Its been awhile

Wow its been a long while since an update on the boys! There really hasnt been much to report on them. Both of them have been really boring these days.

Lincoln is 3lbs 5oz and 14" long. He is off TPN gets 25cc every 3 hours, finally weaned of the ventilator and is doing well on CPAP.

Pierce is 2lbs 4oz 12.5" long and finally tolerating feeds. He is up to 1cc every hour. Still on the vent but getting better at it.

Not much going on here.

Until next time

Here is a short update on the boys, I have been crazy busy with everything going on.

Pierce started feeds 3 days ago! He is doing good so far, up to 0.2cc every hour on continuous feeds and tolerating them thus far. Lincoln has an MRSA Staph infection and went down hill rather quickly. Other than that not much to report. I am headed up to see them now.

its been quite the weekend!

Friday we had an ER trip with the oldest daughter, she had emergency surgery to take her appendix out but is at the same hospital as the boys and I havent been home since friday.

Lincoln is growing so well. He is up to 3lbs 1 oz and starting to hold his temp better. He oxygenates well but still has not mastered CPAP. One of these days he will. He is only requiring 25-30%O2 and is on low settings, he takes most of his breaths on his own but does get tired and lets the vent work too. Hopefully soon he will be on CPAP.

Pierce is still having problems with his potassium, however his kidneys are working which is the weird thing. They have been giving him potassium so that might be helping and his levels seem to be improving. His little belly looks a little better today however the initiating of feeds is still not known because everything has to check out ok before trying it again. His pH has improved and everything looks normal except his potassium.

Thats all for now

Frustrations!

Lincoln's time on CPAP was short lived and he only lasted 7 hours on it. It was better than the last time, however it was upsetting when he went back on the vent. I wanted the drs to be wrong and now they wont try him on CPAP for atleast another week which i dont understand. He is a pro at extubating himself. He oxygenates very well for his age and considering how early he was. On the vent he is consistently at 25-33%O2, when he gets mad or is being held it is a bit higher. My guess is he tires out and depends on the vent too much because he can do it he just cant keep on the vent even with steroids. Its frustrating
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Mr. P had a bad day. They thought today was a day to restart feeds however that did not happen. His bloodwork still is all weird. His pH is low for some reason, his CO2 is high, and he cant keep his potassium up. I dont understand what it means when his potassium is low and I cant get a good explanation from the drs. Also he had blood in his stools today, which is an indication that the NEC is still not gone. This has been going on forever. I just want my baby to feel better, be able to get feeds and grow. His growth has been up and down. He isnt oxygenating well either and might be back on the oscillator before long which really makes me sad because I cant hold him then and he did well when I held him the first time.

Thats it for now. Everything about today has been frustrating. I didnt get to see the boys, Madison is sick so I couldnt go.

L is on CPAP!

He finally did it. Lincoln has been on CPAP for 4 hours! He went on it at 4pm EST and so far so good. They did have to give him steroids to get him off the vent. 6 weeks of the vent. I know he probably wont stay on CPAP, well thats what all the drs have been saying. I hope he proves them wrong! He also hit another great milestone today 3lbs!!!! He is growing so well and fast. They gave him the cutest little purple binky today and he LOVES it!

Pierce, my wimpy white boy is not oxygenating well. His ABG's (Arterial blood gas) have been high, his pH is off, platelets are low which really i dont know what all that means. I get so confused with all the medical terminology, I need to talk to the neos and get them to explain it better, they just made me feel stupid asking so many questions. He is still on the vent with higher settings (22/7x60) and there has been some talk about going back to a high frequency ventilator, probably the oscillator which scares me. We will be attempting to restart feeds on Friday if all looks well with his belly. He will go on pregestimil more than likely long term. He cant tolerate my milk and needs the pre digested formula so all he has to do is absorb the nutrients. Long term effects of NEC I do not know, possibly being tube fed, however i really hope he is fine and can atleast bottle feed when he is ready to come home.

The rollercoaster never ends!

He is so close

Lincoln is so close to CPAP! He spent some time on it today after he extubated himself again. The lil dude hates the ventilator so much! The problem is he tires out too quickly. One nurse told us that L is lazy because he clearly can do it if he wanted to. He is requiring 21-35% O2 on low settings and breathes before the vent most of the time, however on CPAP after 20 minutes he struggles. I dont know if he can do it or not but i dont appreciate being told my precious boy is lazy. He does have CLD but the staff is being proactive and trying to get him off the vent this week. The NICU we are at likes babies off the vent as soon as possible and they feel that Lincoln is riding the vent.

Pierce is on the vent doing good. No signs of needing the oscillator again as long as he doesnt have any more major setbacks. His belly looks alot better today and he let me hold him! Tomorrow I can start Kangaroo with him 2 times a week. My boys are growing up. The drs feel that on Friday we will go ahead and try pregestimil instead of neocate. Hopefully he can tolerate feeds and start growing more. He is up to 1lb8.5oz now and 12.5" long.

I am trying to keep this updated more regularly! However it is not always possible with the girls running around like maniacs and long days at the NICU with my lil dudes!

Its been quite the week. P had surgery, recovery was very slow, however by the weekend he was showing improvements. He graduated from the oscillator for the 3rd time, hopefully 3rd times a charm. His belly is much improved and hopefully by friday he will be on feeds again (pregestimil). They had talked about putting him on neocate but with the recent loss of 8cm it has been decided he needs something else to help him. His growth has been like a snail. SLOW. He is 1lb8oz finally which is a big concern with some of the nurses. L has grown alot, but hasnt had any of the belly troubles P has.

L spent an hour on CPAP last night. I knew he wouldnt stay on it, but i hoped he would. He is on steroids that have helped immensely. His settings have come down and he is taking most breaths on his own.

The weekend was spent with the girls! We had soccer games and both girls won! and birthday party for them. Sunday was a day in the park, and swimming.

Pictures of the boys are up in their photobucket account.