Friday, June 30, 2006

Nice day

Claire was more alert today than she has been recently. Yesterday she hardly opened her eyes because she had a vision screening in the morning and her pupils were diltated and light sensitive. We had some good bonding time today during these alert times. We also had a great nurse, Mrs. B. And are in a room with only three babies. It was calm and quiet in there.

I went to the OB about my incision and she said it looks fine, so that was a relief. She cleaned it and put new tape on it.

Yesterday during my walk I bought some lullaby CD's and tiny portable speakers so we can play music for Claire. I set it up in her isolette today and she slept real soundly this afternoon while I took a walk with Beth.

Wednesday, June 28, 2006

From Jen

I went for a much needed walk this afternoon. It's the first time since the C-section that I felt like going for a walk. I did a lot of walking at UCLA Westwood because of the parking situation but found it exhausting. Today's walk in the sun was envigorating.
I am a little worried about my incision... it is a little pink and not quite closed up in the middle. I'm going to talk to my doctor tomorrow.
I've been on quite the emotional roller coaster. I cry just about everyday. I feel overwhealmed dand stressed much of the time. I feel calm and happy when I'm holding Claire close in Kangaroo Care. I think she feels calm and happy too.

no more meds

I was happy to hear that Claire is off all medications. Funny how the nurse mentioned it so off-handedly--in response to my question about when would she go off antibiotics. This was Sunday that I found out, and apparently Claire is actually scheduled to have her "central line" removed this week. This is very exciting.
Claire responded by spitting up, precision-aiming at the small opening between her blanket so that it dribbled down her neck and chest. Silly me, should have had a diaper or wipe tucked in at the ready.

The next day, we weighed her, and she is at an all-time high of about 1680 grams. I say about because we got to observe the weighing process and it is fairly in-exact. She was weighed 3 times, and there was a 75 gram variance. Anyway, the general trend is up, so it is good to know that she is gaining weight again. The slight plateau/dip was caused by her going off feeds for the MRI/MRV and transfer to Santa Monica.

I am especially excited that she is off caffeine. Her heart and lungs seems to be doing fine without it.

See our flickr photos for recently-uploaded pictures.

Saturday, June 24, 2006

Back in SM

Walking into the NICU this morning in Santa Monica was such a nice relief. It is SO much quieter than at UCLA in Westwood. We had a nice visit with Claire, and learned more preemie feeding techniques from the new nurse. Claire seems like a good learner, and by the second feeding in the afternoon, was already responding to the bottle-prompting by rooting with open mouth.

The neonatologist and nurse bombarded us with information regarding Claire's impending release. My response to this is curious: on the one hand, I am glad, but on the other, find it hard to grasp fully since it seems like we've been in the hospital forever, and the thought of bringing the baby home seems so remote and foreign.

Jen was extra nice to me after lunch and read to me on the patio until I fell asleep in the lawn-chair recliner. Then she went to pump, and called me 20 minutes later for another feeding. This time I got to hold Claire. She is such a cutie, I fall in love with her more each time I hold her. This picture is not actually of today, but it is similar. We've tapered off on the picture-taking a bit. But her facial expressions seem more and more articulate, so I need to take some more pictures. I swear she smiled at me today {melt}.

After the hospital, we went to Target and bought a car seat. I felt a bit silly doing this so "early" since Claire won't be coming home with us for another couple of weeks, but we as busy as we've been, there may never be a "convenient or easy" time to do it.

P.S. Yesterday's results from the MRV showed more detail, but nothing conclusive about the cause of the cerebral hematoma.

Friday, June 23, 2006

routine upset

Funny how I just posted about yesterday's visit being so routine and normal.
Today, we were informed that Neurology wanted to do another MRI. We worried what prompted this, since last we heard there were none scheduled. Eventually we met with the Pediatric Neurology team (as opposed to the Neonatologists which we had been working with so far) and they explained that they wanted another sort of MRI called an MRV to take a snapshot of the circulatory system to use as a baseline to help track Claire's future progress.

So Claire has been off the feeds since 9AM. They need her system to be both empty and quiet during the procedure. Thankfully, it only took a few hours. Poor girl was cold coming back up from the lab. I guess the room is cold and the machinery is loud; the whole thing is really more set up for hardy adults. The nice nurse showed me the tiny earplugs they fitted for Claire, since she knows I am fascinated with all the gadgetry.

Jen was not happy being unable to hold her baby for so long today. We met our other nurse friend in the halls, and she helped comfort us. She just happened to be subbing today down in the adult ICU.

We left the hospital late and tired, but on two good notes: 1. Jen got to hold the baby for a good long time, including suckling, and 2. we've been told that she will transfer to Santa Monica "for sure" tonight. Just in time for my return to work next week which is good since that location is within walking distance of my job.


Our friends over at Torgusborg are praying for us, and we sure do appreciate it. I remember being inspired by their birth stories a couple of years ago at and then we got to visit them last year when my company flew me up to the bay area. It is fun to follow friends with kids as they grow, even from afar.

