Once again, sorry for waiting so long to post. By the time I've gotten home each late afternoon/evening there hasn't been time or any energy left in me to sit down and post. I hope this week I'll get better at posting every few days...we'll see! This is going to be a run down since last Wednesday, the day after my last post. This one will be long so get comfortable!
Ricky Shane: He's the one with the temper! Randy and I have decided he's the one who's going to lose his temper and be holding his breath till he passes out. He hasn't liked the nurses messing with him at all. When they do, his O2 sats drop like a rock. They've been keeping him pretty well sedated up until today (9-2).
8-27-08: Wed: Ricky's weight was 2lb. 10 oz. (1200gms up 80gms). They turned off his small bili light yesteday afternoon since his bilirubib was down to 2.9. His feeds this am were 7ml every 3 hrs and were increased to 8mls in the afternoon. His night blood gases were not so hot and his carbon dioxide level was up this am. So they had to turn his vent pressures back up to 32. St noon his gases were better, CO2 (carbon dioxide) was down to 36 (way better) but they only came down to 31 on the pressure. They kept his oxygen percentage at 30% on the vent also which had him keeping his O2 saturations at and around 90%. They also started him on Lasix 2 times a day to help pull some fluid off.
8-28-08/Thurs: weight: 2lb 10 1/2 oz (1210 gms). Since he did better yesterday pm, Dr. Levy tried to wean Ricky off the Jet ventilator this am, but no dice! Didn't tolerate it at all. his CO2 went back up into the 70's when they did a blood gas at 1038, so he stays on the Jet. By 1240 his blood gases were better, CO2 back down to 54. They increased his feed today to 12ml every 3hrs and is tolerating. His chest xray is still very hazy. He had to have blood tonight because his Hematocrit had dropped from 34 to 28.7. His ultrasound of his head today was negative for any bleeds-PRAISE GOD!!!
8-29-08/Fri: weight: 2lb. 10.33oz (1200 gms). Ricky's O2 sats got better after the blood. This am his feeds were increased to 15ml every 3hrs and they decreased the rate on his TPN and lipids). His CO2 was in the 50's early am but his noon gas they were 61. He got fiesty and decided to grab his tube so that irritated him and then he had to be bagged (use an ambu bag to give him extra breaths/help ventilate him)because his Sats dropped into the 40's. After he settled down his O2 saturations returned to within normal range. Still on lasix to pull off excess fluid.
8-30-08/Sat: weight: 2lb 14oz (1300gms). His feeds were upped to 18ml every 3 hrs. Today Ricky had his umbilical venous catheter d/c'd (removed) and they stopped his TPN and lipids. They are starting a peripheral IV to give him small amount of fluids. The nurse started the IV in his right hand first but he jerked just right and it clotted off so then they tried to restart it in his left hand and it ened up being arterial, so they left it in to draw blood gases and draw blood instead of sticking him so much. They finally got another one in his little head. His blod gases at 4am were better but then the one they drew at noon was bad. They redrew it out of his arterial line and they were so much better at 2pm.
8-31-08/Sun: weight: stayed the same. His feeds were upped to 22ml every 3hrs. They turned off the Jet ventilator for a minute this am, but when the doctor listened to his lungs, they were very wheezy. So they left him on the Jet and started some breathing treatments 3 times a day with a medication called Zopinex (like an albuterol inhaler). they were able to stop the fluids in his IV but he still is getting the Lasix to try to pull off some fluid. His blood gases were much better today and will try to lower the pressure on his ventilator.
9-1-08/Mon: weight:2lbs. 8.92oz (1160gms). His feeds are still at 22ml abd they are adding sodium since his level was a little down. Ricky's weight is down alot today but that was ok since he had some fluid he needed to get rid of. His chest xray was better today, the Zopinex treatments helped and will continue. They are slowly going down on the pressure (PIP) on his vent. At 4am it was at 23, noon down to 21, and then to 18 at 8pm. He scared me this afternoon at about 4pm when we were about to leave. He decided to drop his O2 saturations down into the 40's and no one was even bothering him. They turned up his oxygen, tried to suction to see if he had a plug, and repositioned him. They got out the ambu bag to bag him and he started to pick back up. It's like he knew what was coming if he didn't straighten back up. he slowly came back up and they left his oxygen turned up a bit till he got back up to where he neede to be. Then his blood gas was just fine after all of that..thank goodness!
