Still Waiting...

So it seems that the reason we are STILL here, is in fact because of the fact she was given oral meds for 36 hours instead of IV, and because they basically skipped a day trying to get her off oxygen.  The new cardiologist on rotation came and admitted that there has been a definite lack of communication in Kennedy's care, and perhaps a few too many people with their hands in it.  That doesn't get us home any faster.  They were originally saying Friday, but fortunately I have a few people on my side aiming for Wednesday.  They started decreasing Kennedy's diuretics yesterday, and they should be switched over to oral today, with the intent to discharge tomorrow.  Please keep everything crossed for us.  I'm going crazy in this place. 

In an attempt to keep Kennedy more comfortable (and happier) they agreed to put a hep lock on her central line, so we could move around and play with her more.  We would just have to keep her on a portable monitor.  Of course, this sounded ideal.  But they never got us the portable monitor.  They also agreed to stop waking her up all night long!  Sunday night was ridiculous, and I let the team know that during rounds yesterday.  They woke her up four times.  For a diaper change, for vitals, for a chest x-ray and for IV meds.  All in a three hour period of time.  So they agreed that they would alter the schedule so she got her meds and assessment at 8pm, and then could be left alone until 4am when she needed her meds again.  They would also do the chest xray at that time.  Perfect, right?  I'm not sure what's happened, but we seemed to have changed nursing staff from week to week.  I was waiting forever to get milk for her, only to have to hunt down the unit secretary.  They were 1.5 hours late giving her Lasix last night, and if I didn't ask I don't think it would have gotten done.  I had to ask again this morning for it to be given.  I had to ask three times for her IV to be checked in her foot last night, and then when they determined it had to be removed, I had to remind them to actually take it out.  This morning when they woke her up for the x-ray, and  I unsnapped her clothes, I discovered her leads were all messed up.  I stuck them on wherever and went about my business.  I let the nurse know.  They never changed them.  Hope it doesn't matter where they are!

Aside from our hospital woes this week, Kennedy is doing amazing.  Her latest echo showed that her heart is functioning as it should be.  Her oxygen levels are great.  She's eating between 24-30 ounces a day and has shown some weight gain.  She's no longer getting oil mixed in her bottles.  She also has more energy than ever.  I cannot wait until we can get home and get back to life with her.  She is so full of smiles and energy I know we're going to have so much fun.

Yesterday morning, in an attempt to make her happy for a few minutes, I let her watch TV.  We had her propped up in the bed with her toys.  I had to pump, Marlon was at work, and she just needed to be occupied for a little.  She had her new toys in bed with her.  She had the bracelet over her arm, the ring with the "bling" in one hand and "purse" in the other hand.  Total diva in training.

Survival Stories From the NICU

Kennedy's First Day in the NICU

Hopefully this entry doesn't come across completely scatter brained.  Although it felt like eternity that we were there, seven weeks later, it's very much a blur.

I have to admit, I had no idea what to expect going into the NICU.  All I knew is that in reality, we should have been going home from the birth center, with our sweet baby girl.  I wanted more than anything to be in my bed, snuggled up with her.  Instead, I arrived at the NICU to find her under warming lamps with tubes and wires.  Despite the Down Syndrome, everything else was going well.  I hoped we would be discharged in a day or so, and could move forward with life as we would soon get to know it.  

Upon arrival to the NICU I was soon faced with a "Lactation Consultant."  I put that in quotes, because I can't believe anyone who would say the things she said, would actually call themselves a Lactation Consultant.  She said things like, "Babies with Down Syndrome can't breastfeed,"  "You'll have to give her a pacifier," and "You'll need to supplement with formula."  I looked at Andrea and Angie with confusion and amazement.  I couldn't believe what I was hearing.  Luckily they spoke up, and defended the fact that Kennedy was already breastfeeding!  I was still in shock, and numb.  I hadn't yet realized that I would soon have to stand up for my daughter and fight our battles.  This was only the beginning of the breastfeeding versus formula battle.  Little did I know at that moment, just how hard things would become.  About the only thing I can thank the "Lactation Consultant" for, was assuring that Marlon and I were able to stay in a "courtesy room."

