Ashleigh Paige Marie’s Story: From Mommy’s Eye’s

Finding a place to begin…the beginning I suppose. At my June Ob appointment Dr. Littlejohn suggested that I have a high tech level two ultrasound to check for any signs of NF. (A disease that runs in our family) After talking to Rob we agreed that I would get checked out in case something showed up we could talk to doctors who specialize in NF. Although Mommy had a feeling no signs of NF would show up. Little did I know how right I would be?

My dad casual said to me in late June, you and Ashton are going to Florida with us “RIGHT”. So I ok’d it with Doc and off we went. We had a great time but in the back of my mind I couldn’t shake that “scared feeling of my upcoming ultrasound”, I was getting really fearful they would find something. When we returned in late July, I had a letter in the mail…July 26th was the day. Mom said she would go with me, as daddy was out in Seattle. Pa Pa watched Monkey for me. We arrived at the hospital and got all checked in at the Maternal Fetal Clinic, everyone there was great and I thought, “How wonderful are these people”, I would love to be delivering here.” Again little did I know. We went in for the ultrasound, we already were about 95 % sure it was a girl, so the tech asked us if we wanted her to check too. Yes! Sure was a GIRL, this put mommy at some ease, as I was so nervous. The tech showed us her little fingers and toes, ears and mouth and a nice strong heartbeat…although it had always been a good strong beat. The tech never let on that anything was wrong. When she was finished she just said ok- I’ll have the doctor come in and review this too. Didn’t think anything of it, figured docs always reviews. After he was finished- he let me get cleaned up and I remember being so chilly in that room. After I was sitting up he said” Lets talk about baby…I see two things wrong with her…I could feel myself shaking but at the same time trying to think its not serious they can help her etc…. He said first she has a two vessel umbilical cord …the second I’m afraid is really serious. I had an empty feeling looking at him, just no thoughts in my head just that shaky feeling… He said she only has Three of The four pumping chambers of her heart. I think my heart stopped at that very minute. What???? I was thinking, what does that mean???? Can you even live like that…the heart can develop abnormally???? Panic was setting in and I could feel my eyes bursting with hot tears and I was gasping to breathe. The nurse handed me a box of Kleenex and I remember thinking “Oh this is so bad if she gave me the whole box.” The doctor couldn’t give us a whole bunch of answers himself. But we were to return for what was a whole bunch of ultrasounds. They wanted to watch her very carefully. They also ordered me to have weekly ob checks with Dr.LittleJohn. And then sent us home with orders to return in two weeks for a full appointment and to get info on her heart defects. Although they only at the time seen 3 of 4 chambers and not other defects. Mom and I barley made it home. It was a very long hour and a half drive. I debated in my heart whether or not I should call Rob in Seattle. Knowing there was nothing he could do from there. I decided that I needed him terribly and called him, against my better judgment. Obviously he didn’t take it well and he was flown home the very next morning, thanks to a very understanding boss.

We went to the next appointment and they decided that it was time for an amniocentesis, boy-that had me scared- needles and I don’t go well together. We didn’t have to do it BUT it could rule out Downs Syndrome or other genetic defects. It would give them more things to rule out to have to deal with when she was born.

The results thankfully were good…found nothing to be worried about and CONFIRMED that baby was defiantly going to be Ashleigh Paige Marie…WOO HOO even though mommy would of loved another boy she wanted a little girl so bad… They scheduled another amnio and ultrasound for the middle of September to check her lung maturity. We would be inducing my labor but going with normal labor. We would have a whole team of specialist’s there to take great care of her when she was born. The results were back lungs mature. The nurse let me pick the date…26, 27, 28, 29,30… Well even though we faced so much she was still my baby and I couldn’t wait to hold her. So mommy said the 26th…. The nurses set us up with the night before at Jummers and told us see you in three weeks…. No more appointments other than one last one with Littlejohn. Everything at home was ready; her name picked out, and after making daddy drive all over for the perfect car seat, it was in the car.

 
Ashleigh ~ 2 Days Old with Mommy

We went down on Monday the 25th for one last check-up at the Maternal Fetal clinic all was well. Told us to go out and enjoy the afternoon. We tried and did ok but in our minds tomorrow morning loomed over us…. we were scared but neither one of us spoke about it.

Mom and dad and Monkey came down later that evening. I didn’t sleep well but who did.

