Wednesday, December 31, 2008

Dec 2- 9, in the NICU

I stayed in the hospital for 2 days. I could have walked out of the hospital right after giving birth, they kept me an extra day because Annelies was going to be in the NICU for an undetermineed amount of time. I think they were observing me and how I was coping with the DS diagnosis. I did not take any pain medication the whole time in the hospital, or after leaving, short of tylenol for headache.
My room was on the second floor, the NICU is on the first floor, past the nursery. Normally, a Mom would stay on the first floor with her baby in the room or in the nursery or a combination thereof. We had this with Marco. On that floor, you run across new moms walking with their babies in a bassinet, and you hear babies crying. I think they put the Moms who have babies in the NICU away from the others, so we don't have to hear babies crying. That thought hit me kind of like a brick. In the beginning all I could see was how different things were this time.
When I was discharged, I had a difficult moment leaving without Annelies. I kept comparing how it had been with Marco, leaving with him 24 hours after he was born. You go into the hospital to give birth and you expect to leave with a baby. But putting it into perspective: By now, I knew Annelies' heart was good. I knew her kidneys and bowels were good. She was breating on her own, and eating well (by now she was getting my milk, I was able to provide 100% of her milk within 4 days). I focused on the things to be thankful for, and this carried me through that moment.
On Dec 6, I woke up and I knew at that moment if someone were to come and offer me to turn back the clock one week, to let me relive it all with a different outcome, I would turn that offer down. This was for me the moment I accepted the situation. I accepted it, but still continued to go through grieving moments of what 'could or might have been'. I learned that the stages of grief to acceptance are not clear-cut. You go through them back and forth. Like a roller coaster, you can not get off until the ride is over. But you get used to it and things sette down in your head.
I was lucky enough to have a talk with a friend who has a daughter with CP. This friend has been a horse friend for quite a while (I got to know her via her Mom, who was a colleague of mine and became my friend during my illustrious HP career in the mid-90's). Now we have something in common besides the horses. It is funny.
Something about "coincidences". I do not believe in coincidence. I believe that people and things happen to us for a reason, like the fact that KD was in a room on my floor and came to talk to me when I needed it. Or that Aaron called his friend- one particular friend out of about 10 close ones he could have called- whose wife came over to the hospital immediately. Or the fact that I have been friends with this person for years who now was able to give me great insight of how it has been for her to have a child in her life who has a disability, how she went through the diagnosis and how her life with her daughter has played out. (And she told me I turned her on to the particular horse-discipline she is now persuing). Or the friend I met at my current work who kept insisting for about 6 months that I take her to my Brothers' breeding farm, which I reluctantly did to get her the heck off my back, and then talked me into taking riding lessons 15 years after my butt last felt the back of a horse, which re-started my horse passion...All these people in life who make things possible, I am grateful for.
Annelies stayed in the NICU for a week, she was discharged at one week old on Tuesday Dec 9th. One day before we left, we were informed she would have to take something called the "car seat test". This test consisted of putting her in the car seat we had for her, hooked up to an oxygen machine for 1 1/2 hour to make sure she could breathe in the car seat. The prospect of this test scared the crap out of me. Not because we would have to buy an expensive car-bed if she did not pass, which could only be used in emergencies like Doctor's appointments (so how was I going to take Marco to day care if Aaron was at work?), but because it would make me feel scared to take home a baby who might have oxygen shortage problems. My fears were ungrounded, she passed that test with 'flying colors' (the exact words used by Chris, the nurse who gave me her results.) I was so relieved, and proud: My daughter had passed yet another test.
A few words about the NICU at Sutter Roseville: What an awesome place. It opened in September, just 2 months before we had to make use of it. What timing. The staff there is fabulous, I felt in such good hands while we were there. They were comforting and nice, and had senses of humor. They helped me so, so much those first couple of days.

