Us

Us
Wife, Parent, Nurse; my life raw and real, as I see it.

Friday, February 24, 2006

34 weeks gestation/ 56 days old

So, we're getting older and bigger... This week we celebrate not having had any big steps backward!!! The biggest news with the babies is the fact that there hasn't been any really big news. I like that. I think we can afford a few of these calmer weeks. Actually, I think the biggest news this week had to do with the fact that several of the other babies we've come to know and love have left us (they've gone home, or to other hospitals for special care). Of course we wish them well, but its sad for us as we still have to be there.

I am excited to report that both babies are still on some form of nasal canula (Taylor is still on an on/off schedule...4 hours on, 4 hours off..) Both are also gaining weight... Alivya was about 3lbs 6oz yesterday, and Taylor was 3lbs 12oz!!! He has gone over the 1700g marker which means 1800 grams is right around the corner! Why is that so good? Well at 1800 grams, babies can usually maintain their own body temperature, and when they can do that, they can come out of the isolette and into an open "crib". (Which is more like a bassinet... or a plastic storage tub without a cover...) Anyway, it is a BIG sign of progress in the NICU! I think its reasonable to think that by this time next week he will be there. Right now he is getting 31mls of extra fortified food every three hours. So the big story with him continues to be his respiratory status. The doctors are going extra slow with him... I don't think anyone wants to be responsible for taking "the big leap". I don't want him to tank either, but I also would like to see them wean the support. Such is life...

Alivya, on the other hand, continues to do really well in terms of her respiratory status. She does well on nasal canula, although she has been requiring a little bit more oxygen in the past day or so (I won't say too loudly that I think it does have to do with the nurse that cares for them. Her comfort level really dictates how well the babies do... shhh) Anyway, by a little bit, I am talking about like 6-7% more. With Taylor we are usually talking about 10-30%. So Alivya is significantly better respiratory speaking. Now lets talk GI... That's were Alivya has struggled. She is up to about 5mls every three hours of special formula. Its pre-digested so that her body doesn't have to work as hard to break it down. Its only been in the past couple days that they have begun to increase her feeds. Prior to that, she had a lot of residuals left over and really wasn't tolerating food well. Consequently, her weight has gone up and down some, but has had an increasing trend. (oh look at me and my scientific explanation ;) I almost sound like Jon!!) Anyway, her slope is not as steep as Taylor's, but in a positive direction still!

Ok, so that's the scoop! Tomorrow is the baby shower... We are really excited! We've made a video for everyone of the babies, since they are here, but can't go too. I think it should be a really good time!

Sunday, February 19, 2006

33 weeks gestation; 50 days old

So its official, Taylor is on a trial run of three hours on nasal cannula, nine hours on C-PAP... He continues to like his food, as his doctor would say... yesterday he was getting 26 mls of fortified 24 calorie breastmilk/formula... Boy that sounds complicated. hmm, anyway, I guess he lost a few ounces yesterday. But generally, he is doing well.

Alivya is also testing out nasal cannula. She is on it all the time though, and at much lower settings. She spent most of the day on oxygen concentrations equivalent to room air. Her feedings continue at 2 ml (every three hours), but sometimes she tolerates it better than other times.

So both babies are doing fairly well this weekend... lets hope it stays that way ::sigh::

Friday, February 17, 2006

Little bit of progress...

I don't have the official word yet... but the nurses, the RTs, and I really think today is the day for Taylor to try Nasal Cannula... I know he will like that better than C-PAP, and I think he is ready... so here is hoping! I'll try to post later with the official news... for now, keep your fingers crossed and send good vibes our way!! ;)

Oh, BTW, Alivya was started on food again this morning... 2ml every three hours... but hey, its food!!!

Wednesday, February 15, 2006

44-48 Days

So it appears as though my husband has given up on his high profile pursuit to bring you all the most up to date, minute to minute stats on our little miracles... So, I thought I would drop in and give you a briefing.

