James took the kids down to St. David to spend the day with his family for Ammon's last Saturday before he leaves on his mission. Our kids LOVE getting to go down and see the "sheep, goats, Ammon." In fact, the last time I went grocery shopping, their response to James saying, "Guess who's here" when I returned home was, "Ammon!" Yeah, made me feel really good.
In any case, it has been such a long emotional week that I really didn't feel like I could be away from Timmy for an entire day. Not to mention that I am still not in a place where I want to discuss Timmy's trach and be asked again when he's coming home. We would all like to know, but there isn't a set date at this point. And it could possibly take a little longer.
I spent the morning picking up the living room so I could cross the floor in under 5 minutes. It was nice to do something "normal" and routine without feeling like I was neglecting anyone and feel like I was really getting things put away. It has been such a blessing to have so many people help pick up the house and vacuum when they come over to babysit, but you still end up with piles around the edges of the room that only you can sort through and either trash or put away. Glad to have a few of those cleared out.
I called Dana a few times to see where Timmy was feeding-wise and my pumping coincided with him being due to eat around 3:00. I had intended to make it over to him earlier but also wanted to create the last blog post. The longer it takes me to get around to blogging, the more I forget and the more daunting it is to get everything written down.
Friday, Dana had drawn blood for another set of lab tests, including another bilirubin level. Timmy has been looking a little greener each day this week, particularly in the whites of his eyes. Weeks ago Dr. Tsai had tried to explain to me the difference between direct and indirect bilirubin but I was running on very little sleep (not that that has changed much) and I really just wasn't able to follow her then. Basically, the green color is the result of direct hyperbilirubinemia. Dana passed the phone to Dr. Edde who told me that Timmy's direct or "D" bilirubin should be at or below 1 for his size and gestational age. He is at an 8. Quite elevated. There are a number of possible causes, among them sluggish liver function as a result of all the time he has had to spend on TPN. An abdominal ultrasound was ordered along with a consult with a gastroenterologist next week. (Hoping that they can see him Monday.)
Dana had moved Timmy from his isolette to a crib. The nurses usually move kids as soon as they are big enough, but the isolettes are the best transports for kids going to the OR and since Timmy has made frequent trips, it never made sense to switch his bed. It is a little bittersweet to see him in a crib now but still not home.
We got Timmy's trach ties changed, diaper and clothes changed before I nursed him. He was beyond ready.
I will readily admit that I couldn't tell much of what the tech was looking at. I could make out different structures and tell where there was fluid but couldn't identify most of anything until the tech labeled it. I asked him if he was seeing anything and he told me that he wasn't supposed to say anything, but he could see a little free fluid in the abdomen, which could have been from his reanastomosis. However, it's been a month now (I know! I can't believe it either) so not sure that's really the case. Not sure why these things always have to happen on the weekend when the specialists aren't around to read the ultrasounds and you have to wait until Monday for results.
Finally, I got to change his clothes after the ultrasound. He looked soooo adorable in these overalls. I have wanted to put them on him for so long but haven't been able to put him in anything that doesn't snap on because of the stupid ET tube on one end and the broviac line on the other. I had to work the overalls down from over his head due to the broviac, but the end result was more than worth it. I had worried that he would never get to wear this very cute outfit because it's labeled as a preemie but apparently it's a large preemie because he was still swimming in it.
After getting the kids all tucked into bed and spending some time with James, I went back to the NICU. Lori had Timmy again. And, once again, his feeding was delayed so we could get his cares done. The nurses like to let him sleep so will wait for him to wake up to change his diaper, weigh him, etc. It usually works out pretty well, though, that we get it all done and then he is very ready and nurses well and can play for a little while before falling asleep in my arms.
I expressed my concern over Timmy's leg to Lori and she called Mary Ann in to take a look. Lisa came in too and they got to see Timmy in his cute overalls before we stripped him down to weigh him. 2850g (6 lbs. 4.5 oz.) for the night. He seems to be holding fairly steady in the 2800 range. Mary Ann thought that the wound looked like it was from threading the broviac. Odd that it would appear almost three months later. It did ooze a tiny bit when she pressed on it so she asked Lori to clean it really well with sterile water and make sure the surgeons took a look at it in the morning when they did their rounds.
I was home again last night shortly after midnight. I have decided to discontinue trying to sleep over at the hospital because I'm so tired by 3am that I am dilirious in helping with cares and fall asleep while nursing and have absolutely no clue how long Timmy has eaten.
