One week later

Jayce gets his last round of antibiotics this morning and they will hopefully pull the IV tube early afternoon. He's doing really well with the tube feedings but they tried to give him a bottle last night and he didn't know what to do with it. So looks like eating on his own might be a little more difficult than we expected. They said that he's had so much negative stimuli in his mouth that he needs to relearn that baby sucking reflex. We are going to work with an OT today and I hope to make some progress with either breast or bottle feeding.

He also keeps putting on weight...which really isn't a good thing b/c it means that he's retaining water. They mentioned giving him a diruetic so he can get rid of all that bloating and puffiness that you saw in yesterday's picture.

But all the nurses are excited to see him get dressed in a Halloween costume. Most of the babies in his unit are in incubators and are so fragile. He easily outweighs them by 4 times! I think the nurses really like working with him, especially b/c you can see so much progress each and every day. Must be rewarding to work with a baby like him.

I also wanted to say thanks for everyone's support. It is so nice to know that we have such great family and friends helping us through these difficult times. We really appreciate it!

Big day for Daddy!

Today, was a big day for Keith. He not only changed his first diaper but he got to hold his son for the first time. Jayce had another good day. They reduced his sedative to the lowest setting and he did really well. Keith and I took turns holding him all afternoon and he basically slept the whole time in our arms. He's up to 30 ccs of milk and seems to be tolerating the increased amount very well. If tonight goes well, they will remove the IV line in his belly tomorrow and he'll actually start eating normally. Hopefully if that goes well then they'll remove the feeding tube that goes through his nose. So tomorrow looks to be a big day. They are hoping that with the increased food he'll start passing some stools and get rid of his jaundice. We're hoping to dress him up in a costume tomorrow for Halloween. I think we're going with the pumpkin one that Chris & Michelle got us as that would best match his yellow/orange color! For now, here's another picture of the little one....a little puffy and yellow. Can you tell he his Keith's son!

What's next?

So now that Jayce's has almost conquered breathing we now need to work on eating and weaning off of all the pain & sedation medicine. He's only getting a small bit of sedation drug but they think that when they remove him from that he'll need to go on morphine for a while until the pain from having all those tubes in him reduces. The morphine is a better way to go as well b/c then they can get rid of the IV line that is going through his belly button. We only have a few more days before they need to remove that line anyways for safety reasons so hopefully they won't have to replace it with another IV line somewhere else. This kid has been pricked & poked enough. He's also almost completed his run of antibiotics. Now that they don't think it is a bacteria pneumonia they aren't as concerned about the antibiotics. Supposedly they can run a 5 to 10 day regimen of the antibiotics (which goes through his belly button IV line). Today would be day 6 so we are hopeful that the IV line comes out today or tomorrow.

A wonderfull night...........

Jayce continues to make improvements!!!! Yesterday turned out to be the day of many good surprises. They removed his tube then put him on Cpap (prongs into his nose to provide positive pressure) then our second shift nurse, Laura, said he was just to uncomfortable with it. (we like Laura, she is no nonsense and gets things moving so Jayce can be more comfortable) So at @ 11PM last night Jayce was taken off the cpap and just put on oxygen. Another major tube gone! His O2 level is is up to 45% but he is doing all the breathing on his own. A major step forward. We also got to hear his weak cry for the first time last night, he sounds like a chain smoker but it was sweat music to our ears (might be the last time we say that ;) But the biggest event was below:




A perfect 17 hour day in the NICU...................

He's on his own!

So around 7:00 tonight they decided to take out the breathing tube. So Jayce has been breathing on his own for a few hours. They are supplimenting his air with 30% O2 through a tube in his nose. This air basically provides pressure to keep his lungs open but all of his breaths are his. We are hoping that this tube is just a transition to regular breathing without any tubes. For tonight they are going to leave him in this condition and take a couple more blood gas readings. Hopefully the readings show that he is processing the reduced oxygen properly and they won't have to put the breathing tube back in tonight.

He's also showed us his eyeballs a few times tonight and spent a bunch of time looking around at his surroundings. We are also working on his sucking reflex by giving him a pacifier (or a fu-fu) as Trent & Jessica call it...which Keith apparently thinks is fun and wants to call it a fu-fu too! If he continues at this rate they might be able to give him a bottle tomorrow and see how he works the coordination between eating and breathing. One day at a time!