Taylor: Still on CPAP (Hurray)and doing fairly well. When he has a good nurse, who doesn't chase him, he can get as low as 30% Oxygen. He continues to be on the +5 setting for pressure, and still fights the apparatus... such is life... you probably would not like a big plastic mask or prong pushing air into your face either. Anyway, this morning they took out his central line, so he no longer has any type of intravenous lines! This means that his oral feedings are completely nutritive. It also means that he is no longer getting antibiotic treatment (which means no more infection!) The very fact that he is doing well on CPAP suggests that his lungs are getting more developed, and reduces his risk of contracting another infection (at least psuedomonus infection). He now gets gases only once per day, and needs fewer chest xrays. Otherwise, he still likes his food and is getting 22ml every three hours. Except for yesterday when he lost a little weight, he has been gaining steadily. Today he was at 3lbs 3oz.

Alivya: She has had a pretty tough week, but finally went back on CPAP today. She has some signs of infection still (increased white blood cells and fever)but her blood cultures have been negative since Saturday. Its seems like she might be fighting a little infection in her colon, so she is still not taking food. The best treatment, besides antibiotics, is to give her belly a rest. Consequently though, she does have a large belly. It seems to be full of air, probably a bacteria that produces air. Hopefully that will get better as the medicine has some time to work. She also had a new central line placed yesterday because they needed to allow her body to resterilize (the old one may or may not have been the source of her infection). Her chord finally fell off the other day, Taylor's fell off awhile ago, so we've been waiting for her. She also had a lot of oral secretions during the week, but there were fewer secretions today. Just another sign that she is recovering. Her weight has gone up and down a lot this week, and we cannot really say how much of her weight has to do with whatever is going on in her belly, but she was 3lbs 2oz today.

So that's the scoop. We are going to try to keep updates each week. Daily updates were a little bit too much to maintain.... stay tuned ;)

Saturday, February 11, 2006

43 Days Old

Taylor: CPAP (5 cm H2O, 10.5 l/min), 40% 02, 3lb 0oz, BM(f) 12ml/3hrs, Control Temp 27.9 C

Alivya: Resperator (PIP 20, 22 bpm), 24% O2, 3lb 1oz, BM on hold, Control Temp 36.7C (P)

Taylor had another good day. His CPAP setting continue to go down steadily.

Alivya is also doing well. Her resperator settings continue to fall, and so far they have not grown anything in her blood culture. Hopefully she will be off of the resperator soon.

Friday, February 10, 2006

42 Days Old

Taylor: CPAP (7 cm H2O, 10.5 l/min), 38% 02, 3lb 0oz, BM(f) 6ml/3hrs, Control Temp 27.9 C

Alivya: Resperator (PIP 21, 35 bpm), 24% O2, 3lb 1oz, BM on hold, Control Temp 36.7C (P)

Taylor is on CPAP! This is the first time he has not had a tube in his mouth, so he is really uncomfortable. Consequently, he has been very active, at least he was this morning. They reduced his feedings so as not to stress him out too much. I don't think it makes any sense. Wouldn't consistentcy with his meals stress him out less?

Alivya continues to get better. They had to remove her central line in order to enable them to be sure that her blood is sterilized again. They are not sure whether or not the line facilitated the infection, but that would not be a big surprise. They will likely need to put a new one in when they get a negative blood culture from her. Overall though, she seems to be on the mend.

Kangaroo Taylor

Thursday, February 09, 2006

41 Days Old

Taylor: Respirator (PIP 19 cm H2O, 25 bpm), 33% 02, 3lb 0oz, BM(f) 14ml/3days, Control Temp 29.0 C

Alivya: Resperator (PIP 22, 45 bpm), 25% O2, 3lb 1oz, BM on hold, Control Temp 36.7C (P)

Not much to say about Taylor. He and Alivya have really switched places as far as who is causing trouble.

Alivya is doing better today. They have narrowed down the infection to a form of Staph, what kind they do not know yet. Her control temp is higher because it is set different not necessarily because she has a fever or anything. Instead of the air temp being set, the temperature is controlled by her actual body temp.

