Monday, December 28, 2009

Happy Happy Joy Joy

Logan is still negative for RSV. They did a super pubic cath on him yesterday because the clean catch and regular cath was not good enough apparently. I did like the fact they stuck a needle in my babies bladder to take urine....He was switched back to automode on the ventilator last night and this morning he was put back on cpap! They weened the pressure from 18 to 13 and oxygen from 32 to 27% He is doing good. Dr. Brown is back from vacation today so hopefully we can get the ball rolling with his surgeries so he can come home. I spent some alone time with him last night and he pooped on me while I tried to change his diaper. He loves me. He smiled at him mobile most of the time and tried to pull his trach off while I was there. I just learned from the nurse 3 urine samples later that all showed the same thing..that he has a UTI and he is being started on antibiotics.

Andrew and Jacob are doing well. Jacob seems like he is starting to look at faces more and focus a little better. He is doing some 2 second smiles and seems happy. Andrew is still a sweet boy. Both love to cuddle.

All 3 of my babies at home are sick. Of course Ava is couching all over everyone. She just informed me she picked her boo boo on her arm and needs to take a bath. She is currently playing with cut up hot dogs in small blue best buy bag. Glad she is so entertained messing up the house.

Goal of the week is to get this house back in shape! Planning on giving a bunch of crap away and throwing away the crappy crap :-)

Trying to motivate myself to get up and get the kids ready so I can go to the bank and wal-mart................ I love my husband. He is so wonderful..He spent all day cleaning our room. Yes did require taking all day...hopefully I can finish it today. Must stop Ava from putting hot dogs in the toy lawnmower now!

Friday, December 25, 2009

Merry Christmas

Not such a Merry Christmas for Logan who of course still resides at Winnie Palmer Hospital. He had a bad Christmas Eve. He apparently desated down in to the 30's quite a bit during the morning and stopped breathing at a normal range and some points stop breathing all together. He was not waking up to stimulation at all. So of course they ran the same battery of test they have been doing almost bi-weekly at this point and of course everything has been negative. Even the RSV is negative. They did an RSV Cx yesterday and today. Both are negative. His ABG is normal and Co2 is in a normal range for him. I think it was 58. The only thing that has change is a blood pressure med they put him on. He was taking clonidine, but it was not doing to much to help his blood pressure anyways. One of the side effects it drowsiness. It definitely made him sleepy. They did stop it and he has woke up. His blood pressure is still pretty high and to compensate his pulse is low. Don't know what they are going to do about his BP now. He is currently on 30% back on the vent fully breathing for him at a rate of 40. He is starting to breath over the vent again and hoping in the next 24 hours they can put him back on auto mode and ween him back off the vent again.

We woke up around 8 this morning fed the babies and then open presents. Ava seemed to have forgotten they joy of unwrapping presents that she discovered last year, but soon realized again and unwrapped all her presents then helped Jack unwrap his too. After each gift she tried to open it and play with it, until she realized there were more. LOL when she got her Phineas and Ferb DVD she immediately tried to go open it and put it in her DVD player. After clean up time and settling down the babies, Ava sat in "her" recliner and watched P. & F. She was so into the commercial free cartoon I had to call her name like 6 times for her to respond.

Jack is currently home with the children while I work 1p to 7p where I currently only have 1 patient so I have plenty of time to write this blog :-) I have to take the chart to the doctor now. I will post pictures later.

Monday, December 21, 2009

MRI DAY








Jacob had his MRI today. It makes me sick when I look at the images. I know he is a miracle and will serve the purpose God made for him. It still make me want to puke to know that my beautiful son's brain is wrecked for not fault of his own. Like any mother I ask why? Why him? He did great though. We are at All Children's Hospital in St. Pete. I have to spend the night with him just to make sure he does not stop breathing from the sedation. This sucks! He is very cranky. He FINALLY just went to sleep. He has been awake ALLLLLLLLLLL day! I will not have the official report for a few days if it is worse than the orgional ultrasound. There is so much damage it is hard for me to tell. FYI All the big black areas in the images I posted should be grey.








Logan is doing wonderful! He is at 25% on cpap mode. They are giving him fentenyl for his "pain" and valum. This is all I have to write for now. I am going to sleep. Because apparently parents have to stay at kids beside so nurses have to do no work at all.

Sunday, December 20, 2009

RSV again!

I found out at 5am this morning that Logan tested positive for RSV. He has had a runny nose over the night and was desating. Still at 28% and on cpap. Please pray he does not deteriorate! He will NOT go to surgery this week because of the RSV. I also found out that Logan has kidney stones in both kidney from the Lasix he has been on. So they are changing his meds and surgery will not be until sometime after the 28th when Dr. Brown comes back from vacation. She actually thinks he will be coming HOME IN 3-4 weeks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Please pray for Jacob as he undergoes his MRI tomorrow and that he comes out from the sedation okay. I pray they see GOOD changes on his MRI and nothing new.
Thank you to my sisters for taking care of my babies while Jack and I are at work. Thank you Jill for taking care of my babies on Monday.

Friday, December 18, 2009

Vent changes and surgery date

Logan continues to do well. He is still on 28% oxygen and is now OFF THE VENTILATOR and on cpap mode all the time. I hope he does well this time! He is still at 0.8 on prednisone. He has a surgery date for Wednesday 12-23-09 to repair hernias, do the inisiant if I spelled that right, and G-tube placement. Please pray for him that all goes well. I really hope he will get to come home in January.

Jacob and Andrew are having better days. They are still congested, but not coughing like the used to. They have been sleeping through most of the night. Jacob more than Andrew. Jacob is awake a lot more and loves being held ALL THE TIME. That kid cries anytime he is not held, but he can literaly throw a fit from one end of the room to the other. If he is on his belly he kicks himself "crying the entire time of course" from one end of the room to the other then turns himself and kicks himself across the room some more. The tips of his toes have skin peeling on them from this. I'm going to make him start wearing shoes I guess lol.

Andrew is so sweet and lovable he is to busy smiling and cooing at you to eat him bottle most of the time. He holds his head up better every day. He turns himself in circles on his belly buy doesn't move like Jacob. I wish Jacob would smile. :-(

Ava has these building blocks she got from Jennifer Brandt. (Thank You) I bought her some for Christmas too. She LOVES THEM. She is using one right now pretending it is a bar of soap I guess. She is washing under her arm pits with it in the living room while she watches her Phineas and Ferb. She is telling me the colors of all her blocks and building mommy castles.

I am worried about breastfeeding. Seems like no matter how much I pump, I am getting less and less milk. As of yesterday I officially have not produced enough to feed Andrew and Jacob without formula added or thawing from the deep freezer. I have been trying to save what I have left in the freezer for Logan while he is in the NICU. I only have maybe 30 5-6 oz bags left. Enough for a few more weeks. I will continue to pump like I did with Ava until the don't work at all. With Ava my milk supply did not drop like this until she was 10 months old. I guess when I run out whatever I can pump I will split 3 ways and supplement formula. I guess I should be glad I have been able to fully breastfeed 3 babies for almost 5 months. I just realized the boys are 5 months old today.

I think I will get around to decorating the Christmas tree today. It has been sitting in the stand since Monday. I just feel so blah. I don't have a desire decorate it. Maybe when I finally finish pumping...........takes me over an hour to pump 6oz except 1st thing in the morning it takes me an hour to pump 12 oz if I am lucky :-(

Thursday, December 17, 2009

Logan's ultrasound result and withdrawls

Logan had an upper GI series done yesterday to determine if he need the procedure for reflux. It came back that he does not have reflux...which I find hard to believe...how did he always have milk in his mouth when he was on bolus NG tube feeds??? However, they did think they saw some narrowing deformity in his stomach. So, today he had an ultrasound of his stomach done which was apparently normal. Last night he was turned down to 26% on his oxygen. He did very well all day on his saturations. He has not been sleeping well. The nurse thinks he is withdrawing off all the addictive medications he has been on. I. E. Methadone and Versed. He is sweaty, irritable and crying a lot. He is back at 28% but like I said he has been very upset. He is still getting 12 hours a day on cpap. 6 on and 6 off. Still no word on surgery day or time.

