Day 108

We brought our baby girl home from Children's hospital today for the first time after 108 long days!  We were given all of the discharge instructions and follow up appointment to remove her sutures from the surgery.  Just have to keep them dry for a couple of weeks- sponge baths only and keep them clean and clear of infection. Morgan looks great and eating much better I think - probably because her head isn't fluctuating daily and getting upset from the tapping.   Also provided with contacts for ongoing Physical and Occupational therapy through the school district (she has been receiving this in the hospital for several weeks now).

Recovery

Morgan was a bit fussy overnight and needed warm blankets since her temp kept dropping but other than that did very well after the surgery and did not need anymore medication.  She went down for a CT scan and X ray which we were told look good except there is some air in her ventricles/CSF which is normal from being open during surgery but it might make her fussy until released.  She also was coughing very badly all day but they said this happens sometimes from being intubated during surgery. 

Overall she is looking good and eating well today so hopefully just a couple of days before she is discharged.

Shunt Day

The day we dreaded has arrived.  Shunt surgery day.  Now that we have been through the whole surgery thing once we know a little more about what to expect and a busy more to prep.  As promised, they tapped her and sent down CSF for protein level testing early this morning - they came back at 213 so everyone agreed to proceed and was comfortable with.  Went over the procedure and last min details and signed the consent form with the neurosurgery team also this morning.  They will pltry to place the shunt in nearly the same place the reservoir was (front right side of head) and she will have a small incision behind the right ear and just below her belly button also where they will feed the tube down and coil in her stomach.  The Ventriculoperitoneal (VP) Shunt they were putting in was self regulating OSV Valve. 

There was a minor hiccup this morning with Morgan's blood tests which almost delayed surgery- her clotting factor level was low so they wanted to retest to make sure.  At this point I was just ready to have it done and over so was a bit annoying but the 2nd test came back ok.  Of course this was after the lab tech poked her a few times and finally called in the nurse practitioner in order to draw some blood- I HATE watching this and Morgan is crying and so uncomfortable.  Next they put her IV in- thankfully this time they got an experienced nurse to put in the first time since they always have issues.  Then cleansing bath- rub her whole body down with these wipes.  Spoke to the anesthesiologist again about the process and said the surgery would take about 1/2 hour but whole thing is about 1 1/2 to 2 hours. 

We ended up waiting over 2 hours while Morgan was in surgery and were starting to get quite nervous but then the surgeon came out and said it went "very well" again- whew. They were able to extubate her right away before they brought her back up to the NICU also which was great- she looked pretty good right after and I was able to hold her this evening also!  I slept much better than I have in a long time- a relief it is over, now lets have her recover quickly and get out of here!

Sodium

So apparently there is sodium in CSF which normally gets reabsorbed into the body.  Since they are tapping the CSF out of Morgan's body they need to give her a sodium supplement.  They have been giving this via the feeding tube but since we were able to remove that we had to put it in her bottle once a day.  It is like drinking salt and Morgan refuses to drink it...trying to find creative ways to get it down quickly :(

The Plan

Sat with the neonatologist and neurosurgery team today to discuss how to proceed with the shunt surgery & how to plan her move to adlib feedings & prepare for her to go home around this. They decided to test her protein level in the CSF again today (came back at 233 so still going down SLOWLY) and they will do again on Monday morning to ensure they are still going down (hoping near 200).  If so, then they are comfortable proceeding with the surgery.  We talked about if we need to push the surgery back and if this delays her going home- they were willing to entertain the idea of discharging her and me bringing her back to the hospital for daily taps if needed. I am not sure if this is the best idea (risk of infection, driving daily in the winter, etc.) but will think about it and I do not want them rushing the surgery if it is risky. 

We also talked about the procedure itself and how they fully remove the rickham reservoir to place a new shunt (I thought this stayed in and they attached the line to the existing reservoir but this is not the case).  They are determining if they should do a CT Scan or MRI tomorrow to get a better look also to prepare and I prefer MRI since less radiation.  I appreciated the fact that they were willing to sit down with me and collectively discuss our options and make decisions together.

