we are home and happy to be home! i just wanted to sum up the rest of our hospital stay... knowing that we were going to be here for the weekend, we settled in and our days were a bit more relaxed. we just need her drainage to slow enough that they can remove the tube. all her other lines and wires have been removed and it's much more comfortable to hold her and nurse her. every day, our little girl seems more like herself. more smiles. more goo-ing. more pointy fingers. we're so grateful to have a private room but baby girl does NOT sleep well here. she's up at least 4 times each night and mommy is t-i-r-e-d. one night the nurse decided to do a blood draw at 4am, so you can imagine how happy we will be to go home! j & i talk about how strange it is how life is just going on without us outside the hospital walls. we are missing birthday parties, family dinners, work, etc. it seems unfair. and then the little girl from down the hall walks by with her chest drain catcher thing [official name]. she was here before we got here and she will be here when we leave. that's not fair. and i think about the young mom in the room next to us with her baby. the entire time we were there, i never once saw a visitor. no father. no grandmother. no friends. that's not fair. there are a lot of things about life i don't understand. but i believe God has a purpose through everything that happens. i believe His love never fails. and the verse that came to me the day she was born carried me through this hospital stay... great is his faithfulness.
Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:22-23
day 6 brought some sunshine. the art line came out today and we were able to take our little one for her first walk since surgery. it was nice to have this little bit of normal. a little more freedom. we packed up her chest drain catcher thing [official name] and headed out to the 'deck'. it's so wonderful they have this little outdoor space for the kids and we soaked up our vitamin d. there is a narrow stiff couch in the room, which is where i slept. the night before i had planned to sleep in the room also, but headed upstairs to the ronald mcdonald house after her heart rate alarm went off for the 4th time in 2 hours. i fed her at 1am & asked the nurse to call me when she woke up. she usually sleeps through the night at home, but with the constant checks and prods throughout the night, she was up & ready to eat again at 5:45am. i was happy to get 4 hours of straight sleep and i have i mentioned how totally amazing the ronald mcdonald house is?! make sure you put your dollars in the little boxes at the mcdonalds drive thru. we have made much progress and her goals now are for her chest drainage to slow enough they can remove the tube and they are still working on getting her calcium levels where they should be day 7 was a roller coaster day. i woke up with a very stiff neck from the lovely little blue couch. they needed to draw blood to check her calcium. previously they had been getting her blood from the art line, which was now out. they tried to draw from her central line, but had no luck. they decided to take the central line out [of her neck] and hoped to get some blood when they pulled it out. no such luck. [this was very painful to watch and lots of screaming was involved...not a nice start to the day.] her poor little neck was raw from all the tape that had been holding the line in. they also mentioned that her mt drainage was up from they day before. this was extremely frustrating to hear as this meant the drainage tube would be in for a few more days and that would put us here over the weekend. we had still been holding onto hope that we'd be home friday. i promptly texted j [he had been moved from the ronald mcdonald house upstairs to the one down the street, so he was now a 15 minute walk away rather than a flight of stairs.] this was an overwhelming morning and i needed some support. i am so blessed to have this man in my life. he was here within minutes with a cup of jamaican me crazy coffee in hand. my rock. after two attempts they finally got the blood needed from her foot. more screaming & crying involved. it's such a horribly frustrating thing to watch your baby uncomfortable and in pain, day after day. for awhile i would have to keep reminding myself that baby girl just had surgery a few days ago. she was like a little zombie and i could not get a smile out of her. i would get nervous that something was wrong and i'd never have my happy smiley baby girl back. however on day 7 after the surgery, our day got much brighter. we got our first real smiles since surgery! so, so good to see that sweet smile again. a smile that brings joy to my soul.
thank you, thank you for your continued prayers and loving comments. it's always so wonderful to read your encouraging words and i often read posts out loud to j. we appreciate you.
day 4 after the surgery [day 5 in the hospital] was another heartbreaking day. our little girl was finally awake, but we could not pick her up to comfort her. she cried quite a bit and i wanted to crawl into her bed and hold her. she still had her ventilator in and it was so pitiful to see her crying with no sound behind the cry. she made big steps in weaning off the oxygen and they told us the ventilator would likely be out the next day.
day 5, as we rounded the corner into the bay the doctor announced we were just in time to see the ventilator come out. although this was an exciting accomplishment, it was heartbreaking to watch...and a rather traumatic start to the day. they counted down and the tube came out quickly, however the next moments felt like an eternity as we watched for her to take her first breaths. the nurse pounded her back, encouraging her to breath while another suctioned her mouth. she choked and gagged and let out a silent wail. they assured us she was breathing and she would be quite hoarse for a bit. they moved us from the bay to a private room, located right around the corner, still in the CPICU. it was a nice change...quieter, a couch to sit on, our own bathroom. we had another scare when her heart rate dropped while she was sleeping. the monitor alarmed and i watched the red number flashing. after nurses & doctors studied her rates, they assured us it was totally normal and she was doing fine. as i sat on the couch staring at my little trooper, i thought about how ready i was to go home. how glad i would be when this week was finally behind us. this challenged me to look for the beauty in today, to focus on something i was grateful for. that beauty is captured in the picture above. the nurse showed me that i could hold fabs on my shoulder, even with the ridiculous trail of cords, tubes and wires. it was like holding her for the first time. maybe even better. "it feels so good", i whispered to justin. me and my baby, chest to chest just 5 days after open heart surgery. later on, justin sat down to hold her and i told him he had to try putting her on his shoulder. after we twisted and twirled and tucked cords and tubes and wires, he gently lifted her to his shoulder. he let out a contented laugh. fabs snuggled into her daddy's shoulder.
and it hit me...we were all here.
and i am entirely grateful.
Give thanks to the Lord, for He is good. His love endures forever. 1 Chronicles 16:34