Tuesday, December 15, 2009

Bummed for Logan

Logan had his swallow evaluation today. This is where they put him in front basically a live x-ray. They have him drink barium from a bottle and see how it goes through his digestive trach. 1st they tried thin liquid he did drink and swallow a few times then he aspirated a small amount of the fluid. :-( Then they did the same process with thickened liquid with the same results. I walked in his room as Dr. Brown was seeing him after the procedure. I missed the procedure...but that is another story grrr! Dr. Brown says he needs a G-tube. This is a tube that goes directly into his stomach to feed him instead of having the NG-tube in his nose. He is going to surgery either the end of this week or early next week. He will have all the procedures he needs done at once. This includes the G-tube 2 hernia repairs, and some procedure with the stomach to help prevent reflux I forget the name of.

As for his respiratory status he is doing very well right now. His steroids are at 0.8mg He is at 28% and is sprinting off the ventilator 4hours 2x a day. She is weening steroids every other day opposite of the versed she is weening. Basically once he stabilizes after surgery and he continues to improve respirtatory wise (She is thinking 3-4 weeks) She will consult with pulmonology again and order the home ventilator/c-pap and he will go home!!!!

It really hit me last night about Jacob. This entire time since I knew of his brain damage I continued to think positive and just believe he would be okay. Then the more I thought about it and I thought about what the neurologist told me last week it just hit me. I have been thinking oh no I am going to have a handicapped child. Not once did I think about Jacob's life, just how it was going to affect mine. He is the one that is going to struggle to achieve every mild stone and he is the one who can be totally alert and with it and have a body that does not want to move when he wants it to. I do continue to believe that God has a plan and I will continue to have faith in what HE has planned, but I'm scared. I am more scared for him than Logan. Logan is going to be fine even though he has had some rough moments I have always known that once his lungs heal he would be neurologically intact. The MRI just confirmed what I already felt. Logan may need oxygen for a long time and may not be able to run and play sports, but he is not going to have to deal with what Jacob has to potentinally endure his entire life. I seen a teenager with cerebral palsy today. He was wheel chair bound. He had the classic contracted arms and bent wrist. Finger spread wide open like Jacob does. He had the biggest happiest smile on his face though as he interacted with his family. They were talking to him and we kept answering "Yes, Yes, Yes, Yes" The least I can do for Jacob is make sure he is happy. Not saying that is his future at all! I have seen lots of children and adults function with CP. I pray he WILL walk, talk, have the ability to learn and most important go to the bathroom on his own and wipe his own butt! :-D

Last night I do believe I figure out why Ava has been acting like a wild Ape screaming her head off for the last few weeks. She cried and threw stuff mostly at night, refused to eat or drink, and refused medication. She was pulling on her ear one night and holding her head other nights. That poor baby has been cutting all 4 of her 2nd molars at one time.

Andrew is so sweet he follows you with his eyes and has the biggest cutest smile on his face. Both the boys are sleeping a little longer (during the day and morning) They think night time is awake time. They are going 5 hours some times longer between feedings and eating 6oz most of the time. Speaking of that little man he is crying now so I better go pay him some attention.

Sunday, December 13, 2009

Keep on praying!

Logan has been doing wonderful over the last week. They turned his oxygen down to 28% over night and he continue to maintain mid-90's sats. I just called the nurse and she said he was desating. He had to be turned back up to 30% Hopefully this is temporary Last weekend he did the same thing went from the 30's to 45%. He doesn't seem to like weekend shifts very much. :-) Something always happens on the weekend it seems. They weened his steroids down again today to. This can also be the reason for the increase. He is getting 3 hours a day off the vent on cpap now. His feeds are at 24cc hour. He is almost 8lbs.
Andrew and Jacob pulled an all-nighter. They decided they were not going to sleep last night. So they were kicked out of our bedroom and banished to the baby cage to sleep in their bouncy chairs around 1am. Not sure how much sleep they had they were still crying when I went to sleep and whining when I woke up at 5:30am. I helped Jack feed them. He said they then decided to sleep until 10:30ish.
Ava is going with Jack's parents to see Santa Claus today. She went with Jack to a breakfast with LPOM yesterday with Santa and would not go near him. LOL I hope she behaves for them better than Jack.

Friday, December 11, 2009

Picture day in the NICU and MRI results

We attempted to get our first picture of All 6 of us together, but Ava did not want that to happen. So we have a picture of Jack, me, and the babies with Ava hiding under the chairs. Logan is doing wonderful!!!! I just spoke with the RT and he has been weened to 34% he is still on automode on the vent and he is doing great. He is getting cpap for an hour 2x a day. He had his MRI last night. I am VERY happy to report that he has ALL the lobes of his brain intact. The white and gray matter is normal. THERE ARE NO CYSTS! The only issue at all is a little excess fluid around the brain that has to be monitored. He is off methadone as of yesterday. He is still on the prednisone at 1.6mg not sure how many time of day now. Oh, and he is off isolation. Ava is still being very bad screams, yells, runs away, hits, name calls, pours liquids all over the floor on purpose, rips things apart she know she should not, and won't sit on the potty anymore. I want to BEAT her! Babies had a good night the other day and a good day yesterday. Last night they were HORRIBLE! So I hope tonight is a good night. We bought our Christmas tree today, but it is still sitting outside. Jack is still outside finishing up the Christmas lights. I think that is all for now.

Thursday, December 10, 2009

Everything is going to be OKAY!

Logan is doing really good still. Lets keep our fingers crossed and keep praying. He is OFF methadone! He is at 1.6 on his predniosone and they were able to ween him to 38% yesterday on his oxygen. He is still maintaining his sats in the 90's. His lung culture is still positive for seratitia or how ever it is spelled. He is going for his MRI tonight and is suppose to have a swollow study on Friday. In the neat future he will more than likely have a g-tube placed and his inguinal hernia repaired. If everything goes as planned and he continues to improve he will be HOME by then end of January. If he keeps doing well they will also let him have cpap on his trach instead of ventilator during parts of the day. He is back on automode on the vent as well. He had Christmas pictures taken yesterday as well. I have not got to see them yet. On Friday we are going to have family pics done. It will be the 1st time all 6 of us will be in 1 picture!

Andrew and Jacob are doing good. Jacob had his appt with the neurologist. She is concerned with what she seen on the MRI from WPH. She thinks there is a very high likely hood that he has Cerebral Palsy. He is very stiff in he legs and hips. She has concerns he may not be able to walk or talk from where the damage is. I know Jacob will prevail just as Logan has been doing. I have no doubt he will struggle but he will get the best care out there.

Ava has been SUPER BAD! but she is still my sweet angel.

Friday, December 4, 2009

A NEW RECORD LOW FOR LOGAN PRAISE GOD!

I'm so excited! I called WPH this morning and spoke with Logan's nurse. He is at 36% YES you read that right 36%! He is STILL sating high enough to ween at this point. I would love to see him at room air 21% before they take the steroids off to see how he does. He is still on prednisone. He is still on the ventilator on a rate. The rate is down to 28. We started at 55. He is still on alot of pressure support thought with a PEEP of 10. He is scheduled for an MRI today. I am very excited about this as well. This is the close as he has come to getting better I don't knoow what to think. Please pray that he does not backslide when he comes off the steroids again. 6 times is enough on steroids. He can't stay on them. I wish I could go down there right now, but I am home with some sick children. I have not seen him in almost 3 days as this point due to everyones' sickies. All 3 of this children home are on amoxicillin for respitory infections. Both babies are over in the baby cage whining. Ava is playing with her "Laptop" a portable DVD player she watches Dora on all day. When Daddy comes home tonight I get to go see Logan and go back to my wonderful job tomorrow.

My Laptop "Mr. Laptop" died the other day. I delivered his ulogy on facebook lastnight lol. From Facebook: Jennifer Keigans Gunter $700+ down the drain! RIP Mr. Laptop 11/28/09-12-2-09 He was 1 yr & 5 days old. He death resulted from spilled breast milk. He has been battling his condition since early 08/09 when a 2 yr old dumped 4oz of breast milk into his keyboard. Since then he has had many attempts to fix him w/ no success & even a ghetto keyboard. After months of freezing & overheating & an attempted reformat. Mr. Laptop is now dead.

