forgetting

I have so much on my mind I keep forgetting things. Not the least of which is blogging.
Claire is doing well. She will have another visit with from the home health nurse tomorrrow or Tues and will be weighed. (I can hardly wait to see how much sh'e gained. We were used to haveing a daily update in the NICU)

My mom and I got to take a field trip to Target to pick up cloth diapers a diaper pail and the much awaited bath sponge to put Claire on when we bath her. By the way, she seems to really like the water.

Well, it's just about time for the 11:00 feed I gotta run.

First Week

We have survived the first week at home as a family. It is great to have Claire home and to be able to hold her as much as we want (which is lots!) I am struggling with juggling feeding times, pumping times and cuddling times. I am looking forward to her becoming competent at breastfeeding so I can spend less time pumping milk.

As I was burping Claire about an hour ago she was up on my shoulder and started sucking on my arm. I laughed and laughed. I guess she didn't want to take a break for burping.

We finally took some pictures of her at home today. Mark is posting them to flikr right now.

My mom is coming tomorrow. Hurray. It has been a challenge to feed ourselves with the busyness of feeding and caring for Claire.

At Home

We are slowly getting used to life at home with Claire. Unfortunately our car is in the shop and needs major repairs related to the timing chain so it won't be ready till Friday. I was hoping to run to Target to get some last minute items for the baby while Mark babysits... we ordered them online with an amazon gift cert instead. I haven't driven Mark's 1987 Trooper yet... I want to wait till the passenger door get's fixed (Someone leaned on the door too hard and as the hingers were a bit weak they busted and it bent something?? and someone did a bad job jamming it back into place and lots of air comes in when you drive it.) I haven't driven an manual transmission vehicle in about 10 years so I need a refresher.

I don't want to take the baby shopping because of the potential for her to catch a cold or other infectious disease.

A home health nurse came to check up on Claire. It was rather anticlimactic. We thought she would assess our situation and give us advise or suggestions and ask if we had questions. All she did was ask us a few questions, and assess the baby. SHe will return two more times.

More helpful was a call from a nurse/case worker at Aetna (Our insurance.) I asked her a whole slew of questions and she was very helpful.

Busy

As you can imagine, we've been extremely busy now that Claire is home. Yesterday she had her first visit to the pediatrician. She is up to 5lbs 2 oz!
We gave her a bath at home for the first time yesterday and I forgot to take pictures. (Oh well.) Mark held her and I washed her. She likes the water.
We recieved a package of hand-me-down clothes, premie size, from the Torgersons yesterday and are very appreciative :)
It is so fun to get packages in the mail thanks to all of our family and friends who have blessed us with so many gifts both via mail and delivered in person.

I have every intention of sitting down and writing thankyou cards soon... we'll see.

We are very sleep deprived already. I'm hoping Claire will go to sleep pronto so I can get in some Z's before her next feeding.

Life is Good

Our church family sure does take good care of us.
A bunch of our church friends came over and cleaned our house and yard on the hottest day of the summer. We sure feel loved and blessed. Our place looks great. They helped us clean and polish Claire's new linoleum floor and assemble her crib and move the furniture into her room. It looks great. Mark is taking a nap on the twin bed we have in there and Claire is napping in her crib. I think it will take her a while to learn to sleep on a flat bed without the bumper that she was used to in the hospital. We didn't get much sleep last night because Claire was having tummy issues (She hadn't stooled all day.) Finally about 5:30 in the morning she did and got it all out of her system. Thankfully, she's been sleeping well this afternoon.
I'm going to try to catch some z's too.

Home Sweet Home

Claire is Home!!!!
We are completely content!
The Doctor told us this morning that he was ready to discharge her. We knew as of Wednesday that it was a possibility she would come home today but it is so amazing to actually be home with her. She slept most of the way home while I sat next to her in the backseat. Mark just changed her diaper and I nursed her for a little while. Right now Mark is giving her the rest by bottle.

Almost home

Claire went to on demand feeding today and took nearly twice as much milk as usual. Her weight was up 25 grams today and 75 grams yesterday. She now weighs 4 and a half pounds. This evening she will be moved to a step-down nursery. It looks like she may be coming home this weekend. The doctor just wants to monitor her for a few days with her new feeding schedule and being out in an open air crib. The doctor just wants to observe her for a few more days to make sure she is stable with these changes before he discharges her.

Hot Baby

Claire is staying warm in her new bed. They took her feeding tube out during the night so it looks like they are planning on giving her all her feeds by bottle through the night. I am thrilled!
She did a great job breastfeeding with a nipple shield this afternoon which means she snuck a few extra calories since she also got her full bottle afterwards.
Claire was listening to her new Mozart CD when I left.

We had the linoleum installed in Claire's room today and it looks great.

