what she did with no prompting from me.

Spoke too soon

Just a quick update: We received a call at 2:30 this morning (never a good sign when the phone rings in the middle of the night) and were informed that Carson had to go back on the ventilator. Just when we think he is doing better, he experiences a little set back. As I said in my previous post....up and down, up and down. He basically just tuckered out. The plan for now is to just let him rest and get some nutrition and hopefully gain some weight. Hopefully he will be doing well enough to start weaning him off of the ventilator again some time next week. Anyway, I will try and be better about posting updates more frequently.

Emotional Roller Coaster

Up and down, up and down. The last 3 weeks have been quite the emotional roller coaster. Carson is still at Primary Children's Medical Center. It turns out that he has 3 major heart defects...Transposition of the Great Arteries, VSD's, and Coarctation. He has also had some problems with his lungs (tightness and fluid retention). He was bumped for surgery a couple of times due to various reasons, but was finally able to have the first of 2 surgeries on Saturday, Feb. 28. The Coartation is now fixed and he also received a band on his pulmonary artery to help restrict blood flow to the lungs. When he is a little bigger and starts to outgrow the PA band, he will have the second surgery to fix the TGA and VSD's.

He is now off of the ventilator, but is on a CPAP that provides some positive air pressure to help him breath. He is quite feisty and has a big temper. He gets really mad whenever someone bugs him. Although part of that is because he is withdrawing from some medication that he was on for 2 weeks. He is now on methadone to help with that. The problem with him getting mad is that it raises his heart rate and blood pressure and he breaths too fast. He may have to go back on the ventilator if that keeps happening. He is doing better--the last 2 days have been good days. We're hoping that he keeps it up. We really want to get him home, but at this point we just have to be patient.

It's been hard on all of us. Russ went back to work last week, so he makes his visits after work. I have been trying to make daily visits. It has been hard though because it pretty much takes all day once you add in driving time and dropping off and picking up Melina. Melina is holding up pretty well. It definitely has an impact on her though. I think she does well when she is at the baby sitter's, but she has been more clingy and ornery with us.

As I said before, the last 3 weeks have been difficult, but there is much to be grateful for. We are very grateful for the medical technology we have today. We are very grateful for wonderful doctors and nurses that have been caring for our beautiful son. We are very grateful for good insurance. And last but certainly not least, we are very grateful for a wonderful, supportive family who has helped/and continues to help us through this trying time.

Thanks to all for the prayers, they have been greatly appreciated. Please continue to keep us in your prayers, as I truly think they have been helping.

Here is a slide show of some pictures taken in the last 3 weeks, including pics of Melina's visit to the hospital and pics of Melina at the park. Note: Carson is quite puffy in a lot of the pics and yes, he was jaundiced.

Some Good News and Some Bad News

We have had quite an eventful 24 Hours. We are pleased to announce that Carson has officially joined the family. He was born on February 15, 2010 at 12:44 pm. When he was born he weighed 8 pounds 9 Ounces, one ounce beginner than Melina was, he also measured at 19 1/2 inches long. At first he seemed to be fine, but an hour after he was born we notice he was turning a bit blue and was rushed off to the Nursery for some special care. Things escalated quickly and by 6:45 he was on Life Flight heading to Primary Children's Medical Center, and by 9:30 we new that he would need open heart surgery for correction of some heart defects. At this time he is stable and awaiting the decision of when he is going into surgery, which we have to wait until Wednesday to find out the answer to that question. Alicia is doing well, working towards her recovery so that she can get up to see him.

It's done!

The kid's room is finally done! Yay! With one week to spare, whew. We also finished up all the last minute shopping. All that's left now is to get our house clean.

One month to go!

I'm almost there! One month to go! Most of you already know that I've decided to go with a repeat c-section (my odds for a successful VBAC are slim). I now have it scheduled. It is scheduled for February 15th. I'm really happy with that date for a couple of reasons. 1-it's my dad's birthday and 2-it's the 1 year anniversary of my miscarriage. Yay! There's an end in sight. Although I'm slightly worried I won't make it since I've had so many BH contractions. Anyway, I'm hanging in there. Other than having to deal with BH c0ntractions, I've recently started having problems with SPD (Symphysis Pubis Dysfunction). At least I'm pretty sure that's what it is. I pretty much feel like I've been kicked in the crotch and it hurts to walk, etc. I don't think I have it too bad though...yet. I'm definitely ready to be done with this pregnancy...at least physically. Otherwise...not so much. We still have quite a bit to do before this little bundle of joy arrives. Hopefully we'll get it all done.

I know I haven't been good about doing belly shots like I said I would, but here is one taken earlier this week. I'm about 34 weeks.