a December update

We've been busy this month {at home} doing a whole lot of baby stuff, with a little bit of Christmas and birthday fun in between.













I'm sorry I haven't been updating my blog very often, it really is taking all of my time to take care of Rosemary and the other children. I will update as often as I am able, but know that I think of you all often!! She is doing well, she had a CT scan today, we should know the results soon.

red

Red is popping up everywhere in our home this weekend. With that more sewing and knitting projects are popping around in my mind with no true sense if any of them will be completed this year . . . I’m taking each day as it’s given to me and trying not to look too far ahead.



Some specifics to pray for: Rosemary to not develop Hydrocephalus and therefore not need a shunt, also for her to continue to gain weight and eat more by mouth, that her next swallow study with show no signs of aspiration so we can nurse safely again, we can stay home the whole month of December with no hospital visits.

surrender

Early this morning, I packed up and drove back over to the PICU. Rosemary got admitted last night for an infection in her Central line. While she has slept most of the day, I have been catching up on some knitting.

Over the past week at home, she's been growing and has been happy, but late last night I knew something wasn't right. She wasn't herself so we decided after several conversations with doctors to bring her back in. As of now, we don't know how long we will be here. All the while, I'm learning more and more what it means to surrender . . .

autumn light

Coming through the kitchen this afternoon and seeing the table lit up with sunlight stopped me in my tracks to take a breath and then turn to search for my camera. The rhythm of our days has really picked up. Even with being home after 18 days at the hospital with Rosemary, my daily schedule is slam packed with taking care of her needs. I need more moments like these, to be able to soak in something simple and beautiful around me. Here's to looking for some simple and beautiful things to lighten and brighten my soul each day.

Feeds

This little girl . . . oh my, she is full of surprises (and she's probably thinking the same about us, ya know!) I can hardly keep up with the fast pace of all the changes around here (yes, we're still in the PICU). We are increasing her feedings in her g-tube because, well, she is tolerating everything so nicely so far. She just took her first 15 cc orally, horray! So I've been busy writing notes up on the white board in our room, charting cc's per hour, trying to wrap my still somewhat baby-brain around all the math, conversions with her weight and ounces she is consuming!!

Now she's back to sleep, tummy full, and happily dreaming girly dreams!!

new gadgets

At the hospital, we sometimes have to be a little more creative at stimulating our babies. We’ve had some visits with OT and PT during our recent now 11+ day hospital stay. Together, we decided that Rosemary could benefit from a little mobile stimulation. So we strung a line over her bed between two hanging poles and hung a Stim mobile that was ordered from Live and Learn. We hung it this morning and she has enjoyed staring up at it all day, along with listening to the classical music playing from the local NPR station on our laptop. It does a mama good knowing that her baby is getting some good neurological stimulation even in the hospital!

She is recovering well from her Nissen and G-tube surgery yesterday. She is being fed today with her G-tube – currently at 10cc/hr and is tolerating it well so far. So things are looking up! pa-dum-pum

today I'm . . .

Sitting and waiting, and knitting, and blogging, thinking and praying for my little girl.

Rosemary is currently having Nissen surgery addressing her reflux.

we're still here

Hello all . . . we're still at the hospital taking care of Rosemary. She is doing much much better. No apnea episodes in over 24 hours! That makes me so happy!!! When we're in the middle of a clump of these episodes it sometimes feels like they will never stop. They seem to stop however when she reaches certain levels of seizure meds, so we're thinking they are seizure caused or related as well as enhanced possibly by her reflux. We still don't know for sure. She will be undergoing a Nissan surgery next week for her reflux which will eliminate one of the variables from these spells. We're hoping she will never have another "blue" spell ever again!

She has been sleeping a lot today and hopefully won't keep us up all night. Good-night all and have a safe weekend!!

we're back . . .

in the hospital, that is! Rosemary turned blue again on Sunday afternoon. She's had a rough couple of days, but she is doing MUCH better today!! Her seizure medication levels got low, and I believe (we still don't know for sure) that these apnea spells, where she turns blue, are seizure related. There still is a Reflux piece to this puzzle that we're still sorting out which we are trying to get resolved (meaning surgery) as soon as it is safe to do so. This little Bug-a-Boo is a fighter and tells us so well when she needs something.

our Halloween ~

Early afternoon, we brought the pumpkins into the kitchen. The kids picked out and drew their faces for their pumpkin, they were gutted and the carving began . . .

















