As I sat in the NICU a little over a year ago I thought It was the longest most draining time of my life. I watched my newborn cry in pain, he was content and comfortable in my womb, he was safe, and then his world got turned upside down and was exposed to this unknown environment, he was no longer physically apart of me and I couldn’t save him. He sat in an incubator for 2 weeks and let his skin do his cycle, it broke my heart to watch him shed his membrane. He was so fragile and I kept telling myself ” this will soon pass, he will never have to experience pain like this again.” I was wrong.
This week has broke me.
I updated you all on facebook confused to why Lincoln wasn’t recovering and trying to figure out how he was in so much pain.
His neurosurgery team tried to comfort us with their logic. ” Lincoln didn’t just have a simple brain surgery, he had one of the most difficult brain surgerys to date, hes going to be in pain.”
He refused to eat.
“his throat is sore from the breathing tube, its normal.”
6 days later me and adam, his biggest advocates realized he hasn’t actually opened his mouth since surgery.
The ENT team came and looked at him and saw that his jaw was locked. They reviewed the CT scans he had on Saturday.
“His jaw has been out of place since surgery.”
This explains why he was in so much pain, this explains why he didn’t eat.
There is nothing like watching your baby suffer. He was suffering as he arched his back , not being able to fully open his mouth to scream. His blue tired eyes looked at us for help as we cried inside confused at what to do.
I feel like Lincoln is sinking in quick sand and im trying to help him, but there is nothing I can do.
You all have commented about how strong I am, I wish I could agree. In reality my chest feels like it is holding 200lbs, with every cry and extra dose of pain meds its like adding 10 more pounds, im assuming that feeling is my heart.
I got deep into thoughts on feelings. You all feel them, Happy, Sad, Angry..
On a scale of 1-10 how sad are you? in reality its much more broad than that.
Most people don’t ever have to deal with this depth of sadness.
I know it might sound crazy but Lincoln hasn’t looked at me the same. I wish he could understand me and know that I am just allowing all of this to happen to help him. He has a look of distrust and sadness and I just want to scream that I love him.
I miss my Ruthie and Zion so much, I want to smell Zions sweet head and I want to see the sillys of Ruthie. Its been a week and counting since I’ve held them. That does something to a mother.
You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand
And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now
As the week has gone by a number of things have happened, If your not friends with us on Facebook I will post our updates at the end so you can catch up.
The plan was suppose to be as follows-
- Recover for 4-5 days.
- keep drain clamped and see how his fluid is getting absorbed and drained in his head.
- if all is good then take drain out and go home.
Well its day 7.
On day 3 Lincolns incision started gushing Fluid.
The Neurosurgery team thought it would be a good idea to open his drain to 15. the higher the number the better.
15 wasn’t good enough because Lincoln continued to leak fluid, as the days went by he went down to 10 then 5 then 0.
He went in for a CT scan on Saturday, as we lifted him up from the CT scan the sheet underneath him was soaked with fluid.
They dropped the drain to -5.
The CT scan showed that the fluid isn’t reaching the 4th ventricle.
Lincoln has been diagnosed with Obstructive Hydrocephalus.
Obstructive Hydrocephalus is a dangerous condition where the normal drainage of spinal fluid out of the brain’s ventricles is blocked and the resulting pressure build-up can cause headaches, nausea, blurred vision, double vision, or in severe cases even loss of consciousness.
Apparently the anatomy of his brain is causing the fluid to be obstructed and not flow properly.
Every time we close the drain he leaks. We were hoping to keep it shut and see if he leaks but the more he leaks the more he is at risk for meningitis.
We were hit with the news that Lincoln will in fact need to have a shunt.
My heart dropped, I began to shake and I forced back the tears just enough to look like I was holding it together. As I muted out the next couple conversations the doctors were having, a million things were running through my mind.
-I wrote that in my blog dated 4.5.2015 and those feelings engulfed me again.
We were told we are choosing life or death at this point.
He was scheduled to have his surgery today at 4 to have his shunt in place. I was at peace going through with the surgery because all of the symptoms but my dear husband wanted to completely exhaust all of the options before we “marry the neurosurgery team.”
The new plan-
- Raise his pressure setting of the drain back up to 15 by Thursday- we will do this slowly to allow his brain to adjust. If at anytime it starts to begin to leak again we will schedule surgery.