10/29 Update - He continues to be strong

We got here early today so we wouldn't miss anything. We were hoping his breathing tube would be taken out earlier today but it has been delayed. It might be at 10PM but time will tell.... Otherwise he has been doing great! His O2 is down to 35% (the goal is 21%, normal air) and the blood gas measurements have been excellent. The next blood gas is at 10PM.

He is much more awake so he does not like the breathing tube at all. The nurses had to change the tape holding it to his head today and 2 of them could barely keep him down. They would restrain his hands but he would get them loose and go right for the tube. Tons of energy!!

He started eating today via a tube going down his nose into his stomach. 10 mL of mothers milk every 3 hours. His catheter was also removed and for the guys reading this he's got to be really happy with that since it did not look comfortable.

So we will be having dinner here again but we were smarter today, we brought homemade food.

Love to all T&K

10/28 Late PM Update

Jayce had a really good day!

He was able to decrease is O2% down to 40 and assisted breaths down to 20. He is breathing more on his own now. They also decreased his sedation so he has been awake and moving a lot. He sure wants that tube out of his throat, he grabs it any chance he gets.

We got to see his eyes very briefly today and he was holding on to our fingers. The last time he did that was five days ago when he was born.

As of 10PM tonight they were going to hold him stable until 4 AM tomorrow to make sure his body is fully adjusting. So tomorrow has the potential to be a big day were they might remove his breathing tube!!

We will post more tomorrow, its time to get some sleep.

Monitor Run-down

Here is a picture of the monitor that Keith was talking about. The first line at the top (green) is his heartbeats per minute. This number should be in the lower 100's. The second line (pink) is his oxygen level after going through his body and before returning to the heart (this is measured on his hand). This number should be above 95. The third line (red) is his blood pressure. We want the average number in parentheses to be in the 40's. The fourth line (blue) is his oxygen level as it leaves the heart (this is measured on his foot). Again we want this to be above 95. The last line (yellow) is his breaths per minute. In this case he was asleep and only taking the 32 assisted breaths. When he is awake this number can go to 60 beats per minute. What you want to see is full top to bottom breaths like in this shot. The breaths he takes right now are only 1/2 of the depth they are supposed to be.

Update for yesterday afternoon (10/27) and last night

Yesterday afternoon went much better for us and Jayce. The docs decided to take a different path with him. They tried to reduce the O2 a couple of days ago without much success so now they are reducing his sedation slowly so he can become more awake. The ultimate goal is to get him breathing completely on his own so they can remove the breathing tube. Then they would work on reducing the O2. Since he's been waking up, his movement is working free a bunch of the crap in his lungs which they are suctioning out of him, this is very good. He needs to get his lungs clear and hopefully that will help him tolerate the reduced levels of O2.

He was moving alot yesterday and he was sooooo close to opening his eyes. He could just about hold your finger and was tying to turn his head. When the nurse was changing his diaper he pulled up his legs just to be a little bit difficult. It made us very happy to see that. Taryn also read him his first book, "Oh, Baby the Places You'll Go!" that goes through all the Dr Seuss stories briefly. This book we read to him while in utero so we are hoping it is a familiar story.

Last night they further reduced his sedation (O2 still at 100%) and he has pooped twice (first time since birth). He is still jaundiced but the bowl movements should help that. And they also removed the second hand IV so his little hands are at least free of tubes now (ready to grab some wires!).

Jayce in NICU

This was Jayce yesterday in the NICU, poor guy has so many lines in him...... One of my favorite things to hold is his big right toe (the foot w/out the blue wrap).

Here are all the technical details to date on him.
He has Pneumonia which is an inflammation of the lungs. It could either be caused by bacteria or by inhaling an irritant (like blood). So they have him on broad spectrum antibiotics for the bacterial possibility and if he inhaled something at birth (blood, amniotic fluid, mineral oil etc...) they are testing for it but it most likely needs to work itself out of his lungs.

The main vitals we are watching is %O2 into his lungs, O2 saturation in his blood, # of breaths assisted by the ventilator, then # of breaths he is doing above the ventilator set #, blood pressure and pulse. They do a blood gas sample @ every 4 hours to determine his progress. The goal is to get him on normal air (@21% O2) and breathing unassisted. So they will slowly bring down his O2 input % @ 5% an hour and watch the blood gas sample to make sure his CO2 levels and O2 saturation are OK. They brought him down to 75% yesterday but that didn't last long, he was back up to 100% by night time. So they will keep trying to push the envelope and see how far he can progress over the following days.

