Hayleigh Joy Alber

Sleeping-AGENIS!

2011-01-15T11:13:00.002-05:00

Yes! We are getting a full night sleep again. I can finally report this after about 10 days or better of Hayleigh sleeping through the night. We started her about 6 wks ago on Labetolol daily at 8am. This med helps her with her moods by suppressing her melatonin spikes throughout the day. This is all part of the European study that was done and shared with me by some very wonderful SMS folks! We supplement her with Melatonin and a combination sleep aid at around 8pm and she typically goes to bed around 8:30pm and wakes around 6-6:30am! She once woke at 8:30am!!!!! (results not typical. Individual results may vary. Consult your...OKAY! Sorry I couldn't help myself!)
Shannon from Illinois (taylorbugkisses.com) who has an SMS daughter shared a sleep aid by the name of "Sleep Assure", so I looked at the ingredients in that and was able to find one comparable locally at Walgreen's called "Alteril". I wanted to try something without having to spend a lot in case it did not work. I think from a cost perspective it would be better to order "Sleep Assure". "Alteril" has 2mg Melatonin in it along with multiple other natural elements that promote sleep and delayed waking. I supplement with 5mg of extended release. I crush both pills (Melatonin and Alteril) put it into a couple spoonfuls of ice cream and voila SWEET DREAMS!
Her mood swings are so much less and she is much more joyous throughout the day. Improved communication with HayJoy too! We don't experience the "marathon naps" as I call them, where she is sleeping 3+hrs at a time. She no longer falls face first into her dinner anymore. Bonus for a child who loves to eat!
I want to say thanks to all who have been praying, reading, supplying info to help us in this journey. I want to especially recognize Dr. Wendy Burdo-Hartman and Dr. Mark for taking a chance on this drug therapy with us, you are all a tremendous blessing!

I hope and pray this info will benefit others.

until next time...

New Med & New Behavior

2010-12-17T10:39:00.001-05:00

Well I would love to report that Hayleigh is sleeping all night and mommy and daddy are well rested since starting Acebutolol ( beta blocker to help suppress over production of melatonin), but I can't. She is less sleepy during the day for sure and no more marathon naps! Unfortunately we still wake up at o'dark thirty! ( I refrain from using Crack of Dawn cuz my mother my take offense!)
Adding a sleep aid or straight melatonin at night for sleep has not seemed to help her sleep either. In fact it would appear that she is more amped and aggressive.
First time ever she threw 3 plates of food and a Christmas party for my work and 1 of those ended up on mommy! She has a sinus infection that we are going to see doc about so maybe that will improve her behavior.

Learning to sleep-AGENIS

2010-11-13T08:31:00.001-05:00

Wow! Here we are so excited to have Hayleigh Joy sleeping without waking up during the wee hours of the morning and yet finding ourselves waking up still. I honestly did not realize how much of a struggle retraining ourselves to sleep again was going to be. Most thankful for the challenge for sure! Just a surprise. If Hayleigh would stop setting the wake timer on the living room television to turn on at 2am it would probably help! (just sayin) I woke to the pshshshshsh...sound from the snowy tv. Treading cautiously cuz I was worried I was going to find a little blonde girl sitting in front of the TV saying " there here". Thankfully not the case so I shut it off and went back to bed!

Until next time...

Sleeping Again!!!!

2010-11-10T22:32:00.002-05:00

YES you read that correctly! We are sleeping through the night for the first time without a wake up in 2 nights! Acebutolol (beta blocker; here is the link...http://jmg.bmj.com/content/40/1/74.full.html#related-urls) Thanks to Shannon our new friend who has a daughter also Taylor who has SMS. The daily dose in the morning is doing its job of helping her sleep at night and improving her overall demeanor during the day. The other medicine was making her way too sleepy all day and doing nothing for sleep at night.
Hayleigh Joy continues to enjoy school and sleeping certainly is helping. We are making all kinds of sounds now,but still no words as of yet. We will continue to encourage her and pray she develops a decent vocabulary some day. She loves to give kisses! She has figured out how to put her lips together and give a kiss. So cute!
Thanks for your continued reading and I will continue to try an update more frequently so that you know better how to pray for her. Time to go get some zzzzz myself! Night all.

