Pictures!!!!

37 weeks gestation/ Almost 80 days

So a lot has happened since I last posted… The day after the last post, Taylor had experienced a similar episode to those on Thursday… and Jon and I figured out that it was again another equipment problem. This time though, we found the actual piece in the system that was broken, and insisted that it be changed. Before we left, we had convinced the RT to replace it… and I do mean “CONVINCED”. Immediately when we pointed out the fact that he was supposed to be on 5L of oxygen, and you could not hear any flow… she tried to tell us that was normal. OH HELL NO! Ok, apologies, but I could hear 3 liters of flow when he used to pull out his canula… I sure as H*** should be able to hear 5. Anyway, so she changed it before we left… when we came back Monday afternoon… they had put him back on that system… and taped around the piece that was broken… I had a conniption. It wasn’t until Tuesday that the flood waters broke, however. On Tuesday I came in and found out that a number of procedures and exams had been preformed on both of the babies without anyone bothering to call us. Taylor had been put back on CPAP, and Alivya had been put back in an issolette. I was livid… so I had a long conversation with the manager… who schmoozed everything over, but didn’t really solve anything. I also talked to the manager of the RT department… who discovered that the piece that Jon and I had pointed out was “broken” wasn’t actually broken… but belonged to the “Adult RT Department” and did not fit the NICU equipment… thus creating a HUGE oxygen leak… so we spent like four days oxygenating the NICU and not Taylor. But this doesn’t in anyway suggest that the NICU contributed to his “tuckering out” and needing to go back on CPAP… sarcasm… Sorry folks, but if you are told that you need oxygen, and for whatever reason you are not getting it… yeah, it is going to cause you to have respiratory problems that might make you end up on more support… i.e. CPAP…

Ok, so I am pretty bitter about that. It has erased a month of progress for Taylor. It feels like February never happened. Now they are all more convinced than ever that Taylor can’t handle nasal canula… which is not true. He can handle nasal canula as long as he is actually getting the amount of oxygen he requires. So in ‘weaning’ him, they are going super slow. Right now, over a week after putting him back on “for a couple days to rest”, they are giving him one hour twice a day on nasal canula. No surprise that he requires over 70% oxygen during that time… just when he gets settled down its time to put him back on CPAP… so this is showing them nothing. But who am I… just the mom… just the person that sits there hour after hour with only his cues to watch. It makes me cry, and there is nothing I can do. I am not being heard.

I guess in better news… Jon got him to nipple 27cc last night while on the canula. Which is pretty wasteful too since he can’t while on the CPAP… so by the next time he might get to nipple he will have forgotten what to do… This morning they also increased his feeds to 50cc. Yesterday he was 5lbs 10oz.

Alivya has made some good progress too. Over the weekend she was taken off oxygen entirely. She nipples almost half of her feeds when they let her… which they spend most of their time convincing themselves that she is too tired and sleepy… She was up to 42 cc per feed of Neocate… which I understood to be some sort of soy based formula… today they decided that this sort of progress was too nice, and are going to mix it half neocate, half regular… so on with more residuals and spit ups… and we can erase a month of progress with her too. I guess my philosophy just doesn’t mesh with theirs. I think if something is working… don’t mess with it… but obviously… they don’t. Or, maybe they really don’t want my babies to come home… I know I am being irrational, but this is how I feel.

Alivya was 4lbs 11oz yesterday. She also had an eye exam (so did Taylor, but his is fine…). Two weeks ago Alivya had the beginning signs of ROP in one eye… a week ago we were told that it looked a little bit better but they wanted to look again in a week… yesterday we were told that it looks the same if not a little worse… so they are going to look again next week. The doctor said it would either look a lot better or a lot worse… somehow I doubt this… but at least we will stop playing this game. She said she would decide next week if she needs treatment or not. Being the person that I am… I am pretty sure we are off to Sinai again. You can call me crazy for feeling like my babies are not coming home and do not belong to me, but every time I start feeling like this nightmare might end… something else comes up.

36 weeks gestation/ 70 something days old

With four weeks left until the due date, we're getting very anxious to have the babies home. This week, like so many others thus far, has been one of dramatic heights and valleys.

Thursday Taylor had his one week post op check on his eyes. Thankfully the doctor says that they "look fabulous". As a result, she had no problem sending him back to be with his sister. Hurray! No one is happier about that than us! So his transfer back was pretty uneventful, but that evening was less than uneventful! When I got there around four, he was resting comfortably at 70% oxygen at 3 liters. I was informed by his nurse that he had just experienced "an episode". Which she described as "de-sating". Because of our past experience with this particular nurse, I didn't pay any attention to it. All of sudden about thirty minutes later he began to have another one of these "episodes". I found the whole event fairly peculiar because Taylor's breath rate had been very good through the whole event... and turning up his Os (oxygen) didn't really help him recover. So this particular nurse, who is known to us for her premature and drastic reaction to Taylor's desats, just kept turning up his oxygen. Never bothering to realize that it wasn't helping him at all. When Jon finally pointed the fact out to her, she just acted like it was this stupid coincidence and kept on turning him up.

