Sleepy Baby!

Last night Nora slept for 5 Hours!! Unfortunately, she went to sleep at 7:30 and I didn't go to bed until 10:30, so I did not get the same 5 hours of sleep, but still! Not sure if it is the start of more long stints of sleep to come or what. She is still pretty young for that, so maybe it was just a fluke.

Yesterday Nora visited her neurologist. He examined her and said that he can still not see any physical signs of Cerebral Palsy. He said often the signs do not appear until it is time for the baby to sit and walk. Nevertheless, we'll take it as a good sign that she is looking good so far. Other than that there was no real news about her little brain. She is missing a chunk on the Right Side (part of the Frontal Lobe and part of the Parietal Lobe). It is hard for the doctor to say how this will affect her though since she is a baby and the rest of her brain will develop differently to help compensate for these missing areas. We will just have to monitor her development and find ways to help her to compensate as she grows.

The doctor also said he is pretty sure that the underdevelopment in her brain was from the chromosome disorder (although he can't explain why it only happened on the right side - most chromosome abnormalities happen on both sides of the body) and not from an in utero stroke or brain hemorrhage. For some reason this makes me feel better too because it is not another totally separate piece of bad luck.

8.4 lbs!

Nora went to the orthopaedic surgeon today to take a look at her right foot. It is turned in slightly. Since she was born, we have periodically been stretching it and it seems to be straightening out. The doctor showed us how to stretch it properly (a little more aggressively than we were doing before) and told us to do 10 repititions, 10 times a day for the next 3 months. She will continue seeing thr doctor periodically until she is walking. I didn't mind this Dr visit because at least there is something we can DO instead of just hearing a bunch of bad news and uncertainties.



Here are some recent photos. Nora is over 8 lbs - about 1/2 the size of Buster:

Help Wanted!

I am starting to think about my return to work. Although it is 3 months away (I am lucky to have so much leave time), I need to find appropriate child care for Nora. Before we knew about Nora's problems, we had planned on taking her to a nearby daycare center. Although it is very nice, it just doesn't seem appropriate for Nora just yet - at least until we have a better idea of the extent of extra help she will need. The first year is critical for brain development and we want to do everything we can to help her brain to compensate for her neurological problems, which I think means finding her one-on-one child care. We are interested in hiring a nanny to come to our home. If anyone knows of anyone in Kalamazoo who may be interested in this work (particularly someone with an interest in working with special needs kids), please let me know. I think often the best way to find this type of help is through our network of family and friends. Any recommendations would be appreciated!

Bed time for Nora!

Nora prefers to fall asleep on her mom or dad instead of in her crib. That is fine with us. I have got in some really good naps with Nora stuck on me like this.



This week has been quiet. I have spent most of my days feeding and sleeping with Nora, watching CNN, reading baby books, and messing with out wireless internet setup. Turns out it isn't as easy as I had hoped to tackle those big household projects - just as everyone has told me. Oh well, they will get done someday.

Afternoon nap

Nora taking her afternoon nap on the couch.



I am enjoying the time home with Nora so far. Not bored at all. There are many projects around this place I have been meaning to do and am happy to have the chance to do them. Although, it is a bit tricky to fit them into the 2-4 hour windows of Nora's naps.



Major projects I hope to accomplish over the next few days:

1. Get our wireless network set up at home. Of course, I have started tinkering with it and have made a mess of it so far. Andy's computer won't get on the internet and the desktop gave me some blue screen about BIOS and memory and drivers that I don't know what to do about. Every time I get into one of these projects I tend to wish I had never started, but I have to at least get everything back working how it was before.

2. Schedule carpet cleaning.

3. Send out birth announcements. (Tried to print the addresses on the envelopes a few days ago but ended up with 30 envelopes addressed to Andy's parents. I don't know why the microsoft people have to make envelopes and labels so difficult.)

4. Clean and organize my desk. My files are overloaded. It is getting on tax time anyway so this is good timing.

5. Organize my new bedroom closet. Andy's clothes are neatly put away but mine are still in disarray. Biggest problem is 90% of my wardrobe doesn't fit and is office wear. I have to lose 20 lbs still to get to my pre-preg size (maybe I should add that to the list!). I don't really know how to organize all of the clothes since I am only wearing about 5 things.



Now that I have publicly declared my intention to do these things, maybe I will have the motivation to complete them!

Another week down

Another week down and it feels like things are starting to stabilize a bit.

Andy took his first trip out of town this week since Nora has been born. My parents came to visit and help out while he was gone, so I really didn't have to try taking care of Nora all alone quite yet. I will try it alone on his next trip to get used to it. She really isn't difficult to take care of, it is just nice to have a break once in a while.

Nora went back to the pediatrician on Wednesday. She weighed 6 lb 13 oz. We got good news at her appointment. Her kidney ultrasound came back normal. Her left kidney is totally normal and her right kidney is only slightly larger than normal, but the doctor said it is not of concern. That is good news. One less thing to worry about!

