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!

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.

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.

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.

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 :-(

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.

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.

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.

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.

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.

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. :-)

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. :-(.