Within about ten minutes, she had turned it up to 100%. It still was not helping. She ended up bagging him for a few minutes in which his saturation shot right up to the 90s. So then she turned of the bag and put it away. Within minutes, almost seconds, his saturation began to fall again. So she pulled out the bag and did it again... we did this about four times. During which I suggested at least three times that something else had to be wrong... His doctor happened to be in the room, taking care of other babies, so he immediately ordered that Taylor be put on his tummy (where he oxygenates the best) and that a gas and chest x-ray be taken. Both turned out to be the same as usual... He also ordered an increase in oxygen flow to 6 liters, in the meantime, Taylor continued to have these episodes.

I had mentioned that I thought it maybe a mechanical problem since he was clearly breathing, and trying to oxygenate himself... but the RT who came over to look at things really didn't think that was the problem. He lazily looked over the system making sure that the connections were all tight. He did not take the canula out and actually do anything to check whether or not there was flow... I asked them to check to make sure the prongs were not clogged, and I had them suction out Taylor's nose... neither of which really helped. About an hour after all this began and three or four cycles of giving blow by then taking it away... a new RT came on. She, out of curiosity, changed the source of the oxygen Taylor was connected to. All of a sudden we heard this hissing spew as the oxygen came out of his nasal canula (probably for the first time since he returned hours earlier.) None of us noticed that there was no flow coming from his canula when we checked it for blockage, duh...

Anyway, so Taylor had probably been oxygenating himself totally since about 2. So by 3:30 he was probably getting tuckered out, and that caused the first "episode". The subsequent "episodes" happened faster and faster because they kept giving him a little bit, and then taking it all away again (although not realizing it.) So he had a totally unnecessary chest x-ray and blood gas. As a consequence of the whole problem stressing out his system, he ended up getting a shot of lasix that he would not have needed had he been getting oxygen that whole time. They also turned up his oxygen to six liters and dropped his feedings to 34mls. Lets not even mention that the medical care "required" during that time was increased and will therefore be charged at a higher acuity... even though the whole thing could have been avoided if the equipment had been properly checked for appropriate function.

This all got me thinking about how much of medical charges could be avoided for just such situations. It also reminded me just how important it is for medical staff to be very observant and vigilant about problem solving. I really do believe that most of the stuff that was done would have not been necessary if that first RT would have checked that there was in fact flow from the nasal canula... always goes back to those ABC's! Not that this is solely his responsibility. The nurse, for example, should have realized very quickly that the pattern of these "episodes" did not resemble the typical pattern of de sating, and that Taylor's vigorous attempts at breathing with out actually oxygenating was not normal. When Taylor really de sats because he needs more oxygen, he doesn't struggle so much to get air. It also doesn't happen so predictably, and increasing the oxygen always helps. Additionally, between cycles of blow by, he was very alert, looking around and suckling... a baby who was having respiratory distress because of infection or disease would look more limp and less active.

One of the nurses once told us that the kids "survive in spite of them [medical care providers]" This I find more true every day. It also makes me want to take them home more everyday. I get these feelings like I could care for them better, just having only them to care for. I know that this is faulty logic, but you think it anyway.

I was very proud of Alivya during all of this... she was the only baby in the room that was not crying or alarming! Alivya has had a pretty long week though. She continues to have feeding issues. Her residuals yesterday were fairly large and she stopped gaining weight. Last night she actually lost weight. They made several changes to the type of formula they have been giving her, but nothing really seems to get digested better. So yesterday her doctor decided to do a lower GI study. Preliminary results were negative, which tells us that she doesn't have a narrowing or blockage in her lower GI track. This is good, however we still don't know why she is having so many problems. So today sometime they are going to do an upper GI study. As much as I want to know why she is having so many problems, I don't want her to have a blockage. This is a problem that would need surgical repair, and of course, they don't do that at this hospital... so she would be transferred. Damn, we just got them back together! I can't even begin to describe what this is like. The only good part about this week, is that it went by very fast. Probably because we have not had two seconds to spend on anything except getting from one hospital to the next.

In other news, we finally got around to cleaning the house up and getting it on the market! Its like pushing that first domino over, and hoping that all the rest of them are placed (with out real measuring tools)in just the right place to continue the effect. This sort of random luck is not how I am used to living my life. Especially since I feel sort down on my luck these days. Well, here is hoping that life actually falls into place for once... not holding my breath!!