Thursday, June 22, 2006


Today was a normal day in the NICU. Claire is feeding well. The new nurse shared a new idea about how to care for the baby. I ran an errand between one set of feedings and napped between another. They talked of moving Claire to the Santa Monica hospital again.
They talked about letting Claire out in a few weeks.
We got a quote from a subcontractor about remodeling the nursery. Life is good. I worry a bit about going back to work next week. That will be a short phase of of pseudo-normalcy before the baby comes home. Then the long haul sets in. Though as one friend said while congratulating me upon hearing of our pregnancy a few months ago: "Get ready for non-stop action!"

Wednesday, June 21, 2006


Our good friend Beth, who is The Fourth Huppster, just left us voice mail today that her sister-in-law had an emergency C-section today and their daughter was born at less than 2 pounds.
My wife was pretty upset by this, since our own experience is so similar. We stopped what we were doing and prayed for them that they would be comforted and strengthened, and that the medical staff would do a good job.
Some of our thoughts and feelings from the early days come rolling back over me. The joy of new life, but then the fear of the extreme circumstances. Some good news comes in and you feel relief, but then a little later, something bad sends you down.
I ponder what we can do to help. For now I'll just pray, since I have only met this couple once, and don't know where they are. Pray for the 3rd Huppster.

1655 grams

OK, I lied about not being excited any more about poopy diapers. You just had to see today's...or maybe it is best that you not. Suffice to say that I was astounded at the volume and believe that surely this signals a roadblock removed. She had needed a suppository yesterday, but it was only mildy effective.

Her feed volume this afternoon was 21 CCs. Claire's weight was 1655 grams this morning (about 3 pounds, 10 ounces). But the infamous diaper weighed 25 grams (the average is about 15 or 20). We had been commenting on how tight her belly felt, but now it is much more relaxed.

Tuesday, June 20, 2006


Claire may be moving back to Santa Monica tomorrow. Rumor has it there is a bed for her... We'll see about the availability of the transportation team.
Claire is gaining weight quickly. She's about 3 and a half pounds now. She is taking 18 mls of milk every 3 hours. Hurray!
Mark plans to return to work next week, so It would be great if Claire was in Santa Monica because the hospital is only 10 blocks from Mark's work.

Monday, June 19, 2006


Feeding Claire is sometimes a bit challenging. The first time she took the bottle the started chugging it down immediately and finished it all (1/4 ounce) in a few minutes. Today it took a long time to coax her to drink her half ounce of milk at noon. She kept falling asleep. It is so cute to see her suck and to hear the little chirping sounds she makes when I burp her. Mark and I take turns feeding and holding her during our visits. We cherish this time with her and are glad to be able to participate more with her care.

fun break

One reason I like visitors is that it gives me a chance to try new things. In this case, set up the badmitten set we hadn't used for years. And before that, I showed off my new mento-and-coke eruption kit.

the 3 milestones

I finally had the courage to ask the nurse yesterday when Claire could come home.

The first thing that needs to happen is Claire putting on enough weight to be able to regulate her body temperature. Currently, she is so thin that little breezes send her into a chill. This is the reason she is still in the incubator.

Next, she needs to be able to breath and maintain heartbeat for 7 days in a row without medication. She is currently on daily caffeine doses to stimulate heart and lung activity. They tried taking her off it last week, and she had several bouts of apnea (no breathing) and bradycardia (no heartbeat).

Finally, she needs to get all her nutrition from bottle feeding. She has been drinking a little bit of milk every 3 hours, but sometimes when they check her stomach, she has not digested all of it. This is somewhat related to the slow-moving-bowel issue mentioned previously, and in general shows lack of maturity in the digestive tract.

These three things will probably take several weeks. Here's hoping she can come home on her original due date: July 30.

Friday, June 16, 2006

Claire drinks first bottle


Claire had her first bottle of Mother's milk today. Who knew this would be such a big milestone? The nurse described her intestines so optimistically. This will be the first (and last) time I will be happy about a big sticky-poopy diaper. Reason to be happy is that her bowels have unplugged and she is digesting the milk well and so those related things should be smooth from here on out, pardon the expression. She continues to grow and seems to be doing better than ever.

We also had a great talk with one of the doctors today who answered all our questions. The pathology report about the placenta is full of words that I don't understand, like "thrombotic vasculopathy" which is bad , and "the amniotic epithelium shows no squamous metaplasia" which I think is good.

Several people have thanked us for updating the blog as it is more colorful than email. It is also easier for us to post once rather than trying to manage dozens of email addresses.

Thursday, June 15, 2006

This Week

This week has gone by a bit more quickly than the last two. I think this is a good sign.
We are still at UCLA Med Ctr in Westwood and feeling more comfortable with it. The plan is still to transfer Clair back to Santa Monica once they have room.

