Okay, been lazy about getting this going, but here are my first month of posts, in chronological order. From here on I'll try to post every day. Thanks for keeping tabs on me everyone!
Friday, 14 October 2011
I was born! Came out at 9:01:53 a.m. I made a cry which my parents were glad to hear since it meant my lungs were strong enough to cry on my own. Weighed 2 lb. 0 oz., 13 inches long/tall. Mom and Dad got to take a quick look at me then I went to the NICU and got in an incubator. Was breathing on CPAP immediately after birth, but this was taking a lot of work so they put me on a ventilator in the evening.
Saturday, 15 October 2011
Weight 1 lb. 15 oz. Just sleeping as much as possible today - yesterday was a busy day! Still on the ventilator. Mom was able to come down in a wheelchair to visit me.
Sunday, 16 October 2011
Weight 1 lb. 15.8 oz. Grandma and Grandpa K showed up this morning to visit. Grandma was reading me a lot of books. My breathing on the ventilator has been good so they took me off it and put me back on CPAP. It was easier this time than before; my chest wasn’t going all the way in every time I took a breath. I’m also under a blue light now to combat some jaundice, so between the eye protection for that and the CPAP tubes I look like I’m going into outer space or scuba diving or something - Dad thinks I look like Luke in the recovery unit on Hoth in Empire Strikes Back.
Monday, 17 October 2011
Weight 2 lb. 0 oz. Put on a little weight but no major changes from the day before.
Tuesday, 18 October 2011
Weight 2 lb. 0.8 oz. I was having problems with the CPAP so they reintubated me. This is a little step backward but I’m glad to have a little more help breathing - I was getting tuckered out! Mom changed my diaper today.
Wednesday, 19 October 2011
Weight 2 lb. 1.2 oz. I got the splint off my leg overnight which was nice because I could curl up into the fetal position again after having to keep my leg straight for awhile. They didn’t put any new lines in me or anything today, which was awesome and let me just stay calm all day today, just getting some rest and letting my body grow. Dad sat with me for an hour this morning and my monitors didn’t go off once! I was stable on my ventilator with oxygen at 21% all day and when they took my blood gases in the evening said they looked really good. Still under the blue light with my sunglasses on; my billiruben levels are going down but not as fast enough to take the light away yet. Might take until I’m doing some more digestion.
Thursday, 20 October 2011
Weight 2 lb. 1.2 oz. Got my billiruben down, and I’m off the blue light today. I have an IV in my head now. Also they took out the remaining arterial umbilical line - I was not too happy about this procedure and put up a fuss! Dad was there and gave me some boundaries after which brought my heart rate and breathing back down. So all in all I’m doing great, still with only 21% oxygen. In the evening I got swaddled in a blanket which I LOVED - as Mom said, “she’s dead to the world.” They said if I have a good night and stay stable mom and dad might be able to hold me tomorrow.
Friday, 21 October 2011
Weight 2 lb. 2.6 oz. I slept really well all night wrapped in my blanket - I like to be swaddled! This morning I was doing so well that they let me come out of the incubator and I got to have some skin-on-skin kangaroo care with my mom. I opened my eyes for a little bit to check out what was going on and then fell right asleep on her chest. Then after awhile mom started falling asleep too so they put me back in and I got re-swaddled. Then this afternoon my dad stopped by and changed my diaper - no poop but I’ve been digesting a lot better today (no residuals in one check, only 0.5 ml in the other) so it’ll come soon. They also had to change a lot of my tubing and stuff which freaked me out a bit and my oxygen saturation went down. But then I was able to get it back up all by myself without them increasing my ventilator settings. Afterward I opened my eyes for a bit and looked around then dad sang a bit and I went to sleep all swaddled up again. Nurse Amanda said that being swaddled actually helps me get stronger - and I like it!
Saturday, 22 October 2011
Weight 2 lb. 2.6 oz. I was swaddled again all night. Had some bouts of apnea and bradycardia overnight which they’re monitoring. Dad and Grandma K stopped by to visit and Dad got to hold me (his first time but not mine - Mom held me yesterday!) for about an hour and a half. I pretty much slept through the whole thing. I’m doing better on my digestion, still not pooping much but digestion is going well. I’m just trying to rest up and get strong - and I need to do better remembering to breathe. A little excitement tonight as I was moved from Nursery B to Nursery C, which is bigger and now I’m in the same room as Ben.