HURRAY

The nurse moved Claire out of her isolette into a bassinet this evening! I hope she is able to stay warm enough. She has three or four blankets on her and was ok for an hour or so at a time between Kangaroo care times this afternoon. This is the third attempt at weaning her from the warmth of the isolette.

She has only been gaining 5-10 grams a day the past few days. Her related benchmark for going home is being able to take all of her food by mouth and gain 15-20 grams per day.

Pity

Well, It has been seven weeks since Claire was born. It is fifteen days till her "Due Date." She started out at 2 pounds 12 oz, lost some weight the first week and now is at 4 lbs 5 oz. We've been through a lot...
I find myself yearning just to carry her with me. I don't want to have to drive across town to be with her and I don't want to have to sit in a rocker by her bedside with wires dangling from her when I hold her. It pains me to have to choose between being with my baby or going for a walk, being with my baby or eating my lunch, being with my baby or talking on my cell phone. I want to be with Claire but if I spend too many hours sitting in the rocker in the NICU I get cold and wheezy and hungry and cranky and stiff. I hate the self-pity I feel when I think about this situation. Most of the time I just accept it and am fine with it. Most of the time I feel okay emotionally speaking, but every now and then I feel the need for a little rant.

Claire slept really well today all day with the exception of feeding times and then she was alert from about 5-6:30 when Mark was there. The early evening is frequently her alert time and we really enjoy interacting with her.

I read Tuesdays With Morrie over the last few days. I highly recommend it. Morrie was a college professor dying of ALS who was quite a remarkable person who had a lasting infuence on a former student. The book reminded me that relationships are the most important part of life and that loving others is supreme. I've been so wrapped up in our own troubles that I haven't done much to reach out to others. Morrie was a good listener and communicator even through his most difficult struggles, and I want to emulate him.

Family Fun

Mark and I enjoyed our time with Claire together today. It was nice to have family time. We talked to the doctor this morning and he is pleased with her progress and thinks her prognosis is good.

We laughed at a funny diaper incident...We ended up changing her diaper four times in about 5 minutes because she kept soiling the clean diapers as soon as we put them on.

Mark entertained Claire while I was pumping milk at the bedside. She was awake and flailing her arms and legs until Mark gave her a pacifier and contained her little legs in his big hand and talked and sang to her. Then she settled right down and looked at him attentively. What a good daddy!

Bathtime

I gave Claire a bath for the first time this evening with guidance from the nurse. It was hard work holding on to the slippery little kicking baby. She seemed to like sitting in the warm water and kicking against the side of the little tub.

She was cold afterwards when I fed her even though she had two blankets wrapped around her.
She lost 10 grams from yesterday's weight since she had to skip one feeding, because she had failed to digest half her milk from the previous meal. (Thus she absorbed less calories.) Yesterday she was up 35 grams...Quite a jump.

Mark got to visit her for the 9pm feeding and she was still cold from the bath and was too tired to take the bottle. I hope this coldness doesn't set her back.

I started reading "Tuesdays with Morrie." I got about halfway through it today and found it very touching.

Good News

Claire no longer has her feeding tube as of early this morning. Hopefully this means she will be able to take all of her feeds by bottle and not have to revert back to the gavage feedings. She is up to 4 lbs 2 oz (1905 grams). She is still not able to maintain her temperature with the isolette open but it shouldn't be long now. Other good news is they have positioned Claire with support for her neck and head to help her head become more rounded... preemies tend to get an elongated head from always having pressure on either side of their head.

Mark took me to the Hollywood Bowl for my birthday tonight. It was great fun!

Impatient

I'm getting impatient. Claire still has several milestones to reach before she will be ready to come home and I am growing weary. Her weight should be around 2 kilos; now she is at 1880 grams (4.14 lbs). Also she's been having Bradycardia episodes... this is when her heart slows to half-normal for a few seconds. She'll have to be free of these episodes for a week before she comes home. They are trying to ween her from the isolette for the second time starting tonight. Hopefully she will be able to maintain her temperature. The last issue is feeding. She takes from half to two-thirds of her feeds via bottle and the rest via gavage. She will need to be able to drink all of her feeds in order to come home.

Even so, I am pleased that she has been gaining weight consitently this week, and she looks great. I was looking at all the pictures we've taken of her since she was born and I can tell she has come a long way. She looked so tiny and sickly for the first week or so and now she has cubby cheeks and has such cute expressions and such a sweet disposition. She has continued to pull on her feeding tube and she complains loudly when the nurses have to fix it. So she can get feisty when she wants to.