Dec 2, 2008: Birthday

On December 2nd, 2008 my daughter Annelies was born. I can only describe the birth as quite easy, I have had root canals that were more uncomfortable. I went into labor around 11 the evening before. Contractions started about 15 minutes apart, and I was able to read and doze through the night. 3 am, contractions were about 10 mins apart. I was beginning to think that my girl might arrive on Dec 2. This was a good thing because I wanted her to be born on or before Dec 2, as this is the cutoff date for the local school district. Born on Dec 2, you can go to school as an 'early' student, or not, it gives you that option. My daughter has a great sense of humor because this desire of mine to have her born on that particular date is a bit ironic considering she has Down syndrome. For all I knew, she would not BE going to a 'regular' school (this was one of many thoughts going through my head in those first 24 hours after her birth, when I knew nothing about Down syndrome).
At 7 am I decided to take a shower, by now I was beginning to think about going to the hospital and possibly giving birth sometime late morning, early afternoon-ish. During the shower (maybe because I was standing up?) labor sped up quite suddenly, and I thought, "Oh wow, we should really go to the hospital soon, like, maybe NOW." I woke up my Husband, Aaron, at 7:15 and told him to take a shower asap, we needed to go. We left the house at 8:00 am. (My sister, Liselot, was with us, she stayed with Marco.) The hospital is 10 minutes away from our house (I timed this, you see, because when I was in labor with my son, I had 4 contractions on the way to the hospital and they were 2 1/2 minutes apart at the time.)
This was different: 8:00 am on a Tuesday morning: RUSH HOUR. We had to take surface streets. I was not comfortable, and contractions were coming fast. I remember looking at the clock at 8:17 (contraction had just ended) and at 8:19 (contraction started). I almost panicked, but kept telling myself that panick would increase the pain, so I stayed calm. We checked in at 8:30. We bypassed triage, because it was evident I was going to have this baby pretty much immediately. I was 8 cm dilated. I heard the nurse asking for the Doctor quite urgently. A few minutes later again: Is Dr Riley on the way? We need her NOW, this baby is coming NOW!!! At this time I was on my right side in the hospital bed, and I felt 2 things (besides the contractions):
1) Glad we made it to the hospital in time and I was in good hands.
2) This was going so fast, and so well, I felt I had to prepare/brace myself. I am not a negative kind of person at all (such as-something good is happening, this must mean something bad is right around the corner). No, this was a pure gut feeling that I had to mentally prepare myself.  I actually felt a sense of dread coming over me slowly.  Dr Riley arrived in the nick of time, I was able to push out Annelies at 8:51 am. 21 minutes after arriving at the hospital. (So, I lost approximately 15 lbs - baby 8 lbs + amnio fluid + placenta comes to about that much- in 21 minutes! Take that, Biggest Loser!!
The moment I held Annelies, I knew she had Ds. So did Aaron (we talked about it later- we did not talk much that day because we were each trying to deal with the shock individually). Even though I knew, I tried to deny it to myself. The conflicting feelings that ensued are hard to describe, but after talking to several mothers who went through the same thing, they were all 'normal' feelings. Initially, I did not feel that elation I had felt when Marco was born. I did not feel that immediate bond I felt then. The baby I held in my arms scared the crap out of me. I did not recognize her. The feelings I had scared me even more.
Annelies had great Apgar scores (8 and 9). They observed a heart murmur (they thought) and did observe the Ds features, so they took her to the NICU.
Suddenly I was alone in the delivery room. Dr Riley had moved on to the patients she had to see that day, and the nurses had all left with Annelies, and they had taken Aaron with them. I called my Mom and told her Annelies was here. My Mom told me she would come as soon as possible. I did not say anything about the Ds suspicion (I was still trying to stay in denial). I called Liselot, who said something like: She is here already? You just left the house an hour ago! She then called our Dad & the rest of the family in the Netherlands (NL from here on out).
Then I called my Mom again and asked her if she was on the way. She said she was, and I told her something was probably wrong with Annelies. I told her they were looking at her heart, and that she probably has Ds. I was still alone in that room.  I have no idea why in the world they left me all alone. 
Mom and Leif arrived 30 minutes later. I was just being taken to my recovery room upstairs. I asked to see Annelies, and they took me to her (They offered me a wheel chair, but I walked. Mind you, I had just given birth, so this was kind of unexpected). She was at that time in the nursery, but they were about to take her to NICU. In the nursery, a very kind nurse came and spoke to us and told us that they had observed some features in Annelies that were in line with DS. She had creases on her hands and there was a space larger than normal between her big toe and little toes. Her muscle tone was low-ish.
Annelies was wheeled to the NICU, where a Doctor approached me and told me the same thing the nurse just had. I asked him if it was possible if baby's could have some of these DS features, but that the test could come back clean. The look in his eyes told me everything I needed to know, that this was not a hope I should cling onto.
I quickly learned that Ds is not the worst diagnosis one can receive; it is the medical issues that can come along with it that are scary. 40-45 % of kids with Ds have congenital heart defects, a large % can have kidney failure or other bowel issues. Many have feeding problems, some have cleft palate or other issues with their mouths. There is more, but I was pretty numb at the time because for me, at that time, the Ds suspicion was the worst. Not knowing a thing about it, it felt like a life sentence to me.
I do not remember what happened immediately after that. I believe I went back upstairs to my room to try to sleep (I had not slept in 36 hours at that point). I don't think I slept. At some point I called a friend (Aaron and I each ended up calling one friend that day). My friend was in shock and so supportive. He said he wanted to come see us that night, I said OK.
At some point in the early afternoon I asked one of the nurses to take me back to NICU to see my baby. At the NICU, the nurse asked me if I wanted to hold her, and I did. This is where the bonding started, tentatively at first. I had been sitting there for a while when CS showed up. CS is the wife of the friend Aaron had called. I have to say this about girl friends: Sometimes they know so much better than you what it is you need. C told me Annelies was perfect. (In my head, a voice kept screaming: No, no, she is NOT perfect. She has DS, can't you see??!!) We talked for hours, I do not remember what we said, but it was so, so comforting. She gave me what I needed that afternoon, I will be forever grateful to her.
Later that afternoon, back in my room, a nurse approached me and told me there was a woman in the room next to mine who has a 3 1/2 year old son with DS who really watned to talk to me, if I wanted. I was glad about this and said I would love to talk to her. (The nurse was really discreet about it, she did not want to force anything on me, and also did not really know how/if I was coping with the situation. I thought this was really cool of her). A few hours or so, KD came to my room. I think I had visitors at the time, but I wanted to talk to her (or, have her talk to me- which is what she did). She told me she knew how I felt (and I knew she did). She had felt exactly the same way. She also had that feeling that she did not recognize her son at first. She also thought her world had stopped. She told me that now, 3 1/2 years later, she would not go back & change a thing (At that time I thought- yeah, OK, that worked out well for you, but it might not work out for me or something along that line). She was so nice to talk with, we have been in touch and will catch up with each other soon (her baby is in NICU because he was born preature, so she has a lot to deal with at this time).
Later on that night some more friends came to visit us, which was comforting. I also held Annelies inside my shirt, and she tried to lift her head. What a trooper. DB kept saying: She is so cool, she is so cool! (And she IS!)
Once all visitors left and I was once again alone in my room, I started pumping (that gave me a way to begin to care for my daughter).
In the middle of the night, I went back to the NICU to hold Annelies. I looked down at her and she opened her eyes. When I looked into her eyes it hit me that I was looking into the eyes of someone who had been there before. Almost like she was telling me that things would be OK, just take her lead- let her show me and things would be OK. I will never, ever forget that moment. At that moment, I was her mother and she was my daughter.