FINALLY....an Explosion in Speech!

For anyone who has followed me, or my journey with Jacob, you know that speech has been one of our biggest struggles.

Getting ready to go to speech therapy! 

Not only is he getting 30 minutes of speech at school each day, but he has another 30 minutes per week at a private agency.

Jacob's progress has been excruciatingly slow.  But there's been progress, nonetheless.  When he started at Youthful Horizons, he was essentially mute.  He didn't even grunt much.  We had him using Geminii system, but he got bored quickly.  And I think that's because the Geminii system is geared more towards people with Autism.  There was very little emotion in the programs, and it relied heavily on repetition.  All good things, don't get me wrong.  But he was bored. So we topped out on his progress pretty quickly, then backslid for a while. And, at $99/month for the program, we couldn't afford to keep using something that wasn't working.

About that time, we found Debbie at Youthful Horizons She and Jake have been an awesome fit.  She's mellow, nice, and she has all the best toys--at least Jacob seems to think so!

I've learned to appreciate the process of learning to talk.  First there is learning to push out air forcefully enough to make noise. Then you must learn to control your muscles enough to manipulate your lips enough to create specific sounds. And don't forget about placement of the tongue, jaw, and awareness of the cheeks, face, and other muscles.  All of these things had to be addressed in proper progression, while concurrently teaching him other means of communication via the PECS system and more sign language to enable communication RIGHT NOW.

Jacob is nearly 6 1/2 now.  Sign language is still his primary language, but now he's added a few words to his vocabulary.  He can say things like purple, bye, dad, mom (pronounced ba), Elisha (pronounced uheesa), he calls Courtney (seesa), bus, please (pronounced psss), blue (boo), there it is, that, dog, Craig (his PT), and occasionally, when he's in a good mood, I'll here his say Debbie.  13 words and 1 phrase. 

I'll TOTALLY take it!

And on those days when I'm frustrated that he still prefers to yell rather than use his words, I remind myself that we couldn't understand his older brother (who is normally functioning and actually quite smart) until he was 12! 

Patience, grasshopper.  Patience.

Clumsy Children = Childproofing....Again

In a matter of ten days, Jacob has wound up with a goose egg on his forehead the size of a golfball, and Courtney has has two major falls.  Now she's got bruises all over her arms and face.  It looks like she's being abused at home. Her bruises are so bad that I had to e-mail her teacher and let her know what was wrong and ask her to keep an eye out for more clumsiness at school to figure out if she's just clumsy or if I need to have a doctor check her out (inner-ear infection,maybe?).  Gah!

I've come to the point where I'm considering baby-proofing my home for my 6-year-old and my 4-year old!  OK, there's no way to Jacob-proof a home.  But I'm hoping to minimize the damage before Child Services gets called in. 

That's how the babyproofing foam edges came into play.

The picture to the left is how it came (with double sided tape) and the picture on the right is the edging on our table (I'm considering adding it to the wrought iron railing, but black on black doesn't make a good picture, does it!)

I was pretty impressed with this stuff because of how impact resistant it was and how easy it was to install.  Since it was a soft foam, I knew if Jacob hit it full-speed, he wouldn't end up with another giant goose egg.  Plus the tape, meant I wouldn't have to keep re-installing it every time Jake decided to pull it off and use it as a weapon against Courtney (or any other member of the family!)   - OK, at least it slowed him down a bit!

Granted, there aren't enough foam edging in the world to compensate for Courtney falling down the stairs again, but if I can prevent even one more bruise from happening, it will be worth it!

Hopefully these drastic measures won't be necessary for long, and both my children will regain their equilibrium soon!

Sleep Apnea Sleep Study for Jake

At Jacob's last  check up with the pediatrician, she put in a request that he get a sleep study done because children with Down syndrome have a higher tendency to have issues with sleep apnea.

It took months for us to connect with the doctor, have our preliminary visit, then actually have the sleep study done.

I'd had no idea what to expect from the study, aside from the fact that Jake would be there all night long and they'd be monitoring his sleep patterns somehow.

We showed up at the hospital at 7 p.m. on a Tuesday night and met with the technician. She showed us to a room that looked very much like a hotel room complete with a queen sized bed, a couple night stands, and a chair in the corner.  There was a bathroom connected to the room, and a second room where I could sleep if I chose.  She pointed out the cameras that would be used to watch Jacob while he sleeps, then showed me all of the cables that would be attached to various parts of his body.

Jake was NOT impressed.  From the second she started trying to attach the cables to his body, he began fighting.  He'd kick, and scream, and yell, and push, and wiggle--anything he could do to keep them off his body.

We struggled for FOUR hours to get them on him, then to get him to lay down in bed, and to keep him from yanking the cables out of his hair and off his face.

FOUR HOURS.  I finally had to physically restrain him with both my arms and legs until he couldn't move, then wait for him to cry himself to sleep.  By the time he fell asleep at around 1:00 a.m. both he and I were a sweaty mess.

By morning, the technician verified that yes, he did have sleep apnea, and maybe I should get a sleep study done too.  Um, you'd sleep like a brick and snore too if you'd just fought Jacob for four hours.  That kid has stamina.  I'm just sayin...

I heard nothing for another six weeks, then finally hear from the pediatrician asking if we'd ever had the study.  I confirmed that we had and that we were waiting on results and were told it may take a few months to hear anything.  She was not impressed, so she made phone calls, and a referral to the ENT.

At his appointment this week, we were told that Jacob had obstructive sleep apnea and another form of apnea that affects his brain waves when he sleeps.  He will be getting his tonsils out shortly to help with the apnea since there is no way Jake will sleep with a CPAP machine.

The ENT said that once the tonsils were taken out, they normally do another sleep study.  I quickly informed him that there was NO WAY I was going to subject Jake to that study again. Not for a very long time.  He agreed when I told him the story and said that instead he'd do a follow-up with him after the surgery to make sure his airways are doing well.

Here's to hoping that will be enough, and we don't find ourselves in another all-night war of the wills!

The Start of a FABULOUS New Year!

Call me naive. Call me an eternal optimist. Call me down-right stupid.  I don't particularly care.  But I've decided that 2011 is going to be a FABULOUS New Year!

2010 was not my favorite of years by any stretch of the imagination.  I am 3 hours into this new year and I've decided that I am NOT going to have a repeat of last year.  Nope. Not me.  Not gonna happen. Nuh huh.

As I took stock of 2010 and began forming the goals for this upcoming year I realized that I had sacrificed last year by doing all the  nasty, icky, hard-to-do framework that will be necessary to make this year a good one.

