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.

 

 

 



9/5/12

 

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?

 



9/6/12

 

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 :)

 

 

9/7/12

 

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.

 

9/8/12

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.

 

9/9/12

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).

 

9/10/12

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.

 

9/11/12

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 :)











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!







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.







Norwood Surgery Day

 

PLEASE BE AWARE: Further down in this post (starting 8/30/2012) contains post-surgical photos that could be alarming to some.

 

Wednesday, August 29th, 2012
I had my alarm set on my phone for 5:30AM, but I was up before that anyway. Luckily I was still inpatient, as Anya was only 2 days old, on the day of her first big open heart surgery. I was anxious to get to the NICU and spend as much time with her before they wheeled her away. Surgery was scheduled for 7:30AM, and they said they would likely take her before that. My mom and I went to the NICU and I didn't think I was going to get to hold her, but to my surprise her nurse did let me hold her. I was still holding her at 7:15AM when they asked us to leave for nurse shift change, I was surprised and anxious because they had not taken her yet. 7:40AM I was allowed back in the NICU, and I stood next to her holding her hand for about a half hour before they came in and wheeled her away. I was in tears before they even started down the hallway, and I followed them until they were in the elevator. My baby was going to major surgery.

I went back to my room, cried some more, and then calmed down and ate some breakfast and took a shower. After that, I decided I wanted to try and pump for the first time, but even after 20 minutes I didn't get anything. I distracted myself for awhile watching TV and playing games and checking FB on my phone. My nurse came in and checked on me once in awhile, knowing Anya was in surgery. They were planning on letting me stay in my room until 4PM, because I thought, it being a 6 hour surgery, that I would be able to see Anya by then. That isn't how it turned out.

At 12:30PM, I got a phone call update from the OR nurse that Anya was doing well, but surgery was delayed and the first incision was not made until 11AM, and that surgery would be 5-6 hours from then. She wasn't even on bypass yet.

My nurse came in and asked about updates shortly after that call, and I told her what was going on. Unfortunately they couldn't let me stay in the room until evening, they needed it, so I ended up getting discharged at 1PM. We packed up my stuff, and my mom took it all to the car. We went up to the PICU family waiting room and sat and waited for updates.

At 2PM, I was exhausted, depressed, and had a breakdown. All I could think of was I was supposed to be taking my baby HOME right now, and I didn't even know if she was going to live at this point. I cried for awhile and fell asleep on my mom's lap.

At 3:30, Melanie, the P.A., came in and gave us an update. Anya was stable and doing well, still in surgery and on bypass, and they were starting to warm her. These simple words made me feel so much better.

At 4PM, my mom and I went downstairs to get something to eat. I couldn't stand to sit there much longer. A little while later, MomMom and Poppy Corder got there and sat with us, which made it a little easier, but I was in so much pain from my stitches I couldn't get comfortable.

At 5PM, Surgery was complete, and they were going to start taking her off bypass. Melanie told us to expect it to be at least an hour or two until the next update.

At 7PM, I was so happy to see Dr. Kaushal. He came in and told us that surgery went extremely well, so well infact that he felt like he could have closed her chest, but he decided to leave it open since she would swell more over the next few days.

For the next 45 minutes, Poppy Cordner paced the hallway waiting to see them bring Anya up to her room. He kept giving me updates, as I was in too much pain to get up and check myself. He would tell me when there were a bunch of people standing outside her door waiting, and when people would go in and out of her room. After we figured out she was in her room, we waited about 10 minutes before going down there.

There was so much going on. I nervously waited in the hallway right outside her room looking in, until someone asked "Are you mom?" and I nodded. They asked me to come in, and started telling me how well she did. They told me what medications she is hooked up to. Her nurse Bobbie kept talking to me while she was very busy working on Anya. I looked at my baby, and underneath of everything she was hooked to, I could still see her. She was a little pale, but not blue at all. She was still beautiful. Doctors were going in and out of her room, and her surgeon came in and talked to me again, and assured me she did very well. He said the next 12 hours are critical, but that was she doing well.

Meanwhile, I was in a lot of pain from my stitches. I couldn't stand still, I kept trying to shift my weight to get comfortable but I couldn't. At one point, I went out in the hallway and sat down because I couldn't stand anymore. I was upset because I had waited all day to see my baby, I had seen her for 10 minutes and I couldn't stand long enough to stay in her room. I went back in for 10 more minutes and said goodnight to her, and then my mom and MomMom Cordner helped me walk down the hallway and out of the hospital. Walking to the garage to the car, we saw Dr. Kaushal again. He talked to us some more while we walked, he even slowed down to my painfully slow pace to talk to us for a little longer. It made me feel better about Anya that he cared that much.