Kennedy had an echo performed on our first day there, and the Pediatric Cardiologist came over to talk to Marlon and I.  I was sure that he was going to tell us that everything was fine.  After all, her EKG had been normal and no one heard anything abnormal when listening to her heart.  I could not have been more wrong in my assumption.  The doctor explained that there were a few things going on with Kennedy's heart.  She had an AV Canal Defect and a narrowing of the aortic arch.  He explained that there was also a valve they would be watching to see if it closed.  Then the words "open heart surgery" came out of his mouth.  I can honestly say, I pretty much lost it at that point.  My sweet baby girl, just hours old, was going to need open heart surgery in a few months.  This was like a nightmare.  I kept thinking I had to be dreaming because this couldn't be happening.  The news of her diagnosis of Down Syndrome was trivial compared to the heart defect that would require open heart surgery.  To make matters worse, my dreams of a quick exit from the NICU were deflated when he told me that we would be there for three to seven days.  

Kennedy getting lots of snuggles from mommy and daddy.

Little did I know, I was in for what turned out to be the longest five days of my life (to date.)  Some of the nurses in the NICU were wonderful, and for them I am grateful.  However, there were just as many who I often termed "Nurse Ratched."  I quickly found that each shift change brought about a huge level of fear and anxiety over who the next nurse would be, and what struggles we would encounter.  Kennedy was nursing great, and I was pumping around the clock in hopes that I could build my milk supply.  The night after she was born, her IV was already removed and her oxygen had been decreased.  She was doing really well.  By the next day, concerns over her weight began.  She had lost a few ounces, just as any new baby does.  But we were being held to "NICU Standards" and that wasn't acceptable.  Our nurse started pushing me to supplement.  I refused.  I was still pumping around the clock, every 2 hours.   I was nursing Kennedy and giving her bottles of what I was pumping.  We had an awesome night nurse, her oxygen would soon be removed and I felt like we were really making progress.  I left the NICU, headed to my room to shower and get breakfast.  I felt confident that we were on our way to going home.  I even sent out text messages saying how great things were going. 

Kennedy, snug as a bug in her NICU bassinet.

Boy was I shocked to go back to the NICU a short 1.5 hours later to be told that the Neonatologist wanted to put a feeding tube in!!!!!  This is just one example of the inconsistencies that occurred from one nurse/shift to the next.  Not only were some of their nursing practices inconsistent, so was their documentation and verbal communication.  I was asked by several nurses about my "breech birth" and the neonatologist was apparently under the impression that I had no prenatal care.  This particular nurse who happened to mention they wanted to put a feeding tube in, was told that the Cardiologist discussed it with me the day prior and I "went running from the room crying."  I had barely spoken with the Cardiologist the day prior.  Did I happen to mention we had not even seen a neonatologist since the day we arrived?  That was Saturday, and it was now Tuesday.  Marlon and I began another argument.  My husband really stepped up to deal with the "medical" side of it at times.  I was emotionally a wreck and just couldn't handle it - reasonably.)  I am so thankful for Angie and Andrea who were always available to provide support, encouragement, and information.  Just as I refused to supplement with formula, I refused the feeding tube.  My compromise was that I would pump, and give her bottles. She needed to eat 2 ounces every 4 hours.  I knew this would be a challenge.  She was a sleepy baby.  But I was determined that I wasn't going to give in to a feeding tube with out a fight.  Well, my strong little fighter did it!  We proved them wrong, and even the neonatologist had to admit that he was wrong, and a feeding tube wasn't needed.  Kennedy gained back 2 ounces that day!  There was an end in sight!  

 Andrea visiting Kennedy * 2/22/11

After standing my ground, and Kennedy and I proving them right....and a meeting between my husband, myself and a hospital administrator, I think everyone started to realize that I meant business.  People who had "looked down on me" for not having a traditional birth were suddenly interested in hearing my story.  

After five days in the NICU, a terrifying diagnosis of a cardiac defect, and confirmation of the Down Syndrome, we were finally able to bring our sweet baby girl home.  She was weighing in at 7lbs. 4oz.  Just 2oz. less than her birth weight. 

Those five days were an eye opening and emotional experience.  I was still dealing with the shock and reality of Kennedy's diagnosis, and I quickly realized something I knew all along.  You can't just go with what the medical staff says, because while they did go to school, no one knows your child better than you.  Our NICU stay also showed me how supportive our families are, and how much we would soon be depending on them.  Sadly, the experience also taught me who my real friends were (more on this later).  I am grateful to our friends and family who were with us, supporting us emotionally and physically.  I'm thankful for all of our family and friends (and even strangers) who provided us with their love, support and prayers.  I am especially grateful to Andrea, Angie and Bea who went above and beyond to provide such a high level of physical and emotional support through visits, phone calls and text messages.  Marlon and I truly could not have gotten through those five days with out everyone's support.

Kennedy getting strapped in for her ride home!  2/24/11