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

Legalities

To the Current Occupant of my belly,

This is an eviction notice. The residence in which you are living can not take any more abuse. Your constant parties in the middle of the night have disturbed many of your neighbors, not to mention your landlord. In addition, the constant harassment of your neighboring organ, “the bladder” has gone too far.

You are to pack up your placenta, amniotic bag, and any other items you may have and leave the premises. If you have not vacated by Dec 8 at 11:30 a.m. you will be removed by force via c-section. Clearly it would be much easier to turn yourself in and leave on your own. As an added incentive, if you chose to leave early, the landlord (Mommy) promises to buy you lots of pretty and shiny things. You should take advantage of this one-time offer.

Any questions or concerns can be brought up to the owner of the premises, your mother, and must be done in person. I hope you enjoyed your stay these last 9 months and I know the outside world will be a much better fit for you.

Sincerely Yours,

Mommy

Worry

Well, I really have been avoiding posting this because I don't want to become scared about this. I don't want people to worry about a problem that may or may not exist. But today is yet another big appointment, and frankly this is all I can think about.

So, the heart thing, right? Its just pumping slowly. Its a quick fix once he's born and he'll be back to 'normal' and the world will be right. Of course, he'll have a few surgeries in his lifetime to replace his pacemaker/pacemaker's batteries, but for the most part its non-invasive.

Well about two fetal echocardiogram's ago (please tell me I'm not the only one who measures time by appointments!) they discovered something else. His aortic arch may or may not be narrowing. Its a small tube thats hard to see, especially by ultrasound before the child is born. If it is indeed narrowing, its due to the stress his poor heart is going through. In that case, my son will be put on medication and will eventually have surgery to widen it. Because of its size and location (and my crazy wiggler son) they cannot fully determine if it is going to be a problem. Both ultrasounds have indicated it might be, though.

Its kind of ruining my 'living happily every after' outcome though. I want his health problems to be fixed permanently, right after birth, thank you very much. I don't want to have to worry about administering meds, the constant worry that something might be wrong. Late at night trying to decide if I should call the cardiologist or if I'm just imagining things. Due to the pacemaker surgery he's already not coming home with me. Will this slow down his trip home too?

And then you face the 'what ifs'. What if he had been taken out in October before this started hapening? Would we have avoided this complication? Would it have been worse?

The mind games are insane, especially when all I want to do is give birth to my sweet little boy, to hold and cuddle him, to take him home with me, to care for him.

I don't know, I'm just hoping for a great day today, where all the appointments go well and there's a lot less worry on my part.

Amy

Never thought I'd say this...

but I'm still here. Pregnant. At the beginning of all this mess I never dreamt that I would be pregnant for this long.Everyone kept saying to expect a preemie, and so I did.

And now, at 36 weeks, I feel.... proud. I'm doing it. Not exactly with a lot of patience, grace or poise, but I'm still here. My little guy is still growing and doing okay.

And in all reality, things are going to be happening. Soon! The doctors can't push this off much longer. This baby is going to want out.

I'm a bit nervous, apprehensive, and excited all rolled into one.

Grow, Parker, grow!

Whats going on with us?

Not a darn thing. Ok thats not entirely true, but I wanted to make it clear that we're still here. He's still baking, I'm still pregnant, we're doing okay.

There's a tentative plan in place, but I've learned not to put much stock into any plans!

If I go into labor, they'll take him out. I am hoping that this is how things happen, rather than waiting until they decide when the right moment is. I am having a few mild contractions, but they are nowhere near actual labor yet.

So things could happen at any time, or they could not.

But for now, we're doing okay!

Maternity pictures!

My dear dear friend Kim is a photographer, a fabulous one. While I was cooped up in the hospital, she came to visit me. She brought me pretty clothes, did my hair and make-up, and transformed my hospital room into her own little studio. I love these pictures and felt so special! The nurses were thoroughly impressed too, asking if they were next. Hehe!

(images are property of Kim Orlandini. Posting with permission. )

Just make up your mind already, Doctors!

This is just another post on the ridiculousness of my doctors. My doctors don't communicate at all, but they tell me they do!

Last Tuesday, my new ob-gyn said that I should go full term to 37 weeks. But on that date (Dec 1) they'll take him out.

