Saturday, June 30, 2012

24 Nervous Breakdowns for 24 Hours

Well, maybe it should be more appropriate to say 48 breakdowns, for 48 hours, but I dont want my drama queen side side to get the best of me.  Let's just pretend it's 24 ;)

Thursday, June 28th, on the way to the hospital, I am so excited, maybe over- excited, to meet my little Cecilia.  As we got into the city my excitement started to fade and all of that anxiety I try so hard to control since March started to take over.  We were waiting for a 'big" room, but they decided to just keep us in the small room.  So, my first breakdown was based off of, knowing there would be no room for NICU to stabilize Cecilia in a distance where I could even look at her.  I think I may just gave birth in the worst room ever? 

When we checked in I was 3cm, 20% effaced.  They decided the best way to start the induction was to begin Pitocin at 5 AM, based off of my past labors.  We all believed this way I would have the baby between 8- 10 AM.  I was crying and having anxiety attacks throughout the night.  Every kind of doctor possible was popping in to try and talk to me and help me relax.   I think they just made everything worse though because one of them told me a lie and argued over the fact which was one of my concerns at the time.  She said they treat this defect all the time here which was not true at all.  I felt insulted to be flat out lied to when I knew the truth for months and knew exactly what the experience was and comparisons to ranked centers.  I was having last minute doubts....And I think I was quite valid to have any doubts or fears and that it should just be understood.  Sympathy and understanding would have made a difference, but trust is mandatory.   I managed to sleep from 1-3 AM.  By the morning shift change I was overall relaxed and I thought I got it all out of my system.  I tried to write things down to help me remember how everything happened, my time line:
5:08 am- Pitocin started
8 am- 4 cm, water broken.
9 am- epidural
10:45 am- 5 cm 70% effaced.  Something was put inside my uterus to get better data on my contractions.
11:30- still only 5cm.
 Baby was having decelerations for every contraction.  The midwife and OB took turns trying to dilate my cervix.  They would stretch it while I pushed on contractions.  We had to speed it up because of the decelerations.  When I got to a 7, a ton of doctors were in the room, the epidural people bedside. there was so many people.  I feared an emergency C section was going to happen.  I was in full panic mode.  When we got to an 8 they  turned Pitocin off and everyone but my 2 awesome nurses left.  This was around 12:30.  At 1:08 I was fully dilated.  The room got crowded again, the doctors all quiet and whispering.  Karl would just kiss my head and tell me I was doing great, then on last push a nurse slammed hard on my uterus.  I learned later that Cecilia was stuck at the shoulders, and that was what all of the whispering was about.  She took her first breath at 1:15.  They carried her out of the room immediately, and she made one quick cute little baby sound.  From the little I saw of her, she reminded me of AJ because she had hair.  Karl left the room and was able to take some pictures for me.

Before they took her away, her NICU nurse brought her to my bedside so I could tell her I loved her.  She made another little baby noise, and that was the only time I have seen her eyes open.  I did not really hold her, it is too awkward to find words to describe, but she was up close to me for almost a minute. 

After her IV was placed, meds started, echo, xrays, etc. done, we were able to go to her bedside (around 4 I think) and could stroke her hair, hold her hand, ect.  She was sleeping peacefully and I didnt want to wake her by touching her.  The next few hours I was in and out of her room.  She was asleep each time and I would try to get her to take the pacifier so she does not lose her sucking instinct.  She wont be fed until she recovers after surgery.

They keep her super warm, and the room was very hot.  I had hats, slippers, leg warmers, and blankies to give her, but she didnt need them.  I still wanted to try on her special hat made by Karen.  Thank you Karen, she looks good in it  ♥, even though mommy didnt even put it all the way on b/c she was sooo warm.

 Daddy rubbing her.  We love you so much Cecilia.

She started to cry and I thought she might wake up a bit for me, but she didnt.

Later on that night they were doing her EKG.  She almost woke several times, but just cried and I felt so bad for her getting all of those stickers.  Mommy did NOT want to stay and watch when it was time to take the stickers off.  
So I went to my room and tried to get some sleep.  It didnt work out very well.

At this point she had a new IV hooked up with a couple of meds to balance her o2 sats.  They want to see her in the 80's, because of her anatomy, anything higher than that indicates that her lungs is getting the majority of the oxygenated blood, and we need it to be balanced as much as possible to her whole body.  I went to my room again to try and finally sleep.  I had to sign another consent form around midnight or so for them to attempt another central IV line.  This way to avoid pricking her in every possible spot between her multiple medications, and her nutrition.  I woke up around 5 am and learned she needed to be intubated and she was also sedated so she would not be waking up now.  Their goal is to get her o2 and heart rate where they want to see it, and she was working her way there and making progress.  Later in the afternoon they would do a different approach to central IV, going by her Jugular vein.  An anesthesiologist would perform this with a sonogram guiding him/her.   These next 2 pictures of her are from my visit before having to leave while they did the IJ.

