On June 7th, After 5 weeks of being away, Ryker was moved to the recovery floor!!!
It was a long awaited day! Thinking back to 5 weeks ago (last time on the floor) to the Friday morning that the NP had told us that Ryker's broviac line would be removed on Monday & we would be home within 48 hours after that, makes me a little sad thinking that if we hadn't have had this hurdle we would have had Ryker in the comfort of his home (our current home of course which is a hotel room...but still home!:) for 5 weeks now. But at the exact same time I am SO grateful that we had that hurdle while we were still in the hospital & not in a panic at home, especially with finding out about his PVS & that in fact he needed another operation!! Obviously Ryker knew there was something else wrong & that was his only way of telling us :) So-SO grateful things have all happened the way they were suppose to because we still have our beautiful baby boy here with us & God is wonderful!!! :)
So each day we have been here on the WONDERFUL floor my sweet Ryker gets better & better! His skin tone is slowly going back to normal & his smiles & enthusiasm are coming back. He is the sweetest happiest baby regardless of all the horrible things he has gone through! Each day the nurses & Doctors have come in the to see him & they are always so pleased with how well he is doing & how he is always so alert & happy :)
Braylee & Addi were able to come to his room TOGETHER for the first time, that was such an amazing feeling to see them both just be together admiring him, kissing him & of course wanting to maul him to death :) His sisters love him SO much & the both LOVED this opportunity!
From June 9-12th Jason's sisters came to Boston to visit. It was SO great to see them all. I loved every second that they were all here & I am SO grateful that we have been on the floor for their visit so that we could all spend time together! It was a great visit...a little too short, but great!!
One thing I had never talked about up until the time of their visit was something that I have been dealing with emotionally for a while- Every time people come to visit I get overwhelmed with horrible anxiety. I have come to many conclusions for this extreme anxiety & have been unable to pinpoint the exact cause, but maybe it's a combination of a few things-
One being the fact that my sweet baby has been through SO much & my instant instinct as his Mother is to protect him (not that he needs protection from the people that love him so much) But because of all he has been through I want to shield him from any possible judgment or negativity that anyone else that is not his own Mom or Dad may have.
Second is that I have to be there for their initial reaction when they see my poor sweet baby in the condition he is in & I am not in a good enough emotional state of my own to be able to support someone else emotionally along with myself...like when my Mom came that very first time I felt like I was going to collapse while walking her back into his room, knowing that I didn't have anything left in me to give & she couldn't fall apart on me or I might lose control of my emotions even more than I already had! Thank goodness my Mom held herself together very well regardless of how emotional it was & I never felt like she needed to lean on me. :) Thank you Mom!
& third (the one I feel the very strongest about) is that I feel like every time someone new comes along that hasn't been here physically once before or for the entire time we have been going through this all, I feel like going back through the emotions is like tearing my wound wide open all over again, I feel like I finally get to a point were I can cope & that I am only crying a few times a week rather than daily or constantly & then someone new to it all comes to visit & all the old feelings come rolling back like we are starting over again. It has been a lot harder for me to deal with than I ever even imagined!
SO- it's been tough! Not to say I don't like visitors, I LOVE THEM! But it is just a hard few days before they get here & then once they are here & past that initial seeing Ryker, I am okay. This time though with Jason's sisters I felt so much better about it all. I still had the extreme anxiety leading up to their arrival but I think because he is on the recovery floor & doing so well that I didn't feel all the same familiar feelings I had felt before. That was great & I am so grateful they took time away from their extremely busy lives, husbands & kids to come spend some time with us getting to know our sweet baby boy & loving on my girlies! By the way Tiffany- Braylee misses you like CRAZY! :)
Now the following week since the sisters have left has been a GREAT one! The only goal in mind is getting weight on this sweet boy & let me just tell you how good that feels to have that be our main focus!!! :) :) It feels freak'n fantastic!!!! :) LOL!! It feels so good to feed my baby a bottle, burp him, change him & other than the very few cords left attached to him & the frequent meds- I feel like he is a normal baby!
