Sunday, January 31, 2010

A letter to the NICU nurses, doctors, friends and family

I had all these thoughts in my head and don't even know where to start now. Yes, my heart has been broken into a thousand pieces and it is simply God's grace that has kept me from crawling into a dark hole and crying myself to sleep. God only knows how much I love Logan. His picture pops up on my phone and his beautiful eyes are staring back at me. I know it has only been a little over 48 hours and I know it will probibly get harder before it gets easier. Right now I do have comfort and I guess the best peace you can have in this situation. Some may not see it, but I do break down every once in a while. As I have selfish thoughts of wanting Logan to stay here no matter what. I anguish in why God blessed me with spontanious triplets then decided to take one away, while other people were blessed with 3, 4, 5...8 healthy babies. I battle with the thoughts of when people come up to me and say twins? How old? Do I smile and say yes, or do I tell everyone about the beautful third baby that left this earth way before I wanted him to. Anyways back to the purpose of this blog

Dear Nursing staff and doctors,
Thank You for taking care of my son. I espicially want to thank Adelles, Evalynn, and Valerie for the special care and love you gave him. I don't mean to leave anyone out, I know lots of people loved and cared for him. You will always have a special place in my heart for the care you gave my son. I wish you could be reading this letter for updates on how great he is doing and not in his time of death. You have wonderful hearts and do great things for the babies that come to your care. It seriously took all I could the night he died not to call the NICU and ask for an update. It is like second nature to me, even have it on speed dial. I love you guys. I know Logan loved you to. You all had the honor of spending many more hours with him than I did and got to change lots of poopy diapers for him :-) He had a long struggle for life and faught till the end. I hope every person that was apart of his life take a peace of him in your hearts and know that he is safe now, that he no longer struggles, and he now breaths freely without machines to hold him down. HE IS HEALED! He is God's child and was never meant to stay on earth with us. He served his purpose and now he is back in the arms of the Lord. He was only given to us temorarily. He touched more lives than I'll probibly ever know. Hundreds or people knew Logan and cared about him. He was loved, he is loved, and never will be forgotten. I hope all who cared for Logan take comfort in knowing he is at peace and I'm sure he is being Logan in Heaven too. He can now fly with his birds and not just watch them. Thank You for the depth of my heart Love, Jennifer

Saturday, January 30, 2010

Rest in peace sweet baby boy.

Logan went to be with the Lord today after a very long 6 1/2 month battle in the NICU. The doctor thinks it was overwhelming infection that his lungs could not handle. As most of you know he had a very bad set back early on Thursday morning. He started off with a blood gas of 222. He was placed on a high frequency ventilator then. The damage had already been done to him by then. He was placed on high frequency at 930 on Thursday morning and when I got there at 10am he looked very sick. His eyes were already glazed over, but you could tell the fighting Logan was still there. I tried to stand strong. I continued to pray for healing, though my heart was torn with a gut feeling this would be the last battle. His co2 over the next day jumped from the 70's to the 150's after it intially came down. His body was shutting down. He stopped peeing and pooping and was very swollen regardless off the use of many powerful diuretics. Early this morning at 4am his eyes were swollen shut, but he was still fighting he continued to fight the ventilator regardless of how many sedatives and pain medications he had. I knew this morning this would be the day he would meet the Lord. I prayed over him and told him he did not have to fight anymore that he did not have to hold on for me or his daddy. That we loved him and knew this was not the place he was meant to be. He gave us 6 1/2 months of love and joy. When I went back to see him again at 8am I knew the choice Logan had made. he was very peaceful and had stopped fighting. He no longer breathed with the vent. He had already went to the light and was just waiting on us to let him go. What led me to my decistion is that his co2 was so high the monitor could not read it 250+ His organs were shutting down despite all efforts to save him. He stopped peeing and had blood in his g-tube. We put him on the regular vent so we could hold him. I initially thought he would pass before my sister and children could get there. His heart rate was in the 50-60's and so was his oxygen. After 20 minutes or so, I knew he was holding on so we could all say our goodbyes. His heart rate went up to 110-120 and he actually started sating in the 90's with all the vent settings maxed. He was gone though. I knew my fighting Logan was no longer there. We took pictures with the family said lots of prayers and unhooked him from the vent at 1pm. I held him in my arms while his life left his body. I knew the moment he was gone. His limp body suddenly stiffened then relaxed. He went peacefully with no pain. I am going to forever miss that baby boy. There will always be a void in my heart that aches for him. I feel comfort in the Lord and know God sent that baby to earth to show me how pure love could be for another soul. I felt God's love in that child and as he walks the golden streets of Heaven hand in hand with Jesus. I know he is safe and at peace. There is no more vents, trachs, needles, or sensors. He will forver be our angel baby and I will see him everyday in my heart, in my dreams, and every time I look at Jacob I will know Logan is there to. I know my sweet boy touched many peoples lives, I pray that Logan's purpose for being on this earth reaches you and that you to will know the love God hold for you in Heaven so you can one day experiecne it to. I love you Logan. You will never be forgotten by many.

