Monday, September 24, 2012

Anya is 4 weeks old! & Change of plans...

The date was set. Anya was to come home on Tuesday, as in tomorrow. I went out and bought a new pack-n-play (since sadly Emoree's that I had kept in the attic got ruined), got the swing set up, the bouncy seat, filled the diaper stackers with little preemie diapers (she is still under 6lbs), I picked out her dress that she would wear home, everything is ready. I was going to stay at the hospital over the weekend to learn how to use her NG feeding tube and administer her medications (she is on 9 different meds!). I got to the hospital on Saturday afternoon, and wasn't informed about this change of plans beforehand. Anya isn't coming home tomorrow. She was marked by OT as "poor PO feeds" (which means she didn't take to bottle feeding well), and somewhere along the way they changed their minds about letting her come home with the NG tube.  They have also now decided she may have reflux issues (which many HLHS babies deal with), because her sats drop a little after feedings. She will possibly have a swallow study done this week.

This picture is from Thursday morning, I was there when OT came in to try bottle feeding with her. She took 25ml (out of 50ml) at this feeding!! The next morning she took 20ml. I don't know what happened during the afternoon feeds (they try bottle feeding twice a day, to not tire her out), but it seems they didn't go as well as her morning feeds. My biggest frustration over this past weekend: Occupational Therapy (OT) staff isn't there on the weekends typically, so over the weekend that I spent most of with her, she wasn't able to progress with her feeding. Luckily, there was someone there on Sunday and I was there for both of those feeds, the first she took 25ml, and the second one she only took 7ml because she was fussy and sleepy.

Her surgeon gave 3 options to me. Option 1 is that she can get a g-tube at 6 weeks old, and come home with that. I know quite a few babies who have done well with this option, and if she has extended feeding issues that could eventually be an option, but I was slightly offended that it was given to me as an option only 3 days into trying to bottle feed her. I felt like they weren't giving her a chance. Option 2 is going to Mt. Washington Pediatric Hospital. This option is like a "step down" unit sort of option and she would be there is soley work on feeding skills, and that is something they specialize in. Option 3 is staying at UMMC and working on feeding skills with their OT staff (whom I'm already annoyed with). My choice right now is to not choose, I want to see how she does with her feeds over the next few days and then decide. I'm halfway on the fence of standing my ground to bring her home with the NG tube, or to send her to Mt. Washington. With Mt. Washington, I want to see their facility first. I want to know she will still be monitored from a cardiology stand point. I also want to see how many kids/babies she will be "roomed" with, because I want to limit her exposure. Having one roommate at UMMC (and their family that NEVER leaves) is more than enough. With Mt. Washington, Emoree may get to visit her more than she can now at UMMC.

This will make anyone an expert at changing diapers. Yea, just try and change her stinky diaper around all of those wires, and not being able to remove them. That is what I spent my weekend doing, its one of the only things they LET me do with her.
Here are some pics from Anya & I's weekend together... we spent most of the weekend cuddling and playing dress up :) I hate that all of my pics lately are from my phone... but at the hospital its easier than lugging around my SLR camera. I cannot wait to have her home and take a million more better quality photos!!!!

I just called to check on her this morning and they are going to see how she does without the nasal cannula today (yay!! no more oxygen hopefully!), and OT is going to do her 11AM feed and another in the afternoon. They are starting her referral to Mt. Washington, even if we decide to not go there they said they want to have it ready. Her surgeon wants to give her 2 days to see how she does with feeds and then re-assess her, and I agree with that. 

Wednesday, September 19, 2012

I have a secret... :o)

You want to know what it is? I can't contain it much longer. Anya's doctor said the "H" word the other day!!! No date set yet, but if all continues to go well, Anya could be HOME sometime next week!!!! Crazy happy dance!! Last week I felt like it would be another month... but it doesn't look like it now! It's the question I've been afraid to ask, and they answered it for me :) She still has a few steps to go, however.

Step #1: Weaning her off of oxygen. Simply, she needs to be able to keep her sats up without oxygen. She is on a low flow nasal cannulla at 30% oxygen currently.