Until next time...

Trial and Error

2010-11-03T23:32:00.002-04:00

Since my last post about not sleeping, little did I know that was the beginning of a new phase for Miss HayJoy! She has not slept through the night without waking once between 12am and 2:30 and then again between 4am and 5am! OUCH!!! Still working on the "grump" thing with me. I Sloooooowly getting better with it.
We just recently began working with a peds neurologist Dr. Burdo-Hartman, who has trialed catapres to help Hayleigh sleep and that only seem to encourage to sleep more during the day and did nothing for night time sleep at ALL! We feel it made it worse. NOW, beginning tomorrow we are going to trial a beta blocker therapy (acebutolol) daily starting tomorrow (11/4/10). We give a dose in the am and wait to see if it helps calm the mood and encourages sleep. From the study done of 9 kids (yeah u read that right only NINE kids; just shows u how few of us families there are and how under studied this syndrome is.) it proved to help reduce the amount of melatonin (the stuff that keeps u asleep) produced during the day hoping to have more available for night time sleep. We shall see! Please pray for us and many other SMS families around the world that they will find something that works for sleep. I can honestly and truly say I do not wish lack of sleep upon anyone including my worst enemy.(which is proving to be myself right now cuz I don't sleep) I hate me without sleep!

Until next time...

Can't SleepAGENIS!

2010-09-03T03:55:00.001-04:00

Well a thunderstorm rolled through around 12a today causing Hayleigh's lil sis to wake up. That naturally began the reverse dominoe effect of wake up. Hayleigh, then daddy followed by mommy! Daddy risked life and limb to lay in bed with Hayleigh who might I add was unsuccessful at getting her back to sleep. (ugh)
As you can see by the time of this posting ( ODark :30) that I and mommy. ( who is handling this much, much better than grumpy ole daddy) I think being up with a toothache would almost hurt less than this does! ( hey I really like to sleep!)
Mommy is an amazing person. She has Elah in her lap with a bottle and Hayleigh watching cartoons like it is noon day! Meanwhile I am lying in my bed writing (cuz it is therapeutic for me and cuz this horrible human being needs lots of prayer) this post. Selfish? Yes! But, I needed to pause, take a proverbial deep breath and collect myself before I open the bedroom door to face the early start to an already goofed up day! Oh did I mention I am waiting for the benadryl to kick in? (no not for me! Although i was tempted)
BTW Hayleigh's overall health and wellness as been awesome. She is really growing up fast. Making more sounds!!! She has been sleeping great as of late. Which is probably why she is up today. I just shared with someone yesterday just how great she was sleeping. Oh well. This is to be expected and as mommy said she is not going to change so I guess I have to change. We know how much one likes that!

Until next time...

Heart is Great!

2010-07-24T00:15:00.001-04:00

Good Doc Grifka said that Hayleigh is doing great! We did not have to have an echocardiogram done this time around cuz the EKG and chest X-ray were good! Praise God! Thanx for your continued prayers and support.
Hayleigh and her other 3 sisters (Chelsea, Rebekah, Elah) are going to celebrate their birthdays at our first Annual Alber Girls Summer Birthday Bash on Sunday July 25th. Looks like weather is going to be great! Lots of good food and great family/friends!

Until next time...

Sleep-LessMagenis & 3RD B day!

2010-07-10T09:40:00.001-04:00

Yeah I renamed her diagnosis because the fact that nobody sleeps well. Or not much at all! I am fine dealing with everything else that comes with Smith Magenis but when u mess with my sleep that is where I am struggling. I am a jerk I'm sure. Heck I don't even want to be around me!! Please pray we are able to find a med that will help her sleep or one that will help mom and dad sleep so we don't hear her (lol).
We celebrated Hayleigh's third b day on the first! She is doing very well with communicating with sign language. Still not talking yet. From what I read speech comes between ages 3-4 so we are hopeful. We are going to do a birthday celebration the end of this month for all 4 summer birthdays. Elah is going to be a year old on July 22 nd.
I have done this post from my iPhone so please 4give me if I mess up on grammar or spilling! (smile)
Will plan to update again after our yearly appointment next Tuesday at good ole doc Grifka ( the cardiologist ).

