Yes I said it, Zoë will be 1 year old in 2 months. It has been a while since we posted. Everything has gone by soooo fast. Where has the time gone. I didnt realize it had been so long since we posted an update, sorry.
Zoë has been doing really well. All of us caught a cold the entire month of November and we are all finally better. She has been off all machines for about a month and a half. She misses the wires because anytime she gets near drawstrings, wires, necklaces, she goes right too them and chews on them. She is about 13 lbs now, so she is still small. But she acts like a 9-10 months old. We have kept the same 24 calorie diet, but she now eat baby food and oatmeal cereal. She loves it. Except she does not like peas. She was making faces and was gagging herself. She has tried: Pears, oatmeal, oatmeal with applesauce, green beans, carrots (her fav). For Thanksgiving she loved the taste of pumpkin pie, she only had a tiny taste. Zoë also learned to hold her own bottle. She started doing this about 2 weeks ago. She still gets constipated once in a while but we take care of it faster now, so it doesn't last as long and she isn't as uncomfortable
She acts so mature for her size. Right now she is able to sit by herself. We actually put her in highchairs at restaurants. The big thing right now is that she started to crawl(scoot), the week of Thanksgiving. Everyday since then, she has gotten faster. She is doing the sniper crawl and she is fast. She looks so cute because she is so small. So since she is crawling, she now loves to be on her tummy. She used to hate it soo much, but once she learned how to keep her head up, she started to love it. She is still sleeping in her playpen in our room and in the morning, she flips herself to her tummy, lifts her little head and peaks over the edge to see if we are awake. If she wants to play she turns herself over and plays. If she wants us to get her, she grunts until we wake up. She is a good sleeper through the night. She goes to bed by 10p and wakes up abound 7a.
She also knows her name. When we call her by name, she turns. She definietly knows who her mama is and has started to want to go to her daddy this week. Zoë recognizes people, cartoons, the beep from the door in the house when it opens, toys, etc. She loves Hello Kitty. She already has 4 of them. One she stole from cousin Bryna.
She also got her ears pierced about 3 weeks ago. Daddy did not go because he couldn't take it. So we went one day after work and didn't tell him what we were doing. He found out when he came home from work. He got over the shock in a couple of minutes. Her top tooth also broke through this weekend, we noticed because she was grinding her teeth.
She finally made it to her first ASU game. It was the game on Halloween. She had fun seeing all the people. She also made it to the last home game. Unfortunately we lost :(, but Zoë looked cute in her different ASU outfits. Zoë was a honey bear for Halloween, she had fun trick-o-treating. She would kick and giggle as we went to the next house.
In the last 3 weeks Zoë has progressed so much. Everyday she does something new or is perfecting something she is already doing. We also went from seeing doctors every week to every 2-3 months. Zoë is such a sweet little girl. She is very sociable and a very happy baby. She cries when she is hungry, dirty or sleepy. She also has the cutest laugh. We can laugh for hours, especially while playing peek-a-boo. As I am writing, she is crawling towards me and smiling. She is just the cutest :). Im trying to teach her to say "Mama" but she just stares at me. However she is starting to wave hello/goodbye. She puts her little hand in the air and moves her fingers around.
Well only 11 days until Christmas and we will be going to the happiest place on earth to celebrate. She is going to love the lights and characters. Hope everyone has a Merry Christmas.
Sunday, December 13, 2009
Thursday, September 24, 2009
Zoë is off her oxygen!!!!!
Yes it has happened. Zoë no longer needs oxygen!!!! We are so excited!!!!