It was nice to go home though, because I missed Emoree. She gave me a big hug and kept saying "Mommy, you are home! I missed you Mommy!" This made many things better <3


Thursday, August 30th, 2012
I called first thing in the morning to check on Anya. They said she had a good night and was stable <3 We got Emoree ready for daycare, dropped her off, and I was absolutely content sitting by her bedside for 3.5 hours, there was no place else I wanted to be. My friend Sarah stopped in to say hi and meet Anya, her baby girl is two months old with the same heart defect and still in the PICU.

Under all of this I still see my baby girl. Her chest is open (hence the bandages), she has 3 chest tubes, an IV in her neck and left arm, and lines in her right arm and foot. The tube in her nose is the oxygen (intubation). The patch on her head (and one over her kidney) just tracks her blood flow through the skin in those areas. Her blood pressure was a little low today, but she is on meds for that. Her sats were ranging in the low to mid 70s.

 

I called at night to check on her before going to bed, and she is still doing well, and they started her on TPN (IV nutrition) and Lipids (IV fats).

 

Friday, August 31st, 2012

I called in the morning and got another good update. They are talking about closing her chest on Sunday! Dr. Kaushal originally said Monday or Tuesday. She is doing well with draining fluids, her swelling is going down. They took her off of the paralytic as well, but she is still sedated.

 

It was the BEST thing to go in and see her eyes open!!!! I stayed with her for 3 hours, and she is doing fantastic. She kept her eyes open for much of the time I was there. Her oxygen was at 40%, and her nurse moved it down to 35%. She handled it very well. A little while later she tried to decrease it to 30%, but after a little while Anya's sats dropped in the low 70s so she put it back at 35%. She is looking good!

When I called in the evening, Elizabeth, the nurse, had said Anya responded very well to me being there with her today!

Saturday, September 1st, 2012



I called this morning and the nurse told me that Anya was taken off of her blood pressure meds overnight, and is handling it very well. She had a blood transfusion this morning too (which is typical during and after surgery). Her oxygen was also decreased to 21%!!

This morning I woke up and felt little hard knots in my breasts, so I decided to pump. It might be drops to someone else, but I was excited to pump 8ml of breastmilk for Anya! I put it on ice and took it in today for them to freeze for when they feed Anya in the next coming weeks.

I was unaware that children under 12, even siblings, are not allowed in the PICU. Emoree was excited about meeting Anya today, and Anya has been doing so well I thought it might be the right time. We were all disapointed to find out we need to arrange special permission through the head nurse for Emoree to come in, and even that won't happen for awhile.

I stayed with Anya for a little over an hour today, because Emoree was getting antsy out in the waiting area with my mom and MomMom Cordner. They took out one of Anya's umbilical IVs today. They also told me that her chest closure is going to be on Monday, not tomorrow. It was nice to see her moving her arms and legs a little. She seemed a little agitated today though, ecspecially when the nurse had to do anything with her. I just have to keep reminding myself little steps, one day at a time.



 







Anya Leigh Wockenfuss

~Anya Leigh Wockenfuss, 1 day old~

I'm a few days behind, obviously I've been a little busy :) Anya Leigh Wockenfuss was born at 3:24AM on Monday, August 27th 2012. She weighs 6lbs 2.8oz and is 18" long. My labor was less than 3.5 hours, and I got my VBAC!! I will warn you now, this post contains bloody birth photos.

Saturday August 25th I had decided to "deep clean" the living room to get rid of all the dust and cat hair. I was literally scrubbing the walls and on my hands and knees scrubbing the baseboards. I figured it would just be a bonus if I went into labor, right? Well, it didn't put me into labor, or so I thought... I started leaking a tiny amount of fluid, and didn't think anything of it until the next morning. It really was just a tiny amount. I went all day Sunday wondering whether or not it was amniotic fluid, even until almost 10PM Sunday night when I called my OB's after hours line and asked what they thought. They said for the small amount I was describing, it probably isn't amniotic fluid, so that eased my mind some and I went to bed.

~12:20AM, Last picture of me pregnant! 37w5d~



Two hours later, at exactly midnight, I woke up as I was repositioning myself in bed and I felt the definite "this is my water breaking" gush. I got up and went to the bathroom, and let my mom know "this is definitely it!". She called Mom-Mom Cordner to come meet us so we could go to the hospital.

~3:14AM, trying to rest before pushing~



I had my first contraction at 12:23AM 8/27/12. My second was at 12:30AM. By the time I had the third at 12:36AM, we were in the car on the way to the hospital, a 15-20 minute drive that is much quicker in the middle of the night rather than during rush hour. We got to the hospital at about 12:50AM and contractions were 5 minutes apart. It only took them minutes to get me into a room, and contractions were already 2 minutes apart. At about 1:30AM they checked my cervix and it was 5.5cm dilated, and 100% effaced. My blood pressure was very high, so they put oxygen on me. At this point I wasn't getting any time to rest between contractions, and I requested an epidural. By 2AM the anesthesiologist was in the room. It took over 45 minutes from the time they came in the room until they had the epidural in. It took so long to position me on the bed, wait between contractions that never stopped, and then I got poked 3 times to get it in just right. Compared to having contractions at the same time, the epidural did not hurt at all, honestly! I was 10 cm & +1 station and ready to push by 3AM and the epidural was finally in. I did two sets of pushes before deciding that I wanted to try and rest through the next few contractions so she could come down on her own.

