Friday, March 26, 2010

Updates

Kailey is more and more a part of our family! After a few days it felt like we have had her for a long time! Also, she is quite the chewer... she chewed off her leash and chew through one of her toys!!! We will have to keep a close eye on her :)
Alex used to be fearful to touch her and now he is cuddles more with her than any of the other kids. So, this picture is a treasure :)
Sabrina has 3 new teeth in the last few days and Sofi is gradually getting over her separation anxiety!!! Tyler is loving school so much he wants to leave for the bus as early as possible. All the kids hang out at the bus stop talking about Mario Bros. WHO WOULDN'T WANT TO GO EARLY!

Thursday, March 25, 2010

Lullabye

Tonight I rocked my girls before bed. One on each leg. I sang the same usual songs, but tonight was different. Although they are not talking clearly, the girls sang along with me. They hit the right notes at times and occasionally used the right sounds for their letters.
It was the most beautiful chorus I have ever heard!!!

Wednesday, March 24, 2010

Happy Day!

They were giving me kisses through the railing :)!

Round 2 - 3/22/10

Sorry so blurry.... I was shaking too much!
I actually sobbed in that back of the ambulance this time. I think it is the first time since they were born that I let go and cried like this for them. She was sleeping or else I would have stayed solid for her. I have had some tears here and there, but with all I wrote in last few posts it seems like it all hit me at once. I thank God every time I look at them that they are strong, happy and healthy!!!
Resting in the ambulance... it was nap time. But she was very groggy!!!
Getting an EKG, she hardly minded with the volunteers out of frame blowing bubbles for her :)
Still kinda sluggy... but getting better.
They gave her a Build-A-Bear... and it only cost $75!!!Back to her normal self by evening :)!

So we had to go to the hospital again! As I have said before we are not going to be taking anymore chances with the girls. Aaron came in from going for a walk with all four kids. As they were coming home he noticed Sabrina was not acting normal and brought her in to me. When he came in she was on his shoulder, very pale and lethargic. We then called 911 thinking it was an O2 issue, but didn't see her struggling with her breathing so we had no idea. The firehouse is a few minutes away so they were here in minutes. They saw her behavior, asked the history and then checked her blood sugar. It was 65 which is on the lower end, but it was just before lunch time so this makes sense. After another ambulance ride to Dornebechers (per Aaron's request) they did several tests including: blood work, x-ray and ekg. They found nothing. After she received one bolus of fluids she seems to be doing better. Then by evening she was back to normal. They could never quite put their finger on it and said, "It must have been a fluke. At least we know what it is not." I am still not sure what they meant by that. But, she is home, happy and healthy once again. We are taking it easy and making sure she drinks tons of fluids. On the way home from the hospital we picked up some Pediolite. OH YEAH... the blood work did show her Pottassium (K) levels were low. This could have been from dehydration. We will never really know. I followed up with her regular Pediatrician and we will be hearing more tomorrow. SHE IS AMAZING I LOVE HER! Last week was the first time we met her and we are very impressed. We are hoping she has some answers for us. We will post you as we know!

More interesting info!!!

Here is some info about Nitric. Sophia did also receive artificial surfactant. SHE IS A MIRACLE BABY!!!!!! Not that Sabrina is not, she is too. THEY BOTH ARE! Sophia's condition was just worse. The fact that they struggled as they did and are as well as they is so amazing!!!! I think I was in survival mode and now it is finally hitting me. WE ARE SO BLESSED WITH TWO HEALTHY, SPECIAL Little Princesses!!!


The lungs of very premature infants are underdeveloped, fragile and too weak to breathe independently. Mechanical ventilation with oxygen keeps these infants alive but often results in chronic lung disease, or bronchopulmonary dysplasia (BPD), with severe inflammation and retarded development of the lungs.

BPD is the most common long-term lung disease in premature infants in the United States, affecting about 15,000 babies each year. About half of the infants born between 24 and 30 weeks and weighing less than 2 pounds develop BPD. The condition is life-threatening, and those who survive can suffer long-term disabilities including asthma, mental retardation and cerebral palsy.

The controlled, randomized clinical trial of nitric oxide was headed by Roberta Ballard, MD, UCSF professor emeritus of neonatology who coordinated the trial while serving as chief of the division of neonatology at Children's Hospital of Philadelphia. The trial included 582 very premature infants who were enrolled between 2000 and 2005 in the study at 7 to 21 days old at 21 hospitals around the country.