A poem sent from Fay:
To You From God

"I'll lend you for a little while,
a child of mine" God said,
"for you to love him while he lives,
and mourn for when he’s dead.

It may be two or three short years,
or twenty-two or three,
but will you, till I come for him for me?

He'll bring his charms to gladden you,
and should his stay be brief,
you'll have his lovely memories
as solace for your grief.

I cannot promise he will stay,
since all from earth return,
but there are lessons taught down there
I want this child to learn.

I've looked the wide world over
in my search for teacher's true,
and from the throngs that crowd life's lanes,
I have selected you.

Now will you give him all your love?
Nor think the labor vain?
Nor hate me when I come to call,
to take him back again?"

God fancied he heard the parent's say,
"Dear Lord, thy will be done.
For all the joy the child shall bring,
the risk of grief We'll run.

We'll shelter him with tenderness,
We'll love him while we may,
and for the happiness We've known
forever grateful We'll stay.

But should the angels call for him,
much sooner than we planned,
We'll brave the bitter grief that comes,
and try to understand."

Friday, January 29, 2010

I'm scared!

Logan is still on high frequency ventilation. He is at 50% oxygen. He is up on his co2 a little from 79 to 89 as of 11am this morning the next gas is due at 5pm. The doctor took him of the paralitic this morning. He has had 30cc of urine output all day. He is swollen and full of fluid like he was last time he was on the stuff. They started him on a fentnyl drip to keep him sedated and pain free. The ventilator is set at 360 breaths per minute right now with a peep of 14. I'm very concerned and anxious about his co2 levels. I might freak out if they are higher at 5pm. He had been sating high since yesterday and they were weening him as low as 45% he is now staying in the high 80's low 90's at 50%. I don't know what to think or do except to turn to the Lord and trust in him that whatever happens is for a reason. He is getting a blood transfustion right now. After he is stable Dr. Brown says "some time in the next week" he will be transfered to Arnold Palmer Hospital across the street to their pediatric ICU. He is still on antibiotics and the doctor does not know what happened to put Logan over the edge, but she thinks it is some kind of lower lobe lung infection. I am torn between my my sick baby here and my babies at home. I feel so bad for Ava. She doesn't understand why we are gone and keeps saying mama's at work making the money...and daddy is too. We are staying at Ronald McDonald House until he is more stable. I feel like I am going to explode, hyperventilate, cry, and just totally freak out if something posative does not happen soon.

Thursday, January 28, 2010

As most of my friends and family already know I got a phone call from Dr. Brown this morning around 10am while Jack and I were on our way to the nicu saying Logan had become critically ill over night (btw no one bothered to call) and that she had placed him on high frequency ventilation at 9:30. He had a blood gas of 222 (normal is 40). He is currently still on high frquency he is at 55% oxygen and his last 2 gases we dramaticly different. 202 and the 2:30 gas was 95. Dr. Brown told me there was a good posibility he will die this morning. We are all praising God right now that after many wonderful prayers over the course of an hour once everyone started to pray he went from 202 to 95. I do not know what the 630 gas is yet. He is still very very sick and they do not know what is causing this. They think some kind of obstruction in his lungs trapping air. Ill try to keep everone up to date. Thanks everyone and Thank you God!

Wednesday, January 27, 2010

A life without hearing....lets pray this is not so

Andrew and Jacob went to their 6 month checkup yesterday. As I have mentioned in the past and at the Early Step initial meeting THAT ANDREW DOES NOT RESPOND TO SOUND! So finally this doctor noticed it yesterday before I could even say anything. He coos and laughs and responds to you when you talk to him, but I am pretty sure he is responding to facial expressions and not my voice. If I make the same faces without making noise I get the same reaction that I do when I make noise. So Andrew has to have a otiology visit...he did pass his hearing screen in the hosp.