- While the drain is at 15, monitor his head pressure, if its between 13-15 than we will have surgery. Normal range is 5-8.
- If we can keep the drain pressure high at the same time as keeping his head pressure low than we will reevaluate the idea of a shunt. He will be having a CT scan to see how his brain is adjusting to the new plans.
Today Lincoln went under to have his jaw fixed, they also cleaned his ears out.
Please keep praying for our baby. He has had one really awful week.
Be praying for my mom Kema and the kiddos, Im sure she is soaking up all this alone time with them.
Pray for me and my husband- its so often when things like this rock your world you lose sight of each other. pray for us to have peace and courage in this and that with time our hearts will mend from this experience.
We had an incident transporting Lincoln from surgery after his jaw this evening. Its extremely vital that when Lincoln is moving that his clamp to his drain stays shut, as TWO nurses were transporting him across the hospital I noticed that his clamp was open, I spoke up and told her that it needed to be shut and she looked me in the eye, and said it didn’t matter because it was level, I got her to shut it but I was extremely furious.
She also didn’t hook him up to his IV drip after he woke up so he wasn’t receiving his pain meds or his muscle relaxer.
Needless to say we will be filing a complaint. Our wonderful nurses on the Recovery floor stayed an hour after her shift to file a complaint as well.
Thank you all for donating to Lincolns Fund. Adam is taking a 2 week short term family disability break off of work, with that being said he will only be bringing in 60% of his pay during that period, that wouldn’t have been possible without your support.
Here are some recent pictures of his hospital Journey.
For those of you not on Facebook, here are the updates throughout the week.
UPDATE on Lincoln. The night was spent trying to manage his pain. He would sleep for 30 min then scream and kick in pain. We have been uping his dose of meds throughout the night. Because of the brain bleed he is limited to the types of narcotics he can take.
I held him as a newborn in the NICU after being diagnosed with ichthyosis and told myself it couldnt get worse than this. Well last night was by far the hardest night as a parent, and I cant imagine it getting worse tha…n this. His age is so hard, I wish he could tell us exactly what hurts.
He keeps putting his hands on his head and feels comfort as we place ours on his head. We spoke to the neurosurgeon team this morning and they explained when they opened the back of his head up they had to move muscles around and in that he will be experiencing severe muscle spasms, on top of that the bleed causes head pain and just his brain trying to figure out what to do without all that pressure causes discomfort. His skin is itchy from the meds and they will be giving him benadryl to relieve that. They are changing some meds around and giving him high doses. Instead of going to the normal floor today he will be spending another day in the ICU. Thank you all for your continued prayers.
Later in the day-Quick update- We think we finally have got a good hold on his pain management. Hes on dilaudid, Tyelonol and benadryl. He had an 8 oz bottle at 3am but his body isnt digesting it, he just threw some of it up, other than that he hasn’t ate food since the 30th at dinner, he refuses to eat.
Lincoln is also experiencing a fever. Please pray that that goes away.
They have started to calculate the pressure in his head, initially they didnt think they would need to open the drain, his level is at 13-14 now, if it gets to 15 then they will start the draining process.
Thank you all for your prayers, they are obviously working, so happy his pain is under control.
From the depths of our hearts, thank you. Thank you for taking a moment to pray for our joy. Your prayers are working.
The good news- lincoln slept through the night! That means me and adam did to!! He is still on the dilaludid drip but didnt he need any extra, where as the first night he needed it every 15 minutes. They are going to start him on a less strong narcotic and start slowly weaning him from the dilaludid to see how he manages his pain, they will have him on the o…ther pain reliever as they are weaning him so he wont be miserable.
His fever is GONE! He is at 98.6 😀
His pressure last night in his head went down to a 7!! That is great, they will check it again later this morning.
Other news- he did throw up quite a bit last night, they gave him some anti nausea meds to help.
He still wont take anything by mouth.
We havent really got to see him awake yet, im missing my little spunky boy so much, I am also just so relieved he is not in any pain.
The plan is to get him down to the normal recovery floor and out of the ICU.
Please keep your prayers coming and continue sharing so others pray for him. Its amazing to know you all are praying for him all over the world.
His skin condition- ichthyosis
For him to stay comfortable- lots going on with his skin, incisions, cords, his digestive system.
The hospital staff
The kids and nana
Oh and Adams truck, on the way down his exhaust manifold started losing parts? He says its safe to drive back but just pray for the enemy to be gone.