Laboratory studies were performed in 83 of these infants to examine whether inhaled nitric oxide had a negative effect on pulmonary surfactant, a lipid-protein mixture that coats the lungs and greatly reduces surface tension.

Surfactant essentially allows the lungs to inflate easily after exhalation, eliminating the work of breathing. Very premature infants produce insufficient amounts of surfactant, so any therapy that inhibited the work of surfactant would be harmful.

In the study, half the infants were treated with nitric oxide and half received a placebo. Fluid from their lungs was then collected and examined for surfactant levels and properties. Findings showed that "there were no significant differences" between the two groups in surfactant amount and that inhaled nitric oxide may have a positive effect on surfactant function.

"This is very good news in terms of the safety profile for this promising new therapy," Ballard said. Prevention of BPD in very premature infants has included the use of vitamin A therapy, which has a small but positive effect, and dexamethasone, a corticosteroid, Ballard said.

Health update

So, much of this info you would have already heard before, but I am going to include all the details.

27 week preemies are susceptible to lung issues just because of how underdeveloped their lungs are. This means colds are potentially harder to fight off, even later in their life. Mostly just colds, because of the congestion and coughs, which are lung issues. Now, Sophia had a ventilator in her lungs that vibrated causing scar tissue which makes it even harder for her to fight off coughs. Not only did she have the ventilator, but she also needed the ventilator. She was not able to breath on her own and only was able to survive because of the gas they gave her called, Nitric. (I just read a bit about this, and Nitric doesn't always work. It is a blessing it did and I rememebr the Dr saying he never saw it work so fast!!! I am more thankful the more I learn!!!) The scar tissue will take a few years to heal, if it ever does. So, she had extra issues. Sabrina was preemie, one issue. Sophia was preemie with extra lung issues needing a ventilator, meaning three issues. So, Sophia is 3 times more likely to get sick and be sicker. The fact that Sophia needed to return to the hospital at 38 week gestation with Para influenza A and still needed O2 for a few more weeks this would cause her to fall under the bronchopulmonary dysplasia (BPD) category. There is a link below describing this condition.

Both girls have been sick with lung issues, following a cold, to the point they needed O2 assistance. Sabrina had Parainfluenza B. This means we have to be even more careful because once they have had these types of colds they are able to get them easier than they were, especially with all their other issues mentioned above.

I have also spoken to the NICU Dr regarding this and he agrees. Although, Sophia has a much milder form, BPD would show me how serious we have to treat all these issues. Not until they are around 5-6 years old are kids able to handle and fight off colds better. So, until then we have to be more cautious. I now know better what the signs are, especially for Sabrina who doesn't let on she is as sick as she is. And anytime there are issues with them breathing, coughing and or anything of the like we are going to be more likely to take them to the Dr to make sure they don't get as sick as Sabrina did. I also left a message with their Dr to see if we can rent an O2 monitor and O2 in case we need support until we can get them to the Dr. This will not be used by us at home, just because we think they need it. O2 is not good in high amounts... so it would only be in emergency situations.

When we get a cold it is called Parainfluenza C, mild and we can handle it. Type B is what Sabrina just had... she was ok, but needed help. Type A is close to fatal which was where Sophia was at when she was 38 weeks gestation and had to go back to the NICU within 24 hours after she was home. She probably was sick before she left.

It is not until more recent times that preemies lives have been able to be sustained. Now, these first few preemies who survived are in their 60-70's Drs are finding they are more likely to get emphysema and other lung issues. Smoking would be very hard on their lungs, more so than other full term babies. Preemies are not doomed, but they do have to take extra precautions because of their rough starts. I did not realize all these details and thought my girls were good. THEY ARE! But this last cold and hospital stay showed me I need to be more cautious and careful.

We will not allow boogers, colds or any like symptoms in our home or go anywhere while these symptoms are seen. Mostly when the visitors/household have young children. We will take them in public, but less so during the winter and we will carry sani-wipes for carts or use our strollers. Other than this life will be as normal. If we find Tyler is bringing home germs, we will decide what to do then. I am not sure if he brought this home from school or I was not careful enough with play dates... AND TONS OF HAND WASHING!!! But no more messing around for me. And this is just through the winter months when people are inside more often. Oct-April.

Thank you all for all you have done! I could not do it all without your support, care and love!

http://kidshealth.org/parent/medical/lungs/bpd.html#

Saturday, March 20, 2010

What a week!