Sunday, July 25, 2010
Home closer to 2am tonight, but it was a good night.
I called in this afternoon to check on Timmy and Cassie answered the phone. A pleasant surprise, as she is Axel's primary and he and Timmy have been separated. I guess a number of nurses didn't like having both trached kids together so they have been paired with the boys on the other side of the room. The only unpleasant part of getting to have Cassie was when she told me that the reason she had Timmy was because she is orienting and, in doing so, gets to pick her cases and all the trainers take the best ones. At first I was flattered, until she told me that the best ones are the sick ones. Timmy is pretty unique. Trachs are fairly uncommon so to have two next to each other in the same room is almost unheard of. And to have one that isn't sutured in and connected to a vent is even more rare. Shall we go one step further and mention the breastfeeding again? Very much more the exception than the rule.
Cassie had already told me over the phone that the pustule on Timmy's abdomen had ruptured and now there was a little opening on his belly. Small, but big enough for concern. Also, the surgeons had removed Timmy's broviac line. Dr. O'Connor was on and felt that Timmy didn't need the line any longer. Having it in too long obviously increases his chances of infections or other problems with it. She wasn't too concerned with the little wound further north around his groin but agreed that it was from threading the broviac line initially. Unusual that it would open nearly three months later but "it happens".
I'm very glad for Timmy to be rid of his broviac line. I know it has been a major convenience and saved many a heel prick, but it has also been one more line to work around and one more line going deeply into Timmy's little body. We are officially down to 4 lines - the three leads and the pulse oximeter - all for monitoring only. Hooray!
Another stellar 25 minute nursing session followed by a little playtime and Timmy falling asleep in my arms. It was nice to get to talk to Cassie a little more during that time. She feels that I will be able to hear Timmy more as he gets bigger. I sure hope so! And it only crossed my mind last night while talking to Tori that Timmy might experience some speech delay in not being able to make sounds. As he was a preemie, there is a chance he will have some delays developmentally anyway, but she thinks his speech development should be fine. And she did confirm that my thinking isn't too far off - most kids are around 22 pounds at a year and RSV season is roughly October to April so Timmy could very well be in prime position for the surgery on his trachea next summer.
Another run home to help with dinner, baths and bed and return to the NICU just in time for a repeat of cares and another impressive nursing sesion. Jenny has Timmy again tonight (she's with him still as I type). Sometimes I feel so mean helping get cares done when I know Timmy is hungry. But he does nurse better and then it really is nice to let him just fall asleep in my arms. It is much easier for me to leave when he's sound asleep than awake and crying.
I will need to ask tomorrow what she measured his length as, but weight is back up to 2885g (6 lbs. 5.8oz.). We changed his trach ties again before getting Timmy dressed and Francesca, who has Axel and the other baby across from him, came over and told me, "You don't need classes..." I know! =) Apparently an email was sent out after she taught me how to suction stating that the nurses should not be teaching parents. I guess I can understand the liability issue, but why not offer a short class or two to train those who would like to assist more in their baby's care? We got a good chuckle. Only because I trust her instruction and she said she wouldn't have let me if she didn't feel good about it so she must trust my competency as well.
While I was getting Timmy dressed, I took another good look at his abdomen and Jenny was right. She had told me earlier that she saw a suture in the opening on Timmy's belly. It was sitting right there. Praise his little body for working it out. It is still very much attached, but I think his body is doing what it's supposed to do in working it out. Not sure if it's the dissolving kind or not, but this should give the surgeons something to go on in the morning and they should be able to tell us if this needs addressing or just taking good care of. (Cassie was concerned about it and was thinking they wouldn't let us go home with the hole in Timmy's belly. The suture wasn't visible at the time and I think this could keep our discharge on course for sometime in the next couple of weeks. Again, still no specific date.)
I love being able to nurse Timmy ad lib. The only part I hate is watching the clock. Sometimes I will look to start and forget to look again when he stops. Especially if he is stopping because he is gagging or something. Or sometimes I just forget and have to guesstimate.
Over the last couple of days, it's been interesting to note that he will occasionally have a blip of a brady - touch down around 60bpm - and instantly recover back into the 140s. This is always when he starts nippling. The nurses and I agree that we think it's because he is so eager to eat and will suck so hard to initiate flow that he gets more shooting into his throat than he expects and instigates a vagal response. It's not bad, it won't hurt him. I think he just needs more practice to gauge how hard to suck and not correlate it with how hungry he is.
Off to catch a couple of hours before the kids wake up.
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