Last Friday, Parker's cardiologists informed me that they held an "Amy and Parker meeting" and want him to bake until 38 weeks. They told me that they spoke to my ob-gyns, and they were on board.

This past Tuesday, I saw my ob-gyn again. She informed me that the cardiologists had not spoken to her. Plus she found new things to be worried about (my health, this time) and she wants him out no later than 35-36 weeks.

Can we just pick a day and stick to it???

For the record, I'm 34 weeks today.

Amy

I think Parker reads this blog...

and I'm glad!

After my informing (ok... complaining) about his breech position, he took note and is now comfortably laying on his side. Out and away from trouble. Its been two days, and any damage he did to my cervix is back to normal.

And second, after also mentioning how he ALWAYS fails his ultrasound tests... well he's making that one up to me too. He was always failing because he refused to breathe, which was docking his points and making him fail. Well, no more. The moment they put the probe on my belly, he starts breathing, big huge movements. He has passed all his tests for the past 2 1/2 weeks, so I don't need to go in for any extra tests!


....

small complaint though. All my doctors got together and have a "Parker and Amy" meeting. I wish I were invited! They have now decided that 38 is the new magic number, which adds yet another week to my pregnancy. This makes me more nervous, because it never really occured to me that I could go into labor with Parker. I was in labor with Colby before 38 weeks. I just always assumed they'd take Parker out before I had to worry about that! Also towards the end they'll want to see me even more frequently than two days a week. It just keeps piling on, eh?

Amy

Ouch

Parker is a little stinker in many ways. One of the ways... the little boy loves to hang out breech. For those that don't know what breech is, I found the most non-graphic picture on google images I could. They're supposed to be head down, and sometimes Parker is. But he much prefers sideways or this, breech. And the kid loves to kick. And kick and kick and kick. I am getting VERY sore. Turns out he's causing me to dialate a bit. So in case this pregnancy wasn't difficult enough, they're starting to watch out for signs of pre-term labor.

Touche, Parker.

Still...

There's still no change. The doctors are attempting to go 'full-term' which I hope means the day that I hit 37 weeks they'll pull him out. What a long and exhausting pregnancy.

I am so glad that he's still doing 'ok'... ok for Parker anyways. If it were any other kid, they'd be panicking. I'm glad he's showing them what he's capable of. :)

Amy

Still Pregnant...

At one point my cardiologist said that they would deliver him at 32 weeks, that he would definitely be coming in October. Well, 32 weeks was yesterday, and I'm still pregnant. I'm also thinking the October birthday isn't going to happen either.

So, now, November anyone?

Amy

New doc

Part of the trade-off for leaving the hospital was that besides daily ultrasounds, I had to transfer all my care up to the hospitals up there. All parties agreed that it would just be easier for all my records to be in the same place. Although this is NOT good-bye to my current doctor, she still fully plans on delivering me and keeps updated on my care. Either way, I was still a bit hesitant to meet my new doctor and see if she was on the same page as me.

I was pleasantly surprised in some aspects.

She is totally fine with my old dr delivering me. She is ok with just being a short fill-in in my prenatal care. They just need me to have a place to pee in a cup and get weighed, and she's ok with that. And something even nicer- she agrees w/me that daily ultrasounds are pointless. AND she's going to get it changed so that I only go up there three times a week! Of course, those three days are going to be chock-full of appointments, but I'm ok with that.

One thing that I wasn't as thrilled with- she mentioned that she'd like to see this pregnancy go to term. Ugh. The thought of dragging this out that long makes me exhausted. But we'll see how that plays out, I guess.

And... Parker failed his ultrasound. Again. Not that they care, because like I said, these ultrasounds are pointless. They look for a few things, but the most important thing is that he's moving, which he ALWAYS is. (And can be determined without an ultrasound, if you can believe it!)

I would post my ultrasound pictures, but it is of his profile and his foot. Again. Maybe I'll make a flip-chart of his foot ultrasounds, and you can watch it grow. Otherwise they're just collecting dust on my desk!

Amy

Not much to report...

No news is good news, right? I've just inched past the 31 week mark and things are going ok. The 30 minute drive up to the hospital is not fun, and I get to do it (at least) daily. But I'd rather make the drive than live there, thats for sure! And I got to spend my newly 3 yr old son's birthday with him, so that makes me happy!

