ex machina
the eric update - day 31: 2 pounds! a gregorian birthday. a vent?
2 pounds, 1.7 ounces! 956 grams! almost a kilo! on his first "real" gregorian monthly birthday, eric decided to surprise everyone and break the 2 pound mark! everyone was completely surprised, because after getting close two nights ago, he dropped back down to 1 pound 13 ounces last night, and a typical weight gain for him might be a half ounce. so he gained nearly 4 ounces in a single night, which is unprecendented. i guess he decided that we could use a present on his birthday. and yes, i've already decided that, instead of just celebrating '4 week' milestones, we'll also celebrate regular monthly "birthdays" since he probably deserves as much celebrating as he can get. hitting the two pound mark is A Big Deal, so we're very, very happy.
it was nice to have such great news towards the end of the day, because most of the day was spent anxiously awaiting to see if they were going to put him back on the vent. yes. that's right. the vent. on this rollercoaster, in the span of 48 hours, we can go from seeing if he's strong enough to be on the nasal cannula for 24 hours, to being told by the neonatologist ( you know thing are getting serious when you find yourself having an unscheduled chat not with a nurse or nurse practitioner, but with he himself, the neonatologist. ) that he had so many alarms over the previous night that they are close to putting him back on the vent. but first, they were going to give him a few blood transfusions because his red blood count was dropping to levels where it was possible that his lack of "boxcars" was really the root cause of his respiration problems. low boxcars, means less oxygen, which means he has to work harder just to stay at the same level, which means he gets tired and starts alarming. or at least that's the theory. they game him 8 cc's of blood 4 hours apart ( 4:30 p.m. and 8:30 p.m. ). so it's time for everyone's favorite way to pass the time - The Waiting Game. they'll run his bloodwork at 1 a.m., run the numbers and decide if he needs a third transfusion before tommorrow morning. which means we get to spend the night wondering if we'll find him on the vent in the morning.
as a consolation prize for having to play the waiting game over the night, the nurses all made a point to express that they are fairly confident that his dropping red blood counts are what are causing the problems; they had made a clinical note just last night that he was looking particularly pallid and that he would likely need a transfusion soon. but he's had 17 a's and b's through the day, so nobody can really say or sure if the transfusion will kick in before they decide to put him on the vent. or if the low red blood count really is the underlying issue.
so be sure to tune in tommorrow for the next exciting episode of The Waiting Game.
8/04/2004 11:23:00 PM
9 comments
9 Comments:
2 lbs! Isn't that the greatest feeling. I bet you and your wife are beside yourselves right now!
Way to go E4, it's all uphill from here :)
Katra & little Kyle
By 
, at
7:03 AM
yeah, we were/are. although the excitement was tempered was a little by the fact that he kept going in "deep" bradys and apneas that were not easy to get him out of. as you know, it's a trick to celebrate accomplishments while you're trying to get your little guy to breath :-)
katra probably already knows this and is just being nice, but i should point out that a weight gain of 4 ounces in 24 hours is very unusual for a micropreem ( and something that his doctors and nurses would try to avoid); it's quite likely that he did have a biggish gain that put him close to the 2 pound mark and he overshot the mark with the 7 ccs of new blood and the fluids that he's retaining as a natural part of getting the transfusion.
so, he might not stay above two pounds for long. or maybe he will.
I will be glad when the only waiting game is for E4 to be big enough to come home. I'm assuming that the episodes of b's and a's get fewer and fewer over time - and his ups and downs are totally normal for his size and gestation. When do micro-premies usually stop having breathing problems? I know that E4 will continue making great progress in his second month of life. Great news that he has broken the 2 pound mark! Any news on the hernia? I'm sure that micro-premies are more susceptible to them but I wanted to let you know that there may also be a genetic tendency for hernias in the family. Grampy Rier had one as a child and all of his brothers had one at a young age too. In any case, I hope it pops back in place. Looks like E4 had fun on his birthday. I'm searching the house for an antique postcard for a keepsake. Have you heard from your cousin Matt and his family? They are in Michigan this week - have been reading your website - and hope to get in touch by cell phone. Love, Mom
By , at
10:35 AM
2lbs! Yay! Even if he dips back under temporarily, this is a great milestone and a reason to celebrate! Obviously, it's hard to do when other not-so-happy stuff is going on, but the ups and downs are to be expected. I'll be thinking good thoughts that he will be having fewer b's and a's and be back on the nasal cannula in a day or two.
