Tales from my life as a mom of 2 sons and 2 daughters


Cheli On Monday, April 28, 2008

It's been a while since I updated...

First I thought I'd share 2 pictures Doug too of me today. I am 28 lbs down from my PRE-pregnancy weight :)



I still have a ways to go but I am getting there :) And I am SO happy about it!

Next.. Doug graduated from school on Wednesday!!!! WOOOT!!!!! He takes his national exam on Thursday so if you could all keep him in your thoughts I would really appreciate it :) We are very excited for this next stage in our life and are hoping that he passes with flying colors.

Journey is 10 weeks old (2 1/2 months) now. It's amazing. He's slowly becoming more of a person and less of a baby blob which is fun. He still doesn't like to be put down for any length of time and if you do put him down he protests very very loudly for quite a while but eventually gives up and goes to sleep. He seems in no rush to go anywhere or do anything as long as mommy or daddy will hold him. But we're getting more and more smiles which is such a wonderful treat :)


He goes tomorrow for 2 shots since we didn't get the shots 2 weeks ago for his check up because he'd just gotten out of the hospital then and we didn't want to get the shots right after all that ordeal. We aren't going to get all of the shots that they "recommend" for babies because of our research and beliefs but the 2 we are planning to get we'll get tomorrow and I'll get to see how much he's grown :) I can't wait.

River is sick. He's been sick for a week now. Not really sure what's wrong with him. He had diarrhea for a week with NO other symptoms. No tummy issues, no throwing up, no fever, nothing.. just the yucky dipes. No idea what's causing it. We took him to the doctor last Friday and she said that it might just be a bug passing through or it might be a new intolerance to milk popping up. If it's not better tomorrow they want to have him come in. I don't forsee it going away over night but who knows. He is currently 32.6 lbs and 37 1/2 inches.. the size of an average 3 year old LOL. He's super tall and he is soooooo smart it's scary. We can now understand pretty much everything he says. And he knows his ABCs and can recognize about 1/3 of his letters. He is amazing. I'd share a new pic of him but he doesn't sit still long enough to get a pic of him. Here are a couple



Cheli On Sunday, April 20, 2008

Here are few pictures of Journey man smiling :)




And a picture of him being cute :) LOL


Now the fun ones.. here is a picture of Journey at 2 months and River at 2 months.

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Cheli On Friday, April 18, 2008
Journey had his follow up with the cardiologist today.
He is 11 lbs 1 oz (which is a 3 oz gain in 2 days LOL) and 22 inches long. The nurse measured him twice because she said there was NO way he had grown that much in the month since they had seen him. He was 51 cm when he was last seen and now he's 55cm (2 inch growth). So yeah they are pleased as hell that he's growing so well.
Cardiologist came in and listened to his heart and said he can still hear the murmur pretty well so let's get another echo done. Which he was going to do anyway to get a baseline gradient number on his heart for their records. Well the baseline the hospital gave us when we left was 32 (down from 80). Today his gradient level was 20! WOOOOT. Which the doctor said is a mild case of pulmonary valve stenosis. He said he has very little back flow/leakage at the valve which is AWESOME. He couldn't be happier with the results of the surgery.
He is glad that I got a list of all of the medications he was given during the surgery because his reaction was very abnormal. He said that he needs to take the antibiotics before any procedures but not for life just for the next 6 months really. He wants to see him back in 4 months (August 9th) for his next echo. But he has high hopes that it will continue to stay the same or possibly keep correcting itself. YAY!!!!
Cheli On Wednesday, April 16, 2008
OK so we had Journey's 2 month WBV today.
He is 10 lbs 14 oz and 22 inches long his head circumference is 39cm ( weight is 25-50%, height is 10-25%, head is 25-50%). He has gained 1 lb 9 oz since his 1 month appointment. He didn't get any shots today because she wants to give him a bit more time to recuperate from the hospital stuff. We told her we will be getting on the DTaP and Polio vaccine right now. We denied the pneumonia and rotovirus and Hep B all together and will delay the HiB for a while. He'll go back next week for the 2 shots. Then we go back at 4 months sometime in June.
She was SO excited to see that we cloth diapered and was very happy that we were breastfeeding. She said it's rare to see either these days. :)
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Cheli On Friday, April 11, 2008
WE'RE HOME!!!!!!!!
OK so they gave him pedialyte 2 nights ago to try and get him back to eating since he was acting more like himself and was pissed because he was hungry. He sucked down the pedialyte and then proceeded to puke it all up. They put an NG tube down his nose to try and suck some of the air and what not from his belly. 2 hours later they tried an oz of water... threw that up.. more suctioning with the NG tube. 2 hours later they let me try 15ccs of breastmilk. He kept it down and was PISSED that there wasn't more. So every 2 hours they let us give him another 15 cc of breast milk and he kept it all down. At 6 am yesterday they told me that I could try and nurse him (finally) and see how he did with it. He was a HAPPY boy after that.. he nursed himself into obilivion and never spit up a drop. The NP actually laughed when doing rounds that morning and telling the doctors that the only thing he didn't spit up or gag on was the breast milk :) My boy knew what he wanted LOL
They did a repeat echo of his heart yesterday to get a "baseline" gradient to send over to his cardiologist here so that we can monitor it and see if goes back up any with his future echos. His baseline gradient is 32. A normal heart has a gradient of 20 or below. So even with the catherization he is still considered mild/moderate pulmonary valve stenosis. As long as his gradient stays under 40 they won't have to do anything. If it goes back up over 40 they will probably send him back to Gainesville for another catherization. If that happens then they will watch him closely again to make sure it stays down. If it were to go back up a 2nd time (any time in the future), it's a 2 strikes your out type thing with the catherization and they would not attempt to do a 3rd. At that point they would want to have him get a valve replacement (open heart surgery). As of right now he is now on any medications but the doctor said that pretty much that will change eventually we just don't know when and that realistically sometime in his life he will have to undergo open heart surgery for a valve replacement. For a reference.. his gradient before the surgery was 80.
His hematicrit level stayed at 30 all through that night. Which is good that it wasn't going down but they really wanted to see it go up which meant that his body was starting to make it's own red blood cells. They did the last draw for his levels at noon, through a foot stick because his central line stopped working @@ and his level was up to 34 :) So they decided since he was eating well, blood looked good, heart looked good, he could come home yesterday WOOOT! So we got released about 3pm and got home about 4:45.
River pretty much acted like we'd never left LOL so I guess he adjusted fine. His lip looks horrible from where he fell while we were gone but his teeth all look fine. Apparently they were afraid he's actually knocked one of his front teeth loose but I put my finger in there yesterday and nothing wiggled.
I went to bed at 10pm and didn't get up until 10am *minus feeding Journey of course* I feel much better today.
Cheli On Thursday, April 10, 2008