Sure, in 2010 we spent about 6 weeks in the hospital, and numerous other days talking to doctors and specialists.  But in 2011 we will FINALLY be getting our heart surgery, and progressing down that road of recovery which will include a much happier, healthier, and more active little Jacob in our lives. Yay!

Yes, 2011 will have it's ups and downs but the experiences from the last 2 months have taught us to be better prepared both emotionally, and physically for what the next several months will bring.

Plus, I've never been the sort of person who lays back and lets life 'happen' to me.  I seem to have a tendency to run after it, catch it, and mercilessly beat it into submission until it bends to my every whim and desire.  KC often refers to me as a charging bull. 

Either way you look at it, I CHOOSE not to freak out this year.  I CHOOSE to make this year a FABULOUS one filled with joy, excitement and a sense of awe and wonder at each and every one of the blessings Heavenly Father sends our way. 

Thank you everyone for the love, support, words of encouragement, and numerous acts of service you have sent our way in 2010. In spite of it all, we have been truly blessed by each of you  and are privileged to call you family and friends. 

I hope that 2011 is just as fabulous for all of you as I'm SURE it will be for us!

HAPPY NEW YEAR!!!

No News is Good News

Christmas was wonderfully uneventful at the Allred home this year!

Jacob laid on my chest as we watched our children and family open presents. Particularly fun was watching Courtney, our 19-month-old, open presents. Last year SHE was the baby in my arms as presents were being opened. But this year she discovered Christmas in full force!  The entire time we opened presents she was squealing with delight and we'd hear a chorus of, "Oh my goodness!", "Awesome!!!", "So Pretty!", and so much more!  I wish I'd had enough forethought to break out the camcorder for the event.  That little girl was in her element!  And it seems that each and every present she opened was received with the most enthusiastic squeals.  I don't think there was a single present she received that she didn't absolutely adore. Watching Courtney open presents with all of her enthusiasm was absolutely precious!


As for the rest of the day, it was wonderfully low-key.  I had spent much of the few days prior to Christmas secretly holding my breath that Jacob wouldn't suddenly find himself in the hospital again. So when Christmas came and went, I was able to sigh with relief and silently give thanks to Heavenly Father for the little miracles in our life.  Especially since December 26th, I came down with the crud.

So, Monday I dutifully called our pediatrician to have her check on Jacob (with the sheer amount of time I've been holding him, there was NO WAY that little boy was not going to get what I seemed to have caught). In deed, Jacob did have a small cold, but so far there is nothing to worry about and we just needed to break out a humidifier and keep an eye on him. Yesssss!!  I'll take "relatively healthy" any day!


Oh, and he BROKE 10 LBS!!!! :)

Our little boy is now 10 lbs 2 1/2 oz.

Yay!!!

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Miles of Smiles

When all is said and done, today can be considered one of those good days.

Last night I pulled an all-nighter (Yep! Not a wink of sleep!) trying to finish Christmas presents, working on GAINs (assessments) for my sister, taking care of Jacob, and even trying to squeeze in a little bit of house cleaning along the way.  But today was the day we got to spend with the cardiologist going over Jacob's progress and discussing his heart surgery.  This was supposed to be a Dr. appointment that would last at least 2 hours long, so if I was going to get anything done it had to be while the family was sleeping. 

Our appointment with the cardiologist had been set weeks ago and we had even received a packet in the mail reminding us of our appointment, which I diligently filled out in anticipation of our visit. I started getting Jacob ready for the appointment at around 6:30 a.m. - bath, re-dressed his ND tube, got him dressed, packing his diaper bag, etc.  When we showed up at 8:30 a.m. the first thing out of the receptionist's mouth was, "We have you scheduled for 11:30 a.m.".  I looked at her and said, "No.  You have us scheduled for 8:30" and tossed her the paperwork, complete with the scheduled time on the front page, to her.  She looked at it and said, "Oh.  Hmmm".  Apparently they had 'lost' our appointment.  So, they had to scramble to find a way to fit us into their day.  We were told, "You're lucky! The doctor's next appointment is running late so we can squeeze you in!"  Um, no.  Apparently these ladies had no idea what kind of bullet they had just dodged.  I had not slept the night before, I had not eaten yet, and I was on my period.  Strike 3.  You're out!  Out of patience, that is.  With those three factors in play I was in noooo mood to play nice this morning and those ladies were darned lucky they didn't try to make us go home (which is a 30 minute drive, by the way) and have us come back in a few hours. 

So, we sat down and waited to have Jacob's name called......and waited....and wait...and waited.  45 minutes later, they finally called us. We got to weigh Jacob and he was up to 9 lbs 13 oz!!!  Just a few more ounces to go until he reached his 10 lb goal! The nurse did an EKG, which took longer to put all of the stickers and monitors on than it did to do the actual test!, took his blood pressure, measured his oxygen levels, and asked about his medicines.  Then we waited....and waited.....and waited some more for our doctor. FINALLY, he came into our room and sat down to talk to us about Jacob.

He asked us about his medical history and hospital visits, problems with feedings, whether he was getting the RSV shot, etc.  He asked us what our expectations were with the heart surgery, etc. He explained to us that he believed that Jacob's feeding issues were not going to go away any time soon and that lots of people usually have a surgery to close off the esophagus and put a feeding tube in through his stomach before they do the heart surgery, which is a much more permanent solution to his reflux.  I told him that I'd been told that Jacob would grow out of his feeding issues eventually and that I was prepared to wait it out rather than do a surgery to put a tube through his abdomen into his stomach permanently.  He was not too keen on this idea stating that he is an impatient man and that he doesn't like to wait for things that take too long and said that we could probably wait 6-8 weeks and if he isn't improving by then we should get the surgery done.  I still was not sold on the idea of creating a permanent solution to something that may resolve its self in time - especially a solution that resulted in feeding Jacob through his stomach for the rest of his life.  So, I'm opting to be very very patient with his feedings.

After much discussion, the doctor convinced us that it would be in Jacob's best interest to wait another 4 weeks before he gets his heart surgery.  So, we are tentatively scheduled for his heart surgery the 3rd or 4th week of January to do Jacob's heart surgery.  We will be going back to see a cardiologist in 2 weeks to choose a hard date and meet with a surgeon.  And the guesstimate that Jacob will be back in the hospital for about 2 weeks for recovery.