We have increase Jacob's prevacid to see if that will help with his back arching like he is in pain all the time to a full tab instead of half. He is going to have a consult with a GI doctor at Arnold Palmer.

Logan was weaned to 45% yesterday and back up to 50% today. Still on full vent settings. Got another dose of Lasix today to pull some of the extra fluid off his lungs. I spoke with Dr. Brown about maybe setting up a schedule or doing something with the other diuretic he is on. Seems at least once a week he needs Lasix. So I suggested that she make a regiment that he can become stable on like getting Lasix once a week with other meds etc and making sure his electrolytes stay in range etc..She told me she was going to increase the dose on his current med to see if can take away the need for the Lasix.

Ava is SICK she vomited in my van 2x yesterday. Then threw up all night long and now she has started with the liquid diarrhea. She is holding NOTHING down. Poor baby...hope she don't give it to everyone else. She has a fever too.

Last night I bought a sectional off Craigslist. I LIKE it! It is plum! I'll post pics off it when someone I call my sister gives my camera back that she told me she was only going to have for 1 day 5 days ago TRICIA! I think that is it for now.

Monday, January 25, 2010

Dear Logan, You are suppose to be better not worse!

Logan has slowly been increasing on his oxygen since they weened his steroids from .5 to .25. He went from 28-31% range to 43% earlier today. He has not had to be bagged since the first few days he came out of surgery. Suddenly tonight at shift change of course his oxygen levels dropped low they had to bag him...increase his oxygen to 63%...and ultimately put him back on the ventilator on a rate. Last night his blood gas had a higher co2 in the 80's. The chest x-ray is a little hazy but not really really bad like some of his old ones. I am trying not to have a pity party for myself or him over this set back. I had my little crying moment. I am grateful to God and all the staff at WPH that he is still alive. That he is alert and that he had a long stretch on C-Pap and every second on c-pap is better than nothing. Thank You God for Blessing me with my children. Can't wait for the day I post when he is coming home and better yet the day he is not on oxygen and the best day of my life will be when his trach is taken off!

Jacob has been on the phenobarbital for 5 days now? I think...I have not noticed a difference AT ALL! I was hoping it would take the edge off his crankiness all the time. I love him though he drives me crazy!

Andrew is voicing his option more these days. He is demanding the same attention Jacob gets lol

I started feeding them sweet potatoes now. They like them...I have been a lazy mom I cut big holes in nipples and bottle fed it because I did not have the desire or energy to fight with them with spoons just yet.

Ava continues to think it is a normal things to pee where wants. She DID NOT play nicely today and is currently think there is nothing wrong with her sitting on the couch nude watching Phineas with Tattoo head baby (She gave baby "a pretty" with a black marker a while ago)

Hopefully I will be getting a sectional I found on Craig's list tomorrow. Lets keep our fingers crossed.

Tuesday, January 19, 2010

Lots of 1sts

Lets see the other day Friday the 15th (the date is wrong on the picture)he gr abed the toy on his swing for the 1st time. He actually laughs now. He is so sweet. Yesterday Jacob was swatting at his toys on the floor. This is VERY exciting for me that he is showing some interest in anything but crying. He had an EEG done yesterday and decided he was going to cry the entire time..for almost 2 hours he did nothing but climb me like a cat and cry. He did have a brief 4 minutes where he decided to stay still. He actually looked at me did some Jacob cooing and some big mouth open smiles at me. I wish I had a camera.

Jacob had his neurologist appointment today. She read the EEG and said even though he was moving alot she said it was very obvious that he had very abnormal brain waves conducive of potential seizure activity. So...he is starting on phenobarbital tomorrow. He has to have it 2 times a day. So the med list is not syntroid and prevacid in the morning along with the phenobarbital now and a 2nd does at night. Andrew just gets prevacid in the morning. When Logan comes home I am going to feel like a nurse doing med passes in a nursing home. He is coming home on 8 medications I think.

