Setback

E was gavaged over night. It's disappointing and hard not to blame the night nurse for not taking all the time to get the feeding in, but the reality is that E's been doing a yeo(wo)man's job over the last 48 hours. She's doubled her volume of intake and her ability to be a productive eater. T & I too have been learning and, as she hasn't finished a feeding with me (I usually have to resort to the nurses), we all still have some work to do. Evenso, it's hard not to be disappointed that the clock gets restarted as of the 6:00 AM feeding. Although, on a positive note, E & I were able to complete the entire feeding together! Yay for progress.

In other observations, I love the luminescence of baby's skin. I still look at the clarity and beauty of M's skin and think it's one of the most beautiful things I've ever seen. E's skin is also beginning to take on the same inner glow. In fact, the other day I was holding her and thought, "how did you get glitter on you?" when I realized that it was the light reflecting off the very fine, blond, hair that she has. It was glinting in the overhead lights and gave her a sparkly glow. I wish I could capture it on film, but you'll just all have to see it when you meet her.

The Big Girl Bed

E was moved to a big girl bed (aka a regular nursery bassinet) today. After her IV came out yesterday, she was dressed in a undershirt and the requisite hat and swaddled. Her movement to the bassinet makes her seem really out of place in the NICU, but we're grateful because it's even more easy access to her. She's also up to 7lb 4 oz! T took this picture through the side of the bassinet. There are more pictures from yesterday at the end of the post .

In feeding news, E has been taking all her feeds (50 mL) by mouth today. T & I are wiped. I'm battling sinus crap and have limited the amount of time in the NICU in case it's a cold. T came home early (for us) after spending about 8 hours in the NICU. We're trusting the nurses will help us by continuing the bottle feeding which takes longer versus the gavage. We're cautiously optimistic because we've been told she has to go 48 hours with no gavage before they'll assess to discharge her. Her last gavage was midnight last night, so we could be within an day or two of coming home.

For us (all of us), each feeding then becomes a huge challenge. E's learning curve on improved eating techniques and our learning curve to support her in eating makes each feeding seem really critical. We're a little tense with anticipation, but are trying to be realistic by putting the whole process into perspective. That doesn't mean, however, that we don't breathe a sigh of relief after a successful feeding report and to feel like we're closer to the end. Whatever happens, though, we're committed to bringing E home when she's ready and able.

M is handling things as well as she can. T and I had an opportunity to put her to bed together tonight which did a lot to restore ourselves. Amazing how comforting these little routines are. One of the hardest aspects of this week has been how much I miss the rhythm of our family life and how big of a hole in our family there is without her home. This despite the fact she's not been home yet. The other hard part is that, before when M was in the NICU, T & I were able to spend the time together. Now, gestures of support come in the form of phone calls to exchange news, turkey sammies prepared, a load of laundry done, and the recognition that fatigue is not the time to address perceived shortcomings. In recovery programs, there's the acronym of HALT to avoid. One shouldn't get too hungry, angry, lonely or tired because then bad choices are made. While neither T nor I are in recovery, it's good advice and while I try to eat as much as I'm supposed to in order to support the nursing and sleeping as much as possible; I am a little lonely passing T in the night and at the hospital and can only hope for our family to be complete soon.

Turning the Corner

Today has been a very good day. Sorry for not posting yesterday, but sleep is becoming a huge priority for me while T. picks up the slack everywhere else. Let's recap. E can come home as soon as she eats. All other health issues (jaundice, high red blood cell count, etc.) were resolved over the weekend although they wiped her limited resources out.

The neonatologist put her on a feeding plan to alternate a bottle feed/gavage and straight gavage feeding while increasing the amount of the feeding by 5 mL every 3 meals until she reached a minimum of 50 mL. We started at 15 mL. Meanwhile, they were supplementing through an IV in her head which sounds horrible, but is actually the easiest place to put one on a newborn.