Wednesday, February 08, 2006

40 Days Old

Taylor: Respirator (PIP 19 cm H2O, 40 bpm), 35% 02, 3lb 0oz, BM(f) 13ml/3hr, Control Temp 29.0 C

Alivya: Respirator (PIP 24 cm H2O, 55 bpm), 21% O2, 3lb 1oz, BM on hold, Control Temp 28.6C

Taylor had a good day. He continues to do well on the respirator, and he has breached 3 pounds. The doctor gave him a bolus of caffeine today... can we say CPAP soon???? (That is what happened with Alivya a few weeks ago)

Alivya had a really bad day. The doctors think that she has an infection. When they checked her CO2 at 8pm it was 95, which is way over the normal 40-50. They put her on a resperator and stopped her feedings, as well as put her on anti-biotics. Hopefully this will not last long.

Tuesday, February 07, 2006

39 Days Old

Taylor: Respirator (PIP 20 cm H2O, 60 bpm), 35% 02, 2lb 15.6oz, BM(f) 13ml/3hr, Control Temp 29.4 C

Alivya: Nasal Canula (2.5 liters/min), 36% O2, 3lb 1oz, BM(f) 14ml/3hr, Control Temp 30.8C

Taylor had a bit of a backward day today. His bpm and PIP are both up. This is due to improper placement of his tube. It had moved down to the point that it was only ventilating 1 lung. It is most likely that his settings will go back down after not to long. Other wise he is doing well, and was very alert when we were there.

Alivya has broken 3 pounds today! Hopefully the weight gain will continue steadily.

I have started to list their control temps on their isolets. When they reach 1800 grams (approximately 4 pounds), and can control their temp for 8 hours while the isolet is set at 27 degrees C they can come out and be put in a regular bassinet.

Monday, February 06, 2006

38 Days Old

Taylor: Respirator (PIP 19 cm H2O, 32 bpm), 35% 02, 2lb 15.6oz, BM(f) 13ml/3days

Alivya: Nasal Canula (2.5 liters/min), 26% O2, 2lb 14.7oz, BM(f) 12ml/3hr

Taylor had another good day. His breast milk is now being fortified to give him more calories in the same number of milimeters. His bpm also went down, which is nice.

Alivya is down a little on her flow rate, which is also good, and her weight is gaining well. Her breast milk is also fortified.

Technical Difficulties

You may or may not have noticed, but over the weekend our blog experienced some techinical difficulties. Jon finally got to posting all of the particulars for last week (something like five or six posts) and for some reason they didn't exactly save. For a day or so you could see them if you logged on, but all of a sudden, they disappeared... We knew something was up when I tried to correct a couple of gramerical errors... and the posts did not show up in the edit screen at all. The point is, Jon's not being lazy or forgetting to post... blogspot just can't keep up with him. So hopefully he will get a chance tonight to re post some of it. Otherwise all is good, and I am off to see the babies right now! l8r

Sunday, February 05, 2006

37 Days Old

Taylor: Respirator (PIP 19 cm H2O, 40 bpm), 35% 02, 2lb 11.7oz, BM 12ml/3days

Alivya: Nasal Canula (3 liters/min), 26% O2, 2lb 13.2oz, BM 12ml/3hr

Taylor had a decent day. His settings continue to go down, and he got a bath too!

Alivya was moved to a Nasal Canula. They determined that the CPAP was just not staying on well, so they decided to try something different. She is also taking her breast milk well. So a good day for her.

Saturday, February 04, 2006

36 Days Old

Taylor: Respirator (PIP 19 cm H2O, 45 bpm), 35% 02, 2lb 11.7oz, BM 10ml/3days

Alivya: CPAP (4 cm H2O), 26% O2, 2lb 12.5oz, BM 9ml/3hr

Taylor had a good day. His Positive Internal Pressure (PIP) is down as are his controlled breaths per minutes (bpm). Julie got to kangaroo with him as well, and he seemed to like that a lot.

Alivya had an ok day. She was destating more often then usual, and the nurse is suspicious that she may have an infection. If things do not improve tomorrow she is going to get some blood work done.

Wednesday, February 01, 2006

Quick Briefing

Jon will post later the particulars, as he is more into the numbers than I am... but since he is being forced to behave at work, and our house is in some ginormous state of chaos... he hasn't been able to post in a while. So, the news since Saturday is that there really isn't much news.

