Well, here it is approaching Kiara’s second halloween and we havent made a post in quite a long time. That is mostly becuase she is doing very well, and keeping us very busy!
She is running all over the house doing her “war cry”, tending to her baby doll, and running arround with her nephews.
Everything is going well and we look forward to seeing you all arround thanksgiving and christmas.
For those of you who have been to Kiara’s site before, Im guessing you noticed that this is a completely different page and setup. Basically, I made the homepage myself, but the blog and photo gallery are now using popuplar software from some of the best industry leaders in their fields.
This also offers several enhancements for us (the maintainers) simplifing our jobs, but for you the viewer it shouldnt really change much except for how things look and what to click on.
I hope you all like it and see it as an improvement as we do.
So its been quite some time since our last update - almost 7 months!
So much has gone on in that time - She has gotten off her caffeine medicine, now wieghs over 20 pounds ( I KNOW ! ), begun to crawl, talk, and her personality has already started to shine through.
She has two big gorgeous bottom teeth already, and it wont be long until she is walking arround with a few more teeth.
Thanks to everyone (who prayed, sent good energy, or what ever you want to call it ) we couldnt have done it with out you.
We look forward to seeing all of you soon.
Mar 4, 2008 | 8:33 PM PST
As of 3/3/08 Kiara is now 5 lbs 12 ounces, (so she is past that 72 hour window with no gain). As of 3/4/08 she is 5 lbs 13 ounces, so it seems were back to our normal weight gain pattern of 1 ounce a day or two ounces every other day. Her doctor and nurses let us know that she a herniated umbillical cord, which is a small opening that hasn’t closed in the abdominal muscle tissue. Normally the umbillical cord is severed at birth and the abdominal muscle tissue closes from the inside however in her case of a herniated umbillical cord the muscle tissue is simply under developed and hasn’t closed the gap on the inside. They said not to worry that the hernia is small and that it is very common in premature babies. Her nurse also went onto say that it should heal or close up on its own and that they will watch it very carefully and only as a last resort is surgery necessary. One last update is that she has gone up to 6-7 bottles feeds out of 8 by mouth, (three of which have to be bottle so that she gets the extra calories from human milk fortifier and the rest by breast). As mom I will be spending the night with her now since she is nippling all but 1-2 of her feeds that way we can get to the last portion of her nutritional plan which is demand feeding. This means that whenever she wakes up and cries she gets to eat (of course only if she is hungry). So keep on sending her good energy, prayers, and love we appreciate it but she does even more.
Love Mom (Barby) and Baba (Amin)
Mar 3, 2008 | 7:18 PM PST
Well it’s been a few exiting days with good news, some set backs but all things are heading in the direction of Kiara being able to go home within the next two to three weeks. The doctors tried to take her off caffeine, (which insured at a therapeutic level she wouldn’t have any crashes or turning blue episodes). Unfortunately on her second day off caffeine she began crashing and turning blue on a fairly regular basis ; 8-10 times in a 12 hour period. So as of today, 3/3/08, they have put her back on caffeine and will send her home on it until she learns to breath on her own. They have increased her feeds as well over the last few days from 46 ML to 50 ML to 52 ML as of today; and they have also increased the amount of bottle feeds/breast feeds she must do by mouth to 6 of 8. The EPO shot that she had to be on for two weeks and should have ended last Friday 2/29/08 has been amended to continue for another full week to ensure that her red blood cells continue to generate and flow more oxygen throughout the blood. The nutritionist that determines how much to feed her and what calories she needs to intake has decided to keep her at 24 additional calories (with human milk fortifier) for all her bottle feeds since she hasn’t gained weight in 72 hours. They said this isn’t necessarily concerning but that babies are supposed to gain weight every other day if not every day. However with that said she is burning up a large amount of calories sucking and nippling her feeds which can truly wear her out per her doctor “It’s like you or I having to sprint a mile every time we eat”. So she is working hard and beautiful as ever. We’ll update with new pictures soon!!