He warned us that this heart surgery would not make Jacob any less fragile and would probably not fix any of his issues. It was only going to fix his heart.  Hmmm.  That's not what he said at our initial visit.  I guess at this point nothing should surprise me and I should take everything with a grain of salt.  So, that's what I'm going to do.  Whether it fixes Jacob's other issues or not, this surgery is still a necessary part of his development and an essential step to his progress. So we will go forward with it.  If it helps with his other issues then BONUS! If not, we'll address each issue after he recovers from his surgery.  After our 20 minute conversation, he changed Jacob's prescription by increasing his Lasiks to .5 mg 2 times per day and sent him down to get an X-ray to make sure his heart hadn't grown too much.  By this time we'd been at the doctor's office for more than 3 hours and had a total of 30 minutes face time with the doctor and his staff.  Ugh.

On the up side, while we were waiting at the cardiologist's KC and I got to watch Jacob laugh in his sleep. It was sooo cute!

Then, later this evening we were having our nightly 'interaction' time where I'd smile, talk, and sing to Jacob to help him interact and begin working on mimicking the facial expressions he sees from me.  Lo and behold, I was grinning and talking to Jacob and he began to give me half-smiles right back at me!  Not just one random gassy smile, but several deliberate half smiles that just melted my heart! I wish I'd had my camera with me!

So, even though my day had a rocky start, I can definitely say that it ended with miles of smiles that makes all the other crud just melt away to the back of my mind.  It's the moments like that which remind me of why it is that I chose motherhood over the military and why I don't regret a single minute of that decision!

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At least he won't get pregnant. Problems with Feedings, and Medication Mix-ups.

I apologize for not posting sooner.  Life around here has been crazy busy...as usual.  So, here's the update to let you know what's gone on the last several days.

The hospital wound up putting a feeding tube into Jacob and he finally got to go home on Saturday the 11th. It became very apparent very quickly that the feeding tube was not all the doctor had made it out to be.  Jacob can, indeed, feel the tube and spends a lot of time gagging, sneezing, coughing, etc.  In spite of what the doctor said, he still ends up gagging until he vomits at least once a day.  This gagging and vomiting continued to get worse and (even without the presence of food in his stomach) caused us to return yet again to the emergency room earlier this week to see if his ND tube had become dislodged.  Luckily the tube was still in place, but the emergency room doctor had a talk with the cardiologist and then sat us down to give us a little friendly advice.

The cardiologist explained that it appeared to him that we were assuming that everything would be 'all better' with Jacob once the heart surgery occurred (which we were - because that is what all the doctors were telling us).  However, in his experience as a cardiologist with patients just like Jacob, we needed to be aware that his problems with things such as the reflux and issues with feeding were not going to go away once the surgery occurred.  He explained that a normal child would probably grow out of the reflux but Jacob is not normal and will most likely need some sort of surgery to repair the issues with reflux.  Normally, they would suggest that he get the reflux taken care of before the heart surgery, but because of how fragile Jacob is, the heart surgery must be done first.  However, the heart surgery cannot be done until he gains weight which is where the reflux becomes a problem.  Thus, creating a bit of a catch 22

for Jacob.  The cardiologist also mentioned that the pediatrician has done nothing to help create some sort of plan for the care of Jacob - she seems to just be reacting to all the diagnosis but not doing anything to help get him better.  He suggested that she needed to become the 'quarterback' so-to-speak and take charge of the situation.  Since she is the only doctor who will be with Jacob long term it is logical to think that she should be the person who creates the plan of attack, coordinates with all of the doctors, and makes sure that Jacob gets the care he needs in order to take care of all of his problems.  This would take care of the problem we have of all the doctors changing the diagnosis of the previous doctors by putting her in control and making the final decision on everything based on all of the information the specialists provide.  KC and I both agreed and promised the emergency room doctor we would talk to the pediatrician.

The next day, I called her office to discuss the fact that Jacob had been completely removed from oral feedings because he couldn't keep the oral feedings down.  The only problem is that it took 2 hours for a nurse to call me back and when she did call me back I was informed that my doctor was not in that day and that she would forward the information onto the doctor the next morning.  What?!  I was supposed to let my 8 lb baby STARVE because my doctor wasn't in????  Nope.  I don't think so.  So KC and I worked the numbers as best we could, upped Jacob's ND feedings per hour to reflect the lost calories from the oral feedings and crossed our fingers that we weren't hurting out baby by messing with his feedings.



I finally got to talk to my doctor around 2PM the next day.  Yes. Almost 24 hours later - and 36 hours since his last oral feeding I talked to my doctor.  I explained to her what we had done, and the fact that we were not happy that we had to wait so long on a matter that had sent us to the hospital twice in the last two weeks. She agreed and said that she'd talk to her nurses about the issue and have them call her at home, since this is what they did on other matters with other patients.  We agreed to meet on the 21st after I meet with the cardiologist to discuss Jacob and his feedings in more depth.

So, just when I thought things were getting better and calming down, today my husband KC came home and wound up having a 104.8 degree temperature.  Soooooo off to the emergency room we went again.  I got to see KC hooked up to many of the same machines that Jacob had been hooked up to - IV, oxygen, heart rate monitor, respiratory monitor, breathing monitor, blood pressure cuff, oxygen level monitor, etc.  He even got a lumbar poke to check for meningitis like Jacob did.  It was a bit surreal.  Somewhat eerie.  And I'm VERY VERY happy that they ultimately couldn't find anything wrong with KC and we were home a mere 6 1/2 hours after we entered the emergency room.

While we were at the emergency room, I had Elisha home with Courtney and Jacob and realized that this was not an acceptable option for her (I can barely take care of the two children on my own during the day - how was my 15 year old supposed to do it?). Luckily, one of her friends' moms is a nurse and was willing to take all four of my kids while we were in the emergency room and take care of Jacob and give him his medications while I was with KC.

When I finally came to her home at 11 p.m. to pick up Jacob they packed everything up including his medications.  As they were packing, I noticed that she had a purple box of pills in the diaper bag.  I asked Melissa if these pills were what she had given Jacob (he was supposed to take 1/2 a Previcet pill twice a day) this evening.  She said that Elisha had given him his pill, so I looked at Elisha and she looked at me and said, "Yeah".  I looked at both of them and said, "Well, at least we know he won't be getting pregnant!"  Elisha had taken my birth control pills rather than the Previcet and had fed them to Jacob!!! :)

What a perfect ending to another wonderful day!  But at least THAT is one boo boo we can laugh about!  :)

4 Things Things to Be Happy About When My Child is Fighting For His Life in the Hospital

There's a long-standing joke in my family that one must NEVER EVER EVER pray for patience.  Because when they pray for patience, God decides the best way for us to learn patience is to give us some massive trial in our lives that we have no control over until we're beaten down enough to realize that the only thing we can do is PATIENTLY endure. 

