Wednesday, January 30, 2008

The Girls

I'm enchanted and mesmerized by these two.

Tuesday, January 29, 2008

Weight Check Day

Just a quick update for the moment. E is on a weekly weight check with our pediatrician. For the history, she was 7 lb 2 oz when she left the hospital on 1/11. On 1/16, she was 7 lb 0 oz (-2 oz). Our pediatrician was concerned and wanted to start on weekly weight checks. The Dr. also said that an ounce a day was a reasonable weight gain for a baby. I thought, "Yikes," given how much work it is to get food into E.

Last week (1/22), E was 7 lb 6 oz, gaining 1 ounce per day since the last check. Today (1/29), she was 7 lb, 15 oz, gaining more than 1 ounce per day! WOOHOO! I should mention that we also started her on a 24 calorie diet after the 1/22 visit. This means that we augment the breast milk (formula and breast milk are usually 20 calories per ounce) that I pump with an additional 4 calories per ounce. So between that and E. becoming stronger and better at feeding, she's gaining more than the minimum amount. I have to say, it also shows in my arms and back as we carry her around.

This is going to be a big week with the weight check, beginning physical therapy, and having our intake meeting with Early Intervention. Big things for such a big girl!

Friday, January 25, 2008

Love is Not Blind

When we were in the NICU, we were bombarded with all sorts of people: nurses, neonatalogists, socials workers, etc. In the first days, while I was still in the hospital as well, many would come to my room and delicately dance around the fact that E had DS, not realizing that we already knew it. While I appreciated their delicacy--one probably learned because many parents receive the diagnosis at birth and may be having a difficult time with it--it also alternately amused and frustrated me (postpartum hormones are fun!). I'm not sure they expected our joy and equanimity in the face of the diagnosis.

What they didn't know was that after the 30 or so hours of devastation that we felt in August upon learning about E's Trisomy 21, we read all that we could on Down Syndrome and what to expect. After a while, the reading became too much because it tells you absolutely everything that could be wrong with your child. By mid-November/early December, we reached our limit. Enough with what could be wrong, let's find out what's right. She stopped being our DS baby and became just our daughter.

When I met with our doula (highly recommend having one if you're going to give birth), she shared with me that she has a daughter with cerebral palsy and what it was like being a mother to a special needs kid. It only confirmed what we had suspected but hadn't yet known for sure: that we get to be changed for the better and that our lives would be infinitely enriched. The doula also said that it would probably be a harder birth emotionally than physically. And it was, but not because we were sad or scared or worried. It was emotional because she was so wanted at that moment. During labor and delivery, we just wanted to see her and the tears were of joy and relief that she was finally here.

One question, though, that we had from one of the social workers keeps reverberating in my mind. She asked, "Does she look like what you thought?" My immediate answer was, "Heck no, she's blond!" which is true. I never expected a blond baby, but I had also worried when it was difficult to read the books and look at the pictures of kids, especially infants, with DS that I may not love her physical appearance. I had worried that it might take time to bond with her as I did with M. I had worried that, even though so many parents of special needs children explain how their lives are better, it would take days, weeks, or years to get there. Finally, I had worried that my greatest failure as a mother - considering terminating E's life based on the amnio results - would be compounded by not being as much E's mom from the start as I was M's.

As I wrote earlier, though, I was so happy (and T was too) when she finally arrived and we could hold her and see her. From the moment she left my body, all I wanted was for her to be back in my arms. I can say, too, that E doesn't look like I thought she would, and not just because she's blond. She's more beautiful to me than any other baby out there - other than the first one T & I made. She has some physical features of DS, but after the first few days, they just become part of her beloved face. It's not that love is blind to the DS, but rather, E is more than the DS features and focusing solely on what is DS will make us blind to what is uniquely E.

Clearly We Need to Work on Vocabulary

Me: How was school today?

M: Good.

Me: What did you do?

M: I weaked myself out.

Me: You weaked yourself out? How did you do that.