Thanks for the continued support,
Mom (Barby) and Baba (Amin)
Feb 22, 2008 | 7:20 PM PST
Kiara is doing well with just a couple setbacks. She is now up to 5 lbs 2 oz as of 2/21/08. She passed her hearing test on 2/22/08 with flying colors for both ears! She has had three of the six EPO shots to help her red cells boost production of iron. They will draw blood on 2/24/08 to see if it has improved her anemia and therefore her apnea. She is breast feeding three times a day with supplements coming via her nasal gastric tube. She is only getting up to 26 ML when a full feed is 46 ML so the breast feeding is more for practice to get her sucking strong enough so that she will one day be able to breast feed exclusively. She also has to pass a goal of three bottle feeds as well and were up to one so far. All in all she is making progress we just need her anemia to resolve itself, her apneas and brady’s to diminish altogether, and her feedings to be at 80% for 5 breast 3 bottle. Keep on keeping her in your thoughts please! We appreciate you all for supporting our daughter and us!
Thanks,
Mom (Barby) and Baba (Amin)
Feb 18, 2008 | 9:33 PM PST
Updates so far…
She is no longer on supplemental oxygen and has no nasal cannula with room air flow. She has moved from an incubator to an open crib (that looks more like a plastic storage container with no lid). With improvements at taking a couple ML (Milliliters) via breast and bottle there is also some things that she needs to improve. She still continues to forget to breathe and has what are called Brady’s (When she drops her heart rate below 80 when it should be between 120-160). The Neonatologists believe they discovered the reason and that is due to her becoming anemic.
Since she is now up to 4 lbs 14 ounces she has gained a pound since birth and has also grown an inch in height and is now 18 inches long. With this immense growth spurt her red blood cells/platelets haven’t caught up. So to prevent a blood transfusion they have put her on three shots a week under her skin once every other day for two weeks, (Monday, Wednesday, and Friday) of a stimulus that is supposed to tell her body to create more blood red blood cells and therefore more iron which could eliminate the problem of anemia altogether. It has worked for cancer patients and they have found success in preemies as well so everyone hope for the best because infusions are not the best method of practice. If she gets a transfusion it will end up being more than one and for an extended period of time since the body wont create its own red blood cells because the infusion will make the body believe that it doesn’t need too.
With this set back of Kiara being anemic now - This unexpected occurrence will delay her coming home as she now has to be here for at least two more weeks - but at least this does explain her “Brady” and apnea episodes since she has a shortage of red blood cells and cant carry enough oxygen in her existing ones.
So please everybody hope, pray, give good energy, keep her in your thoughts. She needs everyone’s support and love right now.
Thanks,
Mom (Barby) & Baba (Amin)
Feb 17, 2008 | 11:18 PM PST
Kiara is doing very well, She has grown a full inch since birth, and is now at 18 inches. She is gaining weight at the rate of a professional wrestler - she is now 4 pounds 13 ounces - gaining a full pound and four ounces in 21 days - that’s an average of 1 ounce per day.
There are also some new photos uploaded
Feb 6, 2008 | 4:18 PM PST
Updates! She has made it back to her original birth weight of 3 pounds 14 ounces as of 2/5/08. She had a rough day and wasn’t tolerating her food. Turns out she had an infected IV, once it was taken out on 2/5/08 she began tolerating food and having normal diaper movements. It is now 2/6/08 and she hasn’t had any spit up, she is tolerating food, and she is up to 28 CC per feed every three hours so the IV didn’t have to be put back in. We weren’t able to hold her today but she needed a day to recoup after the hard day yesterday. She is having fewer and fewer episodes of apnea (forgetting to breath) and even the ones she has she remembers before anyone has to rub her or give her supplemental oxygen. All in all she is doing better. More updates to come as new information comes our way…
Love Barby (Mom) and Amin (Baba)
She’s here! Came in to the world a little too early but fighting just the same. She still needs some reminders to breath becuase forgetting is just part of the fight. She has made great progress with being taken off of CPAP and no longer requires oxygen just room air flow. The billi-ruben lights have also been removed and her kidneys are working just fine. Were up to 15 CC of breast milk as often as she can tolerate and digest it. As of 2/3/08 she is up to 3 pounds 12 ounces. Her birth weight was 3 pounds 14 ounces and she dropped down to 3 pounds 9 ounces but is slowly but surely gaining the weight. Were now at 34 weeks and she’ll soon be learning to suckle on her own. Updates will come as she fights to grow stronger every day.
Love Barby (Mom) and Amin (Baba)