I have now taken over Jack's laptop. I refused to buy a new one and spend a ton of money like I did last time when all I do is get online. I considered a netbook but don't really want the tiny screen. I got an awsome deal on Jack's in August It was only around $250 when I bought it with decent features. Now I can't find one with the same features for less than $400. Though I have had fun pretend shopping for a new laptop online I will be responsible for now and not run the credit card debt up higher.

Well time to pump the boobies and maybe take a shower...I can really use one of those today. :-)

Tuesday, December 1, 2009

Sick babies and a new trach for Logan

Andrew and Jacob are sickies! They both have quite a nasty cold still. They have been sick for about 2 weeks seems like it is really turning in to a hacking cough with stuffy nose. I have really been watching what kind of foods I eat and that seems to have help with their little bellies. They have still had their whining moments but not like it was before. I finally packed up all their newborn cloths yesterday and brought out the 0-3 months. They are both over 10lbs so I figured it was about time lol. Andrew is 10 lbs 12oz Jacob is 11 lbs 6oz. Logan is 7lbs 6oz. He is not gaining weight because of the steroids he has been on. Ava has been quite outspoken lately and defiantly lets you know she is there so she can have her attention. Overall all is good at home. House is staying somewhat clean but carpets and floors are still driving me crazy they are filthy! Our dishwasher broke on Black Friday! Conveniently it was a day of sales lol and we got a new 1 really really cheap under $200. I was quite impressed that Jack was able to install is successfully by himself of Saturday while I was at work. I thought they plugged in but it is hard wired in...who knew.

Logan has been on antibiotics for 7 days now. His IV went bad again. So they changed his antibiotics to an aerosol. Didn't even know they made them that way. So no more IV sticks for him. He has no veins left for them to stick. The ENT doctor that did his trach came in today and changed his trach from a 3.5 tube to a 4.o. He had a HUGE air leak around the trach. Now the air leak is gone and he is doing very very very well. I continue to have faith in God that this last setback was his last and it will only be uphill from here. I believe in the power of prayer and God's miraculous healing and miracle is taking place at Winnie Palmer and in the very room he lays in. He will come home and he will be able to breath off of mechanical ventilation one day. As soon as they got rid of the air leak he has had for weeks. He started sating 100% so they started weening the O's He was at 64% and they weened to 50% and stopped. He was still sating in the mid 90's at 50%. He is still on steroids. Please continue to pray God's will for Logan. This little boy is so strong. God must have some amazing plans for him. All 3 boys are doing so well. They are so alert n ow. Logan turns to the sound of voices, he focuses on his toys and faces. He holds his pacifier in his mouth and reaches for his mobile. I hope that now that his oxygen needs are lower now we can start bottle feeding this week or next and that he can get his MRI done. Jacob muscles seem a little stiff for his age. He is very alert. Tries to eat you all the time and suck on your nose. He eats well. Pushes himself up and hold his head very well. Jacob startles easily and stares at you while you talk to him. Andrew has started focusing a little better. He has started to follow him mobile and look at me more while he eats. He likes to stare into lights and fans lol. He does not respond so much to sound and noise. He does not startle a lot. He startles more from sudden touch than sound.

Looks like our house guest are not staying as long as they were going to. They have decided to make another life change and move closer to her parent's house in north Florida. :-(.

Thursday, November 26, 2009

My baby is a bacteria breeding machine!

I deleted my last post it was a wee bit to psycho. Quick recap from that update was that Jacob was having an 8 day crying spree that has ended for the most part. Andrew and Jacob are still passing some kinda of stomach virus back and forth and Logan was doing his usual up and down on his oxgen. He was coming off steroids and weening his sedation meds. Andrew and Jacob had also both seen a cardiologist and Jacob heart is no longer enlarged and is totally normal now. Andrew still has a very small PDA that will be followed up in 6 months. Both the boys eyes are mature and normal now and both have follow-ups in May '10.

Now to the present. Sunday 11-22-09 Logan crashed again respiratory wise. He was lethargic and unresponsive. He was on 100% oxygen and sating around 74 for hours. Some genius finally decided to get a blood gas on him. His Co2 was 180! Normal range is 35-45 with normal being 40. Logan's normal ranges from the 50's to the 70's. If you or me had a co2 for 180 we would probably be dead. With some ventilator setting changes and restarting sol-u-medrol his co2 corrected itself and wet to 63. (I think) Though, after a day or 2 he did NOT rebound on his oxygen like he did last time on the steroids. I think it was Monday when I was told he was growing bacteria in his lung secretions and he had pneumonia. He was started on antibiotics. He sat around 80% for a few days. Last night I was up their when he suddenly crashed again...wide awake this time. He got very fussy and upset was on 100% oxygen again and sats were around 85%. I cried and I prayed. I prayed so hard with tears all over his bed at this point I could just feel the holy spirit in the room with me to comfort me. Logan was asleep now. I said a prayer that I could not repeat if I wanted to. I laid hands over him and truly really prayed hard for him. Harder than I have ever prayed in my life for anything. I looked up at the monitor and he started high sating. Then more tears came just to rejoice the reassurance God gave.

When I called this morning I was told the cultures (not sure if it was from the 1st one taken or a new one) grew a 3rd bacteria in his lungs that requires isolation. This one is a little more resistant to anti-biotics. All of these bacterias are nosocomial and related to him being on a ventilator. The 2 he was diagnosed with 1st were Serratia marcescens qnd Staphylococcus aureus commonly know as Serrtia and Staph. The new one found today is Stenotrophomonas maltophilia aka Steno. He has been weened back down to 82% and is holding okay now. He is very alert and LOVES his mobile and his music. He has a small raddle he likes to touch. He reaches for his toys. Focuses on you and his mobile and turns to the sound of voices. He is the sweetest baby.

Jacob and Andrew are double trouble at home. They take turns hitting each other and crying. They are eating well. They are taking turns vomiting. Not just spitting up but lets see how far I can spew my milk across the room vomit. They have pooped more in the last 2 weeks than they have in the last 4 months. Luckily I have lots of diapers thanks to many donations. Thank you very much. I want to thank Jennifer Brant for all her efforts she does not just more me but everyone she meets to do good. She has started a raffle for a Wii that ends on December 6th. She has been selling tickets for awhile now. I know she has not near reached her goal, but what she has done to donate to the "Gas fund" as I call it and to everyone else that has bought tickets. I just want to let everyone know I am grateful and I will not spend any money donated to me irresponsibly and it will go for what it was meant for. I pay $75 to fill my van every 3 days and $55 for the car every 3 days as well. Sometimes more some times less. it adds up the cost has made things hard and required the use of my EVIL credit cards several times, but my family will get through this. I will not let money stand in my way to see my son or provide for my family. My daughter does deserve some time with just her mom and dad. We took her out by herself without the babies to down town Disney the other day because it was free. We planned on window shopping and riding the boats around the the different resorts we though she would have enjoyed it. Due to bad weather they closed the boats so we went into rain forest cafe to show her the fish and animals. Then she started I want "sumten" to eat mommy and even signed it in sign language. So we sat down with her got the cheapest items on the menu and split them and shared a drink. I guess some people who "donated" to me may have found this irresponsible for eating at an expensive restaurant, but we did not spend a ton of money. I am not living off donations. My husband and I both receive paychecks and I have EVIL credit cards. I just want to make it clear that any money that has been donated to me is being used for its purpose. Not being my main funds for gas either. It is sitting in a 2nd savings account and will only be used when their is no money left in my checking to buy gas or things the babies need.

Thank You everyone for all the support you have given my family. Please keep the prayers coming for baby Logan.

Tuesday, November 10, 2009

Trach success!

Logan post op after trach 11-10-09
Little Logan fresh out of the OR

Logan headed to OR he is trying to figure out what was going on.