M: By playing. R & J had to help me walk to lunch.

Me: Wasn't that nice of them to help you.

Wednesday, January 23, 2008

Clearly A Miscommunication

Getting ready to leave for Monkey Jump, in front of a mirror:

M: Lipstick makes you generous

Me: [scrambling madly to think how this could be] Generous?

M: Yes. It makes you generous.

Me: [finally cluing in] You mean glamorous?

M: No. Generous.

Me: -

M: What does generous mean?

Me: It means very nice and giving. Glamorous means very pretty in a sparkly kind of way.

M: Oh. I mean glamorous.

Friday, January 18, 2008

The Week in Review

It's been a great, frustrating, tiring, week here at Chez Bubela. We're slowly adjusting and finding the rhythm of our new family dynamics. In some ways, it's easier with a second child, in other ways, ever so much more difficult.

We've been up and down this week. E's first peds appointment was good, but they're concerned about lack of weight gain, so we're doing more weigh-ins (it's like the Biggest Loser only in reverse). We're back to what feels like forced feeding. It's really not because she needs help taking all her calories to be stronger, but it's hard sometimes when she's tired and she has 1/2 a bottle left to go. The other downs are that it will take her a while to breast feed, so my relationship with George unabaited; the last is that we have to have a more sophisticated hearing test in a week or two because she had an abnormal result from the newborn screen. We think she can hear, just not well. Hopefully, the test will confirm this and we'll have options.

The ups have been that E's a really lovely addition to our family. She's just as strong willed as M and definitely has her own agenda. She's been working really hard on increasing her feedings and we continue to see signs of her personality emerge as she spends more time with us.

M is adjusting to her sister. There is a small element of frustration that we can't jump to her whims, but we tell M that it won't be forever and try to include her as much as possible. We've started to let her hold E by herself, which she loves to do. She's also been playing make-believe NICU with her dollies, which hopefully is a way to process all that's happened to us in the last couple weeks.

T & I are tired and working to find the appropriate parent/food/sleep/bathe balance. We do okay all things considering. One of the things I've noticed this time is that I know I'm not a delicate little flower despite having given birth. I remember after having M thinking that there was no way that I could do the housework and gave up totally on feeding anyone other than M (many thank heavens to T for keeping us fed). This time, I know that Mother Nature meant for women to be mobile after birth and have acted accordingly.

I have much more to write about and often write blog posts in my head before sleep. I'll try to get to the computer more frequently now that we're home. Right now, however, I have appointments to schedule for Little Peeps and we're waiting to hear about how the open heart surgery is going for my beautiful, wonderful 36 year old sister. Although it's a routine procedure to correct a heart murmur and she's healthy, still, it's open heart surgery and I'd be a liar if I said I haven't been worried. Rock star that she is, though, she's been there for us the last couple weeks. Hopefully, we can return the favor soon during her recovery. In the meanwhile, good wishes, prayers, etc. are appreciated. [Edited: Surgery went well and K in ICU recovering!]

Friday, January 11, 2008


Forgive us if we don't answer the phone or door.

Thursday, January 10, 2008

It's Back On

Woohoo! Our day nurse (lovely woman named Carol) asked for and got us to have an adlib feeding schedule. There are times when Little Peeps seems to want to take more and others when she doesn't. She just took about 70 mL at the 9:00. As long as she doesn't lose a significant amount of weight, they'll keep this adlib (on demand) feeding schedule, which is more like what we'd do at home anyway. We're giving her breast milk for as many feedings as I can keep up with, but we'll supplement with a higher calorie formula when she wants more of if the NICU has run out of breast milk. She's on the barest of monitors and Carol took out her gavage tube.

I'm off for home to sleep and Big Daddy is now on patrol. We'll try to update later.


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.

Wednesday, January 9, 2008

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.

Tuesday, January 8, 2008

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.

Sunday, January 6, 2008

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


Saturday, January 5, 2008

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.

Friday, January 4, 2008


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.