My favorite Christmas present

Long Day

Here's Parker resting after his long day of doctor's visits. We had follow-ups on his surgery and his eating problem. And... they didn't go that great.

First they wanted to check his incisions. His pacemaker looks great, its not sticking out of his belly quite so much. Thats due to his weight gain, he is FINALLY over his birth weight! 5 lbs 14 oz, still quite small. His main incision over his heart is not doing that great, it actually got worse than last week. There is a hole in his chest the size of a pencil eraser that keeps oozing. It is healing, just not as quickly as they were hoping. So thats still bandaged up.

Then we went to the swallow study. I guess I should explain Parker's diet first. I pump breastmilk for him, but since he's so small he needs extra calories. So we mix 6 oz of breastmilk with two unpacked teaspoons of Similac. Then we mix four oz of that mixture with one packet of Simply Thick to make it 'nectar' consistency. We have dubbed it "sludge" in our house because its so thick. He needs to have the thicker consistency because he was aspirating (or breathing in) his food into the lungs and it could lead to pneumonia. Then as he's eating we have to carefully watch his lips and fingernails for any white/blue coloring, to make sure he's not aspirating.

They do the swallow study in a big room with a little tiny chair for Parker. They mix liquid with barium so it shows up on x-ray, and then they have a continuous x-ray to see if the liquid goes into his lungs as he's eating. Well, he aspirated again. This time he did cough, so thats a good sign. But then he started turning grey and lethargic, and the doctor yelled for me to turn up his oxygen quickly. Luckily he returned to normal quickly but it still scared me.

And now the worse part. We have a therapist coming to our house weekly to work on Parker's eating skills. Well she told me that its fine to use thin liquids at the beginning of the feeding to get him 'used to them'. So we've been doing this for about a week. When I told the doctor, she FREAKED OUT. Apparently thats ok for most patients, but cardiac patients are different. So for the past week we've been encouraging him to drink thin, where he's been aspirating every single time. I feel so guilty. I've been causing harm to my poor child. :(

Just with everything going on, I wonder why Parker was sent to me. I have no idea what I'm doing, and it looks like I'm just making him sicker. This little baby is a lot of work!

Amy

Exhausted

I thought I'd post to let everyone know that we're alive. We are SO thrilled to have Parker home with us, but gosh its a lot of work. He has to have special food that requires a three step mixing process, and is quite grumpy. He never sleeps longer than three hours and ALWAYS WANTS TO BE HELD. Even when he's asleep he prefers the warmness and comfort of his parent's bodies. Add an older brother who is insanely jealous of all the attention of Baby Parker so he constantly is naughty? We are exhausted. We survived Christmas and the hustle and bustle, but I really just wish we could get into a nice pace and start to enjoy this time. Also Parker has had 4-5 appointments per week, so that is pretty difficult too.

No picture, because I'm too tired to grab my camera.

But we're home. And happy. And sleep-deprived. :)

Amy

A Merry Little Christmas

Here's a sweet picture of my little peanut. Its a special little guy who can fit into his own Christmas stocking, and look adorable while doing it. Wishing a Merry Little Christmas to all of you who have supported us and cared about us!

Grins

One of my favorite things to do is hold him and watch him as he sleeps. His face bursts into the biggest grins, and I know he's happy to be here with me. :)

Coming Home!

They finally let us take him home! (On thursday) He barely fit into his carseat, one ounce to spare. Even though he was full-term, he's wearing preemie diapers, preemie clothes, an oxygen mask, and a feeding tube. He wasn't too thrilled to be in his carseat, but loves being at home with us. He is such a cuddler, he NEVER wants to be put down. Which is an easy request, we love to cuddle him!

What a stinkin' cute little guy.

Really Quick

Just want to announce that Parker will be coming home tomorrow! Thank you for all your prayers, it looks like they're working!

Little Peanut

Today one of Parker's techs called him Little Peanut and it is so true. Our once 5lb 11 oz baby has now turned into a 4lb 9 oz Peanut. His cheeks have lost their chub and he feels so light as he snuggles into your chest.

Part of the reason is because he just won't eat. This is where the majority of his struggles are lately. Since he didn't eat a bottle for two days after birth, he really doesn't know how to do it. He has a test tomorrow where they feed him dye and then do x-rays to see if the dye goes down to his stomach or if it is getting into his lungs. We also have a meeting with a speech therapist tomorrow to learn how to teach Parker to use his mouth, to suck and to swallow. They are also enriching my breastmilk with high calorie formula to try to increase his weight.

I love spending time with him though. I can get him to eat twice as much as any nurse. He loves his mommy, thats for sure! What a cute little peanut.

Tiny Little Tootsies

Loving these little toes!

