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.

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.

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!

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.

I'm feeling better today

Zoë is doing a lot better today. She seems like her old self. She has been more awake today then yesterday. She doesn't looked wiped out anymore. She is also eating like a champ. She has been eating every 2 hours. She has been taking down 75cc (2 1/2 oz) each time. She also takes it down from 4-5 minutes. This is much faster then when we were at home. She has even started doing her hungry cry. Her hungry cry is her being mad. She has such a temper.

Today they started to wean her oxygen down. This is going to be the kicker for us going home. She started out at 5 liters 50% and is currently down to 2 liters and 40 % oxygen. They are going to try to take her off of the low flow oxygen machine and put her on pure oxygen. We need to get to .2 liters with no apnea episodes. Her last apnea episode was late last night. She also needs to finish her rounds of antibiotics. Her XRay from this morning came back. The pneumonia is starting to go away, it is less then the other night but not fully gone. The antibiotics are helping. Since they are given by IV, she wont be able to go if the IV is still in her. Also since her veins in her hands and feet were week because of the NICU IVs, they had to stick the IV in her head. I know it sounds kind of weird, but this is done on preemies all the time. It is a bunch of tape and gauze covering it up, so it doesn't move. I call it her hair bow. She did not have to have her head shaved, I've already had that question asked. We did try her feet first, but the veins were too week. She is still in the PICU, we may move to a regular room but this is not for sure. This all depends on her progress

She currently has a cough and runny nose. She sounds so cute when she sneezes, its like she is trying to hold it in. We need to record it and post it. It seems like with her that every 12 hours we have seen some type of improvement.

We are here for another night and will possibly be here through the weekend. Sorry we will miss the pool party on Saturday for cousin Bryna and cousin BJ's birthday.

I have ran into several nurses that took care of Zoë in the NICU. It was good to see them, just not under these conditions. Her pediatrician also stopped by today to see how we were doing. This really meant a lot, since she came to see how we (Soilo and I) were holding up. Her pulmonologist also stopped by to check on her, they had been downloading the information from the apnea monitor directly to his office. Phoenix Children's is the best.

Since she is stable, I am off to work tomorrow. Daddy has the day off, so he will spend all day with Zoë. It is good to see her smile again and converse with us. Right now Daddy is holding her and she is awake looking around the room. Only a couple more days of this and we are back home......

Sorry so long....

Sorry the post below is so long, a lot has happened in 24 hours. I am spending the night at the hospital with Zoë. There goes the apnea monitor again. It is loud.

I'm sick and back at PCH PICU

That's right, Zoë has been re-admitted to the hospital and is at Phoenix Children's in the PICU. :( She has been diagnosed with Influenza Type A and the beginning stages of pneumonia. This all happened so fast, from one minute to the next. We are in just in shock that we are back in the hospital. Most of you already know that we are here and thanks for all your support this far.

So this is what happened. Yesterday we went to see her surgeon for our regular check up. Zoë was alert and being playful. She was talking to us and smiling. The Dr. even commented on how good she was doing. When we left, then it started. Her apnea monitored went off on the way home, we hadn't changed it so thought she moved them or they were dirty. Then it started to go off and throughout the day it was going off more often and for longer periods of time. She threw up once and was not her happy self. So Soilo went home early and off they went to the ER. Thanks to Tia Lissa who was able to notice that Zoë was not being herself and noticed something was wrong. As soon as they got to the ER, her temperature shot up. She was being very apnic and her heart rate even dropped. When I got to the ER I could tell that she was not the same baby that I saw that morning. She looked sick and that something was definitely wrong with her. We got her to the ER in time, since it could have been worse if we had waited any longer.

We were admitted last night to the PICU. We both stayed overnight with her since she was not doing so well. She kept going apnic and they were even talking about intubating her. This was the scary part. The intubation kit is here sitting on the cart in front of us, so they were ready to do it if needed. They did change her to a low flow oxygen cannula and this little help seemed to do the trick. Zoë fought her way through it and the apnea episodes decreased through the night. We even got about an 1 1/2 hour straight of sleep at one time. So right now it doesn't look like they are going to intubate her. The apnea monitor is really really loud that the entire PICU hears it. They think it is a fire alarm going off.

She looked sad and you could tell that she was not feeling very well. You know this feeling when you have the flu, you do not feel too hot and just want to sleep, but you are hungry. Everything hurts. She definitely has the flu, you can see it in her face and her other symptoms. She is coughing and sneezing, her nose is now runny. However it is a good sign because she is able to get all the gunk in her lungs out herself. She has been crying, which is not normal for her. With preemies this affects them even harder because their immune system is already immature. Zoë also already had lung problems, so this flu just escalated the issue. You have probably gone through this, you feel sick then it levels off and you get worse again before you get better. Right now is a waiting game, since we need to see if she has reached her peak of the illness or if she is past that stage and starting to get over it. Since the monitors went off half the night, we didn't get much sleep. So we both spent the entire day with her today. The apnic episodes have decreased and she is coming around to her old self, she even smiled a little this evening. She finally got to eat after 30 hours of having nothing to eat. Within 1 hour she took in 146 CC. We are hoping she has passed this peak.

She is way better tonight then she was yesterday. We estimate to be here a couple more days. They are trying to get her back to how she was before she got sick. She is in the PICU which is a different part of the hospital and different then the NICU. We have a window and a TV (which we really haven't watched). Today her respiratory therapist was Anne, Zoë had her when she was in the NICU. This was comforting. We also saw ran into another Anne, the resident who had Zoë in March at the Good Sam PCH campus. For sure we are here tomorrow, after that it is day by day. The apnea machine really did its job and let us know that something was really wrong with Zoë.

Some good news before she got sick was that she had become a lot more interactive then the week before. We talk to her and she talks back. She also found her thumb. Before she would just suck on her entire hand. Last week she just started to suck on her thumb like a pacifier. I tired to give her the chuppie and she spit it out (she got some distance on it), she only wanted her thumb. She looked so cute just sucking her thumb. She was also 9lb 7 ozs yesterday morning. We also still think she is teething because she sometimes just chews on her hand to sooth herself. She is growing so fast.

Since Zoë does have influenza Type A, they did send it to see if it was the H1N1 virus. We wont know the result until after we are home. But they do not think it is. Because of her pulmonary problems she was put on anti-viral mediation. They also gave her a higher does of anti-biotics because of the pneumonia and this also takes care of her bladder reflux that she already has. They are will also try to ween her down to the oxygen flow she was at before she was admitted, this will be the item that keeps us in the PICU longer. Tomorrow they will be taking another chest XRay to check the status of the pneumonia. She does seem more stable tonight, so if she keeps this up, we both may go to work tomorrow.

So if you are a nurse from the NICU and are at Thomas, maybe we will see you around here or come by and visit Zoê.

It is just surreal that we are back here. We almost made it to 2 months out of the NICU, May 2nd we were released from the NICU. This is just another stage of her life as a preemie.

Again, thanks for all those that have texted and Facebooked us. We really appreciate your support and prayers. We will keep everyone updated on her progress.