Step #2: These pesky chest tubes! Luckily, one was taken out yesterday. She still has nemothorax (sp?) which is an air pocket under her left lung, and interventional radiology is working on it again today, they are unsure if they will have to replace the tube or just move it around to try and get to the air pocket. They also don't know why it is there, or if it ever went away (and came back) in the first place. Either way, I'm really hoping we overcome this step TODAY. It doesn't seem to phase her though, other than it could be the possible reason for her high respiratory rate.

Step #3: Feeding. This is a tricky one. Speech therapy tried working with her yesterday on bottle feeding, and her respiratory rate was too high for them to try and bottle feed her. HOWEVER, this morning, she took 10ml by bottle for them, yay!!! They will also try again with her this evening. Here is that "h" word again... I talked to her surgeon the other night and he is comfortable with her coming home with an ng tube (the feeding tube in her nose), and I told him I was comfortable with learning how to use it as well. Which means, we will try feeds by bottle first, and whatever she doesn't finish will go into her feeding tube (because her gaining weight is the most important thing for her to get her next surgery at 4-6 months).

I'm a little nervous, as I should be, but BEYOND excited. I want her to continue to do well and for the next week to fly by. I installed her car seat in my car this week:
It's so nice to see 2 car seats in my back seat, now I can't wait until both my kiddos are in them :) (BTW, This pic is mirror image, because Emoree's seat is behind the driver's seat and Anya's is behind the passenger seat). I also have an outfit picked out for Anya to wear the day she comes home, but you can wait to see that later :)

This one is pretty special, 20 days old and Anya smiled for the first time :) This made my entire week!

Just a few more Anya pics (since I take pics of her everyday):

Playing play-doh with Emoree, I made a CHD heart <3
This is posted on the side of Anya's bed, her sternal precautions (which I believe apply for at least 8 weeks after Open Heart Surgery).

I am still pumping breastmilk for Anya, and freezing it since she can't have it for 6 weeks (due to her fat free diet). I saw my OB on Monday and she gave me a script for Reglan, so that maybe I can produce an adequate amount of milk! 5-10ml just doesn't cut it. Waiting to see if it works!


Wednesday, September 12, 2012

Two steps forward, how many back? & Sisters meet!

A lot has happened in the last week, and I just haven't had any time to update, so I'm going to break it down into a timeline.

Anya's respiratory rate has been high, so after 24 hours on the low flow nasal canulla she was switched to SiPAP. They tried to place a feeding tube, but it was unsucessful. Two steps forward one step back, right?

Today her first chest tube came out, it had actually come loose and just pulled out while her nurse was changing her diaper. They said it was no longer needed because it didn't have much output anymore. They took out her catheter too, so now she pees in her diaper :) Another unsucessful feeding tube attempt, but I got to hold her today for the first time in over a week!!! That was fantastic :)
Today Anya sucessfully switched from SiPAP to Vapotherm, which is a high flow nasal cannula. I was there when they switched her so I was able to take a picture of her without anything on her face :) She is taking to her pacifier well, which will help when it comes time to bottle feeding. They were able to place a feeing tube today too! She started getting her first drops of breastmilk today, they started her on 3ml and hour to see how her stomach would handle it. They also took out the second chest tube, one to go! She weighs 5.8lbs today.

Emoree got to meet Anya today!!! I asked the head nurse yesterday if I could bring her, and she granted one visit for Emoree. Emoree was nervous but very excited, and in the end did not want to leave. Emoree finally got to bring Anya her present, her musical seahorse. She still asks me everyday when Anya is going to come home. Lots of pictures here:

The visit with Emoree was short because the commotion was too much for Anya, her heart rate kept spiking up. So later that night I went to visit her myself, and when I got there I didn't like what I saw. Anya's nurse was not in the room (which they don't stay in the room all the time anyway now that she isn't critical) but she was crying, her hands and face were bluish, she had kicked off her pulse ox monitor and ripped off her oxygen. I tried fixing her pulse ox and when I couldn't I went to find someone, and found a doctor in the hallway. The ICU attending fixed her pulse ox and tended to her and by that time she was pink again. He then explained to me that they were waiting for x-ray on her because she kicked out her last chest tube, and that one wasn't ready to come out. A while later x-ray came and determined there was an air pocket in her chest that needed to be drained, so they set up to put a chest tube in her side and I was sent out of the room. While I was in the family waiting room, my friend Sarah (whose baby is also in the PICU) found me and let me cry and vent to her. I had never seen Anya blue before, so it scared me but it is common for these HLHS babies to turn bluish when they get upset. This chest tube attempt ended up being unsucessful, but the doctor told me that  it did release the air pocket, and another x-ray confirmed this so they did not try again tonight.
An x-ray this morning determined that there was still fluid between Anya's left lung and her chest wall, so Dr. Kaushal put a chest tube in her left side. On the plus side, she is up to 12.5ml of formula an hour. They ran out of my breastmilk (I don't get very much), so she was put on Pregestimil formula, 20 cal. Her sats were on the low side today, upper 60s-lower 70s, and respiratory rate is still high. I tried holding her, but her sats dropped to the 50s (even though she didn't look blue at all!) and no matter what the nurse did fiddling with her pulse ox, changing it, etc, it wouldn't come up so I had to lay her back down. Also her A-line in her arm was acting up and not getting an accurate blood pressure on her. The nurse practioner looked at it and determined it was leaking, so they took out her A-line (her hand is free now!) and said when they needed to draw blood they could do it from her central line (in her neck).
Today was supposed to be the day that Anya would be bottle fed for the first time, but that has now been set back a couple of days. She has chylomax, which is a complication of surgery where her chest tube output is a fatty, milky fluid. She has had a lot of output from her new chest tube too. Her formula was switched to Enfaport, 24 cal, which is a fat free formula she will be on for 6 weeks, though the chyle in her output should clear up in a few days.
I feel like we are moving in the wrong direction, yet Dr. Kaushal still assures me that Anya is "ahead of the curve". Today Anya's chest x-ray showed fluid in the right side of her chest, so they put in a second chest tube. I thought tubes were supposed to be coming out, not going back in!
I visited Anya in the evening as well and the sight of her central line in her neck bleeding made me feel uneasy. I haven't gotten to hold her in 2 days and I'm getting discouraged. I want to hold her, feed her, bathe her, change her diaper. She is over two weeks old and I just want to be able to take care of my baby :(
Today, 9/12/12
This morning I called for an update and they told me they upped her calories in her formula to 27 cal to see how she tolerates it. So far she has done very well with the nj tube and formula. They should also be putting in a PICC line in her arm or leg today, so that hopefully her central line in her neck can come out ecspecially since they have been having issues with it recently. They informed me they will also start her on a new IV drip med today to help clear up her chylomax, which she will be on for a week or two. She was down to 1 IV drip med (a heart med), so this will make 2. Oh and her incision is healing nicely :)
I would love to bring her home within 4 weeks, right now that sounds reasonable. I want her home before I have to go back to work (though very part time) on October 14th.

For something I have waited for so long to do, Anya's room is now complete :) Everything is washed and put away, her NB clothes are hanging in her closet, and her NB shoes all lined up. Most everything used to be Emoree's, as I have kept all of Emoree's baby items. Anya really only has very few new items that I've bought or my mom has bought, and a few very cute outfits from my cousin Kim. I still need to buy a high chair (though that can wait a few months), I want to buy a video baby monitor, a bumbo seat, DIAPERS & WIPES, and a few other things I can't think of right now :)
Oh and as for me, I am now down 19 lbs, I have 6 lbs to go to pre-pregnancy weight AND my regular jeans now fit :)

Wednesday, September 5, 2012

Emoree's 1st Day of School/Dance, & Anya is extubated!

I don't think I will feel like a "Mom of 2" until Anya comes home. I just realized that yesterday, as if I forgot and thought "oh yeah, I have two kids," but I don't feel like the "Mom of 2" yet because they have two totally seperate lives right now, and haven't even met yet.