After talking to some other heart mommies and their experience with young siblings and babies needing breathing tubes, we decided to still go ahead with introducing siblings.  I thought a social worker that specializes in this kind of thing would be there all the time to help with that (what was said at the "tour"), but apparently social workers are not there on weekends.  :/  so we did our best to explain to them what she would look like before, and had a good talk after.  I was discharged so I could help Karl cross the busy streets with the kids, and also because today was my last day on this insurance policy.  We are all moved over to Karl's policy from work July 1st, which comes out to be a lot more expensive this way, but is open access and just a better coverage plan overall. 

We went and had lunch with the girls.  They were not on their best behavior at times, and my after pains were starting to catch up to me.  Karl brought the girls in with Cecilia, one by one, and I waited with the others in a separate waiting area.  By the time it was Sophia's turn, I was in a lot of pain and the girls were acting up a little.  We decided it was not a good time for Sophia to go in there, and we had to get the girls home.  Should they visit again, only bringing one to the hospital at a time unless we have family with us to help us.  I wanted to go in and say good bye to Cecilia, since I knew I would not be back until the next morning.  Karl wanted to come back to the hospital with his mom, and so he was going to take the evening shift.  When I went in there I asked them how long would the line in her neck be there, and they said probably her whole visit.  I asked if that I would ever be able to hold her with this line in her neck, and her nurse said No, well perhaps if she was stable we could help you hold her before surgery, but at this time she is not stable.  And they explained an episode where her oxygen dropped and they had to use this pump looking thing to bring her back up.  I asked them when does cardiology make rounds so I can speak to her heart team.  As you can imagine, at this time, I am feeling extra scared for my daughter and even though I have prepared myself for setbacks, and complications, I need them to explain to me whats going on.  I left there really annoyed by one nurse in particular.  The nurse that I liked, that was taking the time to explain things to me was not even my daughters assigned nurse for the day.

Once the chaos of getting the children safely into the car and buckled, I started to talk to Karl about this episode that was just brought to my attention.  Karl said it happened while he was in there with Julia, that he just did not want to talk about it at the time we were in there because the kids were not scared by seeing Cecilia, and we did not want to worry them.  His version of events was that Cecilia's nurse was still working on transferring all her meds to that new central line.  He noticed Cecilia getting blue, and some monitors were making alarms, but the nurse was not doing anything.  He didnt want to panic or over react in front of Julia, because we are still trying to learn what is or isnt normal for her heart defect.  We know she is going to be blue sometimes, possibly until her final surgery.  She continued to turn "bluer and bluer", and noticed there was no movement in her chest.  That is when another nurse rushed over from across the room and began pumping oxygen into her.  He said that she got better but it pissed him off that her nurse was right there and was not doing anything.  I then went on to tell him that I just did not care for this nurse the whole day, and I could not put my finger on why exactly, and that the nurse that "saved" Cecilia was the one I had been going to all day.  We were both upset the car ride home, and Karl was determined to get back there ASAP.  That is exactly what he did after he dropped us off and made sure the kids were all content so I could email some of our favorite doctors and friends about our concerns, and attempt to pump breast milk.  Once he got back to her the report was that she is doing much better now.  There was just a lot being done to her at the time and her vent and med settings needing to be adjusted, but she is fairly stable now and on her way to being even better stable.   Karl will be with her tonight and I am planning to get there by 5 am, and stay for most of the day, he will come back for an "evening" shift again.  On Monday I am going to make my sisters watch the kids so we can go have a meeting with her surgeon... and spend time with her together.  We hate being apart from her, and taking turns sucks!  But for now it seems to be working good on our kids, they are not scared or having a tough time.  As of now, Tuesday is still surgery day. 

I just learned a couple hours ago that baby Jaxx passed away.  </3  :(   His family are from Maryland too, and his Momma Lindsey and Daddy are in thoughts and my heart.  This is just heartbreaking news, and I hate HLHS, I hate CHDs and everytime you pray for my baby, PLEASE pray for them all...

Before I could hit send, Karl called to tell me that she had another  blue "episode".  Her surgeon comes back from out of town tomorrow and I think I may need to email him and request he come check on her tomorrow and we do the meeting then instead of Monday.  I certainly dont know enough about her heart defect to say what is or isnt normal right now, but I cant help but think she needs her first surgery now and Tuesday cant wait.  This is just too much I love and miss her and so scared for her.