Hmmmm.  Apparently I've been talking in my sleep again. 

I apologize for last night's ranting.  I should never blog at 4 in the morning.  What was I thinking?!

Yes, a few hours under my belt DID do me some good.  I was able to get about 3 1/2 hours of sleep before heading back to the hospital and relieving KC of his all-night shift with Jacob.  And when Jacob was in my arms, it only took seconds for me to realize that ultimately, all was right with the world again when we were together - regardless of where we were.  Having him snuggle up to me and contentedly sigh and fall asleep has a way of sapping all of the anger and frustration away.  We spent the entire day just sleeping and snuggling with the occasional interruption of those pesky medical workers earnestly trying to find out what was wrong with my baby boy.

We met with Ultrasound, where they strapped Jacob to a board, had him drink barium - laced sugar water (which he LOVED by the way - he had a fit when they took it away from him before he finished!) as they watched the flow of the barium down his digestive track to make sure that all of his anatomy was in tact, not twisted, and working properly.  Clean bill of health!

We then met with Radiology where they laid him on a table and gave him more liquids to check for reflux and to see if the liquids were coming out the "other end" in a timely manner.  Anatomically, Jacob looked fine, but the radiologist said that Jake had reflux all the way up to his mouth.  Soooo, to add to baby Jake's list of ailments we now have reflux.  But I'll take reflux ANY DAY over something like a twisted colon, or misplaced intestinal tracts, etc. 

With a diagnosis of reflux in hand, we met with a speech therapist (yep! the infant got to meet with the speech therapist!) who sat down with me during several of his feedings during the day to assess his current feeding habits and then to show me a modified feeding regimen will help inhibit all of Jacob's reflux so that he can keep his food (and medicines) down and his weight up.  The result? We now have Jacob on a prescription formula (who know that they even had prescription baby formula!) with a page-long description of how we are supposed to feed Jacob (How to mix the formula, position to feed him in, position for burping, when to change his diaper, position he's supposed to sleep in  and so much more!) They brought in a wedge and sling for his bed (If I can ever figure out how to download pics from my cell phone I'll download the picture of him in his sling - he looks like he's in a straight jacket!!) for sleeping. So, it looks like rather than waiting till Christmas to kick Courtney out of her Crib (she's getting a "big girl bed" on Christmas) - we'll have to kick her out early because the wedge and sling definitely won't fit in his cradle. 

Through it all though, I just try to remind myself that this visit isn't really life-and-death.  It's a little hiccup that can be quickly addressed, managed, and we'll be back on our merry way in no time.  In fact, once we'd met with the speech therapist the next two feedings were spit-up free!  That is until the night shift nurse came in, listened to us give her the run-down of what we were doing to manage his vomit, then ignored us and gave him his full dosage of Dijoksin and Zantac rather than giving him mini-doses to help him digest better.  Who'dve guessed that he'd throw up EVERYTHING 30 seconds after she squirted it into his mouth all at once? (sigh)  Luckily that will be the only dose she gives him before the next shift change. Hopefully we can get someone who will listen to us, what we are doing to deal with the vomiting, and try to work with us rather than doing it their way and having Jacob reap the consequences.  Plus, we now know what's wrong, and have the tools necessary to manage this problem at home.  Its just a matter of him gaining enough weight and keeping enough formula down to get him out of the hospital so we can begin doing what we know works for him rather than having to fight all of the various medical personnel at each shift change.

OK, so I REFUSE to end ANOTHER blog on a negative note, so it's important for me to say that yes, life right now is hard.  Yes, Jacob is going through a rough patch.  Yes, this has been an incredibly emotional experience.  But I've got to look on the bright side too.

1. I've got an incredibly supportive husband who has done nothing but take care of our family, advocated for Jacob time and time again, and gone above and beyond the call of duty when it comes to taking care of me, our children, our home, and everything else that's been in upheaval the last 6 weeks.  I'm so blessed to have him as my rock right now. 
2. KC's work has been such a tremendous blessing. He's had the ability to take almost a month off of work to help out  and be there for Jacob while he was in NICU and PICU.  Where else could a person do that and know that he will still have a job when he comes back?  We've been so blessed to have Avista, the support of their employees, as well as the incredible insurance that we will be making very good use of in the upcoming months and years. 
3. I'm so blessed to have the family that I have - both on my side and on KC's side.  What a huge support system we have - both physically, emotionally and spiritually.  I am speechless at the outpouring of love and help that I've received from my family through prayers, babysitting, transporting, helping out around our home, meals, phone calls, blessings, e-mails and so much more!  The support we have received from our family has been unparallelled.  We've been so blessed!
4. Where the family left off, my ward and our friends kicked in.  All I can say is "Wow!".  The meals, the phone calls, the rides for the children, the help around the house, gifts, friendship, shoulders to cry on, prayers, cards, and so much more.  I'm speechless. 

I've had more than my share of opportunities to see the other parents in the hospital visiting their children.  How lucky I am to be able to care for my child and not worry about the other three at home, or my home, or my husband, or any other responsibilities.  We have such a massive support system that we can rely on when necessary.  And so many people have little or nothing to rely on in their times of need.  I feel almost guilty for being blessed with so much by so many.  For all of you I am abundantly thankful.

The Frustration of Being out of the Hospital only ONE day

So, we have good news....and we have bad news.

Good news is, JACOB CAME HOME A DAY EARLY YESTERDAY!!!!!!!!!!

Bad news is......he was re-admitted again today (Saturday) evening.

@!#$ @#$%^$%^ $%&^^#%$^ %&*(&)*(&^%*%!!!!!!!!!!!!!!!!!!!!!

Please excuse my mental rant as I stomp up and down, kick scream, throw things and punch holes into my walls....all in my head of course....the kids are sleeping.  I wouldn't want to wake them.  (P.S. - today would NOT be a good day to call me and see how I'm doing - just let it be.
)

It's 4 a.m. and I've just found my way home from the emergency room AGAIN.  One day after bringing Jacob home from the hospital.

