I thought I’d check in “our babies” and found this.
I am so so sorry, Hampshire for your losses.
I don’t know if this will “help”. This was read at my sister’s funerals (I had twin sisters who died as adults recently-one 6 years ago, and one last August.) I don’t know how fitting it is for babies, but I appreciated the message in my grief. I hope I don’t offend you with this-I do not know if you are religious.
*I stand upon the seashore. A ship spreads her white sails to the morning breeze and heads out across the blue ocean. She is an object of beauty and strength and I stand and watch her until at length she hangs like a speck of white cloud on the horizon, just where the sea and sky meet to mingle with each other. At my side, someone says, “There-she’s gone.”
Gone? Where? Gone from my sight-that is all. She is just as large in mast and spar and hull as when she sailed close by, and just as able to bear her load of living freight to the place of destination. Her diminished size is in my vision alone. At the moment when someone at my side says, “There-she’s gone”, other eyes watch her coming and other voices take up the glad shout, “Here she comes!”. *
My thoughts are with you and Mrs. Hampshire at this most awful time.
Hampshire,
When the busyness is over and the other people have gone back to their lives, we’ll be here if you need us. In the meantime, know that you are in our thoughts and our prayers.
Being numb is pretty common when you have to organise funerals and just deal with the stuff you need to deal with. TBH I was manic and high as a kite the day after we buried our Ambrose. Then I got numb. Then I grieved.
Hampshire, I’m so sorry for your losses. There’s really nothing I can do or say to make it better, I know. But I do feel for you.
Caileigh’s back on the CPAP again 'cause she still doesn’t want to breathe all the time. She’s allowed to have her first bottle tomorrow, but only if she comes off the CPAP first. Not too likely. So realistically, she can have her first bottle whenever she comes off the CPAP. She’s sucking really strongly now - last night she sucked on her pacifier for almost 20 minutes straight, which speaks very well for her having the strength needed to drink a whole bottle. Whether or not she’ll also breathe during it seems to be another story.
She weighs something around 3 pounds 4 ounces now. She’s got little chubby legs and a double chin. It’s so cute. I’ll try to upload some newer pictures today.
She’s getting better at regulating her own body temperature. Last week, they changed the way the temperature controls on her bed work. Before, she wore only a diaper and the bed constantly monitored her temperature and the bed would adjust to her. Now, she’s wearing clothes and blankets and the bed is set to a steady temp. It’s the first step towards her being able to keep herself warm in a regular bassinet (or as they call it, an “open bed.”)
All this development is really good, but this breathing and heart rate thing is worrisome. If she can’t be trusted to breathe and keep her heart rate up, the rest of it is sort of moot.
Oh, and no belly button yet. She’s got absolutely smooth skin where one should be, with a bump underneath it, which is actually intestine (it’s an umbilical hernia - very common, will most likely heal itself.) She should develop one as she grows and as the hernia heals. We hope. Wouldn’t it be weird to have no belly button? It seems like such a bizarre thing for me to be thinking about, considering what could be going wrong, but it’s still the first thing I check for after her breathing. Sometimes, I am strange and shallow.
Hampshire I’m so sorry for your loss. I lost two daughters in infancy (though not at the same time) it’s devastating but you will recover eventually. If you should need a complete stranger to talk to my e-mail is in my profile. It’s been many, many years for me now so I may have something to offer besides just condolences.
WhyNot Even with the CPAP thing it sounds like she’s getting stronger. I’m keeping you and little Caileigh in my thoughts.
Hampshire, I’m so sorry. If there’s anything I can do to help, I’m in Robbinsdale, 'bout a mile from North. Don’t hesitate to call on me - addy’s in the profile.
Sorry there’s been no updates lately, but it’s been because nothing’s been going on. Until today…
Caileigh got her first bottle today! She did very well, drinking half of her feeding (about 18 mL or just over a Tablespoon) before getting the rest by her tube. The nurse was very impressed with her. Caileigh herself seemed somewhat perplexed and dubious, but gave it the old college try and I think she might be won over.