 

I only got to rest through 2 or 3 contractions before Anya started having decels in her heart rate, so they said it was time to push. After less than 10 minutes of pushing, Anya was out at 3:24AM! She cried right away loud and clear, and she looked GOOD! She wasn't blue at all! In fact, her apgar scores were 9/9! Within 2 minutes they took her out of the room to clean her up and access her. I was very happy that MomMom Cordner got to cut her cord!

 

I didn't expect them to bring her back in to me, that was a great relief to see she was stable enough that I could actually HOLD her for a minute!! It was just a minute, but it was the best one :) Then they took her away to the NICU.

 

The birth photos are extra bloody because I lost a LOT of blood, 1200cc. It was more than with my c-section with Emoree, when I lost 800cc. At first I was afraid I had uterine rupture, which is a risk of a VBAC, but it wasn't. I was torn up internally and externally, and had to have an hour of what I call "vaginal reconstruction surgery", because they literally spent an hour stitching me back up, at least 15 stitches. For this I was very greatful for my choice to get the epidural!! Sometime either during or after the stitching I almost passed out and they had to put me back on oxygen. A few hours later once the epidural started to wear off, I was in serious burning pain and begged for pain medicine, which they brought me 2 percocet which made me sleepy ALL DAY.

 

~1st NICU photo, 3 hours old~

 

Grandma & MomMom Cordner got to see her in the NICU first, at about 6:30AM while I tried to sleep. She looks so good for being a heart baby!!!

 

It seemed like it was taking them forever to decide to move me from Labor & Delivery down to the Postpartum Unit. They did have to wait for x-ray come in to do an x-ray on me first, because they lost a piece of gauze during delivery and had to make sure it wasn't inside me. Luckily, it wasn't. Around 11:30AM was the first time I attempted to get out of bed to go to the bathroom. The nurse helped me into the bathroom, and I immediately started feeling strange and asked for help... they got me back into the wheelchair just in time because I passed out cold! I was awoken by my mom yelling at me and slapping my face, and then right after they put oxygen back on me I didn't know where I was, I thought I was in a different room. They left me sitting in the wheelchair for a little bit before moving me down to the Postpartum Unit.

 

Once downstairs in my room, I took a nap for a little bit before they finally brought me lunch at 2PM. Poppy Cordner brought me a special doughnut :) The Cordners left, and my parents had to leave to take Emoree to her pre-k meeting to meet her new teacher, which Emoree enjoyed. Meanwhile, around 3PM my nurse took me to the NICU to see Anya for the first time :) I would have gotten to go sooner, but with how dizzy I was I wasn't stable enough to go earlier. It was nice seeing her, but I couldn't stay long. It is so hot in the NICU, and I was getting sleepy. My parents brought Emoree up to the hospital afterwards to see me, and Emoree got to open her big sister present :) She couldn't go to the NICU to see Anya because she had started with a cold on Friday.

 

After my dad and Emoree left, my mom and I went back to the NICU so that I could see her again and get pictures of her. My mom stayed with me both nights.

The next day, my mom and I woke up by 5:30AM and couldn't go back to sleep, so we decided it was a good time to go see Anya. We stayed until shift change at 7AM, when they ask all visitors to leave during change of shifts. We went back to my room, and I had breakfast, they took my IV out, and I took a shower. My mom left for a few hours to do some things at home, so I went back to the NICU to visit Anya and take more pictures of her :)

 

Anya's sats were running a little higher than the cardiologists wanted them to, but she was stable and doing well so she did not need to be intubated before surgery :) At this point, she had 1 IV in her arm, and two in her umbilical artery. Dr. Kaushal came in and talked to me on Tuesday (when Anya was 1 day old), and told me that surgery would be the next day, at 7:30AM. I was surprised and relieved, knowing that at 2 days old Anya was stable enough to have her first open heart surgery.

 



So that night before her surgery, I made sure I got to hold Anya as much as I could :) I was absolutely content sitting there for 3 hours holding her, not caring at all that my dinner was sitting in my room getting cold. Her MomMom, Poppy, and Aunt Mary Ellen also came to see her that night too. After they left, my mom and I went back to say goodnight to Anya around 11PM, knowing we would be up early the next morning.

 

 

So that is my little miracle! Her surgery day will be in a seperate/next post to come.