Welcome Home Anya!

So here is the post I've been excited to finally be able to write... Anya is home! She came home on Tuesday, October 16th about 4:30PM. She is doing fantastic! She weighed about 8lbs 2oz when she came home, and is now 8lbs 8oz just 5 days later :)

Pictures from her hospital discharge:

 

I was so excited to FINALLY for the first time ever be able to pick her up, unattached from all wires and tubes!

 

 

The first night home was a little rough. Anya woke up at 5AM (1.5 hours before her contiuous feed ends) and started throwing up, 4x in an hour. I stopped her feed and elevated her bassinett mattress (so she is inclined and not laying flat), and she has had perfect nights ever since! She sleeps through most of her continuous feed, which means Mommy gets about 7 hours of straight sleep :)

 

I could not wait to give my stinky baby a bath. At the hospital, all they could do was sponge baths so I couldn't wait to give her a real bath! Pictures from her first and second baths:

 

Other pics at home:

 

 

Anya gets 7 different medications daily. She gets a lovenox injection twice a day, asprin 1x/day, multivitamin 1x/day, lasix 2x/day, captopril 3x/day, reglan 3x/day, and zantac 3x/day. Luckily, her g-tube makes giving meds easy, except for the lovenox injection. That goes in her thigh.

Emoree is a proud big sister :) She tells me whenever Anya is crying, whenever Anya poops, and when her feeding pump is beeping. She is very gentle with her and always washes her hands.

and finally, both my girls in their car seats :)

On Wednesday I took Emoree to Weber's Farm while Grandma watched Anya. It was fun just Emoree and me time :)

 

 

 

Some people say that breast feeding or holding your baby while bottle feeding them is the best way to bond with them. With some babies, that isn't an option. Anya is fed 95% through her g-tube and we have had no problem bonding. I sometimes even feel like I am bonding better with Anya than I did with Emoree at this age.

 

 

And here are some of the "newborn" pictures I've been waiting forever to take. :)



 and here is her birth announcement I am going to be mailing out to family :)



 









 







7 Weeks Old

Alot has happened in the last 3 weeks, the good, the bad, and the downright frustrating :) Hence why I have had no time to update my blog :(

I guess this is a good place to start. Two weeks ago, I got Emoree another family visit :) So she has now seen her baby sister twice in 7 weeks. She is so excited about her, and she asks me about her everyday. She wants to know what she is "eating", if I changed her diaper, if she was crying, if she was sleeping... she asks me everyday. I have not missed one day of going to the hospital to be with Anya, and I have also taken a picture of her every single day of her life so far too :) Anyway, here are a few pics from our family visit:

 

It was everyone's first time holding Anya, except for me, obviously :) Emoree is so excited to be a big sister <3

 

Now, for the not so fun. Friday, October 5th, Anya was scheduled for GJ tube/Nissen surgery. I was a little hesitant on the Nissen procedure, but after they actually decided to explain it to me and said it would help with her reflux, all was good. I went to the hospital to be with her before they took her, and she was so fussy and unconsolable. Her sats would dip because she was so upset. She was hungry, exhausted, but NPO for surgery so they couldn't feed her, she was just on IV fluids. Then they come in and tell me that her feeding tube surgery was cancelled, that because her sats are dropping and they had to turn up her oxygen so they want to do a cardiac cath instead. I was so not expecting this, I was so upset. My mom left work to come stay with me while Anya was in for her cath procedure, it was a few hours. Turns out, her heart looks great. There was only slight narrowing between her right ventricle and pulmonary arteries, so they ballooned it to widen it but it wasn't enough to explain her de-sats.

On Monday October 8th, they decided to do a ph probe test to see how bad her reflux is, to see if doing a Nissen was necessary. Finally, something that made a little sense. During the test, they put in an NG tube to feed her, but then would have to take it out after feeds and meds to get an accurate measure on reflux. This seemed to be the "magic" cure for Anya, removing the NG tube. She totally went off of the nasal cannula! It seems the NG tube was causing her reflux, which led to her desats. Take it out, and her reflux is minimal. So on Wednesday October 10th, Anya had G-tube surgery and it went great. No Nissen, no J tube. Just a "traditional" G-tube. She has been off of oxygen support since. I am now more than ever ready to bring her home <3

Check me out, with NOTHING on my face!!! Most of you already know, but the big day is tomorrow!!! This past Friday, someone from John Hopkins Peds Home Care brought me Anya's feeding pump that we will be using at home and taught me how to use it. The rest of her feeding supplies and formula are being delivered today between 5-9pm (because of my crappy insurance, her Enfaport formula is not covered, and I have a lovely $272 bill coming to me soon for her formula, but whatever it takes to get her home!). Her prescriptions were given to me on Thurs-Fri and I picked most of them up on Saturday (one I need to get the day she is discharged because it is only good for 14 days from the day it is mixed). I've learned how to give her all of her meds, including her lovenox injections that she gets 2x/day. I've watched the g-tube video, and the infant CPR video. Her carseat has been installed in my car for weeks. I am SOOO BEYOND READY to bring my baby home!!!

Yesterday was my first day back to work since 170 days ago, the end of April. It was quite a surreal experience, but went better than I expected because I was terrified to go back :) Trimming dogs faces took me a little longer than it used to but everything else I did pretty quickly and all went well :) I'm only working weekends (all Satudays, and about every other Sunday), so it works out to only 3 days in October, 6 days in November, and I'm working a few extra in December for the holidays so that will be 9 days. Not too bad!

Here are a few Anya pics from the last 2 weeks:

 

Now I can't wait to take pictures of her at HOME. Unattached from all the wires (respiratory lines & pulse ox). She will have a pulse ox monitor at home, but I only have to spot check her, not leave it on.











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. 









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!