We went up to see our little guy again today. Oh how sweet and adorable he is. He is finally out of the CICU (Cardiac Intensive Care Unit) He's doing pretty well, they've removed the line that is draining his chest from surgery. That means he's down to three tubes: a feeding tube, an oxygen line (as a precaution), and a heplock in case he needs any meds. His chest is still covered in bandages from his surgery though. And due to his tiny size his skin is too thin, so his little pacemaker is bulging out a lot. So he has padding on his chest for that.

But since he's now out of the CICU, we can be there for as long as we want, and we get to be the parents! We can cuddle our guy all we want, we can feed him and change him. Its great to finally have the opportunity to bond with him!

Its looking like he will have to come home with a feeding tube. He's just not drinking enough on his own. Its scary to think that we'll have to put it in and take it out, but my excitement of bringing him home soon is greater than my fear.

And we have NO idea when to expect him home. We have hopes but we've learned not to trust those. I'd rather him be completely healthy and ready to come home rather than panicking in the middle of the night with a sick baby.

Oh I love that kid. I can't wait to see him again tomorrow!

4 days old

Its a good day.

Parker's Blankie

Just wanted to show off Parker's blankie. Such a sweet wonderful blanket, perfect size for our little guy in his bed. I've had it ready and waiting in my hospital bag for this day.

A few surgery pictures

Well he's out of surgery and doing well. I don't have much energy to post on his latest condition, but thought I'd add a few pics. The first two are before surgery. You can see how grumpy and unhappy he is. The second is post-surgery. He's a lot calmer, although he is still drugged up a bit. Either way his body sure has been through a lot, and I'm proud of my little guy!

Mommy's story

As promised, here is what happened to me. It is very gross, and for that I apologize. (but you have been warned)

Well the c-section went very well. I tried very hard to stay calm and had a much better experience than with Colby. I wasn't even aware they had started until the anesthesiologist asked if they had made it to my uterus yet. There was a lot of tugging on my body that I felt, but it really just felt like I was in a bouncy house. No stress whatsoever. I loved seeing my little guy. He made two small squeaks and then looked down at me from the curtain. He had big, wide open eyes, so blue and full of curiosity.

After they finished my wonderful c-section, they took me back to recovery. Grant was soon allowed to be with Parker so it was just the nurse and I. We sat there chatting easily, talking about how sweet my little guy is and attempting to predict what they would do with him. Things were going well, like I said earlier the life flight team brought him in to see me before he went to the children's hospital. I did well in recovery so they let me go to my room. The anesthesiologist had to be in another surgery and so forgot to put an order in for my pain medication, but I was doing well and the pain really hadn't hit me yet.

Both my husband, mother and son were at the other hospital when I noticed my gown was soaked. It was pretty uncomfortable so I pushed the nurse call button to ask for another gown. They didn't come very quickly, so I hit it again. No such luck. I was just about to hit it again when the CNA came in to bring me some ice chips. I brought it up and she went to go get the main nurse to help change me and clean me up. My mom and hubby walked in, and I was grumpy from lack of pain medication, but also shaking a lot. I was hot, but clammy and couldn't really talk. My family left when the nurses came in to give me some privacy. They pulled back my gown and immediately started pushing buttons and yelling down the hall. I had huge clots and was bleeding profusely. My uterus never contracted down, so my body was sending all my blood straight to my uterus. In other words, I was hemorrhaging, BAD.

To get all the blood out, my doctors literally had to dig through me and grab huge clots out. At this time I still had not received any pain medication, and my spinal was all but worn off. They brought back some anesthesiologists, who were desperately trying to find a good vein to get an IV into for my meds. I have about 15 holes in one arm from all their attempts, but they kept blowing the veins out. I had doctors jumping up and down on my stomach (and fresh incision) trying to get my uterus to contract down, but it still wasn't enough. They rushed me back to labor and delivery for more room and more supplies nearby where they continued to batter my poor body. I finally got some pain meds but I was beginning to pass out and wasn't very good about pushing the button. I could feel everything and it was horrible. My husband was not able to stand all the needles and injections and so was left alone to compose himself while I was with all the drs. All I could do was hold hands with whoever I could reach and scream as they tried everything they could.

They knew that things weren't working very well anymore, so they rushed me back to my Operating Room as a precaution. They were also able to find better medication for the worst of it. It wasn't long term, it lasted about five minutes at a time. But once they gave it to me, it hit me like a ton of bricks and made things a lot more bearable. They were also able to give me blood transfusions at this time, so I was starting to feel a bit better. They had to dilate me to 4 cm to reach in and clean me out (dilating after labor, NOT FUN) It still hurt like no other and between my screaming I would beg them to let me have a break, just two minutes to gather myself.