. . . and a fun Halloween night was had by all!!

a new bonnet ~

I knew it would happen eventually . . . and who’s fault was it . . . mine! Rosemary’s feeding tube got caught between my leg and the side of the bed as I laid her down to change her diaper this morning. How stupid I felt!! After many phonecalls made and scheduled were changed, we got an afternoon appointment to take her to the hospital Radiology department as an outpatient to have the tube checked via x-ray.

In the meantime we had some time for a photoshoot of her newest hat and my latest knitting project {that I worked on the last three days of our hospital stay after things calmed down a bit.}









This pattern is Aviatrix by Just Jussi. I used Rowan Classic Yarns Extra Fine Merino DK. This was such a fun pattern, and quick! I'll be making more of these for sure - only used 1/2 skein.

{X-ray showed that the tube placement was still in the Small Intestine. Apparently I just pulled out the "slack" that was hanging out in the stomach area.} shew!

homecoming . . . #3

We're home again! Rosemary was released from the hospital on Monday. Because she now has severe reflux, we came home with even more equipment, an OD tube and a feeding pump.





Reading your comments has given me so much strength knowing I am not alone in this. I continue to believe in the best for Rosemary. My hope and prayer is that she will overcome this reflux and will be eating normal very soon.

This week ::

On Tuesday, Rosemary told us we needed to go back to the hospital. She turned blue - had an apnea spell - around noon on Tuesday right after a feeding. I got her on an oxygen tank we had at home and she was able to recover. This is the first time we've seen her do this. Hours later when we got settled in the PICU, she started to have more of these Apnea episodes. She had them from about 5:00pm to 11:00pm (every couple hours) that night until she fell asleep. None occurred during the night, but then they started reoccuring once she woke at 5:00am. Yesterday morning she had a EEG, and an upper GI test which both revealed a seizure and severe reflux component to these Apnea spells. She's now on medication for the seizures and reflux and is being fed by a feeding tube bypassing her stomach into her small intestine and has not suffered from any more of the apnea spells since!! We are so relieved that they have stopped. We're not sure when we'll be going home but will be giving updates as much as we can. This was such a surprise to us, but we believe that Rosemary will continue to let us know what she needs. We love her so!!!

some pictures

On the day I took this photo, We spent all day in our room together . . . eating, pumping, changing, bathing, and washing out wool diaper covers.





When I go back to look at pictures of Rosemary pre-surgery, I am so shocked at how different her head looks. It's so amazing!! Her eyes are stitched together in the outer corners. They did this before surgery because of the swelling around the eyes. She may be getting these stitches taken out later this week which will make her look even more different.

our week ::

We’re back in our nest!! We came home with Rosemary on Monday afternoon. It felt so good to be home with our other three children. To think sweet little Rosemary has already had her first surgery! Life is too overwhelming right now to think any further than today. She's still not nursing, so I'm pumping every two hours, yes, every . . . two . . . hours!! My milk supply is up and I think she's starting to plump up a bit. Her head shape is vastly different since the swelling from her surgery has gone down.

{I plan on posting better pics of her soon, like I said, it's been a bit busy. I have read all your comments and am so grateful for all your love, support, and of course your prayers.}

curve balls

This little girl is all about making her mama and daddy make tough decisions. We were given the green light to go home today, then she threw us a curve ball - started vomitting after her mid-day feeding. She has never as much spit up before, so we kept a close eye on her every move this afternoon and decided we should probably stick around the PICU one more night, hoping it was just an air bubble from being bottle fed. She is normally breastfed, but has had trouble latching on since the surgery. Yes, we'll be going straight to the our Lactation Consultant as soon as we get home to hopefully get that problem solved. I am grateful that she is eating nonetheless.

Yesterday was the peak swelling day. Today she looks completely different, eyes open, more alert, A-line was taken out . . . and she told me she'll be ready to go home tomorrow!!!!!

Yesterday . . . and Today . . . .

Yesterday was a good day. Coming off the ventilater was a big relief for me. She also started her swelling and bruising which peaks at 72 hours after surgery.

With her having major head surgery it made us a little apprehensive to hold her because of the way her head feels - imagine a water balloon made out of saran wrap, and that's how her head feels. Around 8:00 last night, we were able to hold her for the first time. The first thing I noticed was her scent, she smelled so good in my arms. Then back to the "cage" she went for a night of more r&r.

Today, Rosemary had a blood transfusion, a sleep study to check for central Apnea, and she had increased swelling. Again she was stuck her in her bed . . . and unhappy with her head and chest full of wires - her head is wrapped in gauze because of the diodes used for the sleep study, not from her surgery. Once the sleep study was complete, we were able to hold and feed her which ended our rough day on a happy note. Things are slowly getting back to normal.