• The first 14 hours…

    The first 14 hours

    July 12, 2014 – 3:35 am

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    She is perfect! Morgan Avery – born 7/12/14 at 3:35 am

    Our beautiful little girl Morgan was born. After 8 hours of labor (about 3 of them being rather difficult) she came out screaming at the world. She’s beautiful! Weighing in at 8 lbs 10 oz and 20.5 inches she is the largest baby that I have birthed. What a sigh of relief! After holding her for about 20 minutes I let the nurse take her to clean her up and get her stats. Jeff was in awe – taking photos and taking in her beautiful little angel face.

    She stayed with us in the labor and delivery room for about two hours while I tried to feed her and loved on her. It was pure bliss. Jeff and I were both pretty exhausted once the endorphins weren’t running strong so we were getting pretty sleepy. We decided to let the nurse take her to the nursery while we switched rooms and took a rest for a bit. Being that Morgan is #4 we knew that we should take advantage of the nursery help while we could to get rested.

     

    8:15 am

    We decided it would be a good idea to have Jeff go home and let the dogs out/get showered while I had breakfast and showered as well. While waiting for my food I sent out a few texts to announce Morgan’s birth and was feeling pretty good. I actually felt amazing – and shockingly well rested for having less than two hours of sleep in 24 hours! I was ready to see my baby and was a little surprised that the nursing staff hadn’t been in to bring her – but I figured it was because we asked them to keep her a few hours so we could rest.

     

    9:20 am

    A few minutes after finishing my breakfast the pediatrician on call came in and introduced herself. I had heard a lot of great things about her from when Brooklyn was born so I was glad that she was the one on call. She was pretty quick to get to the point. “Morgan has a pretty loud heart murmur”.  I wasn’t too concerned… I know that heart murmurs are pretty common and don’t always mean anything bad (thank you internet…). But then she started to tell me more about my little girl…

    While in her bassinet – after her bath – the nurse noticed that Morgan’s lips, feet and hands were turning blue. She seemed to struggle to breathe. She called the doctor over right away and they checked her oxygen levels. They were extremely low – about 70 (should be 100). They shut down the nursery and moved her to the special care unit where they placed a cannula on her and fed her oxygen. They inserted an IV to give fluids and started working on tests to find out what was wrong with our little girl.

    Shock…WHAT?? She was FINE? What happened? She’s healthy! NO! This can’t be happening…. I was spinning. She went on to tell me the tests they would be performing, what this could possibly be and what might have to happen. She would get an echocardiogram right away – there is a pediatric cardiologist in Charlotte that would review the results and determine if it was a heart defect or something else. She may be transferred to Charlotte. We may have her down there for a while. She may need surgery! Oh my God… here come the tears…

    When she left the room I had to get it together to call Jeff. I had to explain all of this – yet I knew nothing about what I heard. I was confused and had no idea what all of this meant except that my baby wasn’t here…. with me… in my arms like she was supposed to be.

    I called him and immediately, when I heard his voice, I lost it. “Morgan has a heart murmur… they have her on oxygen… they are running tests”. No need to detail it out, he was on his way… Thank GOD.

    I sent a few texts – one to each of our close friends who we knew would pray. I sent one to my sister – she was planning on visiting and it looked like that wasn’t going to be feasible today. Then I prayed… I cried… and I prayed again…

     

    9:45am

    Jeff arrived. I told him he would have to get the doctor to explain things to him – I couldn’t make heads or tails of what was going on. So he left and requested the nurse to send her in ASAP to talk about all of this.

    I decided to shower – I couldn’t just sit there and wait. Normally the first shower after childbirth is amazing and relaxing. This one I just felt numb and wanted to get out ASAP so I can hear (again) what was going on with Morgan. I went as quick as I could, which was painfully slow considering I just had a baby and everything hurt (not to mention crying uncontrollably – it doesn’t help the body feel so great after childbirth).

    I put my hair up, threw on some makeup and the doctor came in. She explained the situation to Jeff and said they didn’t have any answers yet but the Cardiologist in Charlotte is going to be reviewing the echocardiogram soon and should be able to interpret the results. We will know when they know.

    “Do you want to see her?” YES! Of course! We jumped at the chance…

    Morgan day1Across the hall we went to the special care nursery. It was so tough to see her in the incubator with the cannula, IV and all the wires to track her vitals. But she was still beautiful. Definitely a little feisty one! The nurse explained what all the numbers on the screen meant. She indicated that they measured her oxygen levels in two places on her body and, while they were supposed to be the same, they were several points different. We had no idea what that meant or how to interpret it – all we knew is that her little body was struggling and we just wanted to hold her.

     

    We tried to remain positive. They are just taking precautions. She is fine. Don’t worry.

