8/6 1:06pm

Ryleigh's heart pacer wires are out! She's doing it all by her self! They are giving her, her final blood transfusion then the chest tubes will be out next this afternoon! She's sleeping so peaceful. She's got the PICU team amazed. She's upto 14mls per hour now!!!! I'm gonna run out of milk! Lol lol time to go pump! :-) I get to hold her this afternoon, I'm going to cry just typing this, it's been so long I can't wait!!!

8/6 at 10:05am

Ryleigh is still defying the odds! What a trooper she is. She started getting fed to her small intestine on Saturday, but she has figured it out that it’s not going to her tummy and is one cranky baby! She gets her chest tubes out today and a feed study done to see if she can begin eating to the tummy, if she does well, she may skip the NJ tube to the belly and get the bottle, nice! Either way she...

will be content once she gets food in the belly. So today will be another day of healing and hoping. I am hearing rumors that she may be home very VERY soon! Yesterday they were feeding her SI 6ml’s an hour, wow, I am going to deplete my reserve at that rate, lol. She looks good though, pressures are nice, oxygen great, heart is smooth, wonderful. I may teach her how to live life, but she teaches me the meaning of it every day!

August 4, 5:09pm

Ryleigh is VERY vocal today. Her ventilation tube came out and a nasal feeding NG tube went in. They are going to start food tonight to her small intestine to see if she can tolerate. I am so glad to have that ventilation tube removed, but they stopped her pain meds until her vitals shows she needs them, poor thing she looks so uncomfortable. She’s on heart meds so if she gets pain meds it further...

lowers the heart rate. She has her moments of peace though, sis starting to look more and more like the baby I had before surgery. Each day is healing!

 

Monday she gets her chest tubes out and then we can start holding her again Tuesday!!! So Excited, she loves her head rubbed and for me to talk to her, she knows I am here and I am sooooo in love. What an amazing (and very feisty) little pea pod!

Emotions that set in...later that day...8/3

Just got home from visiting Ryleigh, poor thing is so miserable, she is fighting the tubes, makes me sad, she looks at me begging me with those eyes to do something, she looks so uncomfortable, I wish I could, breaks my heart, but tomorrow the ventilation tube down her throat will be removed, yahoo.

 

Hold tight sweet girl, soon comfort will find you, and your paci too. Can’t wait to bring her home ...

and really “baby” her!! Can’t wait to hold her, can’t wait to touch her again, can’t wait to smell her, can’t wait to kiss her, can’t wait to dress her, bathe her and change her…so many things I miss and can’t wait to do.

 

Love your babies; take nothing for granted even the small things like a simple touch, peck, or hug. I would give anything to rub her little feet.

72 Post Surgery 8/3 10:04am

Ryleigh is out of surgery. Her chest is closed. Yahoo. It went very smooth. We are officially on the mend now. She will be heavily monitored for the rest of the day, word is she may get off ventilator/breathing tube tomorrow afternoon and I've requested to have her paci ready!! She was still under sedation and a paralytic when we saw her, but they said she will be awake in an hour and more alert tonight. So proud of her!!!

48 Hours Post Surgery 8/2 4:49pm

Whew we are 48 hours post op and so far she is TEXTBOOK truncus heart baby! She is still holding her own, a lot of the meds have been decreased, so they are weaning her off, which means she is doing more of the work. Her chest closure is set for Friday sometime near midday, it will take a few hours and then she will be sleepy from the sedation. I am excited because if she stays this way, we were informed by her cardiac nurse that we will start to see some of the tubes, wires, and IV’s removed this weekend and ventilation probably by Sunday, even better news, IF she stays this good, she will be moved to the almighty 6th floor (the 6th floor is STEP DOWN) mid-next week, yeah baby girl! She will spend about a week in step down if she eats well and vitals stay like this, so in 2 weeks from tomorrow she could be home, in her own bed (but she can’t have visitors for a while, sorry)! S

 

tep down is the integration unit where the parents provide most of her care, the cardiac nurses will teach us how to care for her and her needs, educate us on what to expect, and observe. Most babies get held in step down because they have problems eating, but Ryleigh is a head of the game because she was eating for 6 days before her surgery, sooooo she has developed the breath-swallow-suck skills – so we are encouraged by this, which is also HUGE, oh and she loves her paci which is also a plus – it’s good for heart babies (or poor feeding babies) to take a paci if possible, faster skill development!

 

The chest closure will be a huge milestone and of course when she eats through her NG tube this weekend will also be a huge milestone to see how her gut handles the blood flow and her heart handles the strain. The most action we saw today was the nurse treated her left eye for a clogged tear duct, . She is moving so much now, they had to weight her arm down because they are afraid she will grab her ventilator tube and pull it out. She doesn’t like it and I don’t blame her. I think she handled this surgery better than most adults!! My new normal is setting in and I could not be happier I am her mommy, at least I know under my wing she will be well cared for and loved by all those in her life.

 

My heart hero, Ryleigh, we love you sweet girl!!!

24 Hours Post Surgery 8/1 at 4:06pm

Ryleigh has officially made it 24 hours post op with OUT any issues, her vitals and gases are all great. She had a great night, she is on a diuretic to drain some of the excess water so they can close her chest on Friday, we heard they might do that tomorrow, but the chief surgeon just came in and said Friday, that’s ok because that means she will soon be off bypass and her drugs will be decreased

so we can see what her little body can do on its own. She is comfy and on pain meds, lightly sedated, we can talk to her and she opens her eyes and raises her little hands – she knows we are here. They plan to remove her chest tubes, breathing tubes, and life-support on Friday as well. She got one line of about 20 out today. She is doing great, best case scenario she is so far, but we have a long way to go.

 

She has one dedicated nurse each shift and they are AMAZING! All in all I am amazed at her resilience and strength, her heart is doing great, the next major milestone will come when her chest is closed and tubes are out – we can see if she has what it takes to function on her own (which I know in my heart she does, she just must!). It’s good that they want to remove this stuff quickly so she doesn’t become dependent. I am one proud, encouraged, deeply in love momma. I am so fortunate I am her momma, I have learned so much from her 8 days of tiny life. I hope this encourages all parents to go and hug your children a little tighter, love them a little deeper, and enjoy them - every moment you have them.

 

I banned photos of her while her chest was open and her chest tube is in. I don't want to remember her like that ever again, I hope when she is older she is ok with that.