Didn't have much of a chance to update today (yesterday?) so I'm doing it now.

He did end up getting the transfusion of red blood cells because at his lowest his hematacrit dropped down to 18. After the transfusion of one unit of blood it was up to 30 and when they checked his blood gas levels and hematicrit later it was still holding at 30 which is good but not great. They really want to see his numbers start to climb on their own because that shows them that he is taking over responsibility of making blood cells. They ended up waiting on the MRI for now because the MRI people said that he will have to be sedated for it and no one is comfortable sedating him right now until he is more stable. They ran a battery of tests today, abdomenal ultrasound, quick echo, abdomenal xray to try and figure out where the hematicrit is going... everything came back normal so we still don't know.

They tried to allow him to eat yesterday, he inhaled 2 oz of pedilyte and then puked 4 times directly afterwards. So they had to put an NG tube down his nose into his belly and hook it up to suction to try and get some of the air that is in his belly from being intubated out. After a few hours they tried to give him an oz of water just to see how he did with it.. again he puked so he was hooked back up to the suction and left that way for a few hours. This evening they let us try some expressed breast milk (only half an oz) and he held it down. He's since then had 2 more feedings of half an oz a piece and has held both down. He was sleeping with Doug in the sleeper chair when I left them. They are watching his O2 stats closely because while he's resting his O2 stats keep dropping down to 88-90 and he should be stating at about 98-100 at all times. So they are going to watch him. Sometime tomorrow we're going to get an indepth echo done to check the gradient of the valve and make sure that the catherization still looks successful etc..

Other than that we're not really sure when we'll be coming home now. They said that they won't be releasing him tomorrow *today?* unless he drastically improves tonight and I don't think he really has so more than likely we're looking at at least Friday for a release date.

I'm ready to go home. I miss my River.. We got a call from Linda today stating that the daycare called her and told her the River fell on the playground and either chipped/cracked his tooth and busted his mouth. My poor little man. I miss him so much. I want to be home. I want to put this behind us.

I came down to the Ronald McDonald family room hoping to be able to sleep but there are people in the sleep chairs so there is no where for me to lay down. This sucks. I've got about 3 hours of sleep since Tuesday morning.

Cheli On Wednesday, April 9, 2008

OK let me see if I can update with out turning this into a novel...