As long as she’s breathing OK, each day she’ll be given 1 bottle to try. All the rest of her feedings, including whatever of the bottle she doesn’t finish in about 15 minutes or so, will still be by tube. At some point, they’ll increase it to 2 bottles, each one 12 hours apart, with three tube feedings in between. They want her to learn to eat, but it’s very hard work for little ones, and she can’t wear herself out with too much work yet. She needs all those calories to grow.
Speaking of growing, Little Miss is a whopping 4 pounds, 1 ounce! She’s only 2 pounds and 2 ounces away from what her big brother weighed when he was born.
She’ll have her first eye exam tomorrow. She had another cranial ultrasound last week and it was normal.
There’s some new pictures up at the yahoo site. You won’t believe it’s the same baby.
Great! Now, that’s the kind of update that’s worth waiting for!
Four pounds two - wow! I know a lot of babies go home at five. Will they wait until she’s off all machinery and tubes or send her home with it? Either way, I bet you can’t wait.
That’s awesome! Sounds like an excellent weight. Our daughter Arwen weighed only 3 pounds, 15 ounces when we brought her home – so Caileigh’s getting much closer, right? What are her “exit standards” before they’ll let her come home?
I’m guessing:
Breathes on her own (consistently, albeit with some medication)
Can take at least 40 ml at a feeding with no tube
Can regulate her own body temperature
What else does she have to do?
Oooh! She’s got to be getting close, right? Exciting! Exciting! Remind us again. What’s her gestational age? Go Caileigh! Go you!
[Something to keep in the back of your mind is if she doesn’t develop a full fledge suckling action, something called the Haberman Feeder is awesome. Basically a specially designed $15 baby bottle to help those that swallow fine but have trouble suckling. ]
Mrs. Further got it right on the button. To go home, Caileigh needs to be able to:
Breathe on her own
Eat on her own (I haven’t asked what the exact stats are, but 40 mL bottles sounds about right)
Regulate her own body temperature outside her isolette
She’s doing pretty well with number 3 - occasionally runs a little hot, actually. She comes by it honestly - I’m a furnace. Number 2 seems to be on its way. Number 1 is what’s presenting itself as her biggest challenge. My best guess at this point is she’s got another month or so in hospital, and I’m going to press for an apnea monitor to come home with us - there’s a strong family history of apnea (two grandparents, and I suspect her father, but I can’t get him to go for testing!) and also of asthma (two grandmas and one grandpa), so it wouldn’t surprise me if some of this breathing business is genetic, and not solely based on her age.
She’ll be ten weeks old tomorrow. Thursday her adjusted age (the age she would be if she hadn’t been born) will be 34 weeks.
I’m doing ok. Getting the apartment in order. I finally feel up to the task of sorting through all her clothes and getting her closet together (she doesn’t have a room, but we’ve allocated two closets to her stuff.) I’ve gone back to working at the nanny gig, and it’s interesting. I find I’m less fond of other babies right now, and impatient to get done to go see Caileigh, so I may not be doing the work much longer, since I don’t feel I’m doing it as well as I’d like. It sort of feels as if I’ve fallen in love, but I keep dating other people to go through the motions, you know? Maybe I’ll feel differently once she’s home with me and my time with her isn’t so limited.
I still go to spend time with Caileigh every day - a couple of hours, and we “chat” about the babies I work with, and the great outdoors, and things we’ll do together when she gets stronger. So far, based on facial expression and lots of parental projection, she likes the idea of birds, dolphins and flowers. She’s not so fond of turtles, clouds and cats!
Like every other baby in the universe, she lights up when her brother visits her. I don’t know what it is about my son, but babies and small children just adore him! And while he’s good-natured, he doesn’t really like little ones any more than any normal 12 year old boy! He spends most of his time at parties alternately half-heartedly tossing balloons at them and running away and hiding (not in a playful way), and they all seek him out, calling his name in plantive tones. He’s got at least three toddler “admirers” at the moment. Their mothers invoke his name to get their kids to listen: “Put on your seatbelt, or we can’t go see WhyKid!” Caileigh is proving to be no exception. She can’t get enough of staring at him.
Now, that’s the kind of update that’s worth waiting for!