After two hours of all of this, they finally were able to have everything under control. I had lost 40% of my body's blood and had two transfusions. I was told that this was the 4th case of this happening this week, and I was the only one who didn't have to have a hysterectomy because of it. It was a long hard battle for everyone and I was just soooo exhausted after all of it. Even now I still don't have very much energy at all. I am also still struggling with pain, we have not found a good medication schedule yet.

I've been nauseated, exhausted and desperately want to see my son but am unable to move much. Its been a long hard journey but I am starting to recover.

And thats the gory details.

And to end well, here's one of the only pics I have with my guy, right after delivery before they were taking him to the other hospital.

Surgery

Parker's surgery is this morning, second in line for the surgeon. It will be about 11 or so, which daddy there to hold his hand as he goes in. Hopefully both Mom and Dad can be there when he returns, to see how he's handling things.

I went down again last night to see him. Its such a long and painful ride, I'm usually already sick and in pain before I get to him, so I can't stay long. He is still super teeny. He likes having his toes rubbed. However, he only has two moods, asleep and VERY grumpy. Our nurse put it this way, heart babies just don't feel good. Its like having a migraine, you really can't smile because you're in pain. So we really can't get him to look up at us with wonder or coo at him, we really need to let him sleep if he can. So they're not exactly the happiest visits for me right now.

And thats how things are right now.

Amy

Parker's Current Condition

I have quite the doozy of a story to tell about me, but I understand everyone is a bit more concerned about his condition right now.

Within seconds after Parker's birth they handed him through the window into the NICU at my hospital, where they worked hard to stabilize him and treat him. They let me have a small peek at him over this curtain, where I caught a glimpse of a super skinny baby who was very stunned to be in the world. He didn't cry, just squeaked his disproval.(hi mom!)

He scored 8 and 9 on his apgars, which are great numbers. After about an hour they allowed Daddy in to follow him and see him. He was super tiny, so much different from our Colby butterball. 5 lbs 11 oz compared to our last, who was a chunky 8 lbs even. He loves to grasp hands, he hates pacifers, and isn't much of a cuddler yet. He's not very happy to be out, and is pretty grumpy. He's more red in color than your average baby, I think. His breath is very labored. After they got him settled with an IV and monitors, they placed him on a gurney to start his transport to the connected Childrens Hospital. They stopped in to see me on the way, where I got to hold him for about two minutes. He didn't cry, he seemed quite content to have his mommy. He immediately grasped on to my finger, and this is when we got the other picture we posted yesterday. See the little incubator with the tiny bundle of blankets? Thats Parker.

They sent him down to NICU, where I'm told they did a lot of testing, chest xrays and EKG's and whatnot. He peed on several nurses and was generally just unhappy. Still even now he seems restless and unhappy. They put him on oxygen as a precaution, despite the fact that he was tolerating room air just fine. He's not eating well, either bottle or breast. They do have an IV in him giving him glucose. Here's a more recent picture of him:

(pic taken by Grandma Smith, haven't felt well enough to take my own pics yet!)

I finally felt up to visiting him around 1 in the morning, and it was nice to hold him again, feel him up close to me. I don't think I can stress enough how small and fragile he feels. It also didn't help that i was floating in and out, trying hard not to fall asleep right there. Soooo sleepy.

They are definitely doing the surgery on him, there is some debate on whether they are doing it today or waiting until tomorrow. We haven't called today yet to get an update on that.

And thats the majority of what we know right now! Phew, exhausted just typing it out!

Amy

Parker Jake Smith was born today at 12:34 pm, he weighed in at 5 lbs. 11 oz. and 20 inches long. He is currently in the cardiac ICU, and doing well. More info to follow!

The (tentative) Plan

After repeating this about a billion times today at church, I thought I would post it here. Here's what we are guessing will happen after he's born (which we are thinking he'll wait until Wednesday.)

-I will go in on Tuesday for all my c-section prep, including lab work.
-Wednesday Grant will drive me in and we'll get started right away. We hope we're not bumped due to emergency c-sections. This will hopefully be at 11:30 like scheduled.
-Depending on how Parker does outside the womb, he may or may not be rushed straight to the NICU. The cardiologists seem confident that he'll be ok after he's delivered, and might be able to hang out with us in recovery. He will probably have to be monitored at some point in the NICU though.
-He will most likely have surgery on Thursday or Friday. They'll watch him all of Wednesday to see how he's doing, but he will definitely not be leaving the hospital without a pacemaker.
-I will be leaving either Saturday or Sunday.
-They estimate that Parker will spend a week in hospital, just to check that everything is ok and that he's not having complications. So if it is a week, that means he'll be home the following Wednesday.

And thats the extremely tentative plan. All subject to change, but thats what we're planning on right now.

Amy