Proceeding

Spoke to neurosurgery team and they are going to keep the surgery scheduled for next Monday.  They are comfortable proceeding because Morgan's CSF they are tapping is very clear (even though protein levels high).  He said often it is much darker from the blood clotting still present but this is not her case.   Protein level at a 100 isn't a magic number that hydrocephalus may resolve after or guarantee the shunt won't malfunction at that level but just sort of a rule of thumb I am told.

 I am still very uneasy about this because it seems like other than the shunt surgery Morgan is nearly ready to go home so on one hand would like to put this behind us and get her home but on the other I don't want to rush into it.

Protein Level

Protein level down to 247 today (from 270)- didn't decrease as much as they would have liked.  I have no idea what they will do about the surgery scheduled for next week.

Monday again

Ultrasound day again.  Morgan's ventricles looking better now because of increased tapping but they sent in CSF for protein levels as usual and came back high again at 270.  Frustrating and I think stumping everyone why fluctuating so much and going up (not down).  2 weeks until scheduled surgery and far from 100 level they are hoping for. My preference is not to rush the surgery if higher risk of course.

Dec 3rd

Well, surgery schedule to place shunt on Monday, December 3rd :(

scheduling

ugh...spoke with the neurosurgery team today and they are going to go ahead and schedule Morgan's shunt surgery for early December.  Reality starting to sink in...

I continue to research and look for success stories of Grade III/IV brain bleeds in preemies and children with shunts but quite honestly most are depressing.  There are many children that overcome delays of prematurity but few "normal" with this severe of a brain bleed and most of the stories I read of shunts talk about how often they malfunction. 

Shunt conversation

At this point I am not ready to come to terms with the fact that Morgan will likely need a shunt put in and how that will impact her life but the neurosurgery team basically said it is looking like it will be necessary.  I am bummed out that they are even talking about it and just keep hoping and praying it still resolves on its own.   Their plan starting today is to tap twice daily now to see if they can get the CSF to flush out faster and lower her protein levels.

Since Morgan's head fluctuates so much I think it is impacting her moods- maybe she has a headache or the pressure change causes sleepiness, etc. but often I think it impacts how her feedings go.  Today she wouldn't breastfeed at all and slept most of the day.  I try to feed her before they tap her because she seems to do better and not as agitated. 

Protein levels

Generally they would expect Morgan's protein levels in the CSF to be high at first and gradually decrease but this is not happening.  Over the past several weeks we continued with Monday ultrasounds and testing protein levels and so much fluctuation (up and down, bigger, smaller then bigger again) it is getting very frustrating and I don't think the neurosurgery team knows what is causing it.  Her levels were 200 then 219 now even higher at 270.  They are talking about possibly doing an MRI or CT Scan instead of ultrasound next week to see if they can get a better picture and ensure nothing wrong. 

At this point we are in the ICC unit of Children's and the last major obstacle for Morgan to go home (other than her hydrocephalus resolution) is just her feedings and getting her off of the feeding tube.  I think if we were to just let her drink out of a bottle she would be able to go home soon (less exhausting than breastfeeding to her little body) but we are purposely not rushing this because we don't want them to rush into the shunt surgery.  So...we sit tight, get her breastfeeding and continue to monitor her ventricle size and protein levels.  I must say I am extremely worn out and just trying to keep trucking along to get through this. 

Mondays

Like most people I have never liked Mondays in the first place but during Morgan's time in the NICU I DESPISED Monday's...head ultrasound day.  I always hoped and prayed each week the ventricle size would look better but was usually disappointed. The neurosurgery team explained they were really trying to push it not tapping her for 72 hrs before her ultrasounds but as suspected when they did this her ventricle size was enlarged.  This means her head is not starting to reabsorb the CSF on its own at this point.  Next week they will go back to daily tapping again.  Still really hoping to be in that 25% that never requires a shunt and hydrocephalus resolves!

