The things we never knew

She’s beautiful. Stunning, really, with those long, curled eyelashes. She has warm chocolate colored hair, with a curl on the ends. Her eyes are always crystal clear and her lips are the perfect shape for a pout or a dazzling smile. She takes our breath away.

Speaking of breath…..

She didn’t take one. Y’know when you push and you push and you push and finally the doctor says “STOP PUSHING!” and you have to hold it there, even though you want to keep pushing until you can’t push any more? And then you are allowed to push again, “but slowly,” and then the baby is there, up on your chest, everyone crying and happy and the baby is pink and crying or pink and quiet or anything but blue and not breathing. Anything but whisked away and suctioned and nurses talking in quiet voices, telling other nurses to call someone else in. Anything but being taken away from the room, with the doctor hurriedly stitching you and telling you “He’ll find out what’s wrong.” Anything but nobody looking you in the eye. Anything but that.

The funny thing is, I knew this wasn’t the worst. We’d already experienced that. The worst is when they let you keep the baby on your chest. Knowing that nothing they can do will make him breathe. The worst is when they tell you that you can keep him for five hours before the mortuary will be coming to pick him up. The worst is when they do look you in the eye – and tell you that they’re sorry but there’s nothing they can do.

It’s the things that they CAN do that we are thankful for. It’s the things they whisked her away and did. How thankful we are for things we never knew.

NICU is a whole different world. A world of gowns, quiet voices and wires. A world where we forget that she is ours and we let others tell us when we can hold her, when we can visit her and what her schedule is. It’s a world where we are told to expect the worst and told that we “don’t know what we are getting into.” We are thankful for every small thing: when they let me hold her for the first time, when we are able to put clothes on her and when she gets moved out of the most critical room into a smaller room. We are thankful when they finally give her a diagnosis: Jarcho-Levin Syndrome. Now we have a name and something to learn about. We don’t know to be thankful that they want to do a tracheostomy, but we end up that way. Thankful that she can’t become extubated anymore, thankful that we can start mouth feedings and thankful for how much easier it is to hold her.

We don’t know to be thankful when they move her to PICU either. We are frightened by change and by new nurses. They are frightened of us. They have heard we are “very involved.” They have also heard we are “in denial.” Soon we are thankful to be there. We love the new nurses, the private Noah’s Ark room and the nurses are used to us being involved and have their own views of whether or not we are in denial. And we are oh-so thankful when we find out there is a place where they can give her ribs.

We know new things now. We know to be thankful when she can tolerate a larger feeding, when she doesn’t have to be suctioned too many times, when she does not have “episodes” where she de-sats and they have to work on her to keep her alive. We are thankful when she switches to the home ventilator, when she is accepted into the rib project in San Antonio and when we find out we can ride on the jet with her.

Then, eventually, there is a new hospital in a new state with new staff and we know to be thankful we are here. We know to be thankful for these two brilliant doctors who invented these vertical expanding prosthetic titanium ribs. We know to be thankful when they tell us they will do the surgery on her, even though they have never had a child with her exact problem. And even more, we know to be thankful when they say she does NOT have Jarcho Levin.

And coming home. We never knew how thankful we would be when she came home. How could we have? Ten months ago, we thought she would be wheeled down in my arms to our car and to our little carrier/car seat and our life would go on as normal, with a few more naps and one more diaper bag. But now we knew. Now we knew to be thankful for the ambulance drivers who brought her home in her already-forward-facing car seat. And we were thankful for the nurses and respiratory therapists who filled her room with items we had never heard of before she came. Thankful for strangers in our house taking care of our baby and thankful that at least we know she is ours now and we choose when to hold her and what her schedule is.

We now know things we never wanted to. And the things we know, we are thankful for. We try to help others that are a few months behind us in the learning process; new mothers and fathers learning things they never wanted to know. And they are thankful too, for the things they never knew…..