He lost his IV again on Friday morning and the Dr's didn't want to have to put another one in him because it was so hard to get in and they only had two more dosages of the antibiotic, plus we're right smack in the middle of cold and flu season and he told me that Jacob would be safer at home than in pediatrics with all the sicks kids.  So, he set up to have us go see our pediatrician for our final dose of antibiotics via deep-muscle shots. 

So Friday I scrambled around, spent 3 hours to get him discharged and brought him home.  He'd been having problems with his feeding for the last 3 weeks, which we assumed was a result of his new medicines - lasiks, digoksin, Vitamin D and Zantac.  The nurses had been 'tweeking' his route of administration - when, how soon before/after feedings, etc of the medicines because he seemed to keep throwing up all of his formula and the only factor that had changed before admission was his medicines.  Before admission he never even spit up. So, we were sent home with suggestions on how we might better be able to keep Jacob's food down at home.  Other than that, he had a clean bill of health.

His first night home, was uneventful albeit restless.  He wound up sleeping on my chest as I rocked him and patted his back in the rocking recliner all night long.  He just couldn't get into a restful sleep so I'd pat him till he fell asleep.  And when I'd fall asleep and quit patting him, he's wake up and start to wiggle again. Thus was my evening.

During the day, it was again uneventful, yet restless, marred by several bouts of vomit.  Finally around 8:00 p.m. KC was feeding Jacob about 2 oz (he used to drink 4 oz at a time, but now he can only stomach 2 if we're lucky) of formula and he threw it all up.  The thing is, he hadn't had any medicines since 5p.m.  there was no reason for him to be sick.  This, plus the fact that he couldn't keep his regular formula down had us worried because now we couldn't blame the meds and now we didn't think he was getting enough formula to stay down to sustain him for very long - he was just constantly hungry.

So, KC called the hospital who told us to call the pediatrician who told us to go back into the emergency room.  They did an ultrasound on his stomach and did X-Rays.  All of them came out clear.  But the doctor decided to admit us anyway because Jacob had only gained 3 oz in the 3 weeks since he'd originally been admitted.

OK, Riddle me this, Batman????  If his weight was such an issues, how the HELL did they discharge us the day before????  They weighed him when he was admitted and they weighed him just before they left.  Why was this weight issue not caught and addressed?  Here we are BACK in the hospital full of sick children, trying to figure out how long THIS visit will be.  And why, oh why, did I have to give all of the doctors and nurses all of Jacob's medical history, medicines, dosages, etc. AGAIN,  and then have to give an explanation of why I was adamantly REFUSING to let them try to put an IV in his little body this morning when I'd just been there for 3 weeks and only left 24 hours before? Why is there such a breakdown of communication?

Grrrrrrrrrrrrrrr.  I've got to get some sleep. I'm just getting madder and madder by the second.  Maybe a couple hours under my belt will do me some good.  Maybe, oh maybe, I'll be able to get through the day without punching something or someone over this whole debacle.

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7 More Days to Discharge...?

Well, that's what the doctors are telling us at this point.  I'm trying to be hopeful, but I'm not holding my breath.  Although we have had no new developments in the last couple of days, I'm not foolish enough to think we're completely out of the water yet either.

I got to finally sit down with Dr. Mueller tonight and pelt him with questions about Jacob.  He was a good sport and very patient with me as I asked question after question, looking for clarification about all of the different information I'd heard from so many different sources over the last few weeks. 

We discussed Jacob's IV and what will happen when (not if) it fails and they have to take it out.  He explained that a lot has to do with how long the IV is able to work.  He's hoping that it will continue to work for another 3-4 days (I'm thinking we'll be lucky if we get another 24 hours - Jacob's already crying when they try to flush the line).  Once they have to pull the IV out, he will then get together with the doctor from the Center for Infectious Disease and find out what the chances of a rebound infection would be if they stopped antibiotics early.  If the doctor determines that the chances are still too high for baby Jacob then Dr. Mueller would have to weigh the physical pain it would cause Jacob to try to give him another IV (several pokes and likely an hour or more of digging and crying) versus the pain of 1 shot per day into his muscle for the duration of his antibiotic treatment.  He said that if the IV came out and they determined that there were just too many shots, he would personally go in and install a line using a local anesthetic.  He just didn't want to put him under general anesthetic a third time because it was affecting his feeding, which could ultimately affect the amount of time it took for him to leave the hospital. 

We discussed his blood and the clotting issues.  I asked a few more questions than he could answer (the problem with having so many doctors looking at so many aspects of Jacob.  The Hematologist just hadn't conveyed to him whether he had done testing on Jacob and what those results were).  So, I'm expecting a few more answers in the next couple of days once he's researched Jacob's file and has been able to get together with the blood doctor.  We discussed the fact that there is a history of clotting issues in our families.  My father had a stroke, one of my sisters had clots from her birth control pills, another sister had clots from a sprained ankle, and my brother - in - law has had several issues with clots after surgeries.  The question for us is whether that family history justifies the amount of blood that they may need to draw from Jacob in order to do the specialized testing needed to check for a blood disorder.  It's my guestimate that right now, because of his condition and the sheer amount of blood needed (we're not talking a few drops - more like viles of blood) to do the testing, they will just modify how they treat him following his surgeries taking into consideration his family history.  And if clotting continues to be a factor, THEN we'll re-address the clotting. 

Monday Jacob has yet another test, although I think this is the last major test they will be doing on him before discharge (knock on wood!)
 They will be injecting die into him through a catheter and checking all of his major organs to make sure that they are all functioning correctly and that there are no other issues that need to be addressed (See? Not holding my breath. There is STILL possibility for catastrophe).  I think they're wanting to double check the kidneys and look at the faulty valve further as well as see if there were any other issues that were accidentally missed. But if all goes well, it should be smooth sailing from there. 

I was talking to Cathy, one of Jacob's nurses and she was examining the area from Jacob's last pick line.  She noted that the suture was right on his jaw line, which she stated meant that every time he moved his head while he was sleeping, crying, being moved, re-positioned, etc it would cause tension on that line and that was most likely what had caused the line to come out the second time - bad placement of the sutures on a place where there would be lots of movement. 

All I can say at this point is "what's done is done".  Let's move on and quit focusing on what has happened, and focus on what we're going to do to fix the issue we have at hand - how are we going to get all of Jacobs administered to him in the least amount of pain.

AND ON A BRIGHTER NOTE:  I was holding Jacob today after a feeding and the little boy LAUGHED in his sleep!  This was not a gas bubble, or a little stutter from breathing issues, etc.  It was an all-out giggle (something I didn't experience with Courtney until she was well over 5 or 6 months old!).  I remember thinking to myself that I couldn't remember anything his short little life that he could draw from to make him so happy he'd want to giggle, but for the next 15-20 minutes, I'd see little glimpses of smiles on his face as he continued to dream.  It totally made my night.  I wished I'd been able to take a picture!