Each day they tapped the CSF they sent it down to the labs for tests - to ensure there was no infection in the fluid and also to find out what the protein levels were in it.  High protein levels mean there is still blood clotting in the fluid - so it gives them an idea of how much blood clot is left to tap (and hopefully once the clot is gone her body starts to reabsorb) and also we are told they like this protein level as low as possible before they would want to place the VP shunt.  If the protein level is high they believe it is higher risk for the shunt to clog and malfunction also.  Today Morgan's CSF protein level is in the 200s, they would like it below 100.

continue to tap

They have been continuing to tap Morgan's head daily except Sunday's then see how the ultrasound looks each Monday morning.  Today it looks better- slightly decreased ventricle size and they only had to tap about 6 ml (some days they would tap up to 20-30 ml's) so will try moving to every other day now and see how it goes.

suture removal

Today they took the sutures out of Morgan's head.  The wound looks great really but still just black marker remains where they drew the line around.  Also hoping her hair grows quickly!  We are crocheting lots of hats :)

Monday ultrasound

Every Monday they will do head ultrasounds now on Morgan to monitor the ventricles.  Today we were told they look better- decreased in size which is good!  Now they will try tapping every other day so they are taking out less to see how much her body absorbs on its own. They are still telling us to "plan on a permanent shunt but we will have a party if not required".  Her head circumference was 27 at this point and also measuring this daily to ensure it does not increase too rapidly.

For now we continue to focus on her growth and health and pray the hydrocephalus resolves on its own.

nothing new

They continue to tap Morgan's head daily and will skip tomorrow (Sunday) and see how Monday's ultrasound looks.

First Tap

The neurosurgery nurse came in this morning and removed the bandages from Morgan's head- it actually looked a little better than expected.  Poor girl already had her first hair cut/shave (which they saved for us in a bag). She showed me how they insert the needle into the reservoir (just a bump under the skin with stitches around it) and pulled out the fluid.  They plan to tap this daily until they get to a "normal" level of CSF in the ventricles.  They cannot remove all of the excess fluid at once because the ventricles could collapse causing the brain to pull away from the skull.  The hope is that after we get to this baseline point her head may start to drain some on its own because as they tap the CSF it removes much of the blood clotting in the fluid which potentially could be what is "clogging" it.
The nurse also showed me how her soft spot became soft after they tapped- sort of felt like a water balloon- which we have never felt before since the fluid build up made her soft spot feel hard.  She also showed us how her soft spot was several cm's from the edges of her skull bones and explained how it should look in a non-hydrocephalic baby.  This is the first time I realized how enlarged Morgan's head really is- its hard to notice since it grew to this point so slowly and the fluid build up just caused it to continue expanding.

Recovery from Reservoir

The day after her surgery Morgan is recovering well.  She only received one dose of morphine early morning and then they were able to take out the vent later that morning and put her back on CPAP(she was fighting the vent with her breaths which is a good thing).  The major downside to requiring surgery (other than the obvious need for a reservoir to drain the CSF) is that it sets her back from the progress she has made with her breathing and eating.  They had to have the CPAP set higher and feedings started again later that evening but back to 2ml per hour and have to build up to 6 ml again which is where she was at prior to surgery.  It will likely take a couple of days for her to be back to where she was. 

Since some fluid was taken out of her head during surgery they will not tap the reservoir today. 

Surgery Day

Started the day early to prepare. 8am they had to stop Morgan's feedings and switch to clear liquids/saline.  She had to receive another blood transfusion this morning also before surgery since she was borderline anemic - I really don't like this unless absolutely necessary but they assured me it was.  The Neurosurgeon came to speak to Pat and I - he explained the procedure, how it will help and is required now before the fluid build up causes further brain damage.  We signed all of the forms and he was on his way.

Waiting for surgery for several hours is the worst.  To pass the time away we each did kangaroo cares (held her skin to skin) with Morgan since we probably wouldn't be able to hold her after surgery for a while.  The anesthesiologist came in to explain how they would re-intubate her and the localized anesthesia she would be given.  Depending on how she did they may extubate before they bring her back up from recovery or might have to leave it in for a while until she is breathing again on her own.  Then I just sat by her isolette and talked to her "coaching" her on how to breathe strong when she is done & hopefully not require heavy pain medications and sedation afterward so she can start eating again soon!