Until next time...

Sorry so long on a new post!

2010-06-08T08:34:00.003-04:00

I am planning to do more frequent and regular updates on the blog. I am thinking that I will post once a month on the first day of the month this way I will hit her Birthday which is coming up on July 1st. Hayleigh will be 3 yrs old. Today we celebrate the 9th birthday of big sis Chelsea! Hayleigh is doing so much better now that we have moved into a newer home. She is running and jumping finally. Mommy continues to teach her sign language and is getting very good at it! I will post on the first with photos of her and the new house. I will also have better updates on the past several months. Thanks again for your continued interest and support of our special daughter and our family.

Blessing to all!

until next time...

Groggy in Greenville!

2010-02-08T14:09:00.003-05:00

Since our last update we have been getting very little sleep to speak of. Hayleigh's circadian rhythm (24hr biochemical clock that regulates sleep/wake cycle...involving serotonin and melatonin) is reversed from you or I. In addition to that she like clock work wakes up between 5am -6am daily. Hits the ground running! (loves the electronic toys...the louder the better) Praise the Lord Elah is a sound sleeper like her mommy or we could have 2 little people early in the am to take care of.
I was able to find on the SMS website (prisms.org) a posting on the forum site of a couple of supplements a mother was having success using on her 5 yr old. In the past 4 days we have been using the cocktail and so far she is sleeping all night without waking up. She normally would wake 1-2 times during the night. The last time she woke up at 3am and it took over an hr to put her back to bed. That was the straw that broke the daddy's back! Finally got the combination of supplements (Valerian root, Melatonin and Miralax) and so far so good. Starting on very low doses. She actually is having better days as a result. Tantrums are much reduced and she is handling being away from home better. From what I read the valerian root is to credit for that. Anyone who has a ADD/ADHD kid could benefit from this. It also has benefits of helping with stomach cramps, (during menses) aids in digestion, helps with migraines and is also a anti-anxiety supplement. Great for sleep ultimately without the groggy effects. Check it out!

Other family notes before I wrap this session up: Elah is almost 7 months and she is doing awesome. Just saw pediatrician last week to get her update immunizations and he said she is doing great. We had an Ultrasound of her left hip for a click he was noticing, but he really thought it was in her knee. Do not have results yet, but I figure no news is good news! Michelle went to endocrinologist today for her thyroid and they took a biopsy of a nodule they found on Ultrasound. Results pending in a couple of days. Please pray for benign results. (not to be confused with what you are before your you be ten "benign"...LOL) Couldn't resist! Yes I could have but that just would not be me.

Until next time...

Merry Christmas!

2009-12-24T13:23:00.002-05:00

Hayleigh is going to be spending Christmas eve at her Nana and Papa's house and then Christmas Day at her Uncle Tony and Aunt Julies house with the family. Her sister Elah is now 5 months old and her oldest sister Mikaylah turned 12 yrs old on the 23rd of December. (she acts like she is 16 already!) I know, I know, wait til I have all 3 teenagers in my home and then...I digress!!

So where are we with Miss Hayleigh Joy? She has been officially seen by all the specialties to assess her needs with respect to diet, speech, physical therapy and occupational therapy needs. In the new year she will begin have home visits once a week and will go to a class with other special needs children on Friday mornings here in our home town. The class is from birth to 18 month old kids. Much of her skills and assessments have her roughly averaging around the 12 to 14 month range. As she improves they will move her up in the older classes.

We just saw the ENT doc (Dr. Scalf) and her ears look good as well as her adenoidectomy revision. Ear tubes are still in place. We also had an audiology study done ( i want that sound proof room for my music and for occasional lock up for loud children...j/k) and her hearing is good. So now we know that she can hear well enough to learn speech, but it is up to her whether or not she will speak.