It was then that I decided that this little boy will bring nothing but smiles, laughter, and joy to our family when he finally gets to come home.  He will bring a whole new perspective of love and happiness that we have been unable to have on our own without him.  I'm looking forward to life at home with Jacob.  I'm looking forward to lots of smiling and oodles upon oodles of laughter and giggling.  For that, I am holding my breath and trying to wait patiently for that day to come. 

Hurry home Jacob! We're ready to start our lives with you!!

Losing Pick Lines and Navigating the Mass of Doctors Working on Jacob

Its been a few days since I've taken the time to post anything new in the Allred Home.  This last week has been Thanksgiving week which means we've been blessed to be surrounded by our friends, family and loved ones all week long. We have been so incredibly blessed to be surrounded by so many loving and supportive people in the last several weeks.  So much so that our 'cups runneth over'.  My house is sparkling clean from top to bottom, I have had more sleep in the last week than I have had in the last 2, I haven't cooked a meal in weeks, and everywhere I turn, someone else has been showing acts of kindness and love to our family.  We have been truly blessed by all of our friends, family, and members of our church. All I can say is "wow" - and try REALLY HARD not to choke up with emotion and gratitude from the overwhelming sense of love we have felt from you all.  Thank you.

At times it can be difficult to spend so much time with Jacob at the hospital when all the rest of our family is here from out of town.  Luckily, everyone has been very understanding with the circumstances, and have even taken shifts with Jacob so that I can get more than my customary 3-4 hours of sleep per night and try to pretend to have a semblance of a life.  Courtney has begun to show the effects of me being gone so much, but the Aunties and the grandparents have stepped in and spoiled her rotten this week.  She has taken to the whole group and asks for them whenever we are not around. 

For the most part, little Jake has been an absolute trooper.  They finally got an internal jugular pick line into his little body at the beginning of the week, only to have it "fall out" when they changed the dressing 2 days later.  How something embedded into the body 6 inches via surgery by specialists just "falls out" on its own is beyond me, but I try to give them the benefit of the doubt.  To their credit, the nurses were able to get an IV into Jacob in less than a 1/2 hour (MUCH better considering the norm is about 1 1/2 hours of screaming on his part!) and were able to get a new IJ pick line in about 6 hours later after he'd waited the customary amount of time after his feeding to go under anesthesia. 

To his credit, the doctor came in and talked to KC and apologized profusely and promised that something like that would NOT happen again.

We thought all was taken care of and we were well on the road to recovery (they were talking 10 more days of antibiotics then home!) when we got a phone call this morning from Dr. Mueller again.  The nurses had been cleaning Jacob's pick line again because there was fluid build up and pulled it out again!!  Needless to say, I nearly came unglued.  No one has talked to me about it yet (they keep seeming to want to talk to KC - I think they're trying to avoid the emotionally crazed mom) but this is beginning to get ridiculous.  Whenever I DO get to talk to someone about Jacob, his infections, the estimated time he may or may not be in the hospital, etc.  I seem to get a different variation of the same story. 

There are so many people working on Jacob and everyone seems to have their own area of expertise.  So, there seems to be little communication among one another about what is going on, the official diagnosis, and how we are going to proceed.  For instance, Dr. Mueller told KC today that they will not be putting in another pick line into Jacob again for fear that it will just come out again.  They want to keep his existing IV in for as long as they possibly can (they're hoping for 4 or 5 days).  However, that still means another 4 or 5 days that he needs antibiotics, but will have no means of administration because all of his little veins are completely exhausted and unable to maintain an IV - this is pretty much the last IV they can put in him.  Soooo what do you do when your baby can't hold and IV, he can't hold a pick line, and he NEEDs to have his antibiotics in order to leave the hospital? Shots. lots and lots of them.  They'll give him shots right into his legs filled with the antibiotics several times a day.  Great.   HOWEVER, as we were leaving the hospital today, one of the nurses stopped KC and was talking to him about the pick line and seemed to indicate that she'd be talking to the doctor and see if there was another pick line alternative.  I heard mention of putting a line into his femoral artery??  Who knows.  We'll see what tomorrow's doctor says about it all.

It's kind of like the duration of our stay here at the hospital.  If you talk to one person, we'll be here for 4 weeks.  If you talk to another it is 3.  If you talk to another we have about 10 days, etc.  I think the duration of our stay will all depend on who is in charge on which day, and what kind of mood they are in at the time...lol. 

To say the least, I am mastering the art of patience and how to bite my tongue.  It does me no good if I start yelling at the nurses and become the 'mother from Hell', does it?  Although I must say, my patience is only going to last so long.  I only have a few drops of it left.

...This too shall pass.....like a kidney stone!

Progress is Progress - Jacob's diagnosed with sepsis, e-coli, and possible meningitis

No doubt about it, yesterday was a TOUGH day.  But it's amazing what 12 hours can do to help your perspective.  That and the fact that when we came in to see Jacob this morning he was peacefully sleeping like a little angel.

 His coloring was less dusky, and he looked like he wasn't in any pain (yay!)  We met with the doctors and nurses and discovered the following:

Jacob's platelets had fallen last night to 17,000 and at one point his white blood cells were as low as 5,000 - neither of which are good numbers AT ALL.  They discovered that he has Sepsis ( http://en.wikipedia.org/wiki/Sepsis and http://en.wikipedia.org/wiki/Neonatal_sepsis ) which is a blood infection.  This means that they have put Jacob on 3 IV antibiotics.  They did not end up doing a platelet transfusion because when they checked his numbers again later in the evening they were rising on their own.  And since they did not do the transfusion, they did not do the lumbar poke (spinal tap) because they need the platelets to be higher to help combat infection and to 'plug' up the hole that his created when they take the spinal fluid from his back.  However, once the platelet counts are up, they still want to check the spinal fluid because they need to find out if the sepsis has spread to Jacob's brain.  If it has spread to his brain then the antibiotics will have to be administered for another week. Right now, the antibiotic regimen will be a 3 week process.  If the sepsis has spread to his brain, they will have him on IV antibiotics for 4 weeks.  This pretty much means that Jacob will be in the hospital for at least 3, and possibly 4 more weeks (sigh). 