Logan record low oxygen level on the NO lol



Poor Logan 11-8-09 after coming off the paralytic




Little Logan has had a very rough week. He is still responding to steroids and day before his surgery 11-9-09 his oxygen needs were as low as 39%! He was very puffy and swollen up until last night, was not tolerating feeds and his urine output was low. His blood pressure continues to be very high. His methadone was restarted then stopped again today. He is still on a versed drip, he takes blood pressure meds, and is on fentenyl for pain. He still is not getting fed so he has an IV. He went to surgery at 9am this morning with 42% oxygen and the nitrous running. Jack and I grabbed some breakfast and waited in the waiting area for about 20 minutes after breakfast and it was over that quick. He was wheeled back into his room at 10am. The ENT doc said he did great had absolutely no problems maintaining his sats at all. His airway is in wonderful shape. No damage at all. Amazing for all the times he has been intubated. The trach was placed not due to a damaged airway, but because of the poor quality that his lungs are and because he requires alot ventilator support. They did a chest xray after he came back to the room just to check trach placement. His lungs looked the best I have ever seen them. His lungs were clear enough that you could see the outline of his heart. Right now his Evelyn is taking care of him. He will be sedated for 3 days to give the ostomy time to heal. It is well secured around his neck and sutured into place. He is on 55% oxygen and maintaining high 90's sats. Andrew and Jacob are doing great. I missed their earlysteps appointment today. Jacob is extremely fussy HE IS DRIVING ME NUTS! Ava is acting out a lot she has been pretty bad. In the last 3 days she has dumped 2 entire cans of baby formula and some rice cereal. Jen, Dahlton, and Matt have been here since Sunday night. Things are very slowly getting into a normal swing. Thank You everyone who continues to pray for my family.

Sunday, November 8, 2009

Not given up hope on the little guy.

I've had a very dark depressed couple days since my last post. Even let my fears get the best of me and played what Logan's funeral would be like over and over in my head. Within a few hours after my last post. Logan was at 100% oxygen and desating and riding in the 80's and has stayed that way until about 4 hours ago. The plan on Friday was to put him on a medication to paralyze him and a medication to sedate him so he could rest and let the vent do all the work. He is definitely not out off the woods yet. Right now he has a peep of 10 and a rate of 48. His Co2 is much better in the 50's He has had 3 does of Sol-u-medrol and his Pavalaun and Methadone have been stopped. The Pavalaun which I am sure I am spelling wrong is the paralytic. His body did not tolerate this well he became very swollen and he was shutting down. His kidneys were not working well, and he was not digesting food. He is recovering from being on this med now and sating in the 90's for my favorite nurse ever Evelyn. He loves her. All day long he was in the low 80's for Tracey but as soon as his Evelyn came in he started high sating for her. He is still on the Nitrous they tried to wean this today and he did not tolerate this either he actually had to go up from 10 to 20. So he is on nitrous at 20 and the actual vent setting for his oxygen is at 95% which mixed with the nitrous is 84% With lots and lots of prayers hopefully we can continue to see improvement get the nitrous weaned and get the oxygen under 60% so he can get his trach. I hope the steroids do the trick! Also tossing the idea of seeing if I can have him transferred to pedi ICU at Arnold Palmer. Some of the staff tells me they have different equipment and ways of doing things for babies past full term. Then I would have to learn nurses all over again. :-( I would esp miss Evelyn. I'm trying to stay strong for Logan. He is still fighting so I need to continue to fight with him. He is the strongest bravest person I know.

Wednesday, November 4, 2009

Logan 11-3-09
Logan 11-3-09

Jacob 11-4-09


Andrew 11-4-09



Logan was doing a little better last night the No2 had allowed him to be weaned to 71% on oxygen. His Co2 last night was 64. This morning when I called they had went up on his oxygen to 73% and his Co2 was 72. I got a phone call this morning from the doctor saying that she consulted the pediatric ICU docs to see if they had anymore in site on what to do for him since he at 43 weeks gestation now. The plan for now is to keep him on the No2 (nitrous oxide) until Friday they also have placed him back on Lasix and he is getting a blood transfusion today. I got a phone call about 30 minutes ago from Dr. Brown again saying that he had to be resuscitated. I guess his ET tube pulled out enough to gage him and caused him to vagual and his heart rate dropped below 40. This caused him to be bagged to receive oxygen and have chest compressions. The entire ordeal was about 2 minutes his heart rate came back after about a minutes but it took 2 minutes or so for his O2 levels to come back up. He got a new ET tube and is stable again. He is at 78% on his O2 now. The goal is to try and get his oxygen closer to 50% by next week so he can have the trach placed. The trach is going to be the best thing for him it will help his Co2 levels and make him more comfortable. Andrew and Jacob continue to improve and grow every day. Jacob has awesome head control and focuses more than Andrew. Over all the are doing great.

Tuesday, November 3, 2009

Trying to stay focused

As most of you know Logan was not able to have his trach done yesterday. God made it very apparent that it was not the right decision at the moment. 1st the RT noticed over the last couple days they have not had the oxygen settings right on the monitor and they think the nurses were "tweaking" the vent and settings to make is show on paper that he was ready to go. They were allowing him to range from 83-98% on his oxygen and he was sating in the low to mid 80's most of the time. SO BASICALLY THEY WERE DEPRIVING HIM OF THE OXYGEN HE REQUIRES FOR HIS GESTATIONAL AGE. The range should have been between 90-98% initially he had to be turned up to 85% to maintain a sat of 90% Over an hour or so he required 100% oxygen and still continues to consistently drop below 90%. Needless to say he could not go to surgery. He has to be below 60% and stable before he can have the trach placed. The ENT doctor told me that if he would have went to surgery yesterday it would have been "His last day on earth." So Dr. Brown once again never calls me after I left and never did anything to address his high oxygen need. Dr. Von who was on call last night went to see him and noticed how lethargic and grey he was. She order a battery of test like they did over 3 weeks ago when he was reintubated in the 1st place. So far they are all negative. No infection No explanation except that he just has severe chronic lung disease. They did do an ABG last night to check his blood gasses and discovered his Co2 was 99% they were baking my baby's brain! So they changed a bunch of vent settings around to try and blow off the Co2 build up and ultimately got him down to 72% (normal is 30-40) He is currently at 89% O2 and they have run out of options he does not respond to steroids or diuretics. They are currently on the last resort they are adding nitrus oxide to his oxygen to try and help with the gas exchange in his lungs. Dr. Brown said she does not know what to do next that she has consulted everyone and asked advice of other doctors and if this does not work she does not know what to do. Please pray for Logan and the doctors that God can give them guidance about what to do for his pulmonary status.

Sunday, November 1, 2009

Better things are yet to come.....

PRAISE GOD! My merciful savior is awesome and always provides! Thank you God for all the guidance and blessing you have given my family. We bought our van on Friday and it just fell into our hands like it was waiting just for us to find it. It is reliable and extremely clean. It is a 2003 Ford Windstar. It is perfect and very affordable. The payment are only $137 a month the babies SSI is $138 a month. Just a wonderful example of how God always provides.

Logan goes to surgery tomorrow. I have had a lot of emotions regarding if we are doing the right thing or not. I have prayed and thought a lot about what to do. I decided that 3 1/2 months of on and off intubeation is enough and the trach is a logical step FORWARD not back. I believe this is the best thing for him, for his development, his healing, and for his comfort. He will be able to seamlessly go from ventilator to breathing on his own, he will no longer have tubes down his throat, no longer have straps around his head, prongs up his nose, or excessive tape on his face. He will be able to eat from a bottle, and his oxygen can be weaned faster.

Logan will come out of this a stronger person. One day when he stands before others he will have a wonderful testimony to tell for himself of God's grace and mercy and his ability to heal. Our entire family is a testimony in its self of God's almighty power and mercy. There have been so many blessings to my family I can't even begin to thank everyone who has been touched enough to help our family through a tough time.

God has provided! God has uplifted us! God has healed and continues to heal my boys!