Hard day for Mom

When I was holding Claire for Kangaroo Care this morning she was really active and squirming and kicking. She started rooting so I let her latch on to the breast... this was 5 mins after she downed what was in her bottle...I guess that didn't meet all her sucking needs. Anyway she enjoyed suckling for a while but she kept getting fussy and moving around a lot and wouldn't settle down. It was frustrating because I couldn't figure out what she wanted. Finally after an hour of this I checked her diaper which was very wet. Duh! This was very different from our usual routine which is she eats then she snuggles right in close to me and sleeps for an hour and a half. This was a bit exhausting. I went to eat lunch with Mark who had walked to Whole foods to get us some Lasagne and salad. We came back and Claire had been pulling on her feeding tube and the tape was coming off. The nurse decised to change the tape which was very upsetting to Claire who cried and arched her back...Later Claire pulled the tube completely out and the nurse had to but it back in which was very unpleasant with more loud crying and gagging from Claire. Unfortunately the tape was barely holding the tube onto Claire's cheek when we left as the tape she used was barely wider than the tube. To top it off,when I came back from my afternoon walk Claire was crying because she was lying on top of her passifier!

Anyway, it was diffucult for me to see Claire crying so much today because usually she only cries very briefly and is easy to console.
On a happier note, I am thankful that she is vigourous and growing stronger. I think she was able to get some milk when she was suckling and she seemed very interested for a while. I am also thankful that her weight is up to 4 pounds and she is taking half of her food by bottle where last weekend she was taking only two bottles every 24 hours.

glub!

glub!,
originally uploaded by hudsonthego.

Claire continues to chug down the bottles.
Good girl! Go Claire!
Jen says that Claire seems to know when it is mealtime and then roots around at the slightest interaction.

Progress

Claire's weight went up to 4 lbs after the transfusion...Although it settled back down the next day to 3 pounds 13 oz. They started weaning her from the isolette by turning down and then off the heat and leaving the cover open. The nurse swaddled Claire and put an extra blanket over her and she was able to maintain her temperature right around 98.6. Today she might be switched to a bassinet. She has been taking 2-3 bottles per day and has been doing well. She has been digesting all 34 mls before the next feeding which she was not able to do before the transfusion. (The rest of her meals are still given gavage style through a tube to the stomach.) Her next milestone will be to take all of her milk by bottle.

Wednesday morning

Claire got a transfusion of red blood cells yesterday after her weekly blood test. Last Tuesday her red blood cell count was low but they wanted to give her a week to see if she would produce her own red blood cells... not yet.

Her growth is still slow. Her weight will probably be up today because of the transfusion. She needs to put on another couple hundred grams before she can move out of the isolette* and regulate her own temperature.

The Workers have arrived and are begriming work on Claire's room. Today they will insulate the exterior wall and begin drywalling. Mark and a friend took the plaster off this wall in preparation for this event. We also want to replace the aluminum-framed window with something more attractive (I wonder what happened to the original window?) as well as re-frame around the window which was heavily termite-eaten.

*(I just found out that "Isolette" is a brand of incubator, but is often used generically like Kleenex or Xerox.)

Mrs. B.

Mrs. B. has become my favorite nurse at the Santa Monica NICU.
I feel at ease when she is taking care of Claire. She has a good sense of humor and is caring and competant and kind to me. I can do what I want to do when she is on duty. I can hold Claire for an hour and a half or so after each feeding, pump milk at the bedside, stay as long as I want, participate in the diaper changing and temperature taking etc. I never feel like I am unwelcome or am a nuisance. She doesn't say things that lead to me feeling conflicted or confused. Hurray she is on duty again tomorrow.

To give you an idea of how considerate she is, I'll tell you about how she called us this morning to tell us they were out of our stored breast milk. She told Mark, "I know how Jen feels about breast feeding being the best for the baby," and she asked him to bring some over right away for the next feeding.

We had a lovely visit with Claire's grandparents and our Priest and his family on Sunday. I get nervous about having visitors, but I'm always glad to see people when they come.

Claire is 1700 grams and is stooling more regularly. She seems really content. After I put her down this afternoon she was alert and wide eyed, looking up at the quilt her grandma made for her and kicking and raising her feet. I spoke to her in Spanish for a while while she was alert and sang a song, "Un elefante."

case closed, plus 1 month retrospective

The doctor met with us today and said they are closing the investigation on what caused Claire's prematurity, low birth weight, and brain bleed. Some sort of obscure virul infection is the most probable cause, but it is impossible to test for everything, so after ruling out all the most common, and a number of uncommon, they've decided to give Claire a break from the pokings and proddings. She'll be spending enough time at the doctors in her first year as it is, since she is so high-risk.

It isn't very satisfying to get scattered details in lieu of conclusive answers. But at least we didn't get conclusively bad news, either. As is so common for me during this time, it is hard to know how to feel.

On the positive front, the developmental therapist met with us again today, and evaluated Claire during feeding time. She always has great hints and tips, and I admire her experience as she describes in detail how Claire is reacting.

I'll close with a link to a friend's post from last month. We've come a long way since then. Thanks for all the prayers. Keep them coming. The Fourth Huppster on Claire