However, I can't help but feel blessed that they found the sepsis so quickly.  I had anticipated 3-day cultures and not having any answers until Wednesday.  The fact that they found the Sepsis so quickly means that they can treat it quicker, and were (hopefully) able to ward off any of the major side effects (or death) from it. And, from what I've read about Sepsis, this is not something you want to mess around with.  It's serious stuff, and darned near impossible to diagnosis in infants until you're at the major organ failure stage.  How blessed we were to already be in the hospital around all of the medical care he needed when he tanked last night. 

We also discovered later in the day that Jacob has e coli in his urine, but that issue should be resolved with the antibiotics he's already on.  They took another echo cardiogram this morning and told us that no damage was noted to the heart from his 'episode', so what that means is that once the antibiotics have run their course, the cardiologist will continue with Jacob's 3 new heart medicines which he will be taking until he has his heart surgery.

I'm getting the impression that waiting 6 months until his surgery is fairly unattainable - we're looking closer to the 3 month mark.  But I guess miracles can happen, so I'm choosing to hold out hope until someone sits me down and gives me a surgery date for Jacob. :\

Other than all of the new information to digest, today was pretty uneventful.  They let Jacob begin to feed again, so I got to bottle feed him today and cuddle with him (I think that was more for my benefit than his!) for a while.  And it was nice to hold him and know that today was a relatively pain free day for him.

At the end of the day, although we are faced with the fact that Jacob will be in the hospital another month, he is in good hands and he is making progress.

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When it Rains it Pours

Today (Sunday) KC and I went to the hospital with the assumption that we would be discharging Jacob from the Hospital.  He had responded well to the Lasiks and they were going to put him on two more medications for his heart.  We showed up at the hospital with a new outfit in hand and walked in to see our 3-week-old baby boy swaddled in his blanket in the bed sleeping so peacefully.  It was so nice to see him there so calm after such a hard weekend. 

Bucklee, our nurse, came in and introduced himself. He let us know that they had just given Jacob his latest dose of meds and tried to feed him, but he only took 1 ounce, so if we wanted to hold and feed Jacob that should be fine.  I, of course, immediately gathered my baby into my arms for a little bit o' lovin' and cuddled with him for a while.  I tried to offer him his bottle, but he just would have nothing to do with it.  Pretty soon, his heart monitor began spiking.  His heart rate would peak to the 190's (normal for Jacob is the 130's), setting off his alarm, then would go back down.  It did this several times over the next 1/2 hour, and I began to feel Jacob getting warmer and warmer. 

By the time Bucklee came back in to check on us, the monitor had alarmed almost 10 times and Jacob was beginning to look a bit listless and pale. The nurse took one look at him, broke out his stethoscope and began his inspection.  He suggested I put Jacob on the bed so that he could inspect him more.  Just as I began to lift him up to put him on his bed, Jacob began vomiting large amounts of formula.  Bucklee got him onto the bed and began calling for backup.  The alarms began sounding off, the cardiologist was paged repeatedly, and a frenzy of medical workers began working on our baby boy right before our eyes.

One person was trying to suction the milk from Jacob's mouth, nose, face, etc.  Another was putting a tube down his nose to suction any milk from his lungs, etc. Another was monitoring the heart rate and calling for an EKG. Another was checking his temperature (102.5 F), another was calling the cardiologist, another couple were trying to draw blood (to no avail - that boy just doesn't bleed!!!), and another was giving directions and making sure that all the bases were covered, etc.  It was chaos.  Finally, they got him stabilized and immediately took him back to Pediatric ICU.  Obviously our baby was NOT going home today.

After thing settled down a little, they took his EKG, took more X-Rays, Tylenol was given to bring down his temperature, and they were finally able to draw blood for almost 1/2 dozen different tests, it was determined that he most likely had the onset of some sort of infection and they needed to find out what it was and put him on antibiotics.

All KC and I could think about was how lucky we were to still be in the hospital when he 'tanked' like that.  Imagine the catastrophe it would have been if Jacob was home and that happened.  Yes, what happened was HORRIBLE.  I wouldn't wish it on my worst enemy, but it occurreded in the one place where it could be managed and stabilized by knowledgeable people quickly before any real harm or damage occurred. 

Eventually, KC and I quit hyperventilating, began talking to the doctors to assess what the 'episode' meant and where to go from there.  We let the nurses do their thing, and we tried to gather as much information about Jacob as possible.  Eventually, they put a tube into his stomach to help with the distention of his stomach, put Jacob on IV fluids and began feeding him through IV's until they were sure that he wouldn't throw up and inhale any fluids into his lungs.  They told us that as long as the IV was in, Jacob would be fed all the nutrients he needed, but he's still be hungry and would want to eat. 

So, when he began to cry, I picked him up to try to comfort him with a Binky.  That worked for a few minutes, until Jacob realized that it was me who was holding him and he decided he wanted to be fed NOW!!!  He began rooting around for food and getting madder and madder.  He was twisting as far around as he could, arching his back, stiffening up, etc.  Then, all of the sudden, his heart rate spiked again,  he stopped moving, his eyes rolled back, he immediately went limp in my arms and then became unresponsive.

KC immediately called the nurse, we put him on the bed and the nurses began again working on him to get him to wake up.  The doctors were called again, more assessments were made, more blood tests were taken, and we spent much of the rest of the evening shell-shocked.  The nurses came in to do more blood draws and I "took a walk" because I didn't think I could handle listening to another 1/2 hour of his screaming while they tried to draw blood from his little body.  KC stayed and rubbed his head to calm him while I wandered the halls for a while. 

When I came back, he told me that Jacob 'passed out' at least twice more while I was gone and was so lifeless during the blood draw he didn't even wiggle or cry.

We eventually found out that his platelets had fallen to below 17,000 (they had been 72,000 earlier in the day) which meant that they wanted to give him a platelet transfusion.  They still thought he had an infection, but didn't know what it was. They sent several blood tests out to for cultures, which would take about 3 days before we could get results, and they wanted to do a lumbar penetration, which basically meant that they wanted to take some spinal fluid from him in order to rule out meningitis. 

We met with a hematologist (blood doctor) and he explained to us the issues with his extra thick blood and their planned course of action (of course he ordered a couple of blood tests as well).  We talked to the cardiologist a few times and they decided to take Jacob off of two of his three medicines until he was stabilized.  And we had several nurses constantly coming in and out of his room over the course of the rest of the evening.