Over the years I have questioned "When is it my turn? Why do I always do for other and no one ever does for me? How can other people have large amounts of money handed to them while I struggle? There is not special deeds, no amount of money to give, and no magic words to be said. It is simple Do unto others as you would wants others to do unto you. These are my words to live by. God rewards every person differently on earth though are ultimate reward awaits in heaven. I once asked God why me? What the heck am I doing with 3 babies! I realized very early in my pregnancy something I never did before. I should never question God's plan just go with the flow and practice PATIENCE. People tell me all the time, "I don't know how you do it. I would be a mess if I was you. How do you handle all the bad things going on?" It is simple faith, prayer, and patience. Though I do falter and give into the enemy more often than I should. I remind myself that everything I truly believe happens for a reason even if I don't understand it. I have had moments of rage I ask why my children God?! How come other mother's have multiples and come out "normal" why do my children have to struggle and fight? I am excited for my boys I will not grieve upon their difficulties anymore or compare them developmentally to other babies. God has a great purpose for them and I can't wait to see what it is!

Thursday, October 29, 2009

Hopefully Monday we will know something!

I wonder how I go about changing MD for Logan....not that I have had a problem with his care so much, but she is horrible about follow-ups and calling concerned parents back. I think she needs to sit back and think about if it was her child for once! She called me yesterday (I know something is wrong because she only calls is something bad happens) tells me I think his left eye has an immature retina and his right has developed stage 1 ROP. I knew that was coming eventually though he has been on such high oxygen levels for so long. He is ending his 4th round of steroids decadron today (this course was for 7 days instead of 3) and it has not given the same dramatic effect the last 2 did. He has been holding strong at 66% down from 80% when it started though the goal was to get him under 50% to have a bronchoscopy. At the moment the RT has weened him to 60% I hope he does not have to go up again. They tried to ween him to 61% 2 days ago and he dropped to 28%! So Dr Brown told me at the beginning for the week when I seen her in person that the bronchoscopy would be done at the end of the week even if they could not ween the O2 so I spoke with her yesterday morning when she called to tell me about his eyes and I was awoke from my sleep and didn't really remember to ask her about the bronc and she had told me they went up on his methadone the day before (an on call doc did this not her) So once I woke up realized that I had questions I called the nurse back and 1st reamed her for not telling me they went up on methadone and explained to her why I did not want him on it. the Dr. Brown said she would call back.....well no call yesterday, no call today and now she is off for 2 days it is really aggravating. So Adellis who is one of his day primary nurses made some calls and did find out he is having the bronchoscopy done on Monday... now on the bronchoscopy



I need to do a lot of praying about this...if they do the procedure there is 1st always the risk of death and him not coming out of anaesthesia there is risk of more damage being caused to an already poor airway and 3rd most the reason for the procedure I need to decide if now it the time to have him trached so he can come home faster. He would be trached on Monday during the bronch if that is what they think is needed. Please pray that whatever the decision may be is what is best for him to keep him alive and give him the best chance of recovery. Please continue to pray that God deliver his brain for devastating damage and that he may overcome all obstacles placed in front of him. I have faith and I know in my heart all 3 of my boys will grow up to live full happy lives whatever they may be.

Logan has been in NICU for 108 days if my math is correct.



Andrew has been eating like a champ but today he has decided he wanted to start vomiting on me. I have had the joy of being projectile vomited on 2x today. I think he is eating to fast and not burping enough. That kid is at times eating more than 6oz.



Jacob aka Mr. Whinny Pants has been pretty mellow during the day so he can make an uproar at night. He is eating around 50z not as fast at Andrew and still breaths very heavy when he eats.



Jack is counting down his last night for 2 months on night shift. Now I get to hear for the next 2 months about how he is going to dread going back to nights BLAH!



Ava is defiantly opening up more around other people and has one hell of an attitude to go with it. She still loves her brother and wants to hold and feed them. She asks about Logan all the time but both babies that are home are Jacob. She has imaginary birds and frogs she plays with and gives you to put in your pocket. Today she has imaginary carrots. She is addicted to Phineas and Ferb on Disney Channel. I have about 8 shows recorded she watches over and over and over and over again. Keeps her out of my hair. She never watched TV prior to this show.



One day I am going to get a minute to upload more pictures but now it is time to pump the boobies and make the baby laying on the floor stop crying.

Tuesday, October 20, 2009

Maybe the forth times the charm...











So a lot has happened since my last post. Logan had to be re intubated for the 4th time on Saturday morning. He was requiring 100% oxygen on vapotherm and was still desating. They intubated and suctioned a lot of fluid from him lungs. His chest x-ray looked really bad. Over the weekend they did an echo cardiogram and also ultrasounded his aorta and kidneys. Everything came back normal. There is no sign of any clots, pulmonary hypertension or any other thing to explain the fluid build up in his lungs and his sudden deterioration. He was consulted with the pulmonologist and he didn't really offer any additional insite to improve his lungs. So Dr. Brown ordered a consult with ENT. She is thinking maybe he is refluxing and aspirating or maybe his feed tube got pulled and fed his lungs. Some time this week they are probably going to do a broncostophy to see how his trachea and lung look. She said they will take a sample during the procedure and test it for an enzyme that can show if he as been aspirating. If he has been aspirating they may give him a G-tube. If this anatomy is abnormal in his throat we may have to consider a tracheotomy. He is still hanging in there. He is at 80% oxygen still jumping up and down on his sats and still being sedated with Versaid to prevent him pulling his tubes. They also have started a continuous feed where he gets 19cc an hour from 8pm until 6am. This is to help him rest the doctor says.
Jacob had his eye exam done today. He has another follow-up appointment in 4 weeks. He retina is not quite mature yet. He is being very colicky and is screaming as I type.

Andrew is wonderful he is the most calm relaxed baby ever! He only cries when he needs to be fed and the rest of the time he sleeps and just looks around QUIETLY! Jacob could take some lessons.

Ava loves her brothers. She is a very good big sister and helps me change their diapers and feed them.


I miss sleep. Jack misses sleep. One day we will sleep again right???

Friday, October 16, 2009

looking back!

1st off I'm a celebrity! lol I seen the link to my blog posted on another person's blog from another state because my babies are fascinating because they are still SURVIVORS and apparently natural triplets with ttts in the identical twins is not very common (it was a TTTS support group). Thinking about my babies rough start and even through all the animosity I have towards the staff and doctors at WPH. I have to sit back and thank God and all those stupid doctors and nurses that piss me off on a daily bases for saving my babies lives no matter what the outcome ends up being for all of them. I got Andrew and Jacob's medical records today and it was the first time I got read about my sons' births. I learned that Andrew actually cried when he was born and Jacob did not. I also got the MRI reports with pictures. It still disturbs me to look at Jacob's MRI. Though he has a tiny little head and seems okay. I know God us this far that I have faith they will all have positive outcomes.

So after my bitch fest with the unit manager yesterday actually got a call from the doctor that seen my son today (not Dr. Brown) after arguing my side of the story I got him to discontinue the Tylenol with codeine so the freaking nurses would stop giving it to him just to sedate him so they don't have to deal with him. I told him "why the hell are they giving him a narcotic for "pain" when he is not intubeated and his fracture is healed and he is not on cpap...while at the same time you are giving him methadone to ween off a narcotic it makes no sense!' The MD agreed and d/ced it. He is on Lasix for several ounces of weight gain over the past 2 days way more than normal. He was also at 95% oxygen when I left on 8 liters only sating at 91-94% My next argument is going to be for them to see WHY he retains fluid all the time! I just spoke with the nurse and they have turn his oxygen to 78%.

Oh the nurse calls me today and tells me that Logan only had 1 2oz bottle of breast milk left. So I had to go up there and deliver milk to the NICU it would have been nice if they could have given me a little more warning. That place has NO consistency at all. Thank God Jack was home so I could go up there it would have really sucked if I had to take all 3 kids up there. When I walked into his room he had dried blood all around his nose in the tape and under the canula and crusty all over his face. He also had shit in his diaper. his butt is bloody raw. I should have taken a picture.
Ugh I made an attempt to copy the MRI pictures but they wont copy.

