We have ‘free time’ from 8 tonight til 8 tomorrow morning, so I’m planning on hitting the pool and getting to bed before 11.  Plus, for dinner, we get prime rib tonight.  I’m very excited about that.  Hopefully, I’ll learn a lot, and get to relax too.

She also got a walking toy so she was practiving with that too.  Hopefully it helps her learn to walk.

I don’t know if anyone feels the same or whatever, but it has always bothered me. 

I think I even found something that said Fetal Alcohol Syndrome has a spectrum, but I’m not sure how reliable it is.

I am not trashing autism, just wondering about the whole DS range.

Sorry

On Thursday January 3, 2008, we packed the car and headed off to Great Falls for Lauren’s first pediatric cardiologist appointment. We had never seen a cardiologist before, or any type of specialist and didn’t know what to expect. It was a very windy day – not unusual for this part of Montana – and Lauren’s first trip out in a real city. She was very good on the ride down – we were nervous because there were no places between Havre and Great Falls to safely and sanitarily change a diaper. Plus, it was her first long car ride.

When we got there, we got in right away and the nurse went over our history and took Lauren’s blood pressure and all that. She said that Lauren looked really good and healthy. It was a few minutes before the doctor came in and examined her, he said the same thing, except that he heard a murmur in her heart that Lauren’s other doctor hadn’t heard. We were getting very nervous.

After the doctor left, we went into the ultrasound room to have her heart looked at. She was a very wiggly child. It took forever and she went through two bottles before he was finally done. He wouldn’t say anything about what he saw or didn’t see, so of course we thought the worst.

Dr. Heart (not real name obviously) went over the results and said that she had ASD – Atrial Septal Defect (http://www.americanheart.org/presenter.jhtml?identifier=11065) – which is a hole that is in the wall (septum) that divides the right and left chambers (atria). He said the hole was 5 mm – small to average-sized. It would have to be repaired eventually, but was not causing her any problems.

We were very relieved to hear that, so we didn’t worry about the surgery she would need later on. We left, happy and calm, and went off to Sam’s Club to buy a big pack of diapers and other various needs – Havre only had Wal-mart and Kmart – so we went a little crazy. And Lauren looked ridiculous in the stroller we bought her – it was WAY too big, and she was still so little.

When we got back to Lauren’s regular doctor, he said that her heart would have to be monitored yearly, but didn’t mention any other tests that she may need. Looking back, I wish I would have done more research and demanded more tests. It wasn’t until she was 6 months old that we discovered she was not tested at birth for anything, except DS, which was ordered.

Lauren Virginia was born by emergency c-section at 4:20 pm on Saturday December 8, 2007. She weighed 6 lbs. 12 oz. and was 19 inches long. She had a full head of nearly black hair and very dark eyes. Her skin was tan (with a yellowish tint) and she was the complete opposite of how I imagined her looking. Tim got to carry her up to the nursery while I was being sewn up and taken to recovery. I spent nearly 3 hours in recovery because my blood pressure was not going down, and the epidural and other various numbing meds weren’t wearing off. I didn’t see Lauren until nearly 8 that night. I was very disappointed that I missed the first few hours of my baby’s life.

I spent a little time with her, holding her, changing her into her little Christmas outfit, and during that time, I was seeing ’flashes’ of Down syndrome in her face. I didn’t mention it to anyone because I figured it was just the meds and stress and exhaustion and excitement. We gave her back to the nurses because they wanted me to rest most of the night. They wouldn’t even let me try to breastfeed her. I’m still livid about all this – it’s hard to keep typing!

Well, naturally, I couldn’t sleep, and there were some nurses standing outside my room talking. I couldn’t hear everything, just a few words, but that was enough to confirm what I had seen myself in my newborn daughter’s face. DOWN SYNDROME. I immediately broke down and went into hysterics. The whole day’s events, and all its various complications, the exhaustion and now this diagnosis just sent me over the edge. I nearly tore open my incision with my fit. But that pain was nothing compared to what I felt for my baby. It felt like they had told me she died, that she didn’t make it. I spent 9 long, miserable months preparing for and imagining my daughter’s life – school, friends, cars, boys, proms, graduation, college, marriage, children, grandchildren (yes, I went that far – I had a lot of time on my hands). And now, they just told me that she wouldn’t do any of those things. My beautiful baby girl has this HORRIBLE condition, I didn’t know what to do. The hospital was so awful at explaining and helping us, that we half-expected her not to survive the night. We didn’t know enough about DS to know about the medical issues, but all the nurses acted like she was not doing well. What really gets me was that the DOCTOR was 95% positive she didn’t have DS, and that the test was just to rule it out. It was the nurses who said she had it.

Lauren stayed in the hospital for five days – we brought her home Wednesday December 12. She slept most of the day because her jaundice was severe. That first night was tough, not because she was up a lot, but because I just sat in her rocker with her and cried all night. I couldn’t get past the fact that there was something wrong with my baby.

I had to put on a brave face the next day though, because my mom was coming from Minnesota to help us out for a week. She got in to town around 3 and we went out to eat then went home to open all the presents she brought from Minnesota for Lauren. My mom was so happy to see her and hold her. Lauren was so little, none of the newborn clothes we had fit her, so we had to buy some preemie outfits, so she didn’t look ridiculous. We took a ton of pictures that night.

Friday December 14 was a hard day. Lauren had a doctor appointment that afternoon to check her blood and her weight. At the end of the appointment, the doctor told us (Tim and I, mom was in the waiting room) that the results from her chromosome test were in already. And then he said those words, “I’m so sorry, but Lauren has Down syndrome.” And again, I was devastated because he spent a week telling us that Lauren was fine, and that the tests would be negative. We should have sued him! Or hit him at least… I walked out of the room, trying not to lose it as my mom asked how it went. I could just shake my head and walk out to the car. Tim had to tell her that her first grandchild had Down syndrome. We were all very quiet on the ride home. None of us wanted to call people and tell them. My dad usually isn’t a crier, but he did when he found out. So did just about everybody we told. It helped that I could look up exactly what DS was in some of my pregnancy books, and my Mayo Clinic book (from 1995). It wasn’t great info, but it was more than we knew before, and my dad spent most of the night back in MN on the internet, looking up all he could about DS.

There were no resources for us in Montana, and we didn’t have insurance because we made like $10 over the income limit. We decided to move to Minnesota in February, so Lauren could have a better life.

It was a very bumpy ride to get to where I am now – working on accepting and embracing her as a CHILD FIRST. She only HAS Down syndrome, it doesn’t have her. It is my dream (one of many) to help new/expectant parents come to that conclusion much faster than I did. I didn’t have help – I had books. Honestly, knowing what I know now, about DS and how Lauren is doing medically and developmentally, I wouldn’t have wasted all of that precious time crying. I can never get that back, but I can learn from that, and make so many more memories with my beautiful baby girl.