We took off the cannula and she looks like a different person. She seems so much more comfortable, but she does look for the tubing, since she used to play with it. She is still on the apnea monitor, but this is OK because we can sleep in peace, they are actually going to have to pry it away from me. I need to learn to let it go in the next month or so :(
So a lot has happened in the last month. Sorry for not updating sooner. We hadnt realized that it had been so long. We had break from DRs visits so it was pretty quite. Last we talked, she was having problems with her feeding, we finally found the right bottle/nipple combo that she liked. But we realized that she was eating less because of the 27 calorie diet. Then at the beginning of Sep, she got constipated :( This was really hard to watch and we got worried because of her surgery repair. We didnt want anything to rip. So we decided to change her back to 24 calories to give her more fluid. Daddy also had a heated discussion last week with the nutritionist. We didnt tell her we switched her calorie intake but she was insistant we stay on the 27 calories and add oatmeal. We said we would give it a try. We then saw her surgeon and this helped us because everything looked good and she was just constipated. She needs more fluid. The surgeon said to give the 27 a try and if it didnt work then go to 24 with the oatmeal. She eat more oz on the 24 then the 27. Also she did not gain the weight she needed. This was according to the pulmonologist. We then come to find out that they are grading her on a 7 month old, not a 29 week preemie. We thought at this point that they would keep her on oxygen, but that didnt happen. Friday night we took her oxygen saturation test and today we got the results. this has been the best news, since they told us she was coming home. Well we did fess up to our Zoë on a 29 week preemie chart and she is in teh 25%, this is good for her. So she gave the ok to stay on the 24 cal diet and agrees with us the Zoë is not your normal preemie because of her surgery. We love our pediatrician, she always makes us feel much better. She was going to talk to the nutritionist for us and fax over the growth chart she uses, hee hee. She is so much on our side.
Zoë has also started to do many new things. She holds up her head on her own. She found her feet; she grabs them and plays with them. She also knows who her Mama and Daddy are. She gets seperation anxiety when we are in the room and are not with her. She rolls over much more and has started to like tummy time much more. She learned to lift her head during tummy time. She loves her toys that we hang when she lies down and reached for them. She laughs a lot, it is the cutest laugh. She also learned to scream. She loves to cuddle with Mommy, she falls asleep on my shoulder now.
The biggest news is that she was teething all this time. Both her bottom two teeth have broken through the gums. The first one broke through 1 week ago and the 2nd one on Monday night. She loves to bite down and does not let me check her gums anymore.
She is already 7 months. She has grown up so fast. She has finally been home more then she was in the hospital, this is such a relief. Her 1yr old BDay part is in less then 5 months. We need to start planning. But first we need to find her Halloween costume and get ready for her to attend her 1st ASU home game. We have not been because it has been too hot for her. Maybe in the next 2 home games we will go. Thanks for all the prayers and messages from everyone, we appreciate it :) It is such a good feeling to know how many people love her. She is so easy to love :)
We took off the cannula and she looks like a different person. She seems so much more comfortable, but she does look for the tubing, since she used to play with it. She is still on the apnea monitor, but this is OK because we can sleep in peace, they are actually going to have to pry it away from me. I need to learn to let it go in the next month or so :(
So a lot has happened in the last month. Sorry for not updating sooner. We hadnt realized that it had been so long. We had break from DRs visits so it was pretty quite. Last we talked, she was having problems with her feeding, we finally found the right bottle/nipple combo that she liked. But we realized that she was eating less because of the 27 calorie diet. Then at the beginning of Sep, she got constipated :( This was really hard to watch and we got worried because of her surgery repair. We didnt want anything to rip. So we decided to change her back to 24 calories to give her more fluid. Daddy also had a heated discussion last week with the nutritionist. We didnt tell her we switched her calorie intake but she was insistant we stay on the 27 calories and add oatmeal. We said we would give it a try. We then saw her surgeon and this helped us because everything looked good and she was just constipated. She needs more fluid. The surgeon said to give the 27 a try and if it didnt work then go to 24 with the oatmeal. She eat more oz on the 24 then the 27. Also she did not gain the weight she needed. This was according to the pulmonologist. We then come to find out that they are grading her on a 7 month old, not a 29 week preemie. We thought at this point that they would keep her on oxygen, but that didnt happen. Friday night we took her oxygen saturation test and today we got the results. this has been the best news, since they told us she was coming home. Well we did fess up to our Zoë on a 29 week preemie chart and she is in teh 25%, this is good for her. So she gave the ok to stay on the 24 cal diet and agrees with us the Zoë is not your normal preemie because of her surgery. We love our pediatrician, she always makes us feel much better. She was going to talk to the nutritionist for us and fax over the growth chart she uses, hee hee. She is so much on our side.