Sunday, 23 October 2011
Weight 2 lb. 2.9 oz. - I’ve grown almost 10 percent since I was born! Today I was back on the blue light since my billirubin was high again; I got different sunglasses today that are a thicker foam and I kept trying to push them off but the nurses kept putting them back on. I’d like to be swaddled again but I guess they can’t do that until I’m off the blue light since it needs to hit my skin. Dr. Green says I need to start digesting better so my body can take care of the billirubin on its own so they upped me to 3 ml per feeding from 2 before. I am digesting a little bit better I guess since I’m making some poopy diapers - Dad got to change one of them today but I decided to be nice to Mom and just have a wet diaper (no poops) when it was her turn to change me later in the afternoon. I came out and had some skin-to-skin time with Dad again today for about an hour (he sang a little Bob Dylan for me again - I assume at some point I’ll get to hear some songs from the last two decades but so far no dice) but then they needed to get me back in the incubator so I could have the light on me some more. I’m still not doing great remembering to breathe, so they upped a couple of my ventilator settings to provide me more oxygen, more times per minute. Of course, that just means I can get away with doing even less on my own so I was taking some breaks from breathing throughout the day today. While Mom was watching me I got the hiccups again (like a few days ago with Dad) but this time it freaked me out and I started flailing so Mom put her hands on me to calm me down. Then she had to go make some more food for us so Dad took over. I calmed down pretty easily but it took awhile to get my oxygen saturation levels back up (probably since I’m not taking very many breaths!).
Monday, 24 October 2011
Weight 2 lb. 3 oz. Off the blue lights today but time for the next adventure: getting a blood transfusion. Apparently my body’s not making enough blood cells so they need to add some since they keep taking mine out to test for various things! Oddly enough my blood type is O positive which means neither Dad (B negative) or Mom (A positive), or either Grandma and Grandpa K when they were here (both B negative) can donate for me, so I had to get a stranger’s blood instead. Because of where the lines are they can’t swaddle me like the past few days (before the blue light) so I’m unwrapped again and don’t really like that - I keep trying to fold my legs up into the fetal position but it’s too much work to keep them there. Mom, Dad, and Grandma K all came to visit this afternoon and I opened my eyes for a bit to try to look at them but still can’t see very well so I went back to sleep.
They also can’t feed me while doing the blood transfusion so as to not divert blood to the digestive tract so I’ll be getting all my nutrients intravenously for now. After the blood they start me on a course of medicine to close a hole in my heart that’s present in fetuses and normally closes before birth but I came out too soon so it’s still open and according to the EKG doesn’t seem to be closing.
Dr. Green got the lab results back on our placentas and big surprise, it was Ben’s fault that we came out too early - he was apparently starting to get infected (luckily the infection didn’t make it past the placenta so he’s fine). So he was causing me trouble, as usual. But at least now I’ve got my own space and he can’t steal all the nutrients since I get my own!
Tuesday, 25 October 2011
Weight 2 lb. 6.8 oz. - that’s a big jump, so I suspect the nurses hadn’t been updating my board the past couple days. Well, I’m back on the blue light again and wearing my shades but aside from the high billirubin levels I’m doing well, my breathing has been much more regular even though they reduced my ventilator settings a bit (from 22 breaths per minute to 20). The blood transfusion is done but still no feedings since I’m on a course of medicine to close the hole in my heart. And the phototherapy means I again can’t be swaddled so I’ve been flailing a bit - I like my boundaries! Mom, Dad, and Grandma K came by to visit in the afternoon after Mom’s doctor appointment and it was nice to have some boundaries for at least a little while while Mom and Dad were there holding my feet and hands. Looking forward to being able to be swaddled and eat again, hopefully soon!
Wednesday, 26 October 2011
2 lb. 8.6 oz. I’m still on the ventilator although they’ve lowered the settings (down to 16 breaths per minute now), and they’d like to put me on CPAP soon but I keep forgetting to breathe so might need a little longer on the ventilator. Good news though is my oxygen levels crashed a couple times this afternoon and each time I was able to get them back up to normal on my own, without any increase in the vent settings (well, to be honest one time Mom had to jostle me a bit to remind me to breathe but OTHER than that it was all me). Dad took my temperature and changed my diaper and the nurse said did it like a pro (of course I think I deserve some credit for going along with it and not being fidgety or getting my legs in the way). And I’m off the phototherapy again which is great since it means I can be swaddled again! They still unfortunately have to leave my feet free since I have lines running into both of them (the PICC line in the left leg, regular IV in the other) but Mom and Dad were able to give my feet some boundaries for awhile this afternoon which was nice, and helped me calm down when I was having breathing issues and get back into a normal rhythm.