OK I lied, waiting for surgery to start isn't the worst, waiting for her during surgery is!  The procedure itself I believe took only about a half hour and we waited about 2 hrs from when she went down to when she was brought back up from recovery to her NICU room. The surgeon came out to the surgery waiting room after it was completed and let us know it went "very well".  Whew, what a relief.  The rest of the evening she was on Tylenol & morphine and slept peacefully.  She was still intubated and IV in so looking very fragile again but doing great. 

I realized this evening what a sense of relief I am feeling.  I think I have worried and hoped and prayed so much for the hydrocephalus to resolve on its own and now that the reservoir surgery is done we can accept this as a solution and move on to focus on her growth to get her healthy and home. 

Reservoir Surgery Scheduled

Met with the neurosurgeon this morning and asked them more questions about the procedure, how it works, where they will place it, etc.  I requested they complete another ultrasound before we proceed with it.  This afternoon we received the results back and the fluid build up didn't look worse but it definitely wasn't better either.  I was told that sometimes the Decadron (a steroid they gave her an extra dose of to mature her lungs faster to prepare for surgery & intubation) can reduce the swelling and that could be why it is not getting worse.  Surgery is scheduled for this Wednesday afternoon at 2:45pm :(

More fluid and swelling

ugh...another head ultrasound today which showed further fluid build up and swelling in her head.  My heart drops as the doctor informs me.  Was a long wait this afternoon to see what the neurosurgery team will say.

Peter came in and informed me that the surgeon was out right now but we should go ahead and put her on the surgery schedule for next week- it is unlikely it will resolve and they will need to relieve the pressure of the fluid build up.  The plan is to wait until next Monday to complete another ultrasound and Dr Nagib (neurosurgeon) can review results again and determine if this is the best approach. He drew us a picture of what the reservoir looks like and how it goes into her ventricles, etc. and answered a couple of our questions.   The procedure to place this involves drilling a small hole to place a thin tube through the skull into the ventricles which leads up to a reservoir (looks like a half of a small white hollow ball) which sits right underneath the skin on her head.  They would then be able to tap into this reservoir with a needle to draw out excess fluid (CSF).  I find that I feel like a zombie listening to him and I think still a bit in shock so didn't come up with more questions until later of course.

We are urging the doctors to wait as long as possible before they complete surgery to place the reservoir.  Time to let God heal her and make her bigger and stronger if surgery is required (weigh only 2 lbs today) but understand it is not a good idea to wait too long because the pressure on the brain can cause further damage. 

Follow up ultrasound

Tough day again.  Follow up head ultrasound was this morning and the doctor came in this afternoon to let us know that the results were not good- the fluid in her head was building up and causing her head to swell so the neonatologist has referred us to neurology team.  The area where the bleed occurred in the brain matter is already starting to look cystic (which is expected as it heals) which she said is somewhat unusual to happen so quickly (usually they see this taking about a month) but really doesn't mean much - other than somehow either you heal quickly or the bleed occurred prior to birth (not likely). 

Later in the afternoon I met with Peter from the neurosurgical team.  He did not seem so optimistic which was very hard to hear.  He confirmed the bleeding in the brain occurred in the area that would control motor skills and to expect the brain injury will likely result in some motor function disabilities and possibly cognitive as well.  This is so devastating to listen to again.

He also explained that if the build up of fluid does not resolve soon they would have to place the temporary reservoir (Rickham reservoir) via surgery and they would tap fluid off of this until either your head starts draining or you are big enough to place a permanent shunt.  In general this is difficult to take in but might be necessary.  It is also unfortunate because surgery will require them to stop feeding you for a while, re-intubate, etc. and sometimes it is difficult for such small babies to recover from- typically quite a set back as it is explained to us.

Will keep hoping and praying...