Zoë has also started to do many new things. She holds up her head on her own. She found her feet; she grabs them and plays with them. She also knows who her Mama and Daddy are. She gets seperation anxiety when we are in the room and are not with her. She rolls over much more and has started to like tummy time much more. She learned to lift her head during tummy time. She loves her toys that we hang when she lies down and reached for them. She laughs a lot, it is the cutest laugh. She also learned to scream. She loves to cuddle with Mommy, she falls asleep on my shoulder now.
The biggest news is that she was teething all this time. Both her bottom two teeth have broken through the gums. The first one broke through 1 week ago and the 2nd one on Monday night. She loves to bite down and does not let me check her gums anymore.
She is already 7 months. She has grown up so fast. She has finally been home more then she was in the hospital, this is such a relief. Her 1yr old BDay part is in less then 5 months. We need to start planning. But first we need to find her Halloween costume and get ready for her to attend her 1st ASU home game. We have not been because it has been too hot for her. Maybe in the next 2 home games we will go. Thanks for all the prayers and messages from everyone, we appreciate it :) It is such a good feeling to know how many people love her. She is so easy to love :)
Friday, August 14, 2009
Happy 6 month Birthday Zoë!!
Happy 6 month birthday Zoë.!! Can you believe it has been 6 months already. Where did the time go??? Before we know it, we will be sending her off to pre-School.
Zoë is still on oxygen. We went last week and she weighed 10 lb 7 oz. She is gaining weight but not as fast as the pulmologist would like. Their theory is that if gains her weight now, in a few years she would be the small kid. If she doesn't grow now, she will be the small kid and have more trouble with her lungs. So the oxygen is to help her not work as hard. Because if she has to work hard to breathe, she will lose calories and we want her to retain the calories that she takes in. She was only gaining a half ounce per day and she needed to be at one ounce per day. The result of this is that she is now on 27 calorie formula. Regular formula is 20 calories. The results of the apnea monitor is that it only went off 3 times since she came home from the hospital in July. This didn't seem to concern them. They also did take into account that she had the swine flu and were told that it can take a long time to recover from it and a possible reason for the slow weight gain. I think this is another reason they are keeping her on the oxygen.
Today we saw our pediatrician. She however is not concerned about her weight gain. Today Zoë weighed 10 lb 14 oz. So in the last 7 days she has been gaining one once her day. She is very pleased with her weight gain. This is the frustrating part because you get two different doctors telling you two different things. On top of that we have been struggling with finding a bottle/nipple that Zoë likes. Her eating habits had changed and we thought it was the nipple. I think we found the right one. Now our pediatrician looks at the overall picture. As we discussed our concerns about the two different messages we are getting and her eating habits, we have decided to pay attention to the pediatrician. She made a lot of sense when we discussed everything. I think it is because we did discuss Zoë's overall progress, not just weight. She also got her 6 months shots today. Poor baby cried, she even had tears :( We did help her by giving her Tylenol before the shots. This helped so much today. She wasn't as fussy as she could have been. So it seems that both doctors are looking at different charts and we just need to be patient and know that all of this is to make her stronger physically. We already know she is a strong person inside.
We also saw her surgeon this week. Good news is that everything is healing nicely. We have gone from monthly visits to going every 2-3 months. She also is pleased with her progress.
Other good news is that each doctor was pleased with development. She is doing a lot of things that they are expecting. Here are some of the new things she does.
Daddy has also started his marathon training. He joined the Phoenix Children's' Hospital Miracles in Motion marathon training team. He gets help training for the PF Chang's Marathon and he will help raise money for PCH. We will be asking for your help on this. He needs to get $1500 in donations by November 15th. There is a web link where you can donate. Once he gets it, we will post it on this blog. They have given us so much, that we want to give back to them. His first meeting and run is tomorrow morning. Good luck Marathon training Daddy!
Zoë is still on oxygen. We went last week and she weighed 10 lb 7 oz. She is gaining weight but not as fast as the pulmologist would like. Their theory is that if gains her weight now, in a few years she would be the small kid. If she doesn't grow now, she will be the small kid and have more trouble with her lungs. So the oxygen is to help her not work as hard. Because if she has to work hard to breathe, she will lose calories and we want her to retain the calories that she takes in. She was only gaining a half ounce per day and she needed to be at one ounce per day. The result of this is that she is now on 27 calorie formula. Regular formula is 20 calories. The results of the apnea monitor is that it only went off 3 times since she came home from the hospital in July. This didn't seem to concern them. They also did take into account that she had the swine flu and were told that it can take a long time to recover from it and a possible reason for the slow weight gain. I think this is another reason they are keeping her on the oxygen.