First round of medicine (indomethacin) for the hole in my heart is done but wasn’t enough (Dr. Nystrom said I went from a large hole to a medium-large one - in either case we’re talking about a couple millimeters so I think he’s exaggerating calling that “large”). Starting a second round today which will be done in 24 hours. Hopefully that’ll take care of the problem and I can get back to feeding; in the meantime I’m just going to be sleeping, enjoying being swaddled again. And I now have a buddy: Grandma K gave me a pink monkey (Mom’s calling him my “guy” since that’s what my cousin Madeleine calls hers) which is snuggled up next to me to help keep me warm and company.
Thursday, 27 October 2011
2 lb. 5.9 oz. My weight appears to have gone down a lot but they’re not sure I actually lost weight, it might be just a reflection of the difficulty of getting an accurate weight with the ventilator in vs. CPAP - that’s right, I’m off the ventilator! It’s great to have that tube out of my throat and be able to breathe on my own (although it’s a little more work, it’s a lot more comfortable!). I’m doing well on it, keeping my oxygen saturation levels pretty good, and the couple times it dropped I was able to bring it back up on my own with no assistance or extra oxygen. They were also able to drop my oxygen percentage from about thirty percent when I first went on CPAP to 24 percent by the evening. Mom and Grandma K came by this afternoon and were happy to see me wrapped up in my pink guy - he’s warm! I continued to be feisty and was making life difficult for Dad when he was changing my diaper during his visit in the evening. But in exchange I opened my eyes for a few minutes so he could see them. So it was a pretty good deal for him overall I think - I have cute eyes!
Sunday, 30 October 2011
Weight? Mom held me for 2 hours today! It was really nice, but my stupid CPAP tubes kept getting in the way and I had a few episodes as a result. I can’t wait for those to come out! (Neither can my mom.) Once the RT fixed them, I fell right to sleep on Mom’s chest.
Monday, 31 October 2011
2 lbs. 11 oz. When Mom and Grandma K. came to visit I was wide awake and looking all around. I think I was mainly uncomfortable because my CPAP tubes were squishing my face. Nurse Sandy tried to fix them, but my face is so small!! The nurses had me wrapped up tight, but I was able to wriggle my arm out and do my daily stretches and fist shaking for Grandma K.
Tuesday, 1 November 2011
2 lbs. 12 oz. All wrapped up and happy as a clam. Mom and Grandma K. visited for about an hour and I slept the whole time with no episodes. My CPAP tubes were re-adjusted from yesterday and I was much more comfortable. I am getting 10mls of food at a time, but I’m still having trouble digesting all of it, so the doctor may put my PICC line back in tomorrow. I didn’t like that the last time, and I don’t think I’ll like it this time either.
Dad came by in the evening and I was okay getting my diaper changed and temperature taken, but then it was time for my bath (well, wipedown with soapy water at least) which was another story entirely. I tried my best to stay calm and composed (though Nurse Mondell could tell from my blood pressure that I was stressed) and Dad held my hands a little bit while doing the bath, which helped, but eventually couldn’t hold it in and - I’m sorry to say - threw a bit of a tantrum, crying until I actually ran out of breath a bit and had to slow down. I also peed on the bedding during the bath so the nurse had to change all of it while Dad held me up. I didn’t like being up in the air with no boundaries but was so tired at that point from crying that I couldn’t say much about it. Also the nurse gave me a pacifier for a couple seconds and that calmed me down, as much because I was pooped as for anything else. She then measured my belly and said it looks like I have “CPAP belly” where too much air gets into the stomach and intestines so I’m starting to look a bit bloated. She and Dad put me to sleep on my stomach - no small structural feat given the need to keep the CPAP tubes out of the way - which might help me digest better or at least get some of this air out of my intestines. Hopefully I’ll be better tomorrow; my last feeding I still had all of the previous feed in my stomach (though in my defense it was partially digested, just hadn’t moved onward to the intestine).
Wednesday, 2 November 2011
2 lb. 12 oz. Still on CPAP today but they’ve taken away all the backup breaths so I was just breathing on my own. So far so good, and only on 21% oxygen (i.e. regular air). My digesting still needs some work but everyone seems happy that I’m doing well with the breathing at least.