By the time we went home at 7:00 PM this evening KC and I were emotionally and physically spent.  Jacob was absolutely exhausted beyond belief as well.  But, to their credit, the hospital staff seemed to get Jacob to the point where he was turning a corner and beginning to get a little bit better.  We left that evening knowing that he was in good hands and counting down the minutes until we could see him again in the morning. 
 

Hopefully today will bring us much better news and a much healthier baby...

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Psych!!!

So yesterday I had my weekly "You get to spend all DAY at the doctors' office doing tests" day.

This Friday I got to go in for a Biophysical Profile, a growth scan, and then meet with my OBGYN to find out all the results and to see if anything needed to be done for the baby.  Yesterday, I drove 30 min to the ultrasound and had the baby kicking and moving the entire drive.  As soon as I got into the Ultrasound room, he decided he was tired and fell asleep.  Niiiiiice.  NOT what you want to happen when they are checking for fetal movement.   So we spent 1/2 hour trying to wake the little bugger up - they moved me onto my side, then back onto my back, then made me put my legs straight out, then gave me some apple juice to get him all 'sugared' up, then I emptied my bladder, they put a vibrating buzzer up to him to scare him awake...nothing.  This kid would NOT budge.  Is it too much of me to ask that he sleeps the same way when he's OUT of my tummy too?

Needless to say, he just barely passed the "breathing" part of the test, but he failed the movement part horribly. 

I went to my Doctor's appointment and he talked to me to see if the baby had been moving, which I told him he had.  He asked me if there were changes, and I basically told him my contractions were further apart but more painful.  He asked me if he needed to check me and I said, "Nope.  You and I both know that I'm not having this baby before induction date.  I've been induced with all of my 3 other kids".  Normally I'd at least get a smile from him.  Nothing.  Hmmmmm.

He told me that the baby had failed his BPP and that he needed to send me to the hospital for another test.  I said, "OK".  We discussed when induction would actually be (the 25th) and he realized we didn't choose a time, so he had Megan, his nurse take me to the scheduling nurse to schedule the induction  and even suggested to her that she take me to the hospital.  I informed her I'd been there several times already and I was sure I could find my way.  The whole time I was with them at the office it was if they were waiting for me to FREAK OUT or something....just kind of treading lightly.


C'mon.  Seriously? If I thought that something wasn't right, I'd be the FIRST person to be saying something.  Knowing that something can go wrong at any given time has made me ubber sensitive to what's going on inside me.  If Jacob hadn't moved all morning, I would have been concerned.  Besides, this is NOT my first pregnancy, and it certainly wasn't my first time hanging out at the hospital for some Stress Test to prove what the previous ultrasound had already confirmed...his heart was beating regularly and at the right speed and all was fine.  I just had a heavy sleeper inside me. 

So, anyway...I called Elisha to let her know I'd be staying a little longer than expected. And I called KC (who of course, was in St. Maries and 3 hours away from me with sporadic cell phone coverage)  to let him know I was going to the hospital, but not to worry...just DON'T ignore my phone calls if I try to call again later ;)  I stopped by the intake office (I hadn't turned in my intake paperwork yet for the actual induction date) and they looked at me funny for not going straight up to the Labor and Delivery office.  I just ignored them.

Finally, I made it to Labor & Delivery.  They had been waiting for me and already knew me by name.  They took me to a little room, hooked me up, gave me a TV remote ( I can't remember the last time I've watched TV during the day....nothing has changed.  It's all still CRAP) and left me to lay there for about 30-45 minutes as the machine monitored the baby's heartbeat. 

Funny thing happened....NOTHING. His heartbeat was just fine.  Nice and steady.  No arrhythmia, not stops, no gaps.  He was a normal little baby STILL sleeping.  Though I did get to notice that my contractions were pretty much 6 minutes apart while I was there.  Hmmmm something to keep an eye on.

Elisha Allred: Soon-to-be big sister of Jacob, a boy with Down syndrome

My poor little boy freaked all the doctors and nurses out for nothing.  He's nice and healthy.  So they sent me home.  I was glad to leave.  I was NOT ready to have this baby yet!  It looks like, however, that our family will get to spend the rest of this weekend GETTING the house ready. Just as soon as Elisha finishes up her Saturday Volleyball Tournament! :)

Oh The Beauty of Good Friends

It's been a few weeks since I've posted anything new.  That could be good...or it could be bad.  And, to be quite frank, it's been a little bit of both. 

The reality of this impending birth is hitting home a wee bit too soon and too hard.  The bills associated with this baby have begun to come in - and it's basically just the co-pays!!! Plus, I've been experiencing frequent and stronger-than-usual contractions (usually every 15-20 minutes) for the last week or so.  Understand,

I still have 5 WEEKS TO GO!!!! 

I'm sure that when I have to report to my Dr. on Friday on the frequency of my contractions he'll be none too excited about those contractions.  And I worry that I may be sent to bed for the rest of the pregnancy - something I CANNOT afford to do right now.  I'm just not ready!  I don't have the baby's room painted, I don't have meals prepared and frozen in the freezer, my taxes aren't done, I don't have candy bouquets pre-made, NOTHING!  Please, don't send me to my bed this week!

On the upside though, KC and I got to spend the evening with a couple from our ward who have a son with Down's Syndrome.  And what a great experience it was.  It was so comforting to know that the world will not end when Jacob is born.  They explained to us all of the great experiences they've had with the process of raising a child with Downs and taught me not to sweat the things I cannot anticipate or expect.  Just go with the flow and enjoy the process and all of the unexpected (good) surprises that come along with this experience.  It's a shame that it took Jacob having Downs Syndrome for us to discover what a great family they are.  But I have a feeling that this is a friendship that will grow and blossom as the months and years go by.  How lucky are we!

Then, to top off what has already been a great evening, my friend Tawni e-mailed me and asked if she could have a 'frozen dinner' baby shower for me.  In essence, instead of having people give me oodles of baby clothes that Jacob may only be able to wear a few times, our friends would instead donate a casserole, etc for us to put in our freezer.  This would enable us to pull out a meal from the freezer each night when we're at the hospital while Jacob is in NICU or during those crazy nights when everything else came first and dinner was last on my priority list.  Oh, how blessed I am to have such a thoughtful friend to figure out what I needed most and to do it for me!  Over the course of the last 2 years she has been my angel on Earth.  I could spend the rest of my life trying to pay her back for all of the many many many MANY things she's done for me and I'd never be done! 

It's days like this when I realize that now matter how hard it gets, I have friends and family who love me and that it'll all be OK.  What an extraordinarily beautiful life I live!