CT scan last night came back normal. He has had no more breathing problems other than the fact that his respirations keep slowing down to abnormally slow levels and then speeding back up. The latest problem is that his hematicrit level is dropping. It's supposed to be a least 40 for a baby his size and age, when he was admitted yesterday his level was 28. Already low.. well every 4 hours since then it's gone down. This morning his level was 20. Too low. So they are going to give him a blood transfusion here in another hour to try and help out. They are also going to do an abdomenal ultrasound to see if there is anything going on in his abdomen (read: internal bleeding). And they are going to do an MRI of his brain because he still isn't acting quite right and his pupils went from sluggish to react then to a normal reaction time and this morning they are back to sluggish. *sigh* We just keep hearing a lot of "we have no idea what's causing this" but he is stable, he's not in any immediate danger so that's a good thing. They are going to give him another round of Lasix this morning to help pull more fluid off of him since he'll be given fluids with the blood transfusion. He is no longer on the Narcan and is still holding steady. They said they should be able to take the pressure dressing off of his right leg today but he still has the central line which will stay in his left leg until he is ready to leave and a catheter. He is sooo bruised for all the places he's been stuck and I still haven't been allowed to hold him let alone nurse him. I am MISERABLE. I slept about 30 minutes last night, I let Doug get some sleep instead. So that's where we stand right now, hopefully we'll know more after the testing. I'll update later.

Cheli On Tuesday, April 8, 2008

OK so we were finally allowed to go back to the PICU to see him. He looks like the Michelin Baby at the moment. He is severely swollen because of water retention. They weren’t able to get an IV started so they had to put in a central line in his other femoral artery so that they could give him Lasix (a dieretic) to releave some of the pressure. While he was swollen they noticed that his fontanel (soft spot) was very tense. Which makes them concerned that there was water on his brain or too much pressure on his brain. So they have taken him down for a CT scan of his brain. We figured we’d come update you while we had a moment.

My brain isn’t functioning at the moment... I’ll try and update more when we know something.

Cheli On

I have a minute while they are getting him transferred to the floor because I wasn't allowed to go with him.

He stopped breathing when he was in recovery. They think that it was because of the narcotics but really don't know because it'd been longer than the window that they would have expected a reaction like that. The nurse was getting ready to hand him to me to nurse him and was explaining about his pressure dressing and he went to cry and kinda turned dark like babies do in that moment before they take a breath and start screaming only he didn't take a breath.. he just went limp and then didn't start breathing again after he passed out. So they called the recovery team, asked for a bag to start breathing for him and gave him a drug called Narcan which basically counteracts all the pain meds in his system. As soon as the Narcan was pushed through his line he started breathing again. Then an hour later he stopped breathing again so they gave him another dose of Narcan and he started back breathing again. 30 minutes later he started to go gray again and his oxygen levels dropped into the 60% so they gave him a 3rd dose of Narcan and decided that it was time to send him to the PICU *Pediatric Intensive Care Unit* to be monitored. They also gave him a respiratory medication with a steroid and some epinephine in it to try and ease any swelling in his throat that might be blocking him from breathing right. His heart rate keep dropping into the 70s every time he calms down so they are concerned about that as well. They have tried to get a blood oxygen level done through blood and some labs to check for liver function as they think there might be something going on with his liver to make it so that the meds aren't being metabolized. But after sticking him 5 times they only got one sample and that took so long for them to get it that it had clotted and was useless. *sigh* So I don't know what's next. They are getting him set up in the PICU now and will monitor him tonight. They are still talking like we'll be able to come home tomorrow but who knows.

The surgery itself went great once it got going. His heart is already working a ton better they said. He'll get another echo done tomorrow to check the gradient and valve again and hopefully we'll be able to head home. I'll try and update again later once we know more

Please keep him in your thoughts/prayers...

Cheli On


I'm writing from the hospital computer that they have for Ronald McDonald House Guests and PICU family members.

Journey is in surgery right now. They ended up not taking him back until 8:30am @@ He was LESS than thrilled about the whole mess (mostly because it'd been almost 5 hours since he'd eaten and he was starving). We were given a pager for when they have updates and the nurse practitioner is going to come out and give us updates about once an hour.

We got to Gainesville yesterday and went to straight to the cardiology lab for another echo *his heart has gotten a little worse yet again according to the echo* and he was weighed *10 lbs 11 oz* WOOO HOOO and 21 inches long. YAY! The doctor went over all the risks with us and told us more about his condition. Apparently he WILL have take antibiotics before any medical proceedures now. He will still be able to do anything he wants as far as activities though. And eventually he will need a valve replacement, whether that is in the next 10 years or 20 or 30 years from now we don't really know. He'll see the cardiogist for follow ups for a while once a month and then they'll start to space out again.