The next morning came fast, way too fast. We arrived at the hospital at 6 am. Got all checked in and was in my bed at 6:30. Mom and Rob were with me; dad stayed down and watched TV down the hall. They induced me at about 7:00-7: 15, or so. I felt nothing till about 7:45 then I needed pain meds; they worked for about 15-20 minutes or so. Rob being so supportive was sleeping in the chair…. HA HA… They gave me a second dose of meds and that didn’t help much, at about 8:30 I told mom unless you want to deliver you granddaughter you better go get a nurse…. our precious baby was coming all by herself. She was delivered at 8:57 am with no complications, other than needed some blow-by-blow oxygen she was doing well. . She weighed 5 pounds 15 ounces; she scored 8 and then a 9 on her apgars. They put her in my arms once they knew she was stable. The feeling at that moment wasn’t oh my here’s my sick baby or will she be ok…at that very moment she was my daughter no problems just my beautiful daughter. They then took her to the NICU… Around 10:00 I think we were just waiting to be able to go see her and Gramma Chris walks in. Daddy says “Gee mom your to late” Gramma says whatever and daddy says no really you missed it. Poor Gramma…couldn’t believe it. I was then moved to my room. I took a little snooze knowing they had to get her settled and safe before we could go down.

We went to see her a little while later. Ultimately we meet with Dr.Bash who gave us her official diagnosis which was Single Ventricle, av-canal, pulmonary stenosis and transposition of the great vessels, (they would also later find she had no spleen) he decided she could go home Friday and have a follow up visit with Dr. Bash on 10-02-00 and Dr.Love on 10-04-00 then back to OSF to have the Norwood Procedure done on 10-04-02…We took her home, to meet her brother, whom she delightfully will call Bubbie…

When she was one week old she had the Norwood procedure done. The surgery went well with no problems. It two days later that everything came to a crashing halt. We were called at the Family House (like Ronald McDonald type place) and told to come immediately to the hospital. We raced over, more like we RAN all the way up to the PICU… Nobody stopped us like they were supposed to and we made it to her room. They were working to revive her, I screamed and almost fainted. They then escorted us to the quiet room (not good). Her doctor came in about 25 minutes later. I will never to this day forget his words, her heart stopped and we couldn’t get it going, we had to put her on ECHMO. We think that you should call any family you want here. She is a very sick little girl we are not sure she will make it through the night. I was crying hysterically at this point. Thankfully dh was staying calm, he made the calls to his mom and dad and his mom called his sis and my dad called my brother and then my sis who was all the way in Texas. They finally let us see her, it was very hard, they left her chest open and you could see her little heart beating against the plastic… I don’t think I stopped crying at all that day, nor did I leave her side. We all slept (not really) down the hall in the quiet room. In the days to follow she just kept getting better and better with no other setbacks. She was on echmo almost three days; her chest left open for about four with a spacer, then two without. They were VERY impressed that she did so well and smoothly after such horrible beginning. All in all we were there six long weeks. She came home on an NG tube due to her oral readiness being messed up. But she was off that in two weeks. Which was good because it was up to me to change it.

She went in a six months for the Glenn and was out in a week with no complications. She returned in a week only to have to stay for a week for pleural effusions but they cleared up with a drainage tube and all went well. She is currently doing WONDERFUL, no problems, only three meds- lasix, aspirin and ammox for having no spleen. We face the Fontan in the spring and although I’m scared, I have totally faith in her doctors they already got her through so much that I know they can do it again.

Ashleigh and Pa Pa on her 1st Birthday

The one thing that I remember that always makes us remember the dedication of the doctors is when we were sitting in her room that horrible morning. The doctor they called in on emergency was not her surgeon, but another wonderful man. He got a call from security threating to tow his car, he parked in a no parking zone, (gee wonder why) he said tow it I don’t care I’m NOT leaving this little girls side for one damn minute… and hung up. They called back again and this time he was pissed, he said in a very firm mean sounding voice, TOW THE DAMN CAR-----or come and get my keys yourself and move it yourself I’m not leaving her side…and slammed down the phone. I was in awe that not for one minute would he leave (she was stable at the time). He came over and apologized to us for his bad words and sounding so mean. He said I really am a nice man; it just makes me angry they are worried about a stupid car and I’m trying to save lives here. I don’t care about my car but I do care about your daughter. I was speechless; my dad just said I’m thankful for that. About ten minutes later we see a very scared looking security guard come and get his keys. The doctor just tossed his keys to him and said you should have just towed it. Don’t ever waste my time for something like that again, BABIES LIVES FIRST, car last. I couldn’t help but thank-god that we were blessed with such a wonderful man in this emergency. One who truly cared about my daughter. I could not have asked for more than that. Thank-you for reading our story, we know it was a tough one but it helped us grow stronger as a family and taught us what was really important in life….

Ashleigh at 19 Months

Hugs,
Jenn and Ashleigh

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