Parker is doing as well as can be expected. He's moving a lot. He has failed a few of the tests, but its more likely due to laziness than anything else. I had another fetal echo, which are pretty much considered the 'big appointments'. The cardiologist makes guesses on how he thinks the baby's doing, and then adjusts the plan accordingly. Parker is doing much the same, and the doctor alluded to maybe keeping him longer than the 32 week mark.

I have very mixed feelings about this. I really do care about my son's health. But with daily ultrasounds half an hour away, this pregnancy is dragging on forever. I'm spending approximately 60 dollars a week just on gas. And I am so anxious to meet my son. And to stop worrying about him on a daily basis, on whether he's moved enough or if I should call the doctor for each twinge.

I just wish I knew the plan!

Amy

more 3D

So with all my ultrasounds, I have a drawer chock-full of cute pics of my unborn child. Especially at first, I would end up with handfuls of black and white blurry images, and I would ooh and ahh and then put them in my desk drawer. As time went on though, ultrasound techs have to start getting creative. I mean, how many profiles do I need, right? And I think its safe to say he's a boy, I have at least ten images of the 'money shot'. A few times the techs have decided to do 3D ultrasounds, which I love. I get lucky about once a month, and today was that day! I love how chubby his cheeks are getting, and I love seeing his button nose. I think its interesting to see the difference in ages though. At 22 weeks, he resembled Gollum from Lord of the Rings, or at the very least an old wrinkly man. I think I would've cried if he came out looking like that! But he's getting cuter as he's baking! Here's 22 wks, 26 wks, and today at 30 wks!

And for the results of the ultrasound, everything is still looking the same, no change. Thats all we can hope for at this point!

Amy

Happy Happy! Joy joy!

I am HOME! And exhausted! But home!

I went in to the cardiologists today, and he said "wow, things are starting to look a bit better! The amount of fluid has gone down, and this baby looks fine. So we're good, you can keep staying in the hospital and we'll keep monitoring you!" And... I started crying. A part of me was hoping that the dr would say "Oh no! Lets deliver you today!" not because I want my son to get sicker, but I cannot stand to be in the hospital. I think its pointless, and just causing so many problems for so many people. My family is torn apart and its becoming quite stressful. Once the dr saw my tears, I think he realized that this was not what I wanted. So in an effort to stop the hormonal pregnant lady from sobbing, he told me I can go home if I abide by his conditions.

UHM, YES! Anything! Let me hear it!

So here they are:

1- I have to have daily ultrasounds up at that hospital. Weekdays, weekends, everything. They want to continue monitoring the fluid amount, and checking that he's moving. Basically, just making sure he's not getting distressed.
2- I have to go in for weekly fetal echo's with the cardiologists as well.
3- I have to also visit with the head of the high-risk doctors up there, as sort of a consult. They want to make sure that I understand everything that is going on.

So it will be tough, but I would so much prefer that than the current situation. It is tough staring into space, wondering when the next meal will come. Missing my husband and child. Feeling the guilt and the sadness of the situation. Dealing with VERY incompetent nurses (not all, I had a few I loved!) And the run-around as all million of my doctors and nurses tried to communicate, and failing miserably.

So instead, I get to sleep in my bed! And spend my son's birthday with him! And see my husband all week! And hug my kitties!

Of course, this could all change in a second. If for any reason, Parker's not doing well, I win a one-way ticket back to the hospital. But I will take what I can get.

Amy

Sleepover

It finally worked out that I could have Grant spend the night with me in the hospital while Grandma and Grandpa took Colby for the night. Colby had a wonderful fun night, and it was so relaxing and great to have a night with Grant, just the two of us. To feel him near anytime I wanted, to not have to say goodbye.

Grant didn't really enjoy the 'rest' he got, though. This pile of blankets? Thats him hiding from the lights and noises of sleeping in a hospital.
First of all, lets forget that his pull-out sofa is almost twice the size of my bed.

The noises I understand are HORRIBLE. That vent right by him? That is non-stop loud white-noise air. It never stops, period. And then, there's my bed. Its one of the hospital hydraulics beds, right? But about every five minutes, it 'goes off'. I liken it to an airplane about to take off. It slowly builds up in loudness and intensity, until about three minutes later it just shuts off. So when you're trying to fall asleep at night, either you're listening to it 'take off' or you're waiting for it to do so. SOOO noisy.