I have spent this week increasing the number of times per day Nora breastfeeds and decreasing the number of bottles. I am not anti-bottle by any means, but it saves time because otherwise I just have to feed her a bottle and then pump anyway. I continue to pump periodically when Andy or my parents feed Nora. I can now understand why many people discontinue breastfeeding before the 1 year recommendation. It is rather uncomfortable, messy and sort of boring. It seems to take longer for her to feed than a bottle as well. Nevertheless, it is good for Nora and I, so I will continue. This is of course a controversial topic. I am definitely somewhere in the middle of the breastfeeding camps. Not ready to be President-of-La-Leche-League but also not Clipping-Similac-Coupons. I guess I haven't seen breastfeeding as much of a spiritual or bonding experience as some, but recognize the practical and nutritive benefits of it that make it worthwhile.

While formula companies made out big in the 50s, 60s & 70s by offering women an escape from breastfeeding; the pump companies are making out big now that breastfeeding is "in." It would have been wise to invest in Medela (breast pump manufacturer) stock in about 1990 I think. If you are interested more in breastfeeding, read this interesting article on the history of breastfeeding and the business of breastfeeding from the New Yorker just this week . http://www.newyorker.com/reporting/2009/01/19/090119fa_fact_lepore?currentPage=1 (By the way, I don't read the New Yorker every day, but I just happened to hear this author talking on Talk of the Nation this week and looked it up.)

Here is a picture of Nora in her swing Aunt Laura and Uncle Ted got her. She is taking an evening snooze.

First Week Home

Nora's first week home has been relaxing for both her and Andy and I. Here is Nora taking a nap with me on the couch.

Nora with the hiccups during "tummy time:"

She has been sleeping well. Usually for 3-4 hours at a time, sometimes 5. During the night she wakes, eats and goes back to sleep easily. She normally has about 2 wakeful times during the day, sometimes for quite a while. Maureen loaned me a book on baby sleep this weekend that says newborns shouldn't be awake for more than about 2 hours at a time though, so we will have to give that a try.

Last week Nora had visitors. Both sets of grandparents came to visit. This weekend many of our friends came to visit (Matt & Chrissy, Maureen & Aaron, Heather & Randy, Ted & Laura and Scott). The men all went ice fishing for that day while the girls hung out at home and ate, played with Nora and read gossip magazines. We had a fish fry for dinner. Good thing Ted had a bunch of fish at home to share with us since the men were not successful in their ice fishing expedition.

Nora has received many presents from our friends and family that we are very grateful for. She is definitely well dressed baby with many toys to play with! Here is a picture of her with her new bear from Aunt Sue.

Andy's birthday was Saturday. I gave him a back hair trimmer (a "Mangroomer") and Nora gave him a photo album filled with cute pictures of her. (You can see it too at http://www.mypublisher.com/bookshelf/index.php?assoc=bksdown You will need: Book ID:S2134580 Password:2520425)

Nora has taken two ventures out of the house so far. She visited her pediatrician on Wednesday morning. She weighed 6 lbs 3 oz! On Sunday night she weighed 5 lbs 13 oz. She is gaining weight fast and eating a lot every day. We are gradually transitioning her to more breastfeeding from bottles so I don't have to pump so much milk. I don't mind a few bottles each day though. It gives others a chance to feed her and gives me a break. I have literally about 100 4 oz bottles of frozen breastmilk in my freezer. When she was in the NICU and not eating that much I just kept pumping and storing. We are lucky that she seems to be accepting of both methods of eating.

This morning Nora and I went to get her a Renal Ultrasound to take a look at her kidneys. They are a little larger than usual, but seem to be functioning fine so far. She did well. It is difficult to catpure the pictures on a squirming baby covered with slippery jelly! I fed her with a bottle while the technician got the pictures and that seemed to keep her pretty still. She fell asleep right when I put her back in her car seat and has been asleep ever since (still in her car seat. I figured why disturb her?)

Buster is getting along well with the new addition to the house. He still howls when he wants attention, but he has always done that. (I am hoping to catch some episodes of The Dog Whisperer now that I am home during the day to find a solution to that problem). He did pee in her bedroom. I was afraid that would happen. Andy changed the bag in the diaper bin and set it on the floor. Buster promptly piddled right in the spot the bag had been. I guess we will just have to be more careful and watch him because I don't think we are going to break that habit either. He doesn't pee in the house often, but he will mark his territory if he smells another animal (or baby!).

Happy Birthday Andy!

Andy is 33 years old today (and Nora is 1 month). He is celebrating by spending the day ice fishing with his friends then having a fish fry back home (assuming they are successful - otherwise I guess we will have pizza with tartar sauce and french fries!).



Our first week home with Nora has gone really well. She is a good baby and we have enjoyed relaxing in our cozy house with her.



Well, I just finished feeding her and am going to put her back to sleep, so I will update more later.

We are home!

Got home around lunch time today. One of the first things I did was that "take a nap when the baby takes a nap" advice that I haven't been able to take advantage of yet.

Things are great here so far.

I may take a couple days off from the blog now that I am home and have plenty of other things to do with my time.

Thanks to everyone for your comments, emails, phone cards, mail and gifts. Nora and we are lucky to have such supportive family and friends!