9-2-08/Tues: weight: same as yesterday 2lb 8.92oz. his blood gases were good thru the night and his 8am gas was also good so they turned the pressure (PIP) down on the vent again to 17. Ricky's feeds are at 22ml still with calories added. The nurse today was spreading out his sedation meds a little more to see how he tolerated it. He had some of his usuall up and down sats this am, but they put him on his tummy and gave him one of the preemie pacifiers and he loved it! his O2 sat's were at 97-99% after that. They took out his arterial line because it quit working. Dr. Levy is thinking about trying him on bubble c-pap in the am, pray that he tolerates it!
Heath Allen: To me he looks like a little old man. His face is much thinner than Ricky's is and his hair isn't as thick. He likes being on his tummy and keeps his hands up under his chin or around his face alot. Jenna says that Ricky and Heath can fly since their on the Jets.
8-27-08/Wed: weight: 2lb 11oz (1220gms). Heath had a rough night. he had to have his oxygenation turned up on his vent from 40 all the way up to 90 at one time. They had to give him some IV boluses of Normal Saline and extra sedation because he kept fighting the vent. They got a bunch of stuff out of his lungs when they suctioned them and his chest xray was worse this am. His morning gases were better so they tried him off the vent this am and his blood gas got worse, his CO2 went up to 81 (bad). He went right back on the Jet vent. they started him on Lasix also to get some fluid off his lungs. He only dropped his sats low once today after back on the Jet vent and his blood gases improved, CO2 going down to 57. They increased his feeds to 12ml every 3hrs and is tolerating with no residual in his stomach. he like to be on his tummy and had alot better sats when he is.
8-28-08/Thurs: weight: 2lbs. 11.3oz (1230gms). Heath's feeds were increased to 15ml every 3hrs today. His echocardiogram of his heart ws negative and his head ultrasound to check for bleeds was also negative-PRAISE GOD!! his chest xray his still crummy; left side worse than the right which may be from him getting more of the dose of the surfactant on the right than left. He is also still on lasix. All the babies got a prophylactic dose of Indocin which is said to help prevent head bleeds and with PDA's (the heart murmur that babies can be born with). Dr. Levy says he may wait till Ricky and Heath are closer to 1500gms before he tries tp pull them off the vent again. He's trying to max out each one on their feeds and start adding calories and fats/proteins which also helps the lungs develop. Today his sats were good in the low 90's (they like the babies sats to range from 83-low 90's).
8-29-08/Fri: weight: 2lbs. 9 3/4oz. Heath doing well this am last night and this am his CO2 was in the 50s. his oxygenation setting on the Jet vent ws between 30-40%. Heath desats but brings them back up on his own. His feeds are still at 15ml every 3hrs and tolerating well. his sodium was low and his potssium elevated so they made adjustments to his TPN to help correct the imbalance. He had to have blood today because his hematocrit dropped from 35 to 31.6. When we got to the hospital Friday evening, Heath had been taken off the Jet ventilator and was back on the regular vent. his blood gases and O2 sats were doing fine after the switch. He his also still on Lasix to pull off excess fluid.
8-30-08/Sat: weight: 2lb. 8oz. His feeds were incresed to 18ml every 3 hrs and added calories. He is also tolerating the vent. Heath also will get mad or for no reason drops his sats down into the 70's and then slowly comes back on his own 9this isn't unusual for preemies). The left side of his lung is still worse. It looks like someone who would have emphysema. Dr. Levy said Ricky and Heath will have some chronic lung disease we just don't know how much yet and how long it will take to get better. It's possible they may be on oxygen when they come home. He wants them off the vents as soon as possible because the longer their on them, the worse the chronic lung disease can be. Tonight Heath finally opened his eyes good.
