Cayleigh Jean turns 1 month old today
I can hardly believe it's been a month already. It seems like just yesterday I was at St Joseph's about to go in for my c-section. Though I don't think about it often, I do recall that right before going in to the c-section I felt like something wasn't quite right. Then came the horrible surgery story and us being told she likely had Trisomy 18. Hey doc, guess what? SHE DOESN'T! Praise the Lord!!
My little princess turns 1 month old today and she's made incredible progress so far in alot of areas. She had her g-tube inserted via surgery the day before yesterday and today she got her first feeding. They started slow on 5 ml and checked 1 hour later, I guess 1/2 of it came back. Her nurse, T, told me that is relatively normal with g-tube babies on their first feeding because they haven't had any food for the prior 24 hours. This evening Nic told me, as I was driving back home in the San Fran traffic, that they'd started her on another round of her 5 ml and that they were going to wait 2 hours this time to check digestion. Let's all pray she begins digesting her food well and tolerating it without problem.
Dr. Herosi was in to check on Cayleigh while I was cribside. We, T and I, had just gotten her dressed in her "Daddy's love" outfit. Though she could fit in a Preemie outfit (which is the first one I tried on her), she is very stiff and gets upset when you try to put her arms into the sleeves. Imagine if your elbows were bent and hands out in front of you... and then try putting a long sleeved shirt on. You can see how that could be a problem, right? So anyhow, we put the outfit on her, leaving a button undone over her G-Tube and her right leg out because she had an IV in that foot. The Dr. came and unbuttoned her outfit and noted that the right side of her belly looked a bit bloated. I, too, noticed this. T tells him that when she got on shift it looked this way. He pushes around on it and watches Cayleigh, who is awake, but she doesn't so much as flinch. One of the Ped doctors is there too and is looking at her. I ask him if it hurts her? He says it doesnt appear that she is in any pain. I tell him that she doesn't cry. The Ped agrees with me - and then T says that when she is uncomfortable she makes the whincing face (but used a more professional term for it) to let us know. He says he doesn't think it is a problem and to go ahead with her feeding. (this is right before the first feed today)
I button her back up and begin holding her. I sing to her, pray over her, hum alot and cover her in kisses. I try not to breathe on her because my ears are a little itchy and I don't want her to be exposed to it. That's the problem with not being up at that NICU 24-7 - you get exposed to the other people in the hospital, the streets and the parking garages. Then, you go home with 3 kiddos and get their germs. It's a germy place out there.
Nic and I take turns going in with her today because Juliette is with us. She really takes the day like a champ. I take her down the the 6th floor in the Family Resource Room where there is a wall of toys arranged in new packaging. There's a small room with about 8 tables and a bunch of kiddos, some with parents, some with nurses. Some of the kids are sick and from the cancer floor above. They all vary in ages too. Juliette and I are sat down at a small table with a light skinned woman and her 2 year old son. He's got short, curly hair and big brown eyes. I notice he has an IV in his right forearm. It must be a central line. I look at the mother and then back at him. He's wearing a hospital gown and little pajama pants under it. He doesn't seem to feel very good. Juliette, in her innocence, asks him what's on his arm. he tells her its a thingy that they give him the green stuff with. radiation springs to my mind. He's 2. almost 3. I look at Juliette, stroke her soft brown hair and kiss her on the head. I am reminded at just how fragile and precious life it- and how blessed I am that she is healthy. I think to myself that she is looking at me how I look at other mothers with healthy babies my Cayleighs age. It's not a look of jealousy but of "I hope she knows how lucky she is" and "We'll be there one day".
During the game, Hospital Bingo, we learn that EVERYONE wins. even the kids playing in their beds. Some are too sick to come around other people with chemo and whatnot so they can play in bed by tuning into the channel that they were filming the game on. They go through, B "heart", N "social worker", G "kidney", O "radiologist". I'm half glad they are making the hospital less scary and half sad that these babies even have to know these things. The room is also filled with siblings of the patients too, like Juliette.
Juliette and the baby at our table, I call him a baby but he's almost 3, have the same card. The mom and I talk a little bit and Juliette helps him when he doesn't cross off the ones they've called. She's good at being bossy. :) They both win! Yay! Juliette is off to claim her prize -a pair of Barbie dress up high heel pink with butterfly shoes. Oh boy. They're too big, but you already know she wore them.
We do our switching throughout the day. Cayleigh's IV in her head, toward one of my last vists, has a purplish/red spot. T tells me she is watching it. That she must not have the greatest circulation (duh, she's laying in a bed all day) so it could start to collect fluid. At which point I'm sure they'll take it out. Then she'll have 2 in her feet. I'd rather them in her feet myself. Actually, I'd rather her do really well with the feedings and then not need one of the IV's at all. and, she WILL.
So during my last hold I noticed that Cayleighs O2 would go down slightly, 80s, and not her heartrate. She did this a few times. T was over and suctioned her. Only one time in the nose she got something. Nothing in the mouth. She says that when a baby gets the G-Tube its very tender in their tummy and so they hold their breath so that it doesn't hurt when they breathe deeply. She says to just rub her or rouse her a bit to get her to start breathing, just a little quicker and with lighter breaths. I tell myself she only did this because she'd just had her Tylenol suppository (which, I asked for and it was time for).
This morning, daddy bough Cayleigh a huge Elmo Happy Birthday balloon. T, the nurse, came back with a gift for Cayleigh too. She whispers to Nic not to tell any other parents. It's a beautiful, super soft, rose swirl light pink pattern fur on one side and a soft velvety other side. It's really beautiful.
I can't think of anything really else that happened other than that this going back and forth is for the birds. It's ridiculously expensive to drive back and forth even 3 days a week with gas in a van, snacks to eat, the bridge toll, then parking. *sigh* You're looking at almost 100 bucks three times a week. and that's not even how often we WANT to see her. God is really good and is blessing us - and we're trusting in Him for this and every other area of our lives. Most of the families there stay at the Ronald McDonald house - so please pray we get in there soon. It's be great to get a family room so we can bring the kids and not worry about racing back to pick them up from school.
Please pray for Cayleigh
Pray that the swelling/bloating in her tummy goes down
Pray that she tolerates and digests her feedings wonderfully
Pray that she has no secretion build ups
Pray that she starts swallowing
Pray that she gets to come home soon - with no problems! :)
PS Cayleigh coo'd just a few, very soft times today - T heard it too.
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