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.

Big changes today ~

Rosemary’s surgery went well today!!! Thank you for all your prayers, I totally felt at peace today, a few moments of anxiety, but mainly peace. She is being closely watched tonight and we actually got sent home by the docs for our one chance of getting some much needed sleep. Starting tomorrow, she’ll hopefully be able to eat again once they take her off the breathing tube. She will have a lot of swelling the next couple of days, but her head is already taking on a different shape.

Before surgery ::





After surgery ::





Off to get that good night sleep . . .

an update ~

We’ve been on quite a bit of a roller coaster ride with Rosemary, as it seems our travel/surgery plans are changing daily. Where we once thought we had a bit of time before her first surgery to do some traveling this week to get a second opinion, things have changed and now tomorrow she goes in for her first mid-vault decompression. This is a surgery they typically like to wait on, but her brain is under too much pressure and it must be done immediately.

If I can possibly get my hands on a laptop, I’ll be updating her recovery in this space. I know so many of you have been coming back frequently to check on her. You will never know how much I appreciate all of the comments you’ve written me, sending your thoughts and prayers. We really need every one of them. We’re trying to take this one day at a time, sometimes my minds skirts away – too far away – and I get anxious and I have to pull myself back into the present. Thank you again and again for all that you have done for our family and our sweet Rosemary. She is truly a light!!

Be back soon!!!