Today, E made HUGE strides taking the bottle. At the 6 PM feed, she took 50 mL! This morning, she was taking about 25 mL, so huge efforts and jump up the learning curve. T & I both worked with the physical/occupational therapist to learn how best to support E's feeding and she (and other lactation consultants) both reassured me that she'll eventually get nursing as well. I continue to try nursing, but as long as she's eating the prescribed amount by bottle, we'll get to take her home. Then, I'll plan to work on nursing more seriously.

We're cautiously optimistic for getting everyone home this weekend. It was exciting today when they took her IV out because she's getting enough food. They actually put clothes on her which makes it seem closer to the end.

The other big fun for the day was M going to school with pictures. All the teachers and her friends wanted to see the pictures she brought which I know makes it more exciting for her.

Well, I have a hot date with a mechanical pump I'm thinking of naming George because he says he's my boyfriend when he begins the show. Hopefully, I'll have pictures to post tomorrow and I have tons more to say about our NICU experience, the gory birth story, and how much of a strong will E already seems to have.

I've Got Nothing to Report

Really. Day 4 was much a repeat of Day 3 with improvements in the scheduling of T and I; a modified eating plan and other treatment changes. The only thing left for E to do before leaving the NICU is to learn to eat which will take patience on our part. If I wasn't headed off to bed, I'd tell you all about the ways E is showing her very willful personality already. Meanwhile, enjoy this exchange that I had with M while driving home from the hospital:

"Is Uncle Jack a farmer?"
"Yes"
"Does he have a farmer's hat?"
"I don't think so."
"What about a farmer's shirt and clothes?"
"I think he does."
"Ok."

************
Goodnight.

Day 3

Day 3 has shown progress. E is off all bilirubin lights, which means that we can hold her anytime. She also loses the stylish protective eyewear she's been wearing so we can actually see her eyes (which have very fair brows and long curly lashes). The neonatalogist who came around this morning has put her on a 3-hour feeding plan where we'll continue to try and feed her with a bottle, but they will use gavage (e.g., feeding tube) to increase the levels of breast milk/formula that she's receiving.

She's pretty sleepy still, both from the trip (as T says) and from the jaundice/red blood cell things. We're hoping to see a more alert E in 48 hours or so, but it will take some time for her to recover from the complications. If she does well, we're hoping to bring her home next weekend, although no one here is holding our breaths.

M. came up to the NICU today (Saturday) to see E. Once again, she was very tender and curious. Unfortunately, she wasn't able to hold her, but she was fascinated by all the wires and such. T. and I really debated having her up, but she did great and we'll continue to help M. with questions and such.

Our days and nights are spent divided between the NICU and home. T and I are switching long days at the NICU versus long days spent with M. Both are exhausting but rewarding.

Blondie

E joined us Tuesday (1/2/08) at 4:25 p.m. 6 lb 12 oz, 20 1/2 inches.

She's a beautiful blond hair, blue eyed girl, something I'd never dreamed of having. If I hadn't seen her come out of me (TMI, I know), I would never have thought I'd have a blond hair baby. I've since learned that blondness runs on T's side of the family and that his dad (Opa) was a towhead in his youth. (As an aside, I would mention that lighthearted comments about postmen or other innuendos about paternity aren't really appreciated by an hours old postpartum mama who takes her marriage seriously, but this is about E. We'll address that on another day).

She's absolutely wonderful, although we've had a tough few days. She remains at the hospital in the NICU for various complications (jaundice, high red blood cell count) most of which have been successfully treated. We only have to teach her to eat from a bottle (nursing will come soon, I hope) so that she can come home. I was able to come home tonight while T. went back to the hospital until bedtime. We'll continue to trade-off time between the girls, home and the hospital until we're all home. Hopefully, this will only take a few days. If you know of any special deities for nipple feeding to whom we can offer prayers, please let us know. [smile]

We were able to have M come up an meet her sister on Wednesday evening. T said she was a foot off the ground when he picked her up to come to the hospital and two feet off the ground when he took her home. She was really devastated when she couldn't come up last (Thursday) night because of NICU restrictions, but we're hoping to take her over the weekend. T and I will be alternating our time at home with M. and the hospital with E. I can't tell you how desperately we're looking forward to having everyone home. It's a fairly horrible sensation of emptiness to be home without E., but also being at the hospital without M. We know, however, that to get E. home and to stay, she needs this time in the NICU. Sucky as that may be, we are still really lucky. One of her nurses told us this morning when we went to see her that she and the other nurses spent time holding her because they rarely get the "fluffy ones." Compared to many of the other babies in the NICU, E is a giant and has very little wrong with her. Put into perspective, T and I will take these challenges, thank you very much. Of course, I'd probably be more believable if I didn't keep crying from both the joy and the heartache.