Nora home in her crib:

5 lbs 13 oz - Homecoming

This is Day 26 of Nora's hospital stay. (Combine that with the 3 days I was here before she was born and we have been here every day for 29 days straight). That is about 3,000 miles driven between the two of us and about $350 spent in the "Terrace Cafe."



According to the nurse I saw this morning, she is going home today. They downloaded the data from her monitor and it was all normal. That is good, so now she can go home - without a monitor. I will believe it once I am in the car. For now I am just waiting. I am not sure for what, but I guess after 29 days I am have been trained to just sit and wait until someone comes to tell me what is next. (Nora is also waiting patiently, in her car seat.)



The baby next door is screaming his head off. He is a full term baby. There aren't many of them around here, but you can tell the ones that are because they are LOUD. I guess Nora will get like that in a couple weeks. Full term babies don't end up here often. Mostly for meconium ingestion and "cord accidents.". Not sure what the neighbor is here for, but I know he is on antibiotics for 7 days and is leaving tomorrow. His name is Navene. His dad picked it out after the drummer from a "deathcore" band called Animosity. I need to go home...

Nora is ready to go home (and so am I)

Nora tested out her car seat yesterday. She had to sit in the seat for an hour while hooked up to her apnea monitor to make sure she could still breath in the seat. She passed the test. She got board and fell asleep midway through.

I was all set to come home today. Andy and I came up to the hospital together, I brought some pj's with feet for her to wear home and took home most of her stuff from the hospital. Unfortunately, she is not coming home until tomorrow though. I am pretty annoyed that she is not coming home today. She is eating great, but this morning before we got here her apnea monitor went off twice. This monitors her breathing. If she doesn't take a breath for 30 seconds, it goes off. The nurse is supposed to come in and observe if the baby is ok without intervening for a moment. If the baby is fine, then the nurse makes a note that the baby self-corrected for the apnea and moves on. The first nurse came in and touched Nora to see if she was okay. Therefore, they say that the nurse intervened and they can't conclude that she self-corrected. The second nurse flipped the light on. Same thing. Since the nurse stimulated her with light they can't conclude. Why the nurses don't know how to do their job, I don't know. Later, another nurse moved her leads that are stuck on her abdomen and she hasn't had an alarm since. So now, Dr. Moline says we have to stay another day - just in case. The stupid monitor hasn't gone off for weeks and now 2 alarms that were mishandled by the nurses results in another day in this hell hole. He says she will go home tomorrow, but if she has more alarms we will bring the monitor home with us.

I don't understand why we can't just go home today with the monitor. Personally, I think it is because it is Sunday. There is only 1 doctor here and he has 48 patients to see. And, as I have come to learn in the 26 days we have been here, the doctors' time is infinitely more valuable than mine - at least in their mind. It is way easier for him to say, "Keep her until tomorrow" and not deal with it.

It seems to me that they would want the room vacated though. The NICU is at max capacity. If a baby is born in SW MI tonight who needs the NICU they will have to be taken by ambulance to Grand Rapids or Ann Arbor.

Maybe I should tell them that she doesn't have health insurance anymore. That may get them to release her a little more quickly! I so annoyed right now and just want to get out of here!!!!!!!!!

Eating is paying off

Nora weighs 5 lbs 10 oz now. She has gained over a pound since she was born. I think you can start to see it now. Her cheeks are starting to get chubby and her arms and legs look more filled out than before.



If she continues her progress, we will be home tomorrow or Monday. Woo hoo!

Cautiously Optimistic

Nora ripped through 8 feedings yesterday. Over 80% by mouth. So, today she is on her own. She will eat as much as she wants when she wants it. As long as her 24 hour total meets the doctor's minimum, she passes. Once she does this for 48 hours - she is home.



Usually the parents have to come in the night before the baby is discharged for a practice night in a little room off the NICU. I am not sure we will have to do this though. Since we have not had any domestic disputes in the NICU, we may have secretly passed this test without knowing. I have overheard many of these while sitting here. Yesterday, I heard a mom totally cussing out the Dad on her cell phone since he did not make it to the hospital for the baby's hernia surgery. I think the RNs hear all this too and they make notes about it in the baby's chart. The neighbor in the next room went home yesterday and there was a lot of discussion about how to get the baby home (with a portable ventilator, feeding tube and apnea monitor) on the bus. I think that finally the parents found or borrowed a car. We are lucky that we do not have these sorts of stresses and both have jobs that are flexible and provide a comfortable life for Nora.

Happy New Year!

Andy and I celebrated the New Year with Nora. We had dinner at home, then went to the hospital for her midnight feeding. I cautiously think that Nora has turned the corner and is now really catching on to eating. She has done really well the last two days and is eating 80-90% of her food by mouth. If she continues, we could be home early next week! I don't want to jinx it though, so we will be patient with whatever pace she needs.

2008 was a rough year for us overall, but we made it and I am glad it is over. I hope that 2009 brings a little less stress. Already, 2009 will be better since Nora has arrived. While I am sure that 2009 will still bring loads of uncertainty and worry, we at least have the happy times we are having with Nora to offset the more difficult times.