After the cardiology clinic we went to the radiology department for a chest xray to make sure that everything was okay with his heart other than the valve. Then we went to talk to anthesiologist about their part in todays surgery etc. Finally at 6 we were able to go find out if we could go to Ronald McDonald House (we were able to). He'll be kept for at least tonight and released tomorrow as long as there are no problems. I'll try and update more later.

Cheli On Monday, April 7, 2008
We are leaving here in about 30 minutes for Gainesville.. I'm a nervous freakin wreck. I was not this nervous when River had his surgery on his ears, why am I so nervous now?? For those that have our cell numbers... please feel free to give us a call. For those who don't, please keep us in your thoughts tomorrow. Journey's surgery is scheudled for 7am as things stand right now.
Cheli On Friday, April 4, 2008

7 weeks already!!!!! It's flying by. I wish it would slow down. Journey is doing amazingly well at night. *knock on wood* the past 4 days he's slept 9pm until 3am or later (last night it was until 4am--7hours baby!!) and then wakes up and chows down and goes right back down from about 3:30 until at least 7:30 sometimes as late as 9am. He sleeps in bed with us in his snuggle nest and seems to love it. Which excites me to no end because River wanted out of our room at 5 weeks and did much better on his own terms. *shrug*. I'm a littler nervous, anxious about when he outgrows the snuggle nest and is actually sleeping in the bed with us with no barrier... but I guess we'll figure that out as we go. He still HATES to be put down for any length of time. I'm determined to give him tummy time every day though which pretty much turns into 3- 10 minute blocks of him screaming until he passes out for a half hour or so. But he can hold his head up when on his belly and he has great head control when we are holding him so I guess just that little bit of time each day is enough. I'm still eagerly awaiting his first smile. It seems like it's taking him forever to smile. *sigh*

River is doing good. He seems to be going through the "terrible 2's" now. He isn't listening at all and whenever we tell him to do something he tells us "no". He has spent alot of time in time out needless to say. He KNOWS what he is doing is wrong because he's a smart little boy but he CHOOSES to do them to see what we do. I hate this testing limits stuff.. I want my sweet boy back. He amazes us every day with the stuff he is learning. He knows about a third of his alphabet. He can count to 10. He knows his colors. He knows his shapes. He can sing twinkle twinkle little star. I love it. He has taken to using a bit of sign language to convey what he wants. He only uses the signs for "more" and "eat" even though he can say both words clearly but it's pretty cool to see him do it. He is showing more interest and more readiness for potty training. We aren't really pushing it though because he's still only 25 months old but with in the next few months he'll probably be ready to begin potty training in earnest. Which totally thrills me beyond belief as having 2 in diapers is for the birds.

Yesterday was a big day for me. I had my bankruptsy hearing. It went great. I should get my discharge papers in about a month and then the only "debt" I'll still owe are my student loans. Which I'll be paying on until the day I die I'm sure. I then had my 6 week post partum appointment with the OB who did my surgery. I have lost 30 lbs since Journey was born. I still have 30 lbs to go to reach my first major goal but I'm half way there. I already feel a ton better. I don't think I'll ever get down to the size that "they" say I should be for my height but oh well. At least I'll look better than I ever have in my life and there is something to be said for that, right? We also talked about birth control options and what we wanted to do. After discussing pros and cons of all the choices and what would work best for me. I've decided to go with Mirena for birth control. I'll go back on the 17th as long as all my cultures from yesterday come back clear and get the Mirena put in. Then we won't have to worry about it until we're ready to have it removed to try for our 3rd (and last) baby in a few years. The plan is to wait to try for a 3rd until I'm done with my associates degree. Which will take me about a year or so to complete. I don't want to think about trying for another until Journey is about 18 months old. I think I want a little more space between them then is between River and Journey (24 months).

Other than the fact that Journey's surgery is next week and I'm scared to death about it.. life is good. I hope it continues to stay that way.

Cheli On Wednesday, April 2, 2008
They just called to schedule Journey's surgery. He is scheduled for 7am Tuesday April 8th *next tuesday*. We have to go up there Monday afternoon for testing and another echo and to get registered and then we'll either stay in a hotel or Ronald McDonald house on Monday night and his surgery is at 7am Tuesday morning. Nothing to eat after 2am. It will take about 3 hours. Then as long as there are no complications he will spend the night in the hospital for observation on Tuesday night and come home sometime Wednesday. If ya'll could please keep him in your thoughts.. I'd greatly appreciate it. Off to go spaz out until Monday.