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


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.

Tuesday, October 6, 2009

Cpap I hope it works this time!

Ava the apple


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.