8-31-08/Sun: weight: 2lbs. 10oz (1200gms). Feeds increased to 22ml every 3hrs. Today they are taking Heath off the TPN and lipids and saline lock the PICC line (keep the line, but won't be using it) and will take out the PICC line Monday. His blood gases have been good. he still goes up and down on his O2 saturations, but held them up better in the evening.
9-1-08/Mon: weight: 2lb 10oz. (1210gms). Starting at 4am, Heath's CO2 levels climbed to 85 and then the next 3 gases at 5, 7, and 9am were all in the 70's. So they increase the pressure to 23. Dr. Levy also started him on the Zopinex breathing treatments and said if his CO2 doesn't get better, he goes back on the Jet ventilator. His feeds are still at 22ml every3 hrs and they added sodium alsoto them. They took out his PICC line today. At 1100 his blood gas had improved and his CO2 was down to 54. At around 4:20pm when Ricky was acting up and we were about to head back to Hico, I look over from Ricky's bed to see about 5 people standing around Heath's bed with the top open. When he was laying happily on his tummy, he got hold of his ET (breathing) tube and pulled it back. He of course started to desat and his vent alarms went off. They had to extubate/ remove that tube since it was no longer in the proper place and reintubate him. They put a new tube that was the same size (2.5) back down. He was not tolerating it because too much air was leaking around it. So they extubated (removed) that one and put down a half size bigger (3). the chest xray showed his left lung was over inflated so they readjusted his settings that had been just changed by the on call doctor back down to what they were before all the commotion happened. So they got him resituated and of course his next gas was awful with a CO2 of 75. But by 8pm it had improved and his CO@ was down to 55. He was doing much better this evening and they decided to leave settings as in for now since his sats were good. I tell ya, that is something you never want to see. First Ricky and his little spell and then Heath. Standing there watching them having to work on your baby for nearly 2 hrs and there's nothing you can do-you are completely helpless. Seeing Heath with his little eyes wide open and alert while they were trying to get him reintubated- you can't help but wonder what's going thru his precious little mind while all of this is taking place. I'm glad he won't be able to remember that, but I'm afraid it might be stuck in my mind forever. I know everything was going to be Ok at the end but it doesn't make it any less traumatic or less scary.
9-2-08/Tues: weight: 2lb. 9oz (1190gms). Heath's blood gases this am better with his CO2 down to 45. They decided to not make any changes on his vent for now. He did well the rest of the night. Dr. Levy increased his feeds to 24ml every 3 hrs and added a little more sodium to them also. He gets another chest xray, and blood gas in the am. They will also increase his caffeine in the am also. He was doing well the rest of the afternoon back to having some of his usual desats but always pulled them back up on his own.
Steven Tyler: Randy calls him pretty boy becasue he has the blondest hair you've every seen. He likes his pacifier and seems to have one of his hands above his head, on his head, or tucked behind his head.
8-27-08/Wed: weight: 2lb.1 3/4oz. Ty had a good night, vital signs stable. He's on the high humidity nasl cannula at 3L. His feeds were increased to 5ml every 3hrs and tolerating. He's still on Vancomycin but the gentamycin was d/c'd (discontinued). he got a glycerin suppository this am because he needs to poop! At 1pm they upped his feeds to 7mls. I got to check his temp and change his itty bitty diaper. his blood gases were d/c'd and he still had no growth on the cultures. We got a kick out of watching him sleep, looked like he was chasing rabbits, wiggling and raising his eyebrows and would straighten his legs out and strech when I was changing him.
8-28-08/Thurs: weight: 2lb 3/4oz (930). Feeds up to 10ml every 3hrs. He had a little spit up with his first increase but did well with the rest. Doing good today! Head ultrasound negative for bleeds-PRAISE GOD!!
8-29-08/Fri: weight: 2lbs. 2 1/2 oz (980gms). They upped his feeds at 5am to 12ml every 3hrs. He will breathe fast and drops his sats but will recover on his own. At 5pm his feeds were upped again to 15ml and tolerated well.