Thank you everyone. Much love.
“Lincoln hasn’t ate since monday evening, we are going to go ahead and put a feeding tube in.”
An hour of pain that was inconsolable. The nurse gave him extra pain meds and he fell asleep.
We knew the doc would be in in 10 min to do rounds and Adam suggested we try one more time to feed him before they push for the feeding tube.
2 baby food puches gone withen 5 min and a 4 oz bottle of apple juice consumed. PRAISE JESUS!!…
Lincoln is now awake and alert and trying his best to play with us.
Thank you community for coming together to help, and most of all thank you for your continued prayers.
We are hopefully going to the recovery floor today.
CALLING ALL PRAYER WARRIORS
As we were packing up getting ready to transfer to the recovery floor, Lincolns incision started gushing with Spinal Fluid. Thank God for our wonderful Neurosurgery team that made the decision to put the extra drain in. We recently had it clamped because his pressure readings were normal. They decided to open it to release some fluid. The plan is to keep the drain open for the next couple of days and then clamp it back up, then give it a few days a…fter that, if then the fluid starts to build up he will go under and get another surgery to get a shunt. If he does well with it clamped then he will get to come home.
Please pray his body will naturally communicate the fluid down the spine. The doctors also warned us he will be experiencing a severe low pressure headache, so pray we can manage his pain. We will be in the ICU for another night.
This is lincoln basically telling everyone to leave him alone. Hes done.
The plan is the same. Keep the drain open for the weekend, then shut it and see what his body does. If his fluid starts building up again with it shut then we will do the shunt.
He wont eat again and threw up quite a bit. Hes just not feeling good. We had a rough night managing his low pressure headache. He constantly held his head moaning in pain. I miss holding him, but with the dra…in open the nurses have to clamp it shut everytime he moves. We noticed a spot on his face that could be an infection, its raised and spreading. They are also testing his spinal fluid because it should be clear and its quite bloody- which is expected after surgery but it went from bloody to clear and now bloody again. This boy is brave and courageous. I wish I had updates of good things, but its the raw that we need prayer for.
Ill update this post throughout the day.
Lincolns face is not infected!! Yay! His fluid came back normal! Yay! We got put in a normal recovery room! He sat up for 5 min and played 🙂
The docs did a dye CT scan earlier today, they wanted to see exactly where the fluid was going, what kind of shunt lincoln would need if he needs to get one, and to make sure everything was ok, as he was doing the scan he had to have his drain clamped, in the hour that it was clamped for the scan, his pressure built up …and fluid starting coming out of his incision again.
The team said nothing alarming came back other than he has a large amount of air in his head, they think its from when the fluid cones out of his incision that air gets allowed back in. If you have ever had a surgery you know how painful it is for your body to reobsorb that air.
We spoke a bit about shunts today. They want to take their time with the drain and really be certain that he does need one before going through with it, as of right now everytime it gets clamped, it builds up quickly- a sign that he may need one.
Please still be praying for his pain, he wakes up for a couple minutes and then he realizes hee in pain and it takes us a while to calm him.
Adam went home for the night to be with the kids for the day tomorrow.
Thank you all for your prayers, your fb shares and all the messages coming our way!
Oh and whoever sent us a gift card from Ontario Canada to the cafeteria, thank you!
Today has felt like a Rollercoaster.
I talked the doctors into taking Lincoln off of the steroids he was on because his swelling has gone down, he was seriously roid raging. Since then he has been acting himself, I think its also a combination of daddy being here as well. He has this cute little sqeek toy laugh.
He sat up and started eating a soft nutragrain bar, Adam and I noticed he wasnt using his mouth correctly and that his jaw wouldnt move. As we thought about it he h…asnt actually opened his mouth since surgery. The docs said the typical “he had a tube down his throat and its probably dry.”
Well as his lock jaw continued we had the ENT come check lincoln out. They reviewed the ct scan he had yesterday and Lincolns jaw is dislocated. It has been dislocated for a week. This explains the immense pain he has had and the reason he hasnt ate. My heart is broken for my baby. I wish I would have caught it sooner. Im upset with the sloppy anesthesiologist who did his incubation procedure and didnt check his jaw after. They will be putting him under tomorrow to put his jaw back into place. The good news? The ent will do a deep cleaning of his ears while he is under.
Can this guy just catch a break? If he was 6, i’d take him to Disney world for everything hes had to go through!