And the lights. There is a light in the wall that never turns off. Period. Its also right at my eye-level when I'm sleeping on my left side. So annoying.

And the best part, the constant visits from nurses and doctors. My night schedule is horrible. I go to bed at 11, and the nurses wake me up (with lights, noises, etc) at 12, 4, and 8 for a heart rate and also to get all my vitals. And for kicks and giggles, all the doctors file in about 6 am to say hi and see if I need anything.

So after my the doctors left at 6, I peek over at Grant and see him like this. Yeah, he'd never hold up to living in a hospital! But it was nice to climb out of my bed and go snuggle with him. Its the part I miss the most about home!

Amy

small bit of information...

They have stopped caring how low his heart rate is. They are just more checking to make sure he has one. (ok that sounds a lot worse than it really is. Oy.)

They keep monitoring me more for movement and to check that the fluid around his heart isn't getting too much bigger. They just want to make sure he's not in distress. If he is, they'll take him out.

And I LOVE LOVE LOVE my dr, she has informed them that she will be doing the delivery. I miss seeing her, so it will be nice to have a friendly face there at that moment when I'm scared and worried. So although its not her turn for rounds up here, she'll be there. Love her.

Amy

Today's update

Well, its hard to say, but I think I am 'settled" in here now. I have a few regular nurses that I just adore. I have caught on to the routine. I've survived a day. So I guess I will be ok.

Parker's heart rate dropped again. Geez, I wonder how many times I've said that on this blog. At my ultrasound today, they got a 48, 45, and 43 reading. Frankly, I am curious how low they are going to let it get. It makes me more and more nervous.

Plus I feel like I don't really have a doctor anymore. There's a million doctors looking at my case, but I don't think the communication is the best. I am being looked after by the local hospital doctors, with them updating the Primary cardiologists and my old doctors. But I think the local hospital doctors don't share information as well as they ought to. I am still waiting to hear what my doctors and cardiologists thought of the ultrasound, and the doctor was going to inform me ... 6 hours ago? Its kind of driving me nuts.

Luckily though, today hasn't been too bad. I have had a few visitors that have brightened up my day, and I love the people who are chatting with me online throughout the day too. It makes it go quicker and I don't lose my mind!

Well, I guess thats it. Its getting late and I'm running out of things to say!

Amy

Phew

This has been an insane evening, for sure. But is official, I was admitted into the hospital and will not leave until this child is out of me.

This has been so hard for me. I really really really do not want to do this. But if the dr's think its for the best, well I have to respect that. I have to do everything in my power to get Parker here safely. I would never be able to live with the guilt if something happens that could've been prevented by me.

Its been a rocky and difficult evening. Grant took me up with Colbs along for the ride. Colby was in a horrible mood because he hadn't gotten a nap and it was past dinner time. And it just seemed like the doctors and nurses were out to get me. I wasn't allowed to eat or drink. I have to have an IV. Cervix check. Group B strep swab. They changed my due date on me. I was just miserable and wanted to sit down and cry. This was not something I wanted, and it seemed like they were just making it worse.

The absolute hardest part though was saying goodbye to my son and husband as they left. I couldn't hold back the tears, which made my husband emotional. He wanted to just sweep me away and take me home, but it wasn't possible. And Colby was confused as to why they were leaving mommy hooked up in this bed. We said a prayer before they left and it was just so hard.

Fortunately though, things started happening for the better. The doctor came in and said they were moving me to a regular care room, instead of labor and deliver. I would have no monitors. No IV. I could wear normal clothes. And I could EAT! I would be allowed to wander the hospital, I just couldn't leave. And I needed to have checks on the baby's heart every 4 hours. I was more than happy to make that deal.

And now, well, things are good. I'm alone, but friends are doing so well and keeping me company online. I feel a bit better with how things are going. My stomach is much happier now that I've had some food. I feel comfy in my pajamas. I wouldn't say things are great, but they are definitely bearable.

Amy

What an emotional day...