Story about Olamide

NORMAL, Ill. (AP) - Friends and classmates mourned the death of an Illinois State University senior as authorities continued investigating how the missing woman's body ended up in a burned-out chicken coop in Mississippi. Authorities said dental records confirmed Wednesday that the remains were those of 21-year-old Olamide Adeyooye, a college senior last seen two weeks ago renting a movie at a video store near her off-campus apartment.

"You always hear about stuff like that on the news but it never hits close to home," said Adeyooye's friend, Rick Paterala, 23, of Schaumburg. "She was a great person."

Authorities did not release a cause of death and offered little new information on an investigation they say will now expand to Mississippi.

A native of Nigeria who moved to suburban Chicago when she was 8, Adeyooye was last seen Oct. 13 at a video store near her off-campus apartment in Normal. Her car, a green 1996 Toyota Corolla, still was missing.

Normal police Lt. Mark Kotte said authorities were still investigating how Adeyooye ended up in Mississippi. But he added: "It is not an incident of somebody going around preying on college students."

In Mississippi, Newton County Sheriff Jackie Knight said investigators believed Adeyooye's death took place in Illinois.

The body was found Friday as workers cleaned up a chicken coop in Lake, Miss., where firefighters had put out a blaze four days earlier. The coop is about 60 miles from Interstate 55, a highway that passes through Normal.

Nearly 40 investigators, including FBI (website) agents, took part in the search. Her family and friends posted fliers and sent out messages through Web sites and blogs.

"We still have a list of persons of interest and that hasn't really changed," Kotte said. "We still have quite a few people that we need to talk to, and also people now that we will be reinterviewing."

Adeyooye, who studied laboratory sciences and biology at ISU, was due to graduate from the 20,000-student college in December and planned to return to Chicago to complete her clinical training at a hospital.

She was reported missing when she didn't show up for classes and her weekend job as a waitress. Police launched a criminal investigation into her disappearance last week after evidence and interviews led them to suspect foul play.

Adeyooye's father said his daughter was diligent, quiet and never offended anyone.

"I want the justice to take place," said Adiodun Adeyooye, fighting back tears.

Pray for Olamide Adeyooye's family

For some reason I got caught up in the case of Olamide Elizabeth Adeyooye - a missing Illinois State University Student. I read her blog, her friends' blogs, her boyfriend's band's web site and his blog, etc. She was found today, murdered. Please pray for her family and friends. I can't imagine what they are going through.

Thank you!!

PECULYR

"I'm peculiar
and getting more peculiar
walking 'round talking prosperity
living my life with my future free
I'm peculiar
and getting more peculiar
and if society doesn't agree
that's a good indication to me!"
taken from a David Ingles song (I think)

Got my new vanity license plate this weekend....PECULYR. I love it!!!

Exodus 19:5Now therefore, if ye will obey my voice indeed, and keep my covenant, then ye shall be a peculiar treasure unto me above all people: for all the earth is mine

Deuteronomy 14:2For thou art an holy people unto the LORD thy God, and the LORD hath chosen thee to be a peculiar people unto himself, above all the nations that are upon the earth.

Deuteronomy 26:18And the LORD hath avouched thee this day to be his peculiar people, as he hath promised thee, and that thou shouldest keep all his commandments;

Titus 2:14Who gave himself for us, that he might redeem us from all iniquity, and purify unto himself a peculiar people, zealous of good works.

1 Peter 2:9But ye are a chosen generation, a royal priesthood, an holy nation, a peculiar people; that ye should shew forth the praises of him who hath called you out of darkness into his marvellous light...

(all taken from King James version)

Another answered prayer!!

God told me a few months ago that I need to start writing again...poetry, fiction and non fiction. I asked Him to show me what He wanted me to write. Tonight He told me the name, genre and (very) basic story line to the fiction I will be writing. Not only that, but He gave me more than one title....I will be writing a series!!! HALLELUJAH! Glory be to GOD! I am so excited!! I can't wait to start. And that laptop....what a BLESSING right now!!! WOOHOO!!!