Quick mid week update

Taylor has bounced back pretty nicely from his surgery last Thursday... although the doctors at the new hospital are really not willing to do anything more with him, so I am counting this as a week lost... We will know on Thursday whether or not the surgery was a success... Hopefully everything will look good and we can get him back to the other hospital with his sister...

Alivya is doing very well although she continues to have issues with feeding. She has a lot of spit up and residuals after each meal. They took her off breast milk and tried a partially digested formula which worked for a while, but it all started again when they tried to wean it... then they tried to pump it in over a long period of time, which also seemed to work for a little while. Now they have switched her to a soy based formula, they think she has a milk allergy... Lets hope that is it! Once she gets this down, she can come home! She started nippling last week, and yesterday actually took her whole bottle!!! So I think she might make it home by her due date!

Anyway, I am doing ok. Taylor's surgery and transfer has really burnt us out. Last week we tried breast feeding with Alivya, and it actually caused her to loose weight. So the lactation consultant explained to us that she and Taylor will never get enough calories from me to justify learning and expending energy on breastfeeding. She strongly encouraged us to quit.. which is totally against what I thought the role of the lactation consultant was... but we decided to quit because I want them to come home more than I want to breast feed. So the idea is that they will come home faster if they only have to succeed at bottle feeding and not both. We also decided to stop pumping... Since Alivya wasn't getting any breast milk, and I only made enough for two of Taylor's feedings... it just was not worth the effort that it took. I am comforted by the fact that they each received colostrum and nearly two months worth of only breastmilk... but it was still a stressful conclusion to come to. So I am trying to focus on getting Alivya home and not sweating the small stuff.

Almost 35Weeks/ 60 something days

We’re feeling pretty drained these days. Tuesday both kidos had their third eye exams. We didn’t think too much of it since we were told that the last two exams were fine… well turns out that we were misinformed. Taylor actually had developed stage two retinopathy of prematurity (ROP) by the time of his February 14th exam. So it wasn’t a really huge surprise to the staff that he failed this exam and required laser surgery to prevent retinal detachment and blindness. To us, however, it was news since were not informed of this development two weeks ago. So in 48 hours we had to digest the fact that our child not only wasn’t “fine”, but required a pretty major surgery in order to give him any chance of getting out of this with sight. Since the surgery isn’t done at our hospital, we had to digest the idea of a transfer to another hospital, getting used to a whole new environment (where only the doctors and RTs are familiar since they rotate between both sites) and new nurses (all of which I believe are convinced that I am clinically depressed and neurotic). So Taylor was transferred early on Thursday morning… I always thought that his first outing would be with us… but it looks Bell Ambulance gets that honor. We spent the whole morning with him, and not just staring at his box either. I held him for nearly an hour before the transfer, and then for several hours after at the new hospital. Jon also held him for a couple of hours. I was pleased that no one told us that we could not… because it was very important for me. I think I would have blown a gasket if someone had told me that I could no longer hold him. Anyway, sometime around two they took him to the “procedure room” for the surgery. We left there feeling ok about things, but still pretty nervous. Since ten minutes before they took him was the first time we actually were able to speak with the surgeon about what was going to happen, we had a lot of risks and information to digest. The worst part was being told that in a few minutes our son was going into a surgery that would essentially destroy any all peripheral vision. If we didn’t do the surgery, then he lost all vision, if we did then he lost all of his peripheral vision. Lets talk about damned if you do and damned if you don’t! We also left there knowing that he could end up on the ventilator if they could not keep him still for the surgery. Since Taylor has a history, and is known as “the wild man”… we felt pretty confident that this would happen. Much to our surprise, he made it through the surgery on nasal cannula! We took one of those forbidden sighs of relief… only to be called back nearly ten or fifteen minutes later and informed that he had to back on the respirator. I felt like a pig being fattened up for the kill. Stupid, I know, but the word respirator is to us as the atomic bomb is to Japan. It stings and floods our minds with all the awful thoughts and feelings of the babies earlier days. They keep telling us that it won’t be for very long, but this no longer comforts us. When Alivya went back on it “not for very long” she came off a week later… When Taylor went back on the special vent “not for very long” he came off two weeks later… as you can see, we have not had a great history with the term “not for very long”. Besides, these nurses go home and live their lives… these babies are our lives. So maybe a week or two is “not for very long” to them, but to us it is a tenth of their lives. If you think of it that way, their week is equivalent to two and half years in our lives. It’s an eternity!

So Taylor will be at the hospital for at least a week (2.5 years) in order to have follow up for his surgery. Alivya has been moved into an open crib and had her IV removed today! HURRAY. She also began nippling in order to learn to coordinate eating and breathing. I like to think of this as the home stretch since that is pretty much the only think keeping her from coming home. So I guess we will just have to see how she does.