Emoree's first official day of pre-k was yesterday! She was so excited to go! Not even one tear, from EITHER of us. Grandma and I drove her to school (since I just started driving again today), and I took her in and waited with her in her pre-k line in the school gym until her teacher came. She hugged and kissed me, and said, "Bye Mommy!" and walked off with her class. She loves "Big Girl School"! I waited at the end of the hallway and watched where she couldn't see me to make sure she didn't get confused. She forgot to take her folder out of her backpack before putting it in her locker, so I went up the hallway and got it out and gave it to her, and she said "bye" again.
We picked her up at 11:45am, when Pre-K lets out, and when she realized she wasn't riding the school bus home she got quite upset. I don't know what it is about this kid and school buses! Today I did look into where the school bus would drop her off if she were to ride it, but I wasn't happy with the location so today I am going to have to explain to her that the school bus doesn't come near our house :-/ When we got in the car, she had her first day of school present waiting for her in her car seat, a big Dora pillow that I picked up at Walmart yesterday morning :)
Last night Emoree had her first dance class at A Step Ahead! She looked just as confused and bewildered as this picture the entire time, but after class was over she really lit up and was excited to tell me how much fun she had, and that she wanted to go back in and dance with her friends!! She has 30 minutes of ballet, and 30 minutes of tap on Tuesday nights.
Anya had a big day yesterday too. See what's missing? Her breathing tube!!!! I went to visit her mid-day yesterday, and it was the right timing too because they started her on her 3rd breathing trial shortly after I got there, and she did so well that the half hour wasn't even over and they were starting to bring equipment in for extubation! I asked if she would be on CPAP, and Melanie told me no she is doing well enough she would be put on a low flow nasal cannula, which is what she has on in this picture. They asked me to leave the room, and about 20 minutes later Melanie came and got me and had a huge smile. It worked! We "celebrated" by later last night I brought her the doll that Aunt Mary Ellen gave her, and her Sisters By Heart blanket. She also has a sound machine too that I brought to her earlier, because she gets startled by loud noises.

They did attempt to run an nj feeding tube in her nose, but later when they did an x-ray it was not placed correctly so they pulled it out and will try again today. Her x-ray also showed that her left lung isn't inflating completely, which can happen after coming off a ventilator, so they increased the pressure on the oxygen she is receiving and tilted her to her right side to help with her lung. I can't wait to see her today!

Monday, September 3, 2012

1 Week Old

It's hard to believe, its already been a week since Anya has arrived after waiting for so long! It has been a very busy week too.

Besides being 1 week old, Anya had a big day. She had her chest closed this morning!! That is the first of many post-surgery goals met. In the next few days her chest drain tubes should be removed, and Dr. Kaushal said she is doing so well so could be extubated in the next few days, but I think it could be more like a week. Then she can start feeding!!

I went to the hospital at 7AM this morning to see Anya before her chest closure. She was wide awake and looking around!! The procedure was a little over an hour, and was done right in her room, and my mom and I waited in the family waiting room. I was a little nervous when I saw the "ecmo cart" roll in the room, but I know it was just precautionary. After her chest was closed, she had an xray and then I could go see her for a few minutes. They asked me to leave the room after a few minutes because her central line in her neck was leaking and they needed to replace it, and that took at least another half hour. I stayed with her for a little while after that, then got to chat with my heart mom friend Sarah and see her 2 month old baby girl :) Anya was sedated for the procedure and they told me she would sleep all day.

~Emoree, the proud big sister she is!~
On Friday Emoree had Pre-K orientation!! She loved it and didn't want to leave. Her first "full" day (9AM-11:45AM) is on Tuesday September 4th.


On Saturday Emoree was swimming and finally decided she could take her floaties off, and she swam independently (next to the ladder) for the first time!!!!

First picture was taken 3 hours before Anya was born, and the 2nd one was taken yesterday! 15lbs difference! 9lbs to go to pre-pregnancy weight.