Back to the new normal

Brittany is back from Albuquerque after a month. We are soooo excited. Now things are going to be able to go back to the "new normal." We started back to school yesterday, Britty had a co-op about Egypt today (she is mummifying a piece of chicken and they made paper), and she has PE/Art tomorrow. I am so excited to be able to start school and get going "for real" this time...knowing I have a while before any interruptions! WOOHOO I seem to manage my schedule better when we are on a good school run. I am giving us until next Monday to get started on time with all chores done, etc. We ALL need the practice. LOL.

Linda had to go home early yesterday, she got sick, so we had the baby to ourselves all day. We did most of our school in there, including Brittany making an Egyptian pyramid (with secret passages and temples) out of legos. Sherria came over last night for me to practice her hair and makeup. She is going to a Halloween party as the Cinderella from Ever After and I wanted to get her makeup just right. I did it with butterfly wings coming off of her eyes and LOTS of glitter. I glittered her shirt, my shirt, our pants, the floor and everything within the area. It was quite a bit of fun. LOL I also put her hair up and we are going to glitter it quite a bit as well!!

Well I need to go and get things going around here. Linda came in late so I could go to church tonight, so I have been having Kaedy-time this morning. Brittany is back from co-op, though, and it is now time to actually get to work...

See you soon....

Back Again

I was taking a break from blogging, mostly because my friend Brandi was taking a break, and when I write, I always consider her the audience. She is back blogging, so I am too!! LOL. Hi Brandi!!!

A lot has happened since I last posted. We had a weekend nurse for one weekend and one day and then we fired her. We are back to no nurse on Friday and Saturday. Linda, our wonderful day nurse, traded Friday for Sunday so we could go to church on Sundays. She also changed her hours on Wednesdays so I can go to church Wednesday nights. What a blessing!!!

Speaking of blessings, I was SUPER-BLESSED today. (Dr. Carey says SUPER is the highest word in the heirarchy of praise) My friend Melanie and her husband Jim GAVE me the laptop they had lent to me in San Antonio. I feel so spoiled. I danced around the house today every time I thought of it!!! This is SUCH a huge blessing....especially for the days/nights with no nurses and any other trips we may have to take. They are so generous, it is amazing when people are like that. Michael is going to get a wireless router so I can log online with cox and then I will be set! WOOHOO!!!!

Kaedy's first sign!

We have been teaching Kaedy "Baby Signs" for about 4 months. The other day she did her first sign for Linda! She did the "all gone" sign when Linda took something away from her! We are so excited. Now we have to get more disciplined about teaching her signs, knowing that she is "getting" them.

New Diversion

I have gotten TOTALLY sidetracked on this new "toy" Michael found this weekend. It is called Google Earth and it is a program by Google where you can zoom in from outer space to see pretty much anywhere on earth. It is much better than the other satellite sites I have tried. First of all, it is from 2005, second of all it has pictures of EVERYWHERE I have tried, whereas the other ones did not have pictures of Paula's house in the boondocks or other outlying areas.

I have found all the houses I have lived in since birth - including many in NM, one in CO, one in CA; all my various schools; many vacation spots including my friend's house on Cape Cod and my great aunt and uncle's house on Martha's Vineyard; a lake we stayed at in Italy, some places we visited in Germany (although I am still looking for Munich), Downtown San Antonio, Michael's places of residence, many of my friend's houses (although I can't find you, yet, Brandi!!).

Anyway, if you decide to download this program, do it realizing you will get SUCKED in and "play" on it quite a bit.

Why not to walk around for two months on a broken foot....