Taylor has continued to be stable as the antibiotics begin dealing with his pseudomonus. He continues to tolerate his feedings very well and is up to about 9ml of breast milk every 3 hours. Other than that, his settings have changed very little, but they are weaning the Fentnyl (basically a pain med that has been running to help him relax and not fight the ventilator.)

Alivya also remains fairly stable. She seems to like the CPAP and her settings have not really changed either. She also continues to have some problems with residuals after feedings. Today, her feedings are being stopped and a new central line has been placed. Dr thinks that the old line began to clot off (which is bad) and the best way to treat that is to remove it. They will give her a break with the feedings and try them again soon. Dr is not concerned that she still has her cord... he says that germs are the reason that babies cords fall off, and since she has been on antibiotics... well, we've killed the germs that would make it come off. Interesting theory, I am not totally sure I buy it, but as long as it's not infected... I guess I'll go with it.

In other news, the floors are finally done, and we can begin re-organizing our house...again... This is only the third time since the babies have been here! Great fun, let me tell you! So that is the big scoop... I am going to plug in and then join Benji, who is totally crashed on the floor... although I think I'll use the bed!

Saturday, January 28, 2006

29 Days Old

Taylor: Oscillating Respirator (Mean 12.0, Amplitude 36, Frequency 12) 60% O2, 2lb 5oz, BM 4ml/3hr

Alivya: CPAP(5 cm H2O) 24% 02, 2lb 8oz, BM 4ml/3hr

Much better day for Taylor. It has been determined that he has another infection, and has been started on antibiotics. He has not been destating, which is really good, and we hope he is on the mend. He is still taking his food just fine. They also did an Echocardiogram yesterday to check on his PDA, and it was normal, so that is fantastic.

Alivya is still doing good, she is very comfortable where she is at. Her feedings are doing ok, but every once in a while she has a large amount of residual, so they give her some pedialite at those times.

It has come to my attention that what I am putting at the beginning of these post is confusing, let me clarify. The oscillating respirator has several settings. The Mean is the Mean Airway Pressure. It is primary in determining how much oxygen Taylor gets. The Amplitude is how much the setting varies, and is primary in determining his CO2 amount. The frequency is simply how fast the amplitude is changing. After that the % O2 is how much current oxygen he is getting, followed by their last know weight, and the BM refers to how much breast milk he is getting. It is the same for Alivya, except that she is on the CPAP , and the number refers to how much pressure is being put on her lungs.

Friday, January 27, 2006

28 Days Old

Taylor: Oscillating Respirator (Mean 11.0, Amplitude 36, Frequency 12) 100% O2, 2lb 5oz, BM 4ml/3hr

Alivya: CPAP(5 cm H2O) 29% 02, 2lb 8oz, BM 4ml/3hr

Taylor did not have a good day today. Julie called me at work and I ended up taking off to be with her and Taylor. He was having sessions of low oxidation the whole day, even when he was set at 100%. At one point they had to bag him and manually breath for him because the machine was just not doing the job. He has a collapsed lung, so they are trying to keep him on one side. They also prescribed 2 new medications, one to expand the Alveoli in his lungs and the other to reduce and inflammation. His Oscillator settings are also way up. Kind of feel like we are hitting a brick wall here, with no idea what is going to happen.

Alivya is doing fine. She is having a little trouble with her feedings, having residual and such, but that could be from her CPAP, which forces air into both her lungs and stomach. Otherwise not much to report.

Thursday, January 26, 2006

27 Days Old

Taylor: Oscillating Respirator (Mean 10.0, Amplitude 28, Frequency 12) 65% O2, 2lb 5oz, BM 4ml/3hr

Alivya: CPAP(Setting 4) 24% 02, 2lb 8oz, BM 3ml/3hr

Another backward step day. Taylor's oxygen requirements have been going up. The doctors seem to think it is simply because of their prematurity. Anyways, they are still just watching him. The good news is that he is taking his feedings very well and is up to 4ml every 3 hours.

Alivya is having some trouble with her feedings. She had a lot of residual in the morning, so they gave her some Pedialite, which she digested completely. However, she had some more residual tonight as well. So they are doing the Pedialite again. Otherwise she is doing good.