So at the appointment today, things did not go well. Parker's heart is now beating at 48. Below 50 is VERY bad. Also, a bit of fluid is forming around his heart. Not a lot, but it is a sign of heart failure. The ultrasound technician left to go get a doctor, and due to a lot of patients she brought in a new dr I had never met. Apparently, this doctor did not know my background, and did not realize how huge these things were. How dangerous they could be. So she patted me on the back and said "see you on monday!" I walked out of there confused, but I figured she knew what she was doing.

I got home, and talked to my wonderful stepmother as she cleaned my house for me. She left, and as I was sitting down to lunch I got an urgent call from a doctor from the practice. She's not my main doctor, more the #2 of my case. She said she was going over the notes from my ultrasound, and panicked. She was not told of the results during the actual appointment. She told me to rush down to Primary's, so the cardiologists could have a better look and decide what to do. She said "you have been doing so well, we don't want to lose this little guy!"

I rushed. I ran. I cried a bit. This little guy has been having such a difficult time lately.

After a quick echocardiogram, the dr did confirm the previous findings. And then he dropped the bombshell. He wants me to be admitted to the hospital so they can monitor me closely. For how long? Until this baby is born. And he wants to get the baby to 32 weeks. At least two full weeks of sitting in the hospital alone, without my son and my husband.

What will I do with Colby? What will I do without Colby? I have no idea how I will make it. The thought alone is making me sob. In all my planning, I never thought that something like this will happen. I am not prepared for this. My son's 3rd birthday is in 10 days. I do NOT want to miss it.

The dr was going to call my dr to let her know of his thoughts, and I hope she talks him out of it. I really do. I would honestly prefer to deliver this child tonight than have to go through that. I feel horrible and selfish for saying that.

Right now I am just depressed and a mess.

Amy

*sigh*

Well, that was a completely exhausting day. I finally got home about 6, and after a second dinner (hehe) I just had to go to bed. My legs felt like lead and my brain was so fried.

Its kind of weird being in this position, but a small part of me is disappointed that he didn’t come last night. I know its better for his health to be in there longer, don’t get me wrong. But this entire thing seems so… draining. Going to appointments twice a week and playing the mental game on whether my son will be ok this week or not. Over-analyzing his kicks. Taking pills every 6 hrs that end up not doing a thing. It seems like every minute of my life is wrapped around this pregnancy, and I’m just sick of it. I’ll do it for his benefit, but I can’t pretend a small part of me wasn’t thrilled to get to ‘the next stage’.

And also, after the initial panic and heartbreak, I sort of got excited. I was going to meet my son! To see his little toes and fingers. To gently scold him for being so difficult, and to tenderly graze his cheek with my fingers.

But I guess it isn’t so. October 4 is just not his birthday.

Amy

Goin Home!

Well despite everything looking questionable, they're send us home. Parker seems to be moving fine, even though the other things are still a concern. If anything, they're just going to monitor us a bit closer, maybe 3 appointments a wk? LOL great...

So exhausted. What a long day!

so far...

not much to report. theyre trying to monitor me but can't get his heartbeat with regular stomach monitors. they took me in for an ultrasound that told them nothing new. hes still measuring small and still has a slow rate.

and they gave me food! i have not eaten since ten pm last night, and that was a cookie. this morning i had my glucose test so i didnt eat, and then after the horrible appt i wanted to not eat in case i was rushed right in to a c-section. now its after 4 and i am delirious with hunger. 18 hrs of no food. but the fact that they gave me food means parker wont be here too soon.

so just waiting, watching, seeing what is going to happen.

amy

what a horrible monday.

sorry in advance for the lack of capitalization, i am typing this one handed while in a labor and delivery room.

today at my twice a week appointment ... well it didn't go well. They did measurements and discovered he's measuring at 25-27 weeks, which is pretty bad because he is supposed to be right at 29. so they checked out the umbilical cord, and I guess its not working up to speed. they think that he's notbeing given the nutrients he needs to grow, which is really bad because of the heart thing. Also he has decreased fetal movement, we could barely get him to move even after taking the nasty glucose drink.

So my Dr. wanted me to go to the U (where I have to deliver) to monitor him and potentially deliver him. We are currently at the U of U hospital, and hooked up to all sorts of monitors that can't find the heart beat (we can hear a lot of movement though).

At this point all we can do is wait and see. We are worried, but hopeful.

The really ironic thing is that it has been exactly 10 weeks since we first got the initial "something might be wrong" ultrasound. We were really hoping to keep him in as long as possible, and at this point we are just hoping for the best. We will try and keep you all updated.