Otherwise things are going very well for the rest of the Alber family. Work is well. Church is great. Loving the worship leading opportunity I have been blessed with.

We pray that all of you have a very merry christmas and a safe, prosperous new year!

Until next time...

We Have Answers! A Lifetime of Learning...

2009-11-03T21:58:00.002-05:00

Smith-Magenis Syndrome is the name for a micro deletion of the 17th chromosomes in Hayleigh's DNA. We were given the diagnosis officially about 2-3 wks ago, but we were waiting to have the conversation with the genetics team at Spectrum Health. I dare not try to explain all of the "stuff" in great detail, but will emphasize the things I took away from the meeting. I would ask you and encourage you to first continue to pray for her, but please go to the following website to learn more and support if you wish: www.prisms.org

The 3 most important areas of concern we will be forever faced with is her sleep cycle, communication and mood swings.
Her "circadian rhythm" which is a big word for one's normal sleep cycle. We sleep at night when the sun is down and are awake during the day. These children tend to want to sleep during the day and be awake at night. Currently Hayleigh goes to sleep around 8pm and wakes faithfully between 5am and 6am! (BTW this is normal for SMS kids, waking up before the sunrise; I refrained from using the "crack of dawn" for fear of offending my mother!)

Second thing is her speech. Probably better to call it communication challenges. This area will be tough for her as well. Only time will tell if she will ever talk or not. She might use sign language, pointing and picture books. She could also speak simple words, small phrases or complete paragraphs. Time will tell.

Third and final thing is mood swings which are really going to be greatly affected by her sleep and communication. SMS kids can be self-injurious by banging there heads hard, pick at their skin, or poking things into any orifice on their bodies, especially when they are mad or frustrated. Tantrums are par for the course, which Hayleigh does not do very often, YET! She is 2 yrs old.

She will have routine urine specimens the rest of her life as this can do damage to her kidneys if we are not careful. Early prevention is most important. The other thing to note is that there is a varying degree of handicap with all of these kids. We feel at this time Hayleigh is on the milder side, but much remains to be seen.

We have Early On coming out to further work with her speech and occupational skills. Diet might be another angle to look at as these kids are prone to be constipated too!

One final revelation to me was that this micro deletion caused her to be born with the heart defect. I had the cart and the horse reversed.

Mommy gets a little sad at times and I must admit it is heart breaking for me at times to think she will never be "normal". BUT I am quickly reminded that she will never comprehend the difference. She will always just be Hayleigh and live her life to the fullest with much JOY!

Please visit the site prisms.org

Until next time...

Genetics Testing...the waiting game!

2009-10-13T23:17:00.002-04:00

Hey all just a quick update on Hayleigh Joy! We had a meeting with a genetics group a week ago and now we are waiting the results of the blood testing that will look at her genetic code to the microscopic level. They will be looking to see additions or deletions in her genetic code that may explain why she is not talking and doing age appropriate things. We learned that all of us are screwed up ( I mean missing certain DNA code or have additions to it!) but likely in areas that don't show up in ways that affect us. (for me that is debatable, anyway I digress)

We will know in another week or so the results. We of course are praying for 2 things. One that there is nothing wrong and that she is just behind because of all she has gone through and just needs some more aggressive therapies like speech and language etc...

Finally find out what is wrong and get her the therapies that she needs. Please join us in our prayers for Hayleigh Joy. Thanks again for reading and supporting us as you have.

Until next time...

Doing Better!

2009-09-16T09:39:00.002-04:00

Phew! That was some lengthy surgery! (NOT) OK! Seriously by the time I posted the "in surgery" blog update we were meeting with the surgeon discussing how the surgery went and meeting Hayleigh in the recovery room. Since the nasal drainage is much improved and almost non-existent in the past 3-4 days. We were supposed to follow up with Dr. Scalf yesterday, but he was not feeling well so we rescheduled for next week. More to come later.

We are scheduled for the first of next month to have genetics counseling and testing done. Dr. Helder (pediatrician) is concerned for her lack of height and the fact that she is not communicating. Not so much that she is not talking (which she is not doing at all) but more concerning is that she is not pointing at things and gesturing for things like her cup or toy that she wants. Some things I have researched on my own makes me concerned for Turner's Syndrome. We shall see!