No tranfer in sight :-(

So Jack talked to Dr. Brown this morning. She told him that Logan could not be transferred because LRMC does not have Vapotherms and he would have to be under 4 liters of O2. I tried to call back so I could ask her questions and of course I got the she will call you back thing and she never called back before she left. Barbra was his nurse today. I hate it when he gets nurses he has never had or hasn't had for weeks. It is amazing when his regular nurse works for 4 days he does great and they ween his oxygen and he does not require pain medication. Why they hell he still has pain medication ordered I do not know. I wish they would take it away so the freaking nurses would stop giving him shit he does not need. They stopped weening the methadone he should not be on anyway for now. The nurse today turned his oxygen up from 60 to 75 and gave him Tylenol with codeine which he has not had in 3 days. He is at 68% now on 8 liters So I called the manager Ann Diez today and bitched her out and got the I will look into why he does not have primary nurses and why to doctors do not call you back. Hopefully if I get some form of sleep tonight and after Jack has had a few hours I will be able to go up there in the AM. Anyone that wants to watch my kids while I see Logan on the days Jack works and the days he does not work so he can go to would be greatly appreciated (I love you Jill!) since there is no end in sight for him coming home or being transferred. Just tell me you want to come over I suck at asking people I feel bad. Why is my 2 year old up at 12:44am showing me her butt! I fed the babies 4oz of breast milk and 2oz each of Enfamil maybe they will sleep a bit longer and be less gassy! They drove me crazy last night they were up from 330 to 730am! Anyone wanna come over and spend the night!?!?!!?! I should go to bed now and take advantage of them being asleep. I am so proud of myself I finally went through my mountain of paper that was starting to fall over and shredded 2 full trash bags full of stuff.

Wednesday, October 14, 2009

Logan is off c-pap!


Logan was taken off cpap Sunday 10-11-09 he had a rocky start and thought he may have to be reintubated, but he has pulled through. Since Sunday they have been able to ween his oxygen from 80% to 62%. His ABGs have been stable and he seems more comfortable. Hopefully by the end of the week I will find out if he can be transfered to Lakeland! BTW his leg is healing and the swelling is going down more every day.
The others 2 are doing wonderful. They are driving us crazy and keeping us awake all night. We are loving every bit of it! Ava loves her brothers.

Friday, October 9, 2009

METHADONE!!!!!




Boys have been very fussy!. Apparently I have been a very bad breastfeeding mommy and have been eating something horrible that their little bellys do not like. The past 2-3 days have not been wonderful. Andrew and Jacob have been very cranky and gassy. Nothing sooths them except being held none stop! So apparently Logan is the same way. Crying and being very cranky and will not settle. So even though he is farting like a truck driver who just at gallon of chili, they have come to the conclusion he is having withdrawl from the morphine he was on for 3 weeks. He has been off for 3 days, but still gets Tylenol with codeine. One of the doctors on call started him on methadone every 12 hours. I have requested they stop I do NOT want him taking that! He is better off being slowly weened off morphine! Apparently what I say does not hold much weight. His leg is still contracted and he does not move it. I asked Dr. Brown to call me and of course she did not. He is doing well on cpap. He is nearing the end of his steroids. He is on a peep of 8 and oxygen of 49% They are going to put him on a vaperderm high flow nasal canula when one comes available. My mom officially is gone they left around 7am after a nice breakfast with my sisters. I want to thank everyone for the continued support everyone has been giving us. I especially want to thank LPOM and Journey Church for the diapers and meals they have been providing. Thank you Jill for taking care of my kids so I can see Logan and for bathing them so they do not stink :-) and Elisa for all of her charity efforts. http://www.freecharitycars.org/ranze11617/

Tuesday, October 6, 2009

Cpap I hope it works this time!

Ava the apple
Andrew

Jacob


Mommy and Logan



Ava the baby




Going out





Hanging out!






Tummy Time







Just got home from WPH








All 3 boys together for the 1st time!




Just a quick update about Logan. He self extubeated last night on shift change. They decided to put him on cpap. He is currently at 85% oxygen with a peep of 10. He is doing okay so far though the pressure and oxygen are very high. Other 2 are doing good they are driving me crazy! Lgoan is on day 2 of 6 on steroids.




Monday, October 5, 2009

I swear my blogs are not posting!

I see the last post was ob the 25th of September...I have written one since then that apparently did not post. So to sum it up. Jacob has had circumcision issues! Took them for their 1st visit to the pediatrician on the 30th. It went very well. I learned that I was suppose to push back on the skin around the head of the penis. NO ONE TOLD ME THIS! So we started doing this and the next day (evening time) Jacob's penis was very swollen just below the head. It looked like a huge water blister. I took him to the doctor the next day. I was told to soak him in warm water and put an ointment on it. After a day or so the welling did start to go down. Then this past Saturday night I noticed he has a piece of skin now growing from his urethra downward pushing the head of his penis down. Then Jack pushed down on the skin again this morning and I guess released an adhesion and it started bleeding. If his penis is still not look right by Wednesday I have to take him back to the doctor. Andrew penis look great BTW lol. Overall the boys are doing very well they chock less when they eat and don't turn blue everyday. They are both more alert and stay awake longer. I took them to WIC today. I am breastfeeding them, but have to add 1/2 teaspoon of Enfamil Enfacare to the breast milk for extra calories. So, for a tiny 12oz can it is over $14 at Walmart. I will prob only need 1 can a month maybe a little more when Logan makes it home, but I don't know how long I will need to do this. They gave me 10 cans! It cost $144.30 for 10 12oz cans of this formula. Thank You government for paying this for me...about time I got something back for everything I have paid in. :-D The extra formula is being donated to those who can not get WIC :-) Their weight today per the WIC people Jacob 7lbs 1oz Andrew 6lbs 3oz. I think their scales are a little off or they both lost weight. They are finally starting to poop! You wouldn't think I would be so happy to report this, but I am thrilled!

Now for Logan he has had a very rough month. He had his splint and harness removed on Saturday. He still does not move his left leg hardly at all. It is very swollen. He is on 70% oxygen right now with a rate of 15 and a peep of 8. he started Decadron today 2x a day for 6 day. The plan is to attempt to ween oxygen, switch the vent to auto mode tomorrow, and extubate on Wednesday. I found out last night that if he continues to have to be reintubated all the time eventually they will give him a trach. I hope and pray this is the last time he is on the vent and it is only up hill from here.

I have to go back to work this weekend and I found out today my mother's manager did not approve her personal leave of absence. She has been hear nearly 4 months and her FMLA is up. I have really started to rely on her and have become very used to her being her. I cry at the thought of her leaving. Jack is going back to work too. I don't know what I am going to do. I was really rely on my mom to help me. She has been such a huge help. Ava is going to be heart broken when she leaves. I would be selfish and insist she quit her job if she did not need the health insurance. It is going to be a hard transition but I guess she gotta go. I am going to miss her very much. I want to keep her. She is leaving on Friday. She has to go back to work on Saturday. I love you mommy!

I am so depressed... I have never felt this low in my life!

Sunday, October 4, 2009

Getting tired

Boys have been home for I think 9 days now. They are doing good and continuing to gain weight. Having some penis issues with Jacob. 1st it got all swollen now the bottom half has some kind of weird skin adhering thing at the bottom. Gotta call the doctor on Monday. Jacob is 7lbs 2oz and Andrew is 6lbs 14oz. They have been very fussy over the last couple days...have no clue what the heck is wrong with them. Andrew still hardly poops but doctor says he is fine.

Logan...hmm...I just don't know anymore. The good news is that he had the splint and pelvic harness taken off his leg today. His knee is still swollen and he does not move that leg, but they assure me it healed enough to come off and he is fine. On the down side he is still on the ventilator. They have weened his rate to 15, but his oxygen is at 69% they tired to put him on auto mode which is what they do before they take him off of vent and he did not tolerate it well hence the rise in oxygen requirement. He is also getting a lot more secretions in his lungs. I hope now that he can be moved again they will move him more so the fluid does not settle to much in his lungs. I got told him last night. It was nice the 2nd time I have held him in 6 weeks. The doctor is considering giving him another round of steroids to get him off the vent. Haven't heard the final word. He weighs 5lbs 5.75oz
Trying to stay strong and not break down. I think I have decided I quit on the bills! I am going to file bankruptcy. Chase raised my interest rate to over 25% and I have NEVER been late or missed a payment on any credit card (except for 1 day late on target a few months ago). I decided I have tried my best but no one is willing to help unless you are behind on payments. F them all I quit!

Once I feel like being productive again I will post some new pictures.

