Big milestones!

Lily has had made some big steps this week.  Yesterday (day 25) they started feeding her!!  With all of her gastrointestinal tract previously being in her chest, she was not being fed because they needed her bowel to stay decompressed so it wouldn't compromise her lungs.  Since she had her repair last week, everything is now in the right place and settled in (surgery was a week ago yesterday).  They felt comfortable enough with everything to start feeds.  She will be getting 5ml every 3 hours for a few days to wake up her digestive system slowly.  Her first feed didn't go so well.  There was a residual left in her stomach that was almost the full volume of her feed.  However, her second feeding was great with barely anything left in her stomach.  So that means that everything is starting to work.  All of her subsequent feeds have been great with very little residual left.  Hopefully she will be able to tolerate that volume and they can increase her feeds.

Today (day 26), they did another wean on her ventilator.  She is going to have little weans done every day as long as she tolerates them.  So now she is taking baby steps to getting off of the ventilator.  Also today I finally got to HOLD her for the first time.  I have been anxiously awaiting the time when she would be stable enough for me to hold her and today was the day.  She had her chest tube (from surgery) taken out yesterday which was the last thing holding us back from holding her.  For 3 glorious hours this afternoon, I finally held my baby girl!  She did get upset at one point when I had a tickle in my throat and coughed.  I think it startled her and maybe hurt her a little.  Seeing her silent cry broke my heart.  If she could have made a sound it would have been really loud baby screams.  They ended up giving her morphine to help ease her pain.  She is already on a fentinyl drip but can get morphine to help if her pain gets worse.  Since that chest tube just came out, she is probably sore and she is still recovering from a pretty major surgery.  Once we got her pain under control she settled right back down.  With her being on the ventilator still we can only hold her once a day and for a minimum of 2 hours because of how hard it is to move her.  It took 3 nurses to move her and all of her "accessories".

Now here are some pictures from the past 2 days:

After her surgical dressing was removed

Holding my baby girl!!!

-Liz

Day 24 (plus recap of days 6-10)

So today is day 24 for little Miss Lily.  They have been monitoring a pleural effusion (fluid around her heart) for the past several days and so far it is unchanged.  Since it isn't getting any bigger, they are just going to continue to monitor it.  Her blood gases have been great for several days so they decided to wean some of the pressures on her vent this afternoon.  The first blood gas following that wean was good.  They are going to leave her at those settings for a few hours and monitor her blood gases to make sure they stay right where they should be.  If her blood gases remain in normal range then they will probably do another wean tomorrow.

She is continuing to have fluid output from her chest tube (that was placed there after surgery) so I can't hold her just yet.  I am really ready to hold her because I haven't been able to yet!  Her pain is getting more under control.  For the past few days since surgery she has required extra doses of morphine.  For the past 24 hours she has not required any additional morphine.  I am so glad that her pain is finally more under control.

Overall today has been a great restful day for my baby girl.

So now for a recap of days 6-10 (I will get this caught up)

Day 6 April 5, 2012 and ECMO day 4
She was very active today and would open her eyes when you talked to her.  She is still quite puffy from being on ECMO but it is starting to resolve since they started CVVH (dialysis).  She had a head ultrasound to monitor bleeding (one of the possible side effects of being on ECMO).  Apparently at birth (possibly), she had a grade one brain bleed.  They saw it when they did the initial head ultrasound prior to placing her on ECMO.  The brain bleed is resolving and there aren't any new bleeds.

She also had an Echocardiogram to figure out if she still had pulmonary hypertension.  She still had PPHN so she will be on ECMO for a while longer while that resolves.  We were also able to see her ventricular septal defect (VSD) which we didn't know she had until after she was born.  With PPHN, the blood in the heart wants to shunt and not go to the lungs so the shunting has actually made the VSD larger.  Hopefully once her PPHN resolves, the VSD will get smaller and that won't require any additional surgeries later.  She also started receiving breast milk swabs every 3 hours to get her used to the taste and give her antibodies.

Day 7 April 6 and ECMO day 5
Lily was very restless today and was easily agitated.  Her morphine dosage had to be increased and we had to minimize how much stimulation she received.  Her white blood cell count was slightly elevated but that will be monitored closely.  Her lung x-ray looked unchanged from the previous day so she still needs help getting her lungs to open up.

Day 8 April 7 and ECMO day 6
Her white blood cell count was still elevated but the marker used to indicate infection (CRP) was not elevated to a point that would show she has an infection.  Her PICC line had to be removed because they think it has infiltrated.  They think that may be the cause of her increased agitation yesterday and may have caused the elevated white blood cell count.  They also think that this is causing the inflammation in her chest.  CVVH has pulled fluid off of her everywhere except for her chest.  When they tried to pull additional fluid off to decrease the swelling in her chest, her limbs became too "dry".  Once the PICC line was pulled she actually allowed the respiratory therapist to do her lung "exercises" without getting upset.  By the evening, some of her swelling had gone down and she was much calmer.