Logan is on 31% and has been for days. He is still on cpap he is doing very well and is pretty much ready to come home. He has been stable with no real issues. He desats when he needs suctioning and that is it. I have been trying to see him every day at the evening shift change so I can do his trach care and give him his bath. On the 22nd I get to change the actual cannula out. So the big story why he can not come home yet...We are literally waiting for him to hit a million dollars on my Cigna policy. As of this morning he was around $900,000 The reason for this is that he is so close to his million dollar life time max with several hundred thousand dollars in pending charges that they can not order his home ventilator or any of his g-tube supplies because of all the pending charges. Once he is at 1 million and they get the denial letter from Cigna saying they are not paying anymore...Medicaid will take over all of his medical expenses. SO they can not even order the stuff until then. I was told it can take up to a month to get the vent once it is ordered (I hope not) etc. Then he has to be stable on the home vent. So over billing complications his 2 weeks he was suppose to be there can now turn into another month or more! He will also get 24hour nursing care when he comes home. He was weened this morning from .4 to .25 on his steroid. Hopefully it will be gone by next week and he won't need an increase need for oxygen. This is all I can think to write for now.

Thought of something else. I fed them baby food for the 1st time tonight. Jacob went first he actually did very very well . He ate prob a little over 2.5oz. of apples spiting very little of it out. Andrew tongued most of what I gave him out...overall a very fun 1st time.

Wednesday, January 13, 2010

A light at the END OF THE TUNNEL

Logan started to improve Sunday night. His blood gases are more around his normal range. Co2 in the 50's Bicarb and Ph back down to normal range. He is currently at 28% on his oxygen and back on automode on the ventilator. I spoke with Dr. Brown today. She said she was ordering the home vent today, but it could take up to 2 weeks for it to come in. She said today 2-2 1/2 weeks for him to come home. He looked great last night! Thanks Angie, Sarah, and Dean for watching the kids! I did trach care on him and changed his trach ties for the 1st time last night. GROSS! I have to get over the urge to puke when I think about trach care.

I took Jacob to the endocrinologist today. He is within normal range on his thyroid now. He has to go back in 2 months. I learned today TSH is vital to nerve growth in babies and that the majority of a babies brain grows between 6-8 months of do you think this is age from birth or adjusted age from prematurity :-)

Andrew is starting to reach out for toys and lift his body up more when he is on his belly. He is laughing and smiling at the toys on his bouncy chair right now. No rolling over yet.

Jacob is sleeping in his bouncy chair in his normal startle mode hands up in the air fingers spread open. You would think his arms would hurt after a while. He is still not really smiling or cooing. He tries I think. he does Jacob coos...they sound more like cries. He shows his love by snuggling on your shoulder and snotting on you oh and licking you cloths.

Ava decided she was going to wake up at least that is when I woke up and she was awake watching Little Mirmaid I think. She was asleep at 730 AND WAS STILL SLEEPING WHEN I CAME BACK FROM THE DOCTORS OFFICE IN ORLANDO at 130pm! Then I tried to wake her up and she told me. "I'm trying to sleep mama!" Now She is sitting on the couch watching Phineas and Ferb trying to shove her fist in her mouth. I'm so tired of watching P. & F.!

I finally took the Christmas tree down today...cleaned up the hundreds of needles off the floor and half way reorganized the baby cage.

Sweet Andrew is crying now...I guess I need to show that little guy some attention...crap they are both cring now!

Sunday, January 10, 2010


Logan's respiratory status has been declining since his surgery on Wednesday. They have had to "bag" him forcing him to breath manually 5 times since his surgery. This is when his oxygen saturation gets really low below 30 and his heart rate drops really low. He turns purple and blue. They say he is having bronchilspasims. Why..I do not know. I also found out they did a respirator y culture the day before he went to surgery that is positive for 2 bacterias. So he has another respiratory infection, he is in pain, and he is requiring very very high pressure settings to keep his oxygen sats above 90. Right now his oxygen setting is at 45%..he was at 50% all day yesterday. They changed his breathing treatments from every 4 hours to every 2 hours. The respiratory therapist says his lung sound very bad. She said he sounds tight and is wheezing all over. The big concern is that his blood gasses show he is not blowing off his carbon dioxide. Before they would up his rate and pressures a little bit and it would do the trick..this time they are staying up and not coming down. The highest was 136 lowest was 70 since surgery but in the last 24 hours he is in the high 90's. His Ph level is not so bad. Crap! Crap! Crap! Only God knows the plan once again I leave my trust in him. All things are possible through Christ! I do believe he will prevail. My spirt tells me to move forward and keep the body wants to crawl in to a dark cave and never come out. Logan is the one suffering not me. He is a strong little boy with a will to live and I know this but I AM REALLY FREAKING TIRED OF ALL THESE INFECTIONS! Okay I think I am done now. I will update again later after I talk to the on call doctor. If his co2 don't drop soon he may have to go back on high frequency ventilation.