Friday, September 25, 2009

Andrew and Jacob are home MRI results

Andrew and Jacob left Winnie Palmer hospital on September 23, 2009 after 67 days in the NICU Logan still hanging in there still on vent slowly weening settings he is 4lbs 8oz on the 23rd. Today he is at a rate 33 and at 60% on oxygen.
Andrew and Jacob came home around 8:30pm and are doing okay. Andrew was 6lbs and Jacob 6lbs 5oz when they left. They are still on fortifier to add extra calories to their breast milk. They get daily multivitamins and Jacob takes 12.5mcg of syntroid for hypothyroidism. They had MRI of their brains prior to discharge with some results that were not what any parent would hope for. I can't quit comprehen what the results says, but I do have a strong faith in God and know that God has meant for them to be exactly the way they are and that God has great plans for them. All can do is pray that with time they will be able to function as adults and they will be happy children. I was told they would defiantly have some developmental delay Jacob more significantly than Andrew. Jacob's brain injuries are more than likely caused from Logan and Jacob's TTTS and that there is a high chance that when it is time for Logan's MRI his results are expected to be the same or worse than Jacob's due to his long term chronic needs for oxygen. I know that God has saved these children from death for a reason and I will continue to wait and see what God's will is and do all I can to make their lives the best they can be.

This is Andrew's MRI report: 1. Subtle signal abnormality in the periventricular regions in the bilateral front lobes could represent early white matter changes. 2. Mild colpocephaly. Mild increased extra-axial fluid.

Jacob's MRI: Interval development of diffuse and extensive cystic encephalomalcia occupying a large portion of the bilateral parietal lobes with extension along the periventricular regions bilaterally and extending into the right frontal lobe.

Logan's fracture is still not looking very well. Shows "slight increase in angulation."

Jacob has only had 1 episode since he has been home where he chocked and turned blue while he ate. A little stimulation and he was fine.

Tuesday, September 22, 2009

Homeward bound foe 2

Andrew and Jacob are doing great! 2 nights ago Jacob required a little oxygen when he ate he is better now. Both boys eat whenever they want now and are between 60-96oz. They have to feed ad lib for 48hrs with no bradys so far so good. They are thinks Wed or Thurs for discharge.

Logan has required a bump up on his oxygen. Was at 55% at 3am. Still vented. he is tube fed 39cc every 3 hours. He gets morphine every 6 hours. He required his 3rd blood transfusion since birth yesterday. Still in pelvic harness. Did not look good or very happy last night. He had a dose of Lasix to try to bring down his swelling.

Friday, September 18, 2009

Pelvic Harness

Logan was changed from the splint to a pelvic harness today. He seems to tolerate it okay. He also weened on his oxygen from 57% to 50% he goes up and down on his oxygen sats a lot still. Tolerates his feeds okay still has some residual after he takes pain medication.

Andrew and Jacob are getting their 2 month old vaccinations. Jacob is doing very well on his feeds and still acts hungry. Finishes his bottles in 10-20 minutes. If he nipple feeds the rest of tonight and all day tomorrow on Saturday he can eat whenever he wants and if he continues to do well he can come home. He has not had any bradycaridas in a few days.

Andrew is not doing as well on his feeds. He gets tired easily and struggles to finish his 50cc in 30 minutes. If he does 2 or 3 feeds in a row then he starts to brady and chock on his feeds. They say that the vaccines can makes them do this for a few days.

Logan apparently has osteopenia (prob did not spell this right) I will try to explain the time line of what happened with his leg next time I get on here when I have time.

Wednesday, September 16, 2009

So this is what Logan's leg looks like in the splint....the bones don't look right to me, but they keep telling me it should heal fine even though the bones are pointing 2 different ways...I want a 2nd option.
Logan's toys lol He would not let you have them back. He was actually awake and kept closing his eyes from the light.

Mommy turn the lights back off!


Making Andrew and Jacob love each other.
I'm so disgusted with Winnie Palmer Hospital I can't even write about it!. Just want to report Logan is doing well and seems much more relaxed on the vent he is not having to work so hard and is getting the rest he needs. Oxygen is at 57% peep of 8 resps at 45. Andrew and Jacob finished their bottles tonight and Jacob breastfed his entire feeding except 5cc at 530. Neither baby had any bradys today that I was told of not even during their feedings.



Tuesday, September 15, 2009

Update

Not to much has changes since my last post just Logan is back on the ventilator again as of about 2 am this morning. So far I have followed chain of command to get answers about my son's care and haven't got any real answers yet. I spoke with the nurse manager of the department this morning and just got off the phone with the social worker. Can't really change what has happened, but after 8 weeks they are suddenly developing a care plan for him and are suppose to have certain nurses who care for him daily so we do not get random nurses all the time.

"Displaced fracture of the left femur"

Logan's xray enhanced by me to show the break because it is a really crappy pic I took on my cam phone

Logan


Jacob




Andrew

Okay I have written all this once and it freaking deleted some how grr. I got a phone call from Dr. Brown this morning saying some how Logan acquired a displaced fracture of his left femur in the past 12-24hrs and they can not pin point exactly when or what happened, that sometimes babies that spend time on IV nutrition (which he was not on long) can develop weak bones btw she also told me all his labs for minerals are normal and he showed no signs of having any bone issues prior to this. Night shift blames it on day and days blames it on nights. All I know is that he was moving his legs just fine when I left at 530pm that night and he was content. The respiratory therapist told me tonight that his foot was swollen at 7pm last night when she came in. The nurse noted his thigh was swollen when she gave him a bath. What makes me really angry is that if you notice swelling in a child's leg just a we bit bigger than my thumb that btw had an obvious deformity if you felt it.. WHY THE FUCK WAS NOTHING POINTED OUT TO THE DOCTOR until 10am the next morning. So my child who has suffered since the day he was born sat in pain the a broken femur for possibly more than 15hrs???!!! It make me want to punch a bitch in the face! Ughh I am trying to get him transferred to LRMC if they will take him.
Oh the upside MD thinks Jacob an Andrew could be coming home in the next 10-14day if all goes well
Back to Logan they had the orthopedic doc come in and splint and set his bone back..but as for how long it will take to heal or if it may need surgery I never thought to ask because I was to busy being angry.


Saturday, September 12, 2009



I'm sick and can not go see my babies :-( They tried to ween Logan today he did not like it back up on O2 to 65%! Andrew and Jacob continue to finish a bottle then only 1/2 a bottle next feeding. Still having so low heart rates a few times a day but are making progress. Blah I feel like crap today..oh and yesterday I manage to paint 1 wall in the boys room. lol

Friday, September 11, 2009

SICK!

I'm getting sick! Blah. The big boys are up to feeds at nurses discretion. Jacob is 5lbs 7oz Andrew 5lbs 4oz. They are RSV free. They took off their oxygen monitors yesterday...I don't like this. They still have heart monitors on and Jacob had 1 bradycardia episode this morning and Andrew had 1 last night when I fed him. I think they are pushing them a little to fast out the door. I signed all the consents for there shots yesterday and for their circumcisions. I was told to bring in there car seats so they can make sure they can handle sitting in car seats.
Logan was back up to 60% on his oxygen on cpap last night. It is so depressing as soon as I think he is doing great for example he go to 48% on oxygen and in 12 hours he was back at 60%. When I called earlier he was at 54% I'm going to have grey hair by the time he comes home. He is 3lbs 8oz. He is still on RSV isolation. He had a negative test 5 days ago had a positive test 3 days ago and a negative test yesterday. He has to have 2 negative test in a row to be cleared.

Wednesday, September 9, 2009

Keeping my fingers crossed & Happy Birthday Gorka Triplets!

I feel like I can almost stop holding my breath now. Though I know everything is in God's hands I still have the feeling I can't relax and let my guard down yet (not that it would change anything anyways)
Andrew: Doing great continues to bottle feed most of his feedings still not finishing all of his bottles though. 5lbs 2oz. Continues to have some very infrequent desats.