Day 9 April 8 and ECMO day 7
Lily rested today.  They tried to put in a new PICC line but were unable to find a suitable spot (she is a notoriously bad "stick").

Day 10 April 9 and ECMO day 8
Lily had another nice restful on ECMO.  Her blood gases continue to be good and they were able to turn down her "flow" (amount of support) from 90% to 60%.

Tomorrow I will post about Days 11-15 which were filled with big changes.

Slowly updating the first few days (Days 1-5)

I am absolutely awful at keeping up with a blog.  Lily is now 23 days old and I haven't updated since she was born!  So over the next several days I will be giving a recap of what has happened so far and then hopefully keep up to date with what is currently going on.  So here we go......

Birth Day: March 31, 2012
Liliana Berry made her arrival at 8:09 pm weighing 6lbs 7oz and 19 inches long.
At 6am that morning I woke up thinking my water broke.  We went to MUSC and I was admitted at 11:30am and they started pitocin because my water had broken but I wasn't having regular contractions.  By a little before 8 I was ready to push and Miss Lily arrived shortly thereafter.  She was delivered in the OR and then taken to the stabilization room.  I saw my baby girl for a few seconds before she was taken away from me, blue....

Her first APGAR score was a 4.  She was intubated within 1 minute of her birth and then had an APGAR of 8.  Two hours from her birth she was finally stabilized enough to go up to the NNICU.  They brought her in for us to see on her way up.  My heart broke as my baby girl was taken away from me and me not knowing in what state she would be in when I saw her again.

April 1, 2012 Day 2
Shortly after midnight we went up to the NNICU to see our Lily.  They were having lots of trouble getting the bowel in her chest to decompress (lots of air in it) which was affecting her lungs.  Finally they were able to get most of the air out of it and she stayed kind of stable for most of the day but she was on very high ventilator settings.  We took a break from the NNICU for dinner and one of the neonatologists came down to talk to us.

In order to keep her stable and with decent blood gases, they were having to give her "volume" meaning they were giving her saline boluses to increase the volume in her blood vessels.  Her blood pressure was also sky high and she was having trouble oxygenating her blood.  They came in to get permission to do a blood transfusion in the hopes of increasing her blood volume and possibly decreasing her blood pressure and improving her oxygenation.  While he was in the room he decided to go ahead and talk to us about ECMO while things were not emergent and to obtain our permission to put her on it if necessary in the future.  We sign all of the consents and then go back up to the NNICU 30 minutes later.  This is where things get worse.......

While the doctor was downstairs talking to us things took a turn for the worse.  Lily was getting more and more unstable and ECMO is now a very real possibility.  She has pulmonary hypertension, meaning that the blood doesn't want to go from her heart to her lungs because the blood vessels are very constricted.  That is why she is having trouble oxygenating her blood.  However, the blood transfusions help and she is sort of stable for the remainder of the day.

April 2, 2012 Day 3 becomes ECMO Day 1
The entire day she was unstable.  They kept trying blood transfusions, blood pressure medications and even inhaled nitric oxide (to try to open up the blood vessels to her lungs) but absolutely nothing is working and she was going downhill.  The decision was made to put her on ECMO.  ECMO is extracorporeal membrane oxygenation and is a type of bypass.  Two cannulas were placed in her neck in the jugular vein (to return oxygenation blood) and carotid artery (to remove her blood) to place her on the machine.  Her blood was oxygenated by the ECMO machine and then returned to her body.  This allowed her lungs and pulmonary arteries to rest so that the pulmonary hypertension could resolve over time.  At this point we had no idea how long she would be on or if ECMO would even help her.  The nurses told us that this treatment was reserved for the sickest of the sick and was a last resort.  Lily was put on ECMO at 10:30pm

April 3, 2012 Day 4 and ECMO Day 2
Well this last resort is exactly what Lily needed because she stabilized after being put onto ECMO.  This day was hard because it was great to see her stable but hard to see her with all of her blood being taken out of her body and her starting to become puffy (a common side effect of ECMO).

April 4, 2012 Day 5 and ECMO Day 3 
Lily finally opened her eyes today!  She was continuing to have great blood gases and was stable all day. She also started moving around more and was kicking her legs and moving her arms.  When babies are on ECMO, they usually get puffy due to excess fluid buildup from the body having to process twice the body's blood volume.  Today they had to start using the "dialysis" component of the ECMO machine to pull more fluid from her tiny body.

Tomorrow I will update days 6-10.  As of today (April 22) she is doing great for the stage of recovery she is in now.  She is post-surgery day 5 and is starting to feel less pain (requiring less medication) and is remaining stable.