Amy and Grant

Yet another...

appointment. I think I need to start getting creative with the names. Its become quite boring and I know everyone keeps seeing 'appointment' in their bloglist. So lets say I had another meet-up with the docs.

This was my son:



No kidding, he would not hold still. The doctor was getting the biggest laugh at it. At one point she said, "he just shook his booty!" It was pretty funny to watch.

And... his heart rate was up. But we think that it might have more to do with the fact we caught him during a dance concert and less that it means anything. Parker was in a very happy mood!

And, we really don't know whats up with the 24 hr monitor that the cardiologists want to put on me... my dr said she has never heard of that, and the only way she'd be capable of that would be sending me to labor & delivery to sit for 24 hours. And thats just not something I'm allowed to do, because if I ever went into L&D with the heartrate so low they'd immediately deliver me thinking something was wrong with the baby. I'd have a mask on before I could even explain!

Well, thats it for now. Next appointment set for Monday, and I plan on doing a TON before then to prepare for the P-dude.

Amy

A big appointment...

Well, I'm absolutely exhausted. Its been a long day and I am beat.

We had one of our bigger appointments today, a fetal echocardiogram up at Primary's. For those that don't know, a fetal echo is where they literally just stare at the heart. Its a very long and pretty dull appointment. By the end of it my arms have gone numb and my neck hurts from stretching to see. They also have a harder time viewing as his ribs are getting harder and causing shadows on the heart. After awhile, the dr comes in and takes a look too. And then they direct you to the 'bad news' room, a small room with a cushy couch and a box of tissues. They won't really tell you anything until that room. They also call in a social worker and a 'patient advocate nurse' to give you support and make sure you're feeling ok.

After they sat me down (I went to this appt alone) they gave me the news. The pills were pointless. They did nothing but give me the jitters and a headache. The one high heartbeat rate I got was a fluke. Although to make sure, they want me to do a few days of 24 hr heartrate monitoring, where I wear a belt all day and night. If anything happens, a peak or spike after the pills, they will keep me on them and raise the dosage. If not, they'll take me off it.

They will continue monitoring me twice a week to check for hydrops, or any sort of swelling. If they form, they will take him out. If they don't form? They'll still take him out at the end of October. They want to get him to 32 weeks. That is Oct 22. There is just so much more than they can do for him out. He's also easily monitored outside, where if something goes wrong they'll know quickly and can respond quickly. They would do it sooner, but 32 weeks makes him so much bigger, stronger and healthier that they'd prefer to wait.

Thats right, no more than four weeks and I will meet my little guy. I am so nervous and overwhelmed and ... I don't even know. I always assumed it would happen, but to get verification from the doc is so huge. I'm trying to think of everything I wanted to get done, and deciding whats important and whats not.

So.... thats where we are.

Amy

Quick little funny

My friend lent me a doppler to use for this pregnancy, and I admit its been a relief sometimes to hear his little heart. I bought a new bottle of ultrasound gel, and I had to chuckle. On the bottom, perfectly clear, it said "Parker". Is that where I got the name? No. Plus, my mom is not too keen on the name Parker. Think of it like this, at least I'm not naming him Aquasonic!

Although, come to think of it, that'd be pretty cool!

The low-down

Well, lots has been changing, plenty to say.

The pills stopped working, so to ensure his heart rate stays at a healthy place they will be upping my dosage soon. Hopefully this will last a bit longer than the last dosage, but there are no guarantees.

After they stop working (again) the doctors will take him out. The result of this? Parker will most like (95% chance) be a preemie. We'd like to keep him in there as long as possible but at that point it will be safer for him to be out than inside my belly.

I was given the steroid shots for his lungs a few weeks ago, so hopefully he'll be a healthier preemie.

I will be delivering at the University of Utah so he can be rushed to Primary Children's, where the fantastic cardiologists over there will treat him. He will be getting a pacemaker. I am not quite sure how old he will be when he gets this. I imagine they'll wait until he is at least 1 or 2 days old, but it is important that it be quick. His little body and heart have been working so hard to stay healthy, that time is really of the essence.