Today we saw our pediatrician. She however is not concerned about her weight gain. Today Zoë weighed 10 lb 14 oz. So in the last 7 days she has been gaining one once her day. She is very pleased with her weight gain. This is the frustrating part because you get two different doctors telling you two different things. On top of that we have been struggling with finding a bottle/nipple that Zoë likes. Her eating habits had changed and we thought it was the nipple. I think we found the right one. Now our pediatrician looks at the overall picture. As we discussed our concerns about the two different messages we are getting and her eating habits, we have decided to pay attention to the pediatrician. She made a lot of sense when we discussed everything. I think it is because we did discuss Zoë's overall progress, not just weight. She also got her 6 months shots today. Poor baby cried, she even had tears :( We did help her by giving her Tylenol before the shots. This helped so much today. She wasn't as fussy as she could have been. So it seems that both doctors are looking at different charts and we just need to be patient and know that all of this is to make her stronger physically. We already know she is a strong person inside.
We also saw her surgeon this week. Good news is that everything is healing nicely. We have gone from monthly visits to going every 2-3 months. She also is pleased with her progress.
Other good news is that each doctor was pleased with development. She is doing a lot of things that they are expecting. Here are some of the new things she does.
- She turned to her tummy. Not once but several times.
- Is liking tummy time more, but still gets mad
- Sits up by herself in her Bumbo chair
- Is sleeping through the night (every night), except for the night it rained (she woke up and wanted to play)
- She intentionally grabs her doll and hugs her. It also looks like she wrestles with her. Her name is Dolly
- Notices her toys when they are in her reach and tries to grab them
- She notices her hands when she moves them in front of her
- She has the biggest smile when she sees Mommy and Daddy
- Rubs her eyes when she is tired
- She still talks a lot, doesn't complain as much as she used to. She likes to just talk.
- Tia Lissa noticed her laughing in her sleep two days ago
- Likes to dance with Daddy
Daddy has also started his marathon training. He joined the Phoenix Children's' Hospital Miracles in Motion marathon training team. He gets help training for the PF Chang's Marathon and he will help raise money for PCH. We will be asking for your help on this. He needs to get $1500 in donations by November 15th. There is a web link where you can donate. Once he gets it, we will post it on this blog. They have given us so much, that we want to give back to them. His first meeting and run is tomorrow morning. Good luck Marathon training Daddy!
Saturday, July 25, 2009
Zoë has recovered
Zoë has fully recovered from the swine flu. It has been over 1 week that she has gotten over her cough. Now we are dealing teething. This kicked in a couple of days ago. She is whiney and not her happy self. You think she is crying, but when you look at her, she is whining. It sounds like she is complaining, it is the funniest thing. We have even had multiple conversations with her and she is complaining to us. This morning at 7a, on a Saturday, she talked to me for about 5 minutes straight. She complained and complained, you can't help but laugh. She is so funny. She also is chewing on her hands a lot more and drools. We got some Orajel but this seems to help only a little. This also is changing her eating, since she doesn't want to eat at time, and this is starting to worry Daddy. Since we still log her feedings, she is taking in the volume she needs but the times she takes it in has changed. We have about a 2 week break of doctors visits. We start again the begging of August.
She is growing up fast. She is 2 1/2 months adjusted age, but is 5 1/2 months old. She is developing at about a 4 month old pace. Here are some of the new things she is doing since the last post:
- She kicks her blanket off (intentionally)
- Laughs a lot (she's ticklish just about everwhere)
- Has started to grab her left hand
- Sticks both hands in her mouth
- Puts her left hand in her mouth (She gags herself, since there is no thumb to stop how far it goes in)
- Talks a lot. She converses with us and other people
- She pulls off her nasal cannula. Sometimes she sticks it in her mouth.
