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.

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.

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.

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.

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.

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

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.

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!

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!

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.

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.