Hugs
C
By , at
11:10 AM
Hi there. Wow, my first comment here. I have sent a couple of postcards to you all but I'm not sure if you got them yet. Anyway congrats on the 2 lb. mark. My son wasn't a micropremie but I remember how important all those milestones were. What a lot of people don't understand is how much things change from minute to minute in the NICU.
Thinking of you!
Becky Davis (mom of Ricky, 8, who was a 33 wk premie, and has cystic fibfosis, and Andrew, 6, who was not and doesn't!)
Well, we usually found that a dose of Lasix would take off that excess. But I remember the first time Kyle hit that mark, under very similar circumstances. But within a few days, that weight was very real. Knowing that you are that close to that goal, it's a wonderful feeling, isn't it?
As for the A's & B's - oh yes, we have had our fair share of those... But soon those days will also be a distant memory. I'm assuming they are giving him caffiene or aminopholin/theopholin, it will help with that - but all things take time :)
I am truly amazed at how wonderful your little guy is doing! We where on that road the first week, until Kyle preforated his bowel on day 7, due to of all things - a yeast infection from antibiotics. That slowed us down tremendously. We spent the next two month on IV nutrition only, trying to get him to 2 kilo for abstruction surgery. The night before his lower GI - 4 days before his scheduled surgery, the abstruction cleared on its own. I remember the nurses running around the nicu with his dirty diaper showing the drs. Sounds funny now, but it's those little miricles that remind us of how precious and strong these guys are.
Your eric is far stronger than my guy was, a true little miricle.
Good Luck :)
Katra & little Kyle
(now 11lb 8oz and still loving mommies milk, even though is mixed with nasty neosure - ick)
By , at
10:44 PM
re: "When do micro-premies usually stop having breathing problems?they can still have breathing issues when the leave the hospital and it's very common to leave with a respiration monitor to let the parents know when breathing stops.
re: "Have you heard from your cousin Matt and his family?matt did call me last week on the weekend. sunday, i think. but i was in the nicu all day and didn't get his call until the evening. he made it sound like he was just going to be in g.r. for the day, so i assumed that i had missed him. do you know if he's still around. cleverly, i don't have the contact number that he gave me in michigan.
hi becky! we did get your postcards - thanks! i need to find someway to show people all the cards he's getting.
thanks again for the supportive comments katra. i'm sorry to hear that kyle had such a tough time. i can only imagine what you must have been going through trying to get him to the 2 pound mark, knowing that the result would be getting rushed off to surgery.
you are correct, they did give him lasix and he not only didn't drop below two pounds, but gained a little bit! at this point i think they could probably take some of the caloric fortifier out of his food because he seems to be putting weight on a little too fast ( which has it's own set of consequences ).
oh. and yes, they are giving him caffeine. they've been slowing upping his dose and were at the upper limit of what they were comfortable giving him and he was still having 30-40 alarms a day at the peak.
it's odd how you can get used to the "shallow" alarms. you hear the alarm, look at his ribs to see if he's breathing and start tapping his foot or rubbing his back, wait a few seconds for him to get going and watch as his blood oxygen levels slowly rise. the whole process might take a minute.
i don't think you ever get used to the deeper alarms, where he takes much longer to get breathing started and blood oxygen levels up.
I know the alarms are a bit much after awhile and I know just saying “that is normal” is not going to help, but it is. While your life there is a rollercoaster, the meds are a dance, and the alarms are the score. I would be curious if you notice any inter-relation between the other babies on the unit. We swore the boys would behave themselves (alarms and all) when there was another girl in their nursery. I developed a tactic I called “threat medicine”, it worked on both Renae and Andy. Talk to them straight. Let them know what is expected of them, and what will happen if they don’t comply. It seems silly, but it worked for us. There were a few times Andy avoided being but on the vent again after a stern lecture from me. Pull no punches, think tough love.
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