Jacob: FINALLY FINISHED AN ENTIRE FEEDING! Very sad I was not there for it. Earlier tonight at his 5:30 feeding the nurse apparently could not wait for me to come in and feed him and bottle fed him. I am very happy he finished his bottle. He still struggles with the suck, swollow, breath thing. He is 5lbs 6oz. He still sats in the low-mid 90's and struggles a little more with his breathing than Andrew. For the most part Andrew sats at 100%

Logan: When I left NICU tonight he was at 51% on oxygen with the pressure at 8 still. He was still high sating when I left I hope he can continue to ween on his oxygen. I got to hold him for a little bit tonight.

I'm very excited that my fellow triplet mom that lives near me deliver 3 healthy babies around 8:30-8:45 (I think) this morning at 31 weeks and 6 days. She had 2 girls and a boy. They are all very healthy the girls are breathing own their own on room air and their little boy was on just a nasal canula with minimal support. Not sure if I will get this right but the girls were 3lbs 6oz 3lbs 11oz and their boy 4lbs 6oz?? I think. Their names are Jasmine, Allison, and Tanner. Happy Birthday Gorka Triplets!

Tuesday, September 8, 2009

Ahhh! (This is how I feel!)

Logan was taken off the ventilator Saturday afternoon 9/5/09. Jack and I were actually in the room when they did this. It was one of the most stressful moments I have had in a while. They pull the tube and the sats went from 90's down to the 20's his heart rate dropped into 30's his chest caved in and he was purple and blue all over. I left the room as they started to ambubag him. I came back about 30 minutes later expecting him to be on vent on alot of O2 and found him on Cpap on around 60% oxygen. What a relief it was that he was BREATHING period! He ended up requiring more O2 and went up to 75% He has been on 70% for the last 2 days and just tonight as I was leaving they were weening him he was at 66% when I left at 11pm. He is 3lbs 6oz. Ithink. JACOB is still breathing on his own without oxygen he still has some desats with some retractions. He is still only getting 1 bottle feeding a day and he still desats and chocks during his feeding tonight I did get him to drink 24cc. he is 5lbs 4oz. ANDREW is doing awsome he sats in high 90's all the time but when he gets stressed he has short episodes of bradys and desats. He bottle feeds more than 50% of his feeds and ranges in the amount he takes from full feeds to 1/2 feeds. We did attempt breastfeeding for the last 2 night and they both did okay. Andrew latched on and went to sleep Jacob did very well but could not handle the flow of milk. It was to much for him. Andrew is 5lbs 1oz. My mom is thankfully still staying with me and Jack has started night shift. Ava is being super bad all the time and is repeating curse words and calling everyone ass holes on a daily bases (ducks, docks, Jack, me, my mom etc). Just lovely!

Thursday, September 3, 2009

UPDATES WITH PICS

LOGAN 9-2-09
9-2-09 LOGAN AND MOMMY
9-2-09 DADDY HOLDS JACOB AND ANDREW TOGETHER 1ST TIME


QUICK UPDATE. LOGAN DOWN TO 45% ON OXYGEN STILL ON VENT. ANDREW AND JACOB ARE BOTH OFF OXYGEN RIGHT NOW. ANDREW IS DOING WELL JACOB IS HANGING IN THERE. ANDREW FINISHED A BOTTLE FOR THE 2ND TIME AND IS EATING WELL. JACOB DOES NOT DO WELL AT ALL ONLY AT 5CC TODAY AND DESATED THE ENTIRE TIME. STILL AT RONALD MCDONALD HOUSE. HOPEFULLY THINGS WILL CONTINUE TO IMPROVE AND WE WILL BE HOME BY THE THE OF THE WEEKEND. THEY ARE ALL STILL ON ISOLATION FOR RSV.

Wednesday, September 2, 2009

Updates from a blackberry

A lot has happened since my last update. Saturday evening I believe it was the 28th he went off cpap and back on the ventlator. 2 hours after he was intubeated he went to the high frequency ventilator at 100% Also Sunday night Jacob and Andrew were also diagnosed with rsv. Logan stayed on high freq vent until Sunday evening finally his abg was good enough to go back on reg vent. Long story short today Wednesday9-2 he is still on vent weened at the moment to 53% and doing okay. He is still a little touchy and desats at any stimulation. Andrew is doing AWSOME! He is OFF oxygen all together and is getting bottle feeds at nurses discretion. Last night he finished an entire feeding for Jack with bottle. He is so close to going home. Andrew does not show any bad symptoms from RSV. Jacob is struggling a bit more with RSV he is at 1 liter and 24% oxygen. He is still having some desats more when he eats.He still struggles with his once a day bottle feed ranging from intakes as low as 4cc to 26cc but he only did the big feed once. He is retracting a bit when he breaths and still congested.They are all on isolation and we have to wear yellow gowns and gloves when we inter the room. We are staying at ronald mcdonald house until Logan is off vent or just a little more stable.

Friday, August 28, 2009

Ups and now DOWNS!

1st time I held Andrew and Jacob together Thank You Jill for the picture :-D









jacob 8-26-09




Andrew 8-26-09

Logan was doing well for a few days. After my last post the next day I believe he was placed on a nasal canula thing not like Jacob's and Andrews high flow, but I believe it was called a vaperderm. It allowed him not to have the mask on his face, but receive a higher flow of oxygen then the high flow gives. He maintained 6 liters at 50% oxygen until 2 days ago. He slowly went up into the 60's more when he ate than anything. Early this morning around 4am they put him back on cpap with a flow of 8 and at 84% oxygen and ran a bunch of test. Turns out the doctor called me around 11am and told me Logan has tested + for RSV. There has been quite the outbreak of RSV in the NICU. I was wondering why all the babies that were in his room were disappearing. I just assumed they had been moved because they were getting better. Well, I was wrong. I found all the babies he had been room with over the past months were all in Pod 1 on isolation with RSV! Apparently Logan was the last of the babies that were there to test posative. He is strong and was fighting the cpap the entire time I was up there. Sad his body is so strong even though his lungs are so weak. Please pray for him. I know in my heart he will make it out of the NICU okay.
On a lighter note. Jacob and Andrew have been weening down on there oxygen and have both made it to 1 liter on there canulas. They have both been practicing on bottle feeding. Jacob surprised everyone today when he suddenly learned to suck swallow breath. This was day 4 for his once a day bottle feed. The last 3 day the most he has taken was between 4cc and 7cc and he would desat the entire time. Today he took 26cc! with very few desats and brought himself back up on his own. Andrew took 13cc this was his 3rd feed. Yesterday the nurse tried and he did not eat any and on his 1st feed ever he took 16cc. I does not desat at all when he feeds. He just does not suck hard enough and tires himself out. They are so close to coming home! Just a few more hurtles and a little more growing and maturing. They will be 34 weeks tomorrow. Jacob and Andrew are still co-bedding and doing great. Oh and they had there eye exams yesterday and they all just show premature retinas and nothing more yea!

Saturday, August 22, 2009

BIG UPDATES!

Jacob
Andrew

Logan


Logan
I just spoke with Dr. Brown.

Jacob got moved to pod 3 2 days ago. I tried to bottle feed him 2 days ago he literally chocked down a total of 4cc. MD decided to discontinue the bottle feed for now and give him another week. Today she also decreased his oxygen flow from 2liters to 1.5 liters on room air. His TSH apparently has been high for the past 2 weeks (NEWS TO ME!) like 85 and 36. So she had him seen by an endocrinologist. He started him on syntroid for hypothyroidism. She thinks his hormone levels will correct himself over time. He is 4lbs 4oz still and doing well on feeds.

Andrew is doing very good he was been weened to 2liters on room. He is doing well on his feeds and is 3lbs 13oz MD said early next week he will be moved with Jacob in pod 3 if all goes well.

Logan was taken off the ventilator yesterday. He has been off for 24 hours now and is doing well. He started off on 70% oxygen is staying between 50-55% now with a peak of 8. She did start him on a 2nd round of steroids for some edema still hanging around. He has an inguinal hernia and his poor little scrotum is swollen and hard. MD said they would fix it before he goes home and that it is not causing any harm. She said they don't fix them until they are over 4lbs. His Hct is coming back up 28.8. Overall he has had many little miracles over the last week. Power of prayer really shows. Praise God! and I thank everyone who continues to pray for my childrens' health.