     

    Noon

    Our other kids came with Grandma and Grandpa. It was a nice distraction. Brooklyn didn’t want to be there – she was a little thrown off by the hospital (I’m sure she sensed something wasn’t quite right). She tried pulling me up out of the chair “Mommy let’s blow this joint!” Is what she seemed to be trying to say…

    A little into the visit Jeff sees the doctor rush by the room. He flagged her down for an update. They had taken a chest x-ray and there seemed to be some fluid in her lungs. That “might” be due to the heart but it could very likely be due to just being born. Ok – we can deal with that…. she didn’t seem very concerned…

     

    12:45 pm

    The kids and grandparents left. I thought I might get back into bed with my Kindle. The wait was killing me. Maybe I’ll try to sleep (yeah right…).

     

    1:50 pm

    The pediatrician came in again. This time, with my nurse. “Morgan has a congenital heart defect”…

    Numb…

    “She will need to be airlifted to Levine’s Children’s Hospital Right away”…

    Nausea…

    “The helicopter will be here in about 15 minutes – why don’t you come sit with her until they leave with her”

    I have never sobbed so hard in my entire life. I’m devastated. She was so perfect. This doesn’t happen to us. We are good parents. I took my prenatal vitamins. I never drank, ate sushi, raw eggs… anything… she was healthy!

    Jeff and I sobbed together on the bed. But we knew our time was limited and had to be strong and get up. We needed to see her.

    Across the hall we went.

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    Daddy holding Morgan in the Special Care nursery before she is airlifted to Levine’s.

    “We can try to hold her and see how she tolerates it”… This, of course, made us worried. We didn’t want to create any new or additional problems for our sweet little Morgan. But daddy hadn’t held her yet! The nurse assured us that, if she started to get stressed, they would stop and re-position her in the incubator.

    Almost immediately after sitting with daddy we were surprised to see her oxygen levels improve and level out. Some may say this is coincidence…. I say it’s because she knows and loves her daddy!

     

    2:15 pm

    Jim (Grandpa) arrived. The nurse and doctor insisted we have someone drive us to Levine’s. To appease them, we asked Jim to take us. We did not know if/when we would be able to hold Morgan again, so we asked if Grandpa could hold her. It was very sweet. We took more photos.

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    Then I got to hold her. She was amazing, perfect and sweet – and it made me sad. Sad that she had to be subjected to all of this. Sad that, after attempting to keep this whole experience as natural as possible she had to be poked, prodded and “messed” with by strangers instead of cuddling up with mommy. Sad that she was born with a defect – after all of the preventions taken to ensure it wouldn’t happen. I started wondering – did I not take enough folic acid? Was that 1/2 of a light beer I had in Denmark when I was 4 weeks along cause this? It’s my fault. I grew her – I nourished her…. It’s my fault…

    Guilt…

     

    2:30 pm

    Melissa, my midwife, arrived. They had called her before informing us of the defect and requested she come to the hospital to be with me. “I’m going to release you so you can be with Morgan down in Charlotte”. Music to my ears (not that I would have stayed…!).

     

    2:45 pm

    The air medic team arrived. They wheeled in a special gurney with a portable isolette with all the pumps, oxygen, supplies, you name it on it. It was truly an impressive sight. One that I was a little overwhelmed with… this was for OUR baby. “Good afternoon ma’am – we will be responsible for taking care of little Morgan and transporting her to Levine’s this afternoon”…

    My stomach is turning…

    The next 45 minutes were spent taking stats, dishing out information to the air crew and moving wires, cables, lines and everything else to safely transport our precious cargo.

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    3:30 pm

    They wheel our little baby out of the special care unit and off to the helicopter.

    God please stay with her… here come the sobs…

    We immediately head back to the room to pack. We need to get the hell out of there. “Don’t worry about driving too fast because it will be at least an hour to two hours before they will call you back”. That didn’t matter. Our baby was in a helicopter going to a completely different hospital without us – we need to GO and GO NOW!

    Melissa checked me out and gave me the discharge “talk”. I signed the papers, they removed my IV line (that I never used in the first place….!) and grabbed a wheelchair to bring us down.

    Let me tell you – leaving the hospital without Morgan in arms was huge. It was a blow to the heart. It was a reality check that this was happening. It isn’t a dream. It’s real, real, real…

     

    4:10 pm

    We arrive at Levine’s. I just gave birth 12-1/2 hours ago so a wheelchair is necessary. Jeff drops me off at the front where they dole out the chairs and I wait. I’m in a daze – I don’t think my eyes move from the huge water fountain in front of me. I’m feeling lost and confused, like I’m having a dream (a nightmare). I’m supposed to wake up soon. I would normally wake up by now because the roller coaster of emotions I feel would be too much.