Friday, January 8, 2010

Logan had surgery and sick family = bad week

Logan before surgery
Logan's little hand

Getting ready to head to the O.R.

Last look at Logan before surgery

Logan just as he came back from surgery

Poor little guy!

The next day 1-7-10

Andrew sick and congested watching TV 1-8-10

Discover poor little congested Jacob likes the boppy pillow on his belly.

My 3 sick babies at home. Ava refuses to wear cloths or brush her hair today. She has pizza on her face. :-D

Logan went into surgery around 1:40pm on Wednesday. He was in recovery around 3:30pm. He looked really good and was starting to wake up when he got back to the room. He was originally weened to 33% from 50% after surgery with a rate of 30 that he was breathing over on the ventilator. His pressures were the same as they had been prior to surgery. A few hours later we went back to see him again. He started to puff up and his co2 was 94 they upped his rate to 50 on the vent and got it the 60's the next gas was higher again so they upped the pressure. Then he had a normal co2 in the 40's then the very next one later on that night was 136. They upped the pressure some more. He is still struggling today to blow off the co2. He has run between 70-100. This morning they started an arterial line because of the frequent blood gases. He is still not eating and won't until he stabilizes respiratory wise. His incisions on the other hand look great. He still has really high blood pressure and is requiring morphine around the clock with Valium to keep him sedated and out of pain. Hopefully he will heal fast and he will stabilize and be weened back down on vent settings. If all goes well he should be home in 2-3 weeks with hopefully 24hr nursing care.
Babies are so sick. Esp Jacob. They are congested and wheezing. Not sleeping well. Jacob is not eating well. Called doctor says I am doing everything I can and just suction them every 20 minutes if I have to. Ava is sick...Jack got sick last night....hopefully I'm not next!

Starting to freak out about Logan coming home! He is so much work by himself! I'm sure it will all work out though.

Monday, January 4, 2010


Jacob sleeping through his Neb treatment tonight
Andrew and daddy

Logan sleeping through my visit with him today

Andrew did not want to sit in this chair for me the other day...maybe because it was purple....

Jacob having a happy moment

Ava and her new princess bedroom set. Also styling her new hair cut from the day before. Her 2nd hair cut.

A picture of a picture Ava is really in this picture she is the tiny spot of blond hair next to Jacob's knee. She decided to hide and not come out. This picture was done by the NICU.

Dr. Velez called the morning with results of Jacob's MRI. She said the report showed the cyst actually smaller and are not compressing on his brain, but the fluid around his brain has increased. So it is good news and bad new. I guess I will find out on the 19th if they think he needs a shunt or not. I missed the boys EEG test this morning. After working all weekend and being at the NICU until 2am I could not get back up at 4am and make them stay awake and get to the hospital for the test at 6:30am. I got one of those lovely phone calls from the nurse on Saturday afternoon saying Logan only had breast milk until 1am. So Logan ended up getting formula all day Sunday because Jack was not in a "happy" mood when I got home from work Saturday night and I did not feel comfortable leaving the kids with him. He was really tired and cranky. So I drove my tired butt up there on Sunday. I had to leave work early on Sunday. The babies were getting sicker as the weekend progressed. Both babies were wheezing and Jacob was retracting a little bit. They were negative for RSV and Influenza. They sent them home with albuteral nebs. I visited Logan this afternoon. He was moved back to his old room with a window! He slept the entire time I was there. He is on c-pap at 26% He was at 24% yesterday. They weened his steroids to 0.5mg It would not surprise me if he goes up a little on oxygen. He was hanging out in the low 90's and desated into the 80's several times in 50's once. He is scheduled for surgery on Thursday at 10am he is having 2 hernias repaired. g-tube placement and a procedure for reflux that I have not idea how to spell. Nurse seems to think he is desating so much because he has a huge air leak in his trach. His co2 was 39 at 3am this morning so he is doing well.