The # of assisted breaths (he is breathing on his own but this helps to give him fuller breaths) went from 30 Friday AM to 26 Friday noon (down is better!) then up to 34 Friday PM / Sat AM These changes were determined by the blood gas sample and % of CO2 in his blood. The higher the CO2 level the more assisted breaths they give his to help clear his blood, this means his lungs are not being as efficient as they should to scrub the CO2.

So it’s this balance between %O2 into him and # of breaths assisted that they are tweaking. It’s been the longest 67 hours of our lives.

The biggest worry over the first 48 hours was PPHN (Persistent Pulmonary Hypertension Of The Newborn) (http://depts.washington.edu/nicuweb/NICU-WEB/pphn.stm) but the Docs feel good that he passed this and we just need to deal with the pneumonia.

I will take a pic of the monitor today so you can see the #'s and trend lines we are following along with updates.

K

Jayce's 1st Pictures

Week 40

So week 40 of the pregnancy started uneventful. I had taken the week off from work and was just hanging around the house doing nothing (yes I was actually doing nothing!). On Tuesday I had just taken a shower and decided to lay down and get some sleep. When I got up from my nap I felt a small gush of water. As I tried to decided if I peed my pants or my water broke I called the Dr's office and they told me to come in and they'd figure out what happened. So a few hours later a nervous Keith brought me to the Dr. office. The tests they ran for amniotic fluid traces were inconclusive so they sent us in for an ultrasound. Little Jayce was moving around but the u/s showed that I barely had any more amniotic fluid. Whether my water had broken or not they wanted to get Jayce out as the level of fluid was too low. The Drs decided that Keith and I should head right over to the hospital as they were going to induce labor. Thankfully we had our hospital bags in the car and were sort of prepared in case this was the situation.

We arrived at the hospital around 5:00 on Tuesday 23rd. After we settled in they hooked me up to a bunch of monitors to test my stats as well as Jayce's. Go to find out I was actually having contractions every 2 minutes apart. This might go easier than expected! But after a few hours they slowed down to every 4 minutes and then stopped. I was also still not dilated. So since they were going to have to inducing labor the next day, at 9:00 pm they gave me Cervidil to start ripening the cervix. I actually had minor contractions all night long spaced about 4 minutes apart so needless to say I did not get any sleep. Around 7:00 on Wednesday morning (Jayce's birthday) they started giving me low doses of Pitocin. This drug releases oxytocin into your bloodstream which makes your body think that you are in labor and causes you to have contractions. Around noon they checked my cervix and I was barely 3 cm dilated...but enough that they let me use the spa bath to hopefully ease the pain of the contractions. Now going into this whole event I was convinced I was going to have a medicine free labor and give birth in the tub...I mean why not have Jayce start out his life as a water baby! Well, after 15 minutes in the tub I decided that this was not going to plan! Labor was REALLY painful. Now I have had kidney stones, ruptured my Achilles and two miscarriages so you might think I could go through labor. Well, let's just say that by 1:00 I decided that I needed something to take the edge off but I was still NOT going to have the epidural. YEH, well by 2:00 I was actually screaming for the epidural. (yes I was that lady screaming in labor!) It could not come fast enough and everyone kept telling me only another few minutes. After talking with people afterwards I guess Pitocin is a pretty brutal drug and causes much more severe labor contractions that would occur naturally. By 3:00 I was comfortably numb and by 3:30 they said I could start pushing! I was like you've got to be crazy, I'm finally comfortable after 23 hours of being here and this is ready to be over! I asked them to lower the amount of anesthesia so that I could feel something for pushing. They said that most people can naturally push the baby out without feeling anything but they'd lower it anyways. I was glad I made that decision as I could then feel when the contractions were coming on and start to push. After about an hour Jayce made his entrance into this world at 4:39 pm weighing in at a chunky 8 lbs 15 oz and 20 3/4" long. I held him for a few minutes when I had noticed that he was gasping for air. The suctioned his air way again but he was still having some trouble breathing. Before I handed him off he had opened his eyes and stared at me long enough for us to share on special mother/baby moment.

September Baby Shower Pictures

So, better late than never. Here are the pictures from the September baby shower at our house in CT.

http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=nvgkyr9.9s1fvdhl&Uy=26gff5&Ux=0