Thursday, 3 November 2011
2 lb. 14.9 oz. I’m now on the lowest CPAP settings (level 4, still with no backup breaths) and breathing fine. Digestion remains an issue, so they’ve lowered my feedings down to 8 ml in the hopes that with less in my stomach I can deal with it better. Mom came by today and held me for a long time! That was a little uncomfortable to get in position but then good. For the first time she held me without “kangaroo care”, just standard cradling instead - this gave Mom a chance to look at my face at least. The nurses also thought I was being really funny since I kept raising my arms as if to signal victory. Grandma K got some good pictures.
Friday, 4 November 2011
2 lb. 14.9 oz. Not a good day. I was having apneic and bradycardiac episodes repeatedly throughout the day, and scarier was that as the day progressed sometimes I was taking a LONG time to recover from them, even when the nurses or my parents shook and stimulated me a lot. Not sure what the problem is - it’s not like I was out partying last night, but I’m still just pooped and it’s a lot of work to breathe AND keep my heart beating AND try to digest food! Anyhow, Dr. Green and the nurses were worried about this so they upped my CPAP settings, then when I was still having problems recuperating from my episodes they upped them further. Once I got to CPAP level 5 with 20 backup breaths per minute I seemed to do a little better so they left me on that level. They also ran some cultures to check on whether I possibly had an infection (and started me on antibiotics in case I did), and took me off of my feedings to give my body less to do at once and see if that helps. Mom and Dad couldn’t visit a whole lot since the nurses were doing a lot of work on me taking blood and putting in new i.v.’s but they did stop and say hi.
Saturday, 5 November 2011
2 lb. 14.7 oz. Lost a little bit of weight today (probably because I’m off feedings while they try to get my breathing going) but a good tradeoff since in all other ways I’m doing MUCH better. I got a blood transfusion this morning - a second one coming this evening - since my blood cell counts were low and I’d need one anyway, and they figured they may as well do it while I was already off feedings since I can’t get fed during transfusions anyway. The cultures have been negative so far but they left me on the antibiotics. Whatever the cause - lots of stuff going on! - I felt a lot better today, moved around more and reacted when stuff was happening to me, including doing my patented “power to the people” raised fist. Mom and Dad came by this afternoon to check on me and were happy to see me doing a lot better. Dad took my temperature - I was active but actually was pretty cooperative, it was nice to have some contact time after the stresses of yesterday - and changed my diaper. Then while him and Mom were both there, about five minutes after he changed my diaper I made a giant poop that was so loud coming out that Mom, Dad, and the nurse all heard it! But they were happy my digestive tract was functioning and Dad changed my diaper again so I had a nice clean one. They swaddled me back up and let me go back to sleep then. Hopefully I can stay well the rest of the night and start my feedings up again tomorrow!
Sunday, 6 November 2011
2 lb. 14.4 oz. No major updates today - which after my struggles Friday is good news! I left the drama up to Ben today who had fun freaking out Mom and Dad with a major apneic/bradycardia episode. I did restart feedings, but only 5 ml per feeding and only feeding every 4 hours (was doing every 3 before). We’ll see how well I handle this before they up it any. This afternoon Dad visited with me for a little bit and held me hand while I was sleeping, singing to me when I had some bad dreams. Then Mom visited for awhile and did my temperature and diaper change. Dr. Green told them that they found a little bit of bacteria in my recent urine culture but the numbers were SO low that they are assuming it was just contamination, so Nurse Kaia took another culture this morning to check. Dr. Green says that it’s hard to get clean urine samples when we’re so little, but the alternative is to use a needle and take a sample from inside my bladder, which doesn’t sound fun so I’m glad they’re keeping that as a last resort! Since they’re assuming this was just contamination and my blood cultures didn’t show any bacteria, they stopped my antibiotics (though Dr. Green said I could go back on them if I start having issues again). All in all a relatively boring day which is a good thing. Hopefully I’ll be handling my feedings better from now on and can get back to putting on some weight!
Monday, 7 November 2011
Broke the 3 lb. barrier - now at 3 lb. 2 oz.! Another quietly productive day, they’ve upped my feedings slightly to 7 ml each and I’ve been digesting most of it so that’s a step forward. No major alarms or spells today either. Mom and Dad came by in the late afternoon and Dad held me for about an hour and a half - I enjoyed that, just cuddled up and slept comfortably the whole time, other than when I woke briefly to make a loud stool, then fell back asleep (Dad had changed my diaper before taking me out of the incubator and was glad that he had done it right and my diaper didn’t leak!). And my repeat urine culture came back negative so it must have been contamination the first time, no infections for me!