- Talks to herself in the mirror. It's like in Finding Nemo, Deb the fish has a twin sister Flo, its her reflection in the glass. We call her reflection Chloe.
- Talks to her doll. We haven't named her yet
- Today she grabbed her doll and stuck it in her mouth. It also looked like she was hugging it.
- Tries to grab her chuppie. She'll hold it but doesnt know to put it in her mouth.
- Discovered her right hand. She stares at it and goes cross eyed
- She plays with her blanket, as she stares at her hand
- She is seeing objects farther away
- Spins herself in her play pen, hasn't turned over yet
- Loves it when you sing to her or make her dance
- Recognizes Mommy and Daddy
- Recognizes our voices. Daddy had Mommy on speaker phone one morning and she was looking around for me. I was at work.
- Likes watching "So you think you can dance"
- Loves her friends (animals) on her bouncy, she loves to look at them move above her.
- Is sleeping more through the night. She eats more in the day then at night.
- Doesn't like to be cradled like a baby. She likes to be upright looking at the world. She is very social.
- We moved up to size 1 diapers and she has grown out of most of her newborn clothes.
- Sounded like she said "Mama" when she was talking this morning. I think it was an accident, but Daddy heard it too and says that she said it the other day. I still think it was an accidental "Mama".
We are having fun watching her become a big girl. Daddy right now is worried because she has been getting really fussy the last few days. Teething is the only thing we can think of. One minute she is ok, then the next she is not happy and she chews on her hand, drooling. Right now she is complaining to Daddy and he is encouraging it, she sounds so cute.
Monday, July 13, 2009
Zoë had the swine flu
Yes we said it... today we got confirmation that she had the swine flu. She was released from PCH last monday and today we had a follow-up appointment with her pediatrician and we got confirmation today that it was the swine flue. Since she is better now and is no longer sick there is nothing else that we need to do. Sorry for not posting sooner, once she came home we have been busy trying to get back into our old routine.
Zoë had recovered beautifully. She is back to her old self and even better then before. She is so active. She has started to cup her bottle and had held on to her chuppie, she just doesn't know how to put it back in. It looks like she wants to hold it. She is eating so much. She became a better eater in the hospital. She is growing so fast now. She now weighs 10lbs 2oz. She is a big girl now.
She will also remain on the oxygen for at least another month. The swine flu and pneumonia set her back some. Since we have been home, we have had no beeps on the monitor. This will help her lungs heal.
We are in disbelief that she had the swine flu. I think Soilo is still in shock as we sit here. We have no clue where she could have gotten it. On the bright side, she is now immune from it. We hear it was supposed to be a bad fall/winter for the flu. She at least has some anti-bodies in her system and will be in the clear this winter. When we were in the hospital last week, we were saying she has used up her sick points and now has a credit and wont get sick again for a while (this is our hope).
We have been having a lot of fun with her this last week. She is a happy baby. She laughs and smiles almost all day long. You know there are some babies that seem to be mad at the world, they dont smile and cry all the time. Zoë is not like that. When she is upset it is because she is hungry, diaper is wet, cold, tired or we are messing with her. She is aware of her surroundings and loves her bouncy chair. It has a bird and elephant that she loves to stare at. She also discovered the TV and ceiling fan. She can stare at them for hours (minutes for her short attention span). She also still loves her thumb. We thought she gave it up, but yesterday she started sucking on it again. She self soothed herself and put herself to sleep. She also put her two fingers in her hand from her left hand. Since there is no thumb, she found a work around. She is sooo smart.
It was a little scary being in the hospital last week, again. We didn't think we would be back. She keeps showing us what a strong spirit she has. We just love her so much. Thanks again to all of you who also love her and we appreciate your prayers. :) Thanks for being there for the three of us.
Saturday, July 4, 2009
Spending the 4th of July at Phoenix Children's Hospital
Zoë is still at PCH. She has been doing a lot better and is back to her normal self. She slept through the night and has been awake most the day, taking her normal short naps. She is also talking a lot more today and has been smiling all day. We had some good cuddle time today. She caught me up on all that happened to her. It was a good conversation. She has been very happy today. She still has a small cough, but it is not bad at all. Even the nurses commented how much of a good baby she has been and are surprised how fast she got over the flu. Most kids spend weeks trying to get over this type of flu. She is a fighter, she always has been (even all the way back since I got pregnant).
