Well, I haven’t been doing an awesome job of keeping up with my blog lately! We’ve been busy, we went on a trip to visit my grandparents and I came home with a whopper of a kidney stone that I’m currently (literally – currently on hold with the doctor’s office!) trying to get everything sorted out with that (Ugh!) and homeschooling has been going pretty well, and, well, I just haven’t gotten around to blogging as of late!
But I thought I’d take some time today to do a little reminiscing. And to tell those of you who don’t already know, Pink’s story. (Now that I’m done talking to the doctor’s office.
)
Pink was born via scheduled c-section on May 6, 2009. (I was 39 weeks, 3 days, so it wasn’t an ‘early’ scheduled c/s or anything like that). She was born at 8:30 am, and it was a long process in the OR after her birth – I had a cyst to take care of, as well as some scar tissue that needed removing, as well as a tubal ligation to be done…so we were in there for awhile. Pink wasn’t wrapped up into a tiny burrito and handed to The Man to bring over to see me – she was kept over on the table, where I could hear coughs and cries, which they said were a good sign. The nurses said she was coughing up a lot of junk, and The Man took some pictures of her and brought them over to me. 

In the pictures at the time, her color didn’t stand out the way it does to me here. The Man went back and forth between the two of us, checking on me (we were in there forever, and the spinal block or whatever was losing potency. It didn’t hurt in a sharp way – more of pressure/soreness/ache, but I kept saying, ‘I can feel that’ and they would up the dosage a little more.)



When they were FINALLY done with me, we had been in the OR for about an hour and a half/two hours. It was close to 10:30am when we got back to recovery. The Man ducked out to get my grandparents so they could come in and see her, and stayed out in the waiting room with the boys. Link had a cough that day, and we decided not to let him come back and see her yet – which, in retrospect, was probably a great idea, even more so than we knew at the time. :)
The nurse commented on Pink’s color in recovery (which I had noticed), and held some oxygen up to her face and she pinked right up again. By the time my grandparents went back out to the waiting room, The Man came back and the nurse wanted to go ahead and take Pink up to the nursery. So she went on up while I stayed in recovery for awhile (I can’t remember what it is…till you can wiggle your toes? Or is it push up from the bed with your feet? Hmm…)
In the meantime, my grandparents had taken the boys up to look at Pinkalicious through the nursery window.
By the time we got up there, the nurses in the nursery had sent Pink to the NICU. There was really no sign that there was anything really wrong with her… she had a little trouble breathing and oxygenating her blood the way she should. So she was sent over to the NICU and put under the oxyhood.
The Man was able to go over there with her for much of the day. He came back and forth, updating me on how she seemed to be doing and what the doctors were saying. A nurse of mine told me I wouldn’t be able to go see her til the following day, and my doctor came in and insisted that they take me to see her that evening anyway. :) Over the course of the day they were having to turn up the oxygen under the oxyhood… normal room air is 21% oxygen, and by the middle of the night on the 6th/wee hours of the morning on the 7th, she was unable to keep her oxygen saturation levels where they should be with 100% under the oxyhood. They came and woke me up so I could sign the permission forms for blood transfusions for her, if necessary, and told me they were ventilating and putting in a chest tube.
She spent the next couple of days on the ventilator, and had a chest tube in one side. The ventilator’s settings were turned up to 100% oxygen, and on Friday night, May 8, she wasn’t doing well. Her doctor, at that point, mentioned ECMO to us, and when we left the NICU to head back to my room for the night, she had been put on a jet ventilator and they were calling the ECMO team and putting them on standby.
On Saturday, May 9, Pinkalicious’ condition was not getting better. Her blood pressure was up and down, and her SATs were up and down as well. They placed a chest tube in the other side now, also, and after lunch they moved her to a different room and began prepping her for ECMO.
Now, if you don’t know what ECMO is – ECMO stands for ExtraCorporeal Membrane Oxygenation. She had two large cannulas (tubes) which were inserted on the right side, where her carotid and jugular were. The ends of the tubes sat in her heart, and they did all the work of her heart and lungs for her, allowing her body time to rest and heal (she didn’t have any heart problems, but this was the best way to give her body a break). An ECMO machine looks like this:

Or close, anyway. Some are bigger, some are smaller, but the basic components are the same. Anyway, Pink was put on
ECMO, which circulated and oxygenated her blood for her. Over time, the process can be kind of hard on the red blood cells, so during the time she was on ECMO she also received numerous blood transfusions and some platelet transfusions, as well. She had x-rays regularly, and ultrasounds on her head about every/every other day, to check for bleeding in her brain. It’s hard to see her in this picture, because on ECMO they have to keep a close eye on blood pressure, and on many days it was kept dark in the room, and I didn’t want to disturb her with flash photography.
She was also laying on a biliblanket one day for jaundice. She was fed through an umbilical line. The respirator was kept on rest settings, just putting out a small stream of air to hold her lungs open.
When she had been on ECMO for about 3 days, they turned the ventilator to slightly different settings. Everything was looking good, and she was beginning to take a few extra breaths on top of what the ventilator was putting out on its own. On Thursday, May 14, they did a clamp off in the morning – where they clamped off the ECMO lines for 15 minutes to see how she would fare on her own. The whole room was full of doctors, nurses, respiratory therapists, and The Man and I, all staring at the little screens to see if her SATs would drop. A nurse stood by her bedside and took blood every 5 minutes and sent it down to the lab to get quick blood gas readings. She fared well with the first clamp off, and they did a second later that afternoon, which she also did great with.
So they took her off ECMO on Friday, the 15th. She still had the ventilator, but was doing so excellent with it that by Sunday the 17th they had it down to 30% oxygen – only 10% more than room air!
Over the next couple of days, her umbilical line wouldn’t work any more (she was getting too old), so she was tube fed through a tube in her mouth, instead. They were able to remove her from the ventilator early in the week, until on Thursday the 21st she was ventilator-free!
I was able to hold her for the first time since the day she was born, and The Man was able to hold her for the first time, ever. :)


On Sunday, the 24th, she was finally able to get a bath, and we began trying to bottle feed her. The first day she took, oh… a milliliter? :) Suffice to say, learning to eat was something she had to relearn – because of not using the muscles, they had atrophied and the reflex was gone for awhile. (At this point, her tube for feeding had been moved to her nose.) She was in the process of being weaned off several drugs, and was becoming increasingly alert.


She was able to move out of the ‘intensive care’ section of the NICU to the ‘intermediate care’ section of the NICU – basically, she was doing much better, and just needed to be weaned off the meds and learn to eat before she could leave. This still took awhile, but it was a much different experience than our first couple of weeks in the NICU! I went up every day, and was able to sit with her and feed her (or try, at least!) and have a relatively normal newborn in many respects.

She was on monitors at all times, and was surrounded by blankets, stuffed animals, and things from home. She lost all the hair she was born with, and the hair that grew back in was thick and blonde – it looked almost like a little buzz cut! She was put on phenobarbitol, which is actually a seizure medication, but also has been found to help the liver get things through a little better – she was pretty jaundiced from all the meds going through her system and her liver taking time to get it all processed and stuff. Phenobarb. was actually the only medication she was on when she came home. On Wednesday, June 3, I stayed home with the boys while The Man went up to spend the day with Pink. While he was there, the doctors lowered the amount per feeding she should be taking in, and she began eating like a champ (well, a slow, messy champ, but she was eating what they wanted). On Sunday, June 7, she was finally discharged!



She went in and had her levels checked a couple of times, and was able to come off the phenobarb. on June 26. She took a little while to eat at the speed that most babies do, but within a couple of weeks she was adjusting to normal life. She began sleeping through the night at 9 weeks, and she then proceeded to be completely normal! She has not shown any delays in any way. :)
On Pink’s first birthday, we held a blood drive in her honor, since she received so much blood after being born (and I received some, too!)



Of course, we had a birthday party, too.
And below are some pictures from when she turned 2…


And now she’s 3! And a very happy birthday it was, for our little miracle girl. :)










































