Well I broke my foot. How you ask? I have NOOOO idea. I know when though.....the day we moved the FAITH library. I was out by the truck talking with my friends and when they drove away, I limped into my garage. I had NO idea what was wrong or how I did it, just that all of a sudden my ankle/foot REALLY hurt. I was not able to go to the doctor, because soon after that Kaedy and I went to San Antonio. It hurt while I was in San Antonio on and off. When I wore my tennis shoes, it did not hurt nearly as much as when I wore my sandals. Some days I had a severe limp and others I hardly limped at all. When I got home, it still hurt but then we were caught up in bringing Kaedy home. Last weekend, I was coming down the stairs in the middle of the night when I stepped on that foot and it gave out. I fell down three stairs and pulled some muscles in my back. I went to the doctor on Monday afternoon and found out that my foot is broken, my ankle is sprained and my back muscles were pulled. I got some meds and a wooden shoe (no, not like what the Dutch wear). I go back to the doctor in 14 days and he will re-xray and decide what to do next - whether to cast it, keep me in the wooden shoe, or ??? Anyway, my foot feels MUCH better when I am wearing the wooden shoe. I accidentally came downstairs without it today and really really felt it. I am so glad I had a chance to go to the doctor!

We have a new nurse this weekend. She only works 9-5 so we fill in the times in between our night nurse's 12 hour shift. The new nurse, Kim, is very nice and really enjoys Kaedy. If she worked every weekend 9-9, she would be just about perfect! LOL

Emily: Future nurse?

BEWARE: this is a little graphic, those with weak stomachs, skip to the second paragraph.

We don't have a nurse this weekend. We are blessed that we will have a nurse every other weekend, which will be nice. Michael had to work yesterday morning, so Emily and I were here with Kaedy by ourselves. I was talking to Paula on the phone when I saw/heard Kaedy coughing and she started to de-sat (her oxygen saturation level went down). She usually does not de-sat, even when she coughs or has a plug in her trach. I got off the phone and quickly gloved up, got the oxygen going on the ambu-bag, turned on the suction and tried to suction her. When I took off her vent tubing, there was a big bloody glob in her trach. I tried to suction it out and the suction wasn't working. I took my non-sterile hand and tried to figure out what was wrong with the suction machine, and couldn't find a thing. I thought maybe the tubing got clogged, because it had some mucous on it, so I opened up a new kit and got new tubing. No luck there, either. Meanwhile, her sats were still dropping. I ambu'd her (aka bagged her) and she came back up, so I tried to put her vent on her to go get the back up suction machine. As soon as I put the vent on her, she de-satted. I bagged her again, up to 100, put the vent on, and she de-satted into the 70s, very quickly. Sooooo, here I am, just me and Emily, Kaedy needs to be bagged and I need to go get the backup suction machine which is at the end of the crib, but completely out of reach.

I then taught my 4 year old how to bag the baby.

She bagged her for about a minute while I got the machine and got a new sterile kit ready to suction. I go to suction Kaedy again and the backup suction machine was not working. I have Emmy bag her again while I figure out what was wrong (this time I could figure it out) and open up ANOTHER sterile kit and suction her SUCCESSFULLY this time.

Later, when Michael came home he was able to figure out what was wrong with the first suction machine.

So far this is the scariest thing that has happened to me, personally, with Kaedy. I now COMPLETELY understand why we need to have two people here all the time, preferably adults. Unfortunately that means that we will only be able to go to church every other weekend, one at a time. I am already going on Wednesday nights, by myself. I will be going Saturday, Michael will be going Sunday morning and I will be going Sunday nights, every other weekend. I can't wait for a better scenario!!! I really miss church when I am not there. And I am not able to do all I want to do for the church, when I can't be there, as well.

I am looking forward to the next season of my life!

I'm a couch!

Emily and I were reading a book together before naps today. It is called "I like me." Whenever I read her or Brittany books, they always pick out which one of us matches each character in the book. Today, Emily was saying: Kaedy was the little girl, Brittany was the dog, Emmy was the cat, Daddy was the bird, and I was the couch. THE COUCH???? "Why am I the couch?" "Because everyone is cuddling on you!!!" OF COURSE! :-)