I don't think that anyone realizes (myself included) how much we take advantage of the simple things in life, but especially when it comes to having healthy baby! Being able to walk around your own HOUSE not hospital with your baby in your arms without having to either pull an IV pole along with you or not be able to go far because his cords wont reach his monitors.......Things I never even thought of. It is so great to be able to hold him up on my shoulder & snuggle him like I always did pre-op, to be able to snuggle him for so long & hopefully soon- as long as I want to without someone telling me they need him back for vitals, meds, etc. The simplest thing like YOU the MOM being able to make all the decisions for your own baby & not having a doctor tell you what needs to be done or literally BEGGING for weeks for my baby to just have a little lactobacillus added to his diet! It's all the little things that I can't wait to NOT ever take advantage of again once I have this sweet boy at home all snuggled up in my arms! :)
On June 13th We Finally got to get Ryker's 84 day old Broviac Line removed!!! :) This was the one thing our last time here on the floor that was holding us back from going home. (Thank goodness it did in our case) But I am so excited to have it gone! I have always been so nervous having it be a source to infection since it has been in for so long! He got it put in on March 23rd with his 2nd heart surgery (removal of his PDA vessel) A Broviac Line is more frequently used in heart patients for a more permanent form of IV access that goes straight through his belly & directly to his heart, so that all meds that go through it are in his blood stream almost instantly. They also are able to pull blood draws for labs off of it, so it has been very nice to have so that he doesn't have to get poked constantly! But now that he has been on the floor for a while it hasn't been used in some time & it cracked for the 4th time, so it is time to take it out!
Originally the plan was to have Ryker go to the O.R to get the broviac removed, but because of a busy morning at the O.R they decided to do it in one of the back rooms of the CICU. I brought Ryker to the CICU at 6:30 that morning & when the team got there to get all set up I went to kiss Ryker to leave (figuring I couldn't be there for it, it's considered a sterile/surgical procedure) & the Doctor (the same amazing one that has told me that I deserve Mom of the year :)-we love him:) said "Mom, if you would rather stay we would love to have you here!" I said "I didn't think I could stay" & he said "You've been here long enough & seen more than most parents do. I know you can handle it if you would like to & we all know that Ryker would do a lot better with his Mommy by his side!" So of course, me being the control crazy Mom that wants to be there for everything possible so I can be by my baby's side, I stayed & I am so glad I did! It was hard to watch at times but also very neat experience to be able to be right by my sweet boys side during a surgical procedure!
After his broviac removal Ryker & I had to stay in the CICU until his sedation meds wore off. I was happy to do this because I got lots of snuggle time in with my sweet boy & LOVED every second of it!!
As of now (June 15th) Ryker weighs 7lbs 4 oz (3 months & 1 week old) & all our focus is to get some meat on his bones! Dr. Del Nido would like Ryker to be as close to 10lbs as possible before he will take him back to the O.R for his Glenn procedure. So we are doing our best to get him there as quickly as possible so we can get him healthy & home sooner than later!
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| My girls first time being together with Ryker since we were at home 3 months ago...It was PRICELESS!!! |
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| Addi loves her baby :) |
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| Love this boy more than words can say! |
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| The two men in my life! Love them SO much!! |
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| My husband is SO AMAZING with our sweet baby!! |
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| Such a good big sister!! |
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| All three of my babies!! |
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| Ryker loves to stare at his sweet sister |
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Ryker with his amazing Aunt Tisha! (that would literally do anything for him! Thank you Tisha for all you do!!!)
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| Addi & Tisha |
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| Ryker loves his Aunt Jess :) |
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| Snuggle time with Aunt Tiffany |
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| Daddy loves his baby!! |
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| Braylee is so good at holding her baby brother! |
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| Ryker squeezing Braylee's hand :) |
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| LOVE THIS!!! |
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| This one brings tears to my eyes! SO SWEET!! |
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| Ryker holding Addi's little hand :) |
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| She sure loves her brother! |
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| All cuddled up in his new bouncer (from his Aunts Jess, Tiffany & Tisha:) |