Thinking about the Miracle

As one may imagine, we've had a range of responses to E's Down Syndrome. Heck, T & I have have range of responses. As mentioned in our Family FAQ (see sidebar), the hardest part of telling people is that we never know what type of response we'll receive. By far and large, responses have been amazingly supportive, encouraging, and reassuring. Occasionally, though, we've encountered responses that we hope come from a lack of understanding or knowledge. As neither of our families have ever had a family member (to our knowledge) with DS or other birth defect, there hasn't been an opportunity to know the full range of abilities that these kids have.

The responses that are the hardest, are those when the respondent hopes for a miracle or for prayers that the DS will not be part of our lives. My visceral, mama bear response is indignation to the perceived insensitivity that chromosomal abnormalities are fixable. It's also the equivalent of the "I-can-say-what-I-want-about-my-family-member-but-woe-to outsiders-who-attack-them" response. Appreciating the prayers of those who are praying for us to have strength and grace to meet any demands, I try for understanding and recognize that the intent is for us, their loved ones, to be spared any heartache and distress. There's also a part of that tries for understanding because the responses are not anything that I haven't thought myself. E's DS is not something that we would have picked, and in my ignorance, I intellectually know that our lives will still be rich, but there's still fear of the unknown.

I've been thinking about this conflicting or dichotomy of my responses. It struck me the other day, that perhaps when people hope for the miracle that E is "fixed," that they're missing the point. Perhaps the true miracle is that T & I will be changed because of this experience. This, I think is what the real miracle will be.

Disadvantages of the Modern Dad

Me: "Oh look, Cinderella Barbie is doing a headstand."

Him: "Yes, at the end of our Barbie playing, we had a little headstand contest."

Me: "Very nice."

Him: "Frankly, after so much time, I'm at a loss about what to do with Barbie."

Now We Wait

As we begin to approach E’s B-Day, some random thoughts keep popping into my head:

1. Things I will miss about pregnancy:

· Knowing that E is as safe as she’ll ever be

· Not having to share her with anyone (I’m a selfish mama J)

· This is probably the last time I’ll ever have a life inside me again

2. Things I will not miss about pregnancy:

· Questions in the last weeks about any news – if you call and ask if there’s a baby yet, be prepared for scathing response

· Stupid comments about the tax break if E comes before the end of the year (Note: 1) the IRS prorates the tax rates. This is the government people, they’re not stupid. They know how to get their money; 2) Like the tax break is the sole reason to have kids. Riiiggght!)

· Assumption that I want this over with sooner rather than later - I think Mother Nature has a plan and I’m in no rush to have E here before her time. I take some comfort in knowing that there is an end game, I just don’t know when it will begin.

· The heartburn, I will not miss that

· Or the nausea, that too will not be missed

3. This pregnancy has been very different emotionally and physically than the first. Good difference from this one include:

· Being able to sleep in my bed! Not always comfortably, but at least able to lie flat. With Peeps, I was sleeping in a La-Z-Boy at month 5. On the flip side, I miss sleeping in the nursery. Somehow, it feels like that when I was sleeping in Peeps’ room, some magic mama powers infused the room with love and protection.

· Less weight gain which helps in moving about

· Once again blessed with a healthy pregnancy

· Better understanding of what I want from the birth experience

· A deeper appreciation for Big Daddy and all he contributes to the well-being of our family and how much he makes my life easy

Tender Family Moment

Sunday morning, snuggled in our bed

"When I get big and have my house, if there are spiders, I'm going to kill them."