Brain Bleed

They say with micro preemies the first 72 hours is the "honeymoon" stage and after this is when the real fight begins.  Well the first five days were not easy for us but Morgan made it through and seems to be doing very well.  I also said once that the NICU stay was very difficult because when I walked into Morgan's room every morning I never knew what to expect or what kind of day we would have.  Nothing could have prepared us for this day and the news we received.  They do a head ultrasound within a week of premature birth and afterward the doctor came in with some terrible news- he was shocked to learn that Morgan had Grade III/IV intraventricular hemorrhage (IVH/brain bleed).  The bleeding was both intraventricular & periventricular.  He showed us the images and all we can see is black which shows the building up of water in the brain (Cerebral spinal fluid/CSF).  He explained that with the bleed in the brain matter the damage that is done is done, they will monitor this area of the brain but as it heals it leaves a scar and impacts motor and cognitive abilities.  The extent of the damage at this point is unknown but we were told to be prepared that Morgan will likely have severe motor disabilities, very probable she will have cerebral palsy and she may never walk or talk.

A large lump starts to form in my throat, my heart sinks and I am fighting back tears as I continue to take this all in and try to focus on what the doctor is saying...

He explained that the other major issue with the brain bleed is that is causes blood clots in the CSF.  CSF is constantly created by the body to protect the brain and spinal cord and constantly re-absorbed.  Apparently our bodies make and reabsorb approximately a pint of CSF per day. Due to the scarring and blood clots, Morgan's head and body is not draining and reabsorbing the CSF (hence the fluid build up we see in the ventricles). This condition is called Hydrocephalus.  We are told that sometimes hydrocephalus resolves on its own once the clotting is gone but often it requires a surgically placed shunt/drain which is permanent to drain the fluid to the stomach cavity.  At this point we will monitor the fluid in her head weekly via ultrasounds and if it continues to build up then a temporary drain will be placed (she is too little for VP Shunt at this point).  We will hope and pray it resolves on its own. 

Of course after the doctor leaves the room I am left alone with Google. I try to find stories of good outcomes from Grade II/IV IVH and hydrocephalus and try to learn about it as much as I can.  Unfortunately I find more discouraging stories than good.  Horror stories about shunt malfunctions (apparently it happens often) and high infection rates.  Stories of children with major disabilities and CP.  There aren't many positive but I find a few and try to remain optimistic.  My neighbor also gave me a book called "Preemies: The Essential Guide for Parents of Premature Babies" which contains many of the health conditions preemies face and provides good insight and information (I recommend to any preemie parent).  I find relief in factual information & educating myself with her condition and read as much of this as possible on hydrocephalus, brain bleeds, CP, etc.

Birth Day (24.5 weeks gestation)

It started out a normal work day and ended as the scariest day of my life.  Most of the day I can recall every detail but then there are some blurry moments as well.  7 am my work call gets cancelled, a few minutes later I feel cramps (contractions), they get more painful and at 7:45 am my husband and I are in the car on the way to the hospital.  We arrive in Burnsville, MN where I am supposed to deliver, I am hooked up to monitors and within an hour my water breaks.  I thought we just lost our baby girl. 

Next thing I know I am alone in an ambulance on my way to Abbott Northwestern in Mpls because I am told that Children's Hospital NICU next door can care for premature babies of my gestation.  I get settled and hooked up into my Hospital room at Abbott and my husband and parents arrive behind me.  I couldn't move from my right side because each time I do the babies heart rate drops, I received medication (Magnesium) to try to stop labor and a steroid shot for the babies lungs.  I saw the perinatologist and he told me that we need to keep this baby in as long as possible (days and hopefully weeks) and I can remain on bed rest there.  All of a sudden within an hour I am dilated to 4 cm and the nurses are throwing scrubs at my husband and rushing me down for emergency C section. 

My daughter, Morgan Grace, was born at 3:19 pm weighing 1 lb 7 oz and 13 inches long.  I didn't get to see her until later that evening but my husband held her little hand and went with her to her NICU room at Children's Hospital next door.  She was tiny, intubated, hooked up to many monitors, IV's going into stomach, severely bruised and bandaged.  She was beautiful to me.