Poor baby girl Sabrina had the same cold as Sophia but it hit Sabrina harder. Come to find out it was either pneumonia or bronchiolitis. This is a role reversal because Sophia is usually the one who gets sicker, because she had a more difficult start to life! I also learned that the girls are fragile until they are about 5 or 6 years old. I had to learn this lesson the hard way :(


Here she is at the Dr's office awaiting the ambulance. Her oxygen saturation was 85!!! She is getting a neb treatment which did not help. Soonthereafter they gave her O2.
EMT's were great, and cute according to Tichu! He tried her off the O2 and dropped form 100 to 85 in seconds. He said that was IMPRESSIVE, but not in a good way!
THANK YOU TICHU for helping! I gave the EMT's the blog so they will now know you think they are cute! ;)

At OHSU there is always two of everyone because it is a teaching school. She was contagious so everyone had to wear yellow stuff. Anytime someone in yellow walked in she was sad. She knew they were going to do something to her. Even when they brought her meals she did not want to eat them. Most of the nurses and Drs went to her left side. I was on the right and she was fine if you came from that direction! So I learned to give her food from the right side!!
She slept so much in the beginning. She was finally able to recover once she had the O2.
She had many visitors. Pilar was there too but not in the pic. THANKS FOR TAKING CARE OF US!!!
2 am they gave her an IV. She needed 3 boluses and a maintenance drip before she had a wet diaper. She was soooo dehydrated.
Daddy helped me relax and then I could sleep. The sun was setting which made for a great picture... LADIES STAY AWAY! HE IS MINE!!!
She had a reaction to the tape :( Both cheeks were RED! P.S. She also had an ear infection!!! This meant that if the sickness was bacterial the antibiotics for the ear infection would/will also combat the cold.
After napping (pic above) she woke at 8:30 pm and was up till 10:30 pm just dancing and playing!!!
The next morning it was a slow start and desatted a few times. But after an hour she was great!!! No O2 needed.
(Today was her first day she woke up happy and really healthy (3/20/10)!)
Her appetite came back!!! A breakfast sandwich looked so yummy!!!
This was last night... sleeping soundly without struggling to breath! This was the first time in a week! We are so thankful she is home, happy and healthy!!! Thank you Grandma for making my bed.. and Grandpa thank you for picking me up and bringing me home. When you walked through the door I was soooo happy to see you!!!


Sunday, March 14, 2010

Saturday, March 13, 2010

Better day

She could handle sister getting more attention today!
Bina hold on to Mama!!
This was her alllll day!!!!

Friday, March 12, 2010

:(

Bina being rocked to sleep... SO RARE!!!!
Look at all the hair!!!
Sofi not liking Bina getting any attention... Daily!!!
What she is really saying is" WHERE IS ALL MY HAIR!?!?!?!
This week included:

One small melt down, 1 migraine, 4 with coughs, 2 with fevers, 3 with green boogers, one jealous of fevered ones attention (twins, oi!) ;), one puke pile looking like egg whites, one falling asleep at the top of the stairs, one not eating or drinking, 1 w/ pink eye AGAIN and 3 teeth breaking thru!!!!!!! Also, Aaron worked 10 pm to 5 pm the next day! Single Mothers... I have a new respect!!!


Video of me rocking Nina who has a fever and one tooth cutting thru, kicking sister away. Sofi's jealous with a cough and 2 teeth breaking thru. Alex fell up the stairs and Sofi' adorable head nod and darling shoulder shrugs!!!!

Cheetos make everything better!!!

video

She was sleepy....

She didn't want to make the trek downstairs, so she fell asleep instead!
She was passed out... so I put her in bed at 10:30 and she is still sleeping (2:15 pm)!
Poor baby is sick!

Wednesday, March 10, 2010

Spring time!

Yummy dessert from a kids cookbook! Mango dipper, Lemon Curd w/ Yogurt, Rasp sauce and CHOCOLATE WITH ORANGE ZEST!!!!

Brendan, Tyler, Miranda and Alex eating our yummy dessert!
CURLS!
Smiles!

Friday, March 5, 2010

More ppl check this than I realize....


Bina working hard at Tichu's.
Alex balancing on a ball!
Play date at Sip-n-Play with TJ!

Wednesday, March 3, 2010

More pics!

Girls sharing breakfast!
Our neighbor Miranda had a birthday! Sophia loves hanging out with Miranda!
Sophia after a sink bath. So darling!