This evening they began to give Claire breastmilk again. Hurray! Hopefully her intestines will tolerate it better this time.

Claire broke the 3 pound mark yesterday and today is up to 3 lbs 2 oz. Thanks be to God.

She is due for another ultrasound in the next few days (But they usually don't do them on weekends... we'll keep you posted.)

Claire has been on antibiotics because her white blood cell count is high which usually means there is an infection. They can't find any specific infection and she doesn't behave as though she were sick. The concern is that there may be some infection at the site of the hemorrhage... so they had extended the course of antibiotics beyond the initial schedule. But they plan to stop on Saturday and see what happens.

Monday, June 12, 2006


Mark and I are really struggling to come to terms with having Claire in the hospital and all that that entails. It's been quite a rollercoaster ride with improvements in some areas and setbacks in others. I'm finding UCLA Medical Center in Westwood to be frustrating and overwhelming. She was scheduled to be moved back to Santa Monica last Wed, but they still don't have room.

Claire is doing ok. She is gaining weight and has gained back what she lost during the first few days and has surpassed her birth weight. She seems content and we have enjoyed holding her. They had begun giving her some breastmilk but then her intestines got inflamed so she is off the feeds for a couple days to allow them to return to normal. Our major concern is that she still has blood trapped in her head from a hemorrhage. As of an ultrasound from a few days ago that condition was unchanged. We are waiting/hoping/praying for the blood to be re-absorbed.

Sunday, June 11, 2006

Good News

I just spoke to our nurse and found out that Claire's ultrasound from yesterday showed no change. I was worried that it might show more damage. We are hoping that with the next ultrasound there will be some improvement.

Claire also digested all of her breakfast (1.5 cc of breastmilk.) She will be receiving 2 cc at the next feeding. Yesterday she wasn't able digest all they gave her so hopefully she will be able to adjust to the increase today.

Saturday, June 10, 2006

Another Ultrasound

I enjoyed participating in caring for Claire by taking her temperature, changing her diaper and feeding her (via tube.) The Kangaroo Care and Suckling were great too. I didn't want to leave and come back home. She had a blood transfusion today because her red blood cell count was low. Due to an increase in the measurement of her head they did an ultrasound. This could mean an increase in fluid on the brain. We won't get the results till tomorrow and I'm feeling really anxious. Mark was feeling a little under the weather today so he stayed home to rest.

Friday, June 09, 2006

great day with Mom

A good nurse means so much to parents visiting their baby in the NICU.
The previous nurse seemed too busy to do much, and when she did hand over the baby, she was wrapped in blankets. But the next nurse was great, and encouraged kangaroo skin-to-skin holding.

After a good long holding, it was time to feed (still via stomach tube), but then afterwards she suggested "non-nutritive suckling" to train the baby to associate full stomach with the breast. I almost cried with joy. We had wanted to ask about that, but it is so intimidating sometimes, so it was great that the staff suggested it!

Touch times are now 3 hours apart to cooincide with the milk feedings.

Wednesday, June 07, 2006

A good day with Dad

Claire recieved more "Kangaroo Care" from her dad today while Jen stayed home to rest. Claire gained a couple ounces after having lost some of her original birth weight. Tonight or tomorrow she will be moved back to the Santa Monica NICU. This morning's ultrasound (of Claire's brain) showed no change.

Tuesday, June 06, 2006

hooray for no face-tubes

not the momma?
not the momma?,
originally uploaded by hudsonthego.
It was quite a nice surprise to see my baby without tubes in her face this morning.
Then I changed her diaper and held her and read her a story and she fell asleep in my arms.

Monday, June 05, 2006

breathing improvements

originally uploaded by hudsonthego.
The nurse said Claire's breathing has improved so much that she is on very little assistance now, and they plan on removing the nasal canula tomorrow. It is such a joy every time another tube or wire is taken off. They are already monitoring fewer stats than shown in this picture.

Kangaroo Therapy

We are looking forward to kangaroo therapy aka a skin-to-skin contact session with Claire tomorrow. The nurse said that studies indicate it makes the baby happy and sleep better. Listening to the parent's heartbeat is reassuring, and they follow the parent's breathing pattern examples and the warmth of the skin also helps regulate their temperature.

Saturday, June 03, 2006

Claire Rebecca update 060313

my girl
Saturday morning 11:00 after inspecting the 5 AM CAT scan results and examining Claire in person, the neurology specialist informed us in very reassuring terms that Claire does not need brain surgery right now, and her brain damage is likely to heal since she is so young and leave no mental handicap.

This good news was delivered to us as Jen sat in a rocking chair holding her baby for only the second time in her busy first week in the NICU. Tears of joy.

Buoyed by this good news, followed by some lunch and snacks delivered to us by friends, we have returned home for a nap.

Thanks so much for your prayers. They mean a lot to us, and I am sure are making a difference.

(This picture is not current, since I keep forgetting my camera.)