Tuesday, 8 November 2011
3 lb. 3 oz. Another quiet day for me. Kangarooed with Mom for about an hour in the afternoon with no fuss. I kept moving my arms around to touch my face (and probably to pull out my tubes). Slept the whole time on Mom’s chest while she sang to me. Feedings have been upped to 10 ml; still not digesting everything, but doing better. Gained an ounce from yesterday. The occupational therapist saw me today; I was feisty for her when she was testing my reflexes, which she liked to see. She also gave me some of Mom’s milk on a pacifier - it was really good! I like holding my pacifier too! Later in the day Dad came by and when he first saw me I was asleep but still holding my arm straight up in the air just to be different. Then I opened my eyes for a little bit and went back to sleep. The couple of days off feeding and blood transfusions seem to have helped since I’m doing much better on my feedings - up to 10 ml at a time now and digesting most of it.
Wednesday, 9 November 2011
3 lb. 3 oz. Feedings upped to 12 ml and still digesting well. Another quiet day - no spells, I behaved for everyone and have just been sleeping and digesting. And I’ve put on over a pound now!
Thursday, 10 November 2011
3 lb. 4 oz. Progress on the breathing front - they lowered my CPAP backup breaths from 20 per minute to 10 per minute, and I’m doing just fine with that - no apneic episodes, and not even many minor desats! I’m also doing better with feedings lately; I’m up to 15ml every three hours now, going up to 17ml per feeding overnight. Got to meet Grandma and Grandpa A this afternoon when they came by with Mom to visit - always fun to have new family members see how cute I am, and (not surprisingly, since it’s true) they thought I was adorable. Dad came by on his own after work this evening and held me for about half an hour but then I started getting fussy (my CPAP tubes were pulling on my nose in a weird way) and was due for feeding and diaper change anyway so they put me back in the incubator. I continued to fuss for quite awhile even after Dad changed my diaper, took my temperature, and swaddled me back up, but finally settled back down. Not sure why I was putting up such a fight, I think I just wanted to be left alone to work on my digestion since I’m getting a lot more food now.
Friday, 11 November 2011
3 lb. 6.5 oz. Feedings leveled off at 19 ml per feeding, and after having a couple of big poops my residuals are now going down (last one at my 5:00 feeding was only 4 ml which means I had digested at least 15ml). Also finally figuring out this “remembering to breathe” thing (which is WAY too much work but I guess they can’t leave me connected to this machine forever, and I do want to get these tubes out of my nose) which allowed them to lower my CPAP to only 5 backup breaths per minute (from 10 yesterday). I might even be ready to try NO backup breaths again soon, but I think they want to make sure I’m stable on my own before trying that again since I gave everyone a bit of a scare last time! Mom, Grandma A, and Grandpa A came by this afternoon. When they came to visit I was cranky and crying so Mom gave me my pacifier which calmed me down (I LOVE my paci!) and I even held it in my own mouth for awhile, but then started crying again because I had a poopy diaper (though the excitement of the pacifier had made me forget about that briefly). So Mom changed me and then once I had a nice clean diaper and was swaddled up again I fell right asleep and slept soundly the rest of the day.
Saturday, 12 November 2011
3 lb. 9 oz. - going to catch up to Ben soon at this rate! They also took off my last backup breaths, leaving me having to remember to breathe all on my own, and I’m doing okay with it so far! Mom held me for almost an hour today. I had no major spells and enjoyed a nice long visit from Mom, Dad, and Grandma and Grandpa A. Feeding-wise I’m still holding at 19 mls per feeding. I guess they don’t want to add any more to the feedings since my stomach is still tiny, but they want me to get more calories so I can grow faster, so instead they added some sort of fortification powder to Mom’s milk to bring it from 20 calories per ounce to 22. So I guess I’m getting about 18 calories or so per feeding.
Sunday, 13 November 2011
30 days old! Weight 3 lb. 9 oz. (same as yesterday). Feedings upped to 24 ml per feeding (still with the fortified 22 cal/oz milk), though they’re delivering it over a 30-minute period to make it a little easier on my stomach. Mom and Dad came by in late morning with Grandma and Grandpa A to visit. Dad took my temperature and changed my diaper, and I stayed calm the whole time although I was happier once I got wrapped back up. Still doing well without any backup breaths from the CPAP. I got a little fussy in the early afternoon and was trying to pull off my CPAP tubes so Mom and Dad gave me my pacifier and held my arms a little bit which eventually calmed me down. Then Nurse Kristina rewrapped me up so I didn’t have both arms free; not sure how I feel about that since it makes it harder to pull out my tubes, but I do like being swaddled up.
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