Having a pacemaker will make life difficult for awhile, because there are quite a few restrictions that we need to be on the lookout for. He won't be able to play with magnets, so we're going to need to get rid of all Colby's magnet toys and he will not be able to play with our cell phones, and even some remote control cars are too strong and can alter the pacemaker. There are other things that he cannot do in his life- play football, work on a car under the hood, get the wand from airport security, a few medical procedures and tests that use magnets, we cannot hover by the anti-theft devices in doorways... just all completely random things that can alter the way the pacemaker works.

A pacemaker can last anywhere from 3-5 years on battery life, but as he grows older he will need a few more surgeries to replace the pacemaker. A battery replacement surgery isn't a big deal, just a small slit in the skin. I imagine his first pacemaker might stay in there 1-2 years. We'll have to see how it goes and if it is strong enough before we can say for sure.

And now, the million dollar question that everyone always asks- how are you guys doing? Well, as a family, for now, we are fine. We understand that big things are happening and we are trying very hard to stay calm about it. We go to doctors appointments twice a week, and this causes a lot of stress (usually because we don't have 'good news' appointments as often as the 'not so great news' appointments) But we're holding on and thinking good thoughts for our little guy. We know that worry won't do a whole lot for him, so we try to avoid it.

And thank you thank you thank you to all those who are trying to make our burdens lighter. So many well-wishers and special helpers have definitely made this journey easier. We haven't taken up many people on their offers to help, but even offers make us feel good, to know that we are loved! We appreciate it so much, thank you!

Way to go, Parker!

Well, I have been on the medication now for almost two weeks. At first, it didn't look like it was working. His rate was still in the 50's. However, at my last appointment, it shot up to 75-79! This is huge, it hasn't been that high in six weeks! I am so proud of my little guy. It would be so easy for him to just quit, but not my Parker. He's stubborn and bull-headed (much like his mommy) and wants to do things his own way.

Looking forward to that number staying high... The medicine won't work long term but I wouldn't mind another month or two at this higher level.

Hehe, it feels like Parker's having his first set of hiccups. I'm so glad to be pregnant with this little guy!

Amy

3D pictures!

While at my last appointment, the lady was nice enough to give "Colby" some 3-D pictures. He was so thrilled to see "baby Parker TV!!!" that she wanted him to get a good view of his little brother. I am so grateful, I loved seeing the little guy growing inside of me. In just a few short weeks his 3D pictures have gone from gollum/alien to adorable little infant. I think he looks a bit like Colbs, especially the nose, what do you think?

(love his little grimace here!)

Parker's Heartbeat Comparison

I wanted to do this comparison to show Parker's heartbeat (aka incredibly slow) compared to a normal heartbeat. His is about 52 beats per minute (as of our last ultrasound) and a normal one is between 110-170. This example is about 150.




Here is Parker's, with one of his ultrasound pics.

All About Parker!

We found out we were pregnant with him on April 7th, and we were absolutely overjoyed! We first saw him on our anniversary, May 19, with a tiny little body. I was always so sick, he gave me a lot more morning sickness than I ever had with his brother, Colby. We were thinking it was a girl, because I had tons more symptoms than with Colbs. However, on July 26, we were very shocked to see he was ALL boy. He seemed so proud of his parts too. LOL

Unfortunately, at the same appointment, we found out that his heartbeat was a bit... slow. It was 70-90, when heartbeats should be between 110-170. They wanted us to go to the perinatologists, or 'high-risk' dr's, just to be safe. So two days later, we had another full on ultrasound. They confirmed he had a low heartbeat, and gave us a 'guess' that it was a heart block. We would need to go to Primary Children's Hospital to get a fetal echocardiogram, where they would get a better look. At this appointment they confirmed his congenital heart defect, and diagnosed it as Complete Heart Block. The heart is formed perfectly, its just slow.

However, he's going to be just fine if his heartrate stays up. He is such a happy and active baby. He is always kicking. I have ultrasounds twice a week now, and at every one he is rolling and squirming. This kid never stops! It feels like I already know him so well. He is such a little fighter. He is always kicking and punching my waistbands, he hates to feel them on him. He is so strong, and getting stronger by the day!

The outlook right now is unknown. His heartrate has slowed down even more, so I will probably be getting on medication to speed it up. He will probably need a heart surgery soon after birth to put a pacemaker in. We love our little guy and look forward to the day when he can hold and snuggle him!