She has had no apnic spells since she was at the PICU. We were given a tentative release date of Monday. There are two reasons, 1) we need to have 48-72 hours of no apnic spells, early Sunday morning is 48 hours. 2) It is the holiday weekend, so the doctors that need to see her before her release are not in until Monday. They are also not able to download the data from the apnea monitor until Monday, because of the holiday. We are also waiting for news about the pneumonia. She also took out the IV in her head. We were not in the room when she did it. Every single piece of equipment, monitors, IVs, CPAP, etc., that she has had on her since the NICU, she has taken off at least once. I don't know how she does these things. She is a very smart little girl.
We continue to see nurses that took care of Zoë in the NICU :) They all say "didn't you leave...why are you back." At least today we can say that she is better and we are almost out of here. We also saw Fernando Nieto here, his baby is in the NICU. So we understand what they are going through with their baby. They are almost going home also.
Her hospital room is facing in the direction of Indian Steele Park, so we will have a front row seats to the fireworks. These will be her first. At least we will not have to be in the heat to see them. We did put on her 4th of July outfit, she wanted to be festive (thanks to Tia Bere, who gave it to her). She also got a stuffed bear from the hospital to celebrate. This was very nice of the staff.
Oh I forgot, we also found out that she is ticklish. The nurse today also tickled her by accident and she smiled with a tiny giggle.
Here are two pictures from yesterday. Happy 4th of July!
She has had no apnic spells since she was at the PICU. We were given a tentative release date of Monday. There are two reasons, 1) we need to have 48-72 hours of no apnic spells, early Sunday morning is 48 hours. 2) It is the holiday weekend, so the doctors that need to see her before her release are not in until Monday. They are also not able to download the data from the apnea monitor until Monday, because of the holiday. We are also waiting for news about the pneumonia. She also took out the IV in her head. We were not in the room when she did it. Every single piece of equipment, monitors, IVs, CPAP, etc., that she has had on her since the NICU, she has taken off at least once. I don't know how she does these things. She is a very smart little girl.
We continue to see nurses that took care of Zoë in the NICU :) They all say "didn't you leave...why are you back." At least today we can say that she is better and we are almost out of here. We also saw Fernando Nieto here, his baby is in the NICU. So we understand what they are going through with their baby. They are almost going home also.
Her hospital room is facing in the direction of Indian Steele Park, so we will have a front row seats to the fireworks. These will be her first. At least we will not have to be in the heat to see them. We did put on her 4th of July outfit, she wanted to be festive (thanks to Tia Bere, who gave it to her). She also got a stuffed bear from the hospital to celebrate. This was very nice of the staff.
Oh I forgot, we also found out that she is ticklish. The nurse today also tickled her by accident and she smiled with a tiny giggle.
Here are two pictures from yesterday. Happy 4th of July!
Friday, July 3, 2009
Zoë is in a regular room
Zoë has been moved from the PICU to a regular hospital room (510B). This is great news since she doesn't need the constant supervision. Last night they removed the low flow cannula and placed her on the regular oxygen. They started her at 2 liters. Last night she had a couple of apnea episodes but we expected something to happen since this is a dramatic change. I would have been surprised if she didn't have an episode but you are always hopeful if they do not.
She is eating like a champ. Right before we got to her room, she hat 110 cc in one shot. She is eating so much now. Which is good, since we are always worried that she is not gaining enough weight.
They also have stopped the IV antibiotics and she is now getting them orally. She still has her IV hat on though. She has less wires, which is a good since that she is getting better.
When we walked in she gave us a look like, "where were you, they moved me and you weren't here." We both took turns holding her. She then warmed up and smiled a couple of times.
If you might remember, we were scheduled to be here on July 2. Her surgery was originally scheduled for her 2 month corrected age. I was bumped up because of the specialist being here in April. Today is July 3 so we still ended up being her on July 2.
She is allowed visitors, we are just limiting the kids from going into her room. We are here for one other night, but if she has no apnea we could possibly go home tomorrow. It was very empty at home last night.
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