8-30-08 Sat.: weight: 2lb 3/4 oz (930gms). Ty had his O2 upped to 4L. He was having some apnea this am, dropping his sat and hear rate at change of shift. His O2 sats stayed good in the 80-90's. His feeds increased today to 18ml every 3hrs and added calories. Today they also took out his umbilical venous catheter (UVC line). They d/c'd his TPN and lipds also. Thought I was going to get to hold him today, but he was too up and down on his O2 saturation today to do so.
8-31-08/Sun: weight: 2lb 3.6oz (1010gms). Doing good. Increased his caffeine today to see if will help him keep his sats up more. His feeds still at 18mls. His O2 is still at 4L. He had 3 apnea episodes last night, needed to be stimulated and go up on oxygenation % to 50 and then work his way back down. We had to stimulate him a few times this am but would come back up. I GOT TO HOLD HIM!!! It was the best feeling in the world to be able to finally hold one of my precious babies. Not being to hold them or even just touch them after they are born was absolutley excruciating. To be deprived of that time to bond was worse than I ever imagined. To be able to kiss him on the head and just get close enough to smell him! (moms know what I mean about smelling your babies) I had lots of happy tears! He did so good too, keeping his sats in the high 90's up to a 100%. I think he liked it too! I got to hold him for about 30 minutes before they hooked up his feeding.
9-1-08/Mon: weight: 2lb. 4oz (1030gms). His feeds stayed the same at 18ml. He also is still at 4L with O2 % at 30%. Doing good, has his usuall ups and downs on his sats but recovers on his own. No apnea spells this evening.
9-2-08/Tues: weight: 2lb. 2oz (1kg). This am he was doing good with no apnea, just desatting some. Feeds still 18ml but added 24 calorie/oz. He was started on iron today. But this evening, Samantha his nurse, said he was being a bad boy and she was going to have to ground him! He had dropped his sats several times and had 2-3 episodes of apnea. He would have to be stimulated and turned his O2 % up until he recovered.
Leah Grace: Our little princess! She's such a doll and very active. Jenna says she looks like she's dancing when she gets going. Leah's our good girl and minds better than her brothers.
8-27-08/Wed: weight: 1lb 15oz. (809gms). On 6ml feeds every 3 hrs. her highest residual was 4cc but after she pooped then it went down to 1cc. She had a good night, had to be turned up to 23%on O2. She's on 3L and sats in the low 90's. She opened her eyes good today and I got to change her diaper.
8-28-08/Thurs: weight: 1lb 14oz (860gms). Feeds up to 9ml every 3 hrs with just a trace of residual left in her stomach. She's occasionally desatting sothey upped her to 4L of O2. Her hematocrit was also low at 27.7, slowly gone down from 33 on the 24th. Samantha her nurse got her IV in with just one stick in her right foot and Leah didn't even cry! So she got blood today, but doing good, sats better after blood. Her head ultrasound also negative for bleeds-PRAISE GOD!!
8-29-08/Fri: weight:2lbs (930gms). Doing better today with less drops in heart rate and desats since she got blood. Feeds up to 12mls every 3 hrs. She had little sqieeky hiccups tonight, so sweet!
8-30-08/Sat:weight: 2lbs (910gms). Today they d/c'd her TPN and lipids. Increased feeds to 14ml. Started some fluids in her IV . Her sats go down some but she recovers on her own. Today she was showing us her cute little grin. Got her a preemie pacifier to try out, not sure exactly what to do with it.
8-31-08/Sun: weight: 2lb 1oz (940gms). Today she gor her PICC line out and they increased her feeds to 16ml every 3 hrs. She's desatting some but still comes back on her own. Doing well this evening, tolerating her feeds.
9-1-08/Mon: weight: 2lb 1oz (930gms). Went to 17ml on her feeds. Her iv in her foot was d/c'd today. Her O2 is still at 4L and oxygenation % 27-25. Doing great and figured out how to suck on her pacifier this evening.
9-2-08/Tues: Leah's feedsstill at 17ml with added calories. Her O2 down to 3L. Having a few desats but nothing new. She started her iron today. Only had one spit ip this am. The nurse said her cord fell off and they kept it for us. She may be little but she's mighty!!!