    Jeff comes down to meet me from the visitor parking (practically running) and starts pushing me toward the entrance of Levine’s. We check in at the front desk for our “parent” badge and he wheels me to the elevator. This place is big…

    We head to the Neonatal Intensive Care floor. They have a whole floor for NICU… this place is huge

    It’s pretty confusing, we aren’t sure where to go. We go the wrong way… but luckily a helpful soul shows us the way to the desk we need through a series of turns and doors. How are we going to remember this?

    Once at the desk, we have to sign a paper to say we aren’t sick (well – we are sick, but not in the way they are screening for….) and are told to wait in the family waiting room until the doctor comes to speak with us.

    Once in the waiting room we sit… and wait…. and try not to pay attention to the other families in the room. There were a lot of people. It was a bit of a surprise. A bit noisy. A lot overwhelming.

     

    4:45 pm

    The door opens – it’s a doctor. Dr. Smith. He’s a pediatric cardiologist. He is the one who looked at the echocardiogram from the other hospital. Because they needed a clearer picture of what was going on – Dr. Smith had ordered another echocardiogram to be performed as soon as Morgan arrived. “Morgan has Truncus Arteriosus”. He proceeded to try and draw a diagram of Morgan’s heart. He explained, with as much detail as possible, what this meant for Morgan. Instead of two arteries in the heart to separate oxygen rich blood from oxygen poor blood, there is only one. Additionally, there is a hole in the wall between the two chambers that allow the blood to mix – which means oxygenated blood is being pumped to the lungs.

    Then he proceeded to tell us this is one of the top 10 “rarest” heart defects.

    I think I might faint…

    “Surgery is the only option…” I can’t believe what I’m hearing. My baby is barely 12 hours old and she needs surgery…. she needs OPEN HEART SURGERY… this isn’t happening. Wake up Kristina…

    We have questions. What is the success rate? 90-95%. That’s great – but all I can think about is that 5-10%. Already Morgan defeated the odds to even have this super rare condition.

     

    5 pm

    The NICU nurse responsible for Morgan arrives. She shows us how to scrub in and takes us to the nursery. Morgan is in bed 64 in the West Nursery. 64? I can’t believe they have so many beds. We walk past the isolettes containing sick babies and I am shocked. I never knew so many babies were plagued with problems at birth. I start to think of our other three kids and how incredibly lucky we have been…

    There she is – she is laying in the little incubator. She looks so small. But to a NICU nurse she is HUGE! But to me she just looks so helpless and precious – I just want to pick her up and tell her “mommy is here and you are going to be ok!”

    She has a new tube attached to her. It’s sugar water fed into her mouth. Apparently this helps with her blood sugar and also helped console her during her testing. The nurse removed it – it’s no longer necessary. One less tube coming out of my precious baby.

    The nurse gave a run down on Morgan and her stats. She seemed to be doing well on room air, so the cannula was going to be removed.

    “Do you want to hold her?” Um – YES! Of course!! My arms have been aching for hours to hold her!

    She was pretty irritated that we were waking her up. No doubt, she was tired from all the fuss. The nurse turns and (after careful “wire” positioning) sets her in my arms and I look at her. Oh how sweet she is!! She melts my heart! My special, amazing girl is so near perfect. Even with this defect she is perfect. I’m overwhelmed with emotions. Grief, fear, sadness, anxiety, frustration, anger, but most of all love…

    I pray. I pray God will heal her. Through these people, He will heal her… He blessed us with this special little girl who is meant to do great things and we needed to ride the roller coaster with her and support her through this.

    I’m scared… so this is fear. I thought I knew what it was. But boy was I wrong…

     

2 Responsesso far.

  1. Elisabeth Bertoline says:

    Kristina, I’m sorry that you and Jeff (an the whole family) are going through so many emotions right now. Your story is beautifully written and I look forward to reading more of your journey. Your family will be in my thoughts and prayers.
    Love,
    Bertoline Family
    (Your Ventura neighbors)

  2. Katie Boeggeman says:

    Kristina and Jeff,

    What a powerful and moving account of Morgan’s journey. So many times as healthcare providers, being so focused on the details of our patients, we tend to lose sight of the emotions and struggles that the families go through outside of our doors. This is such a great reminder of the importance in what we do, not only for Morgan but for you and your entire family. I had goosebumps, I smiled and I cried reading this. I hope other heart families that are new to this process will find this blog so they might be able to understand this journey and what to expect, both the heartbreak and joy. Best to your family. It was wonderful to meet you and to have a part in Morgan’s journey!

    Katie Boeggeman (CVICU NP)