Kids are back in school which equals boredom for Hayleigh and a little less chaos for mommy! Hope this update finds all of you well.

Until next time...

Hayleigh Joy aka 16970 in surgery!

2009-08-24T12:37:00.002-04:00

Yes! You all read that correctly, HayJoy is in surgery for her exploratory surgery of her nasalpharynx (nose and throat) with possibility of further removal of addenoid. PHEW! She has an obstruction between the front of her nose and the back of her throat that basically causes her to breathe out of her mouth. We are all in the waiting area for about the next 1/2hr or so...then to PACU for recovery and anticipated discharge to home later.

We covet your prayers and we look forward to reporting to you good news! Thanks for all your support and prayers in advance.

until next time...

2nd Birthday Bash at Nana & Papa's House!!!!

2009-07-14T15:19:00.004-04:00

As one can see from the pictures Hayleigh "got into it" and really enjoyed herself. She was overwhelmed with all the wonderful gifts from our super supporting family and friends! The weather (praise God) was absolutely perfect for the outdoor festivities. Kids enjoyed the pool and the BIG kids enjoyed Ladder Ball and Bean Bag toss (ie. Daddy, Papa, Uncle Tony...) By the way, Tony and I are the champs of ladder ball. (sorry I couldn't resist) As always we had plenty of great food and it was very yummy!

Special thanks needs to go to Nana and Papa...you both so totally rock! This party would not have been possible without you!!!

Few things to update you all on with regards to Hayleigh:

she is going to have surgery after the birth of the baby. (due by Wed July 22nd...scheduled induction that day if Mommy does not go before) Hayleigh also had her 2yr check up with the family physician. Her weight is within normal range, but her height has stalled out. She is in the 99 percent tile for height. (99 other kids her age are taller) The family doc has suggested that we see a geneticist in October to have her evaluated to see if there is anything causing her delays. (speech, growth...)

He is concerned because she is not talking, not pointing at things and her height has stalled out. We have been suspicious for a little while, but not overly concerned. We covet your prayers for her as always. We are not nearly as concerned about what diagnosis we may find, but more that we find out something so we know how to give her the best possible outcome for her life.

For now we wait and prepare for our new addition. More to come following the baby's birth. Please check my facebook page for additional photos from the b day fun and news related to the birth. (http://www.facebook.com/eric.alber#/etalber?ref=profile)

Until next time...

Hayleigh To Have Nasal Surgery

2009-06-12T23:39:00.002-04:00

Greetings! Yes what you read is true. Hayleigh saw the ENT Doc on Wednesday for her follow up for the ear tubes and adenoidectomy. Dr. Scalf (ENT Doc) says that she has an obstruction somewhere between the nasal passages to the back of her throat. He believes it might be the adenoid that has grown back. By the end of the month we anticipate going to surgery at Butterworth. Will update when we have a more definite date.

Michelle is on bed rest after finding out that baby to be born late July is measuring 2wks too small. We are to see OB Doc on Friday and will have nonstress test done and consult to see if she will continue to be on bed rest or not. Please be in prayer for us as we are enduring a lot all at one time.

More to come soon!

Until next time...

Clear Till Next Year!!!!!!!

2009-05-14T20:03:00.002-04:00

Hello all! We are so excited to announce to you today that Hayleigh was given a clean bill of health and does not need to see the "good Doc Grifka" until this time next year. Echocardiogram was great and all is healed up after her surgery. No more medications. Our strict instructions were to go home without restrictions and treat her like a normal toddler. YEAH!

Doc Grifka was very excited to see her "budha belly" as he commented on her exciting weight gain! He did say that her one valve is leaking as to be expected with her condition. We may have to have that replaced in another 10 years or so, but no need to worry from a heart perspective until then.

We wish to seriously thank all of you for your continued prayers and all the support and prayer throughout this entire process. Please take a moment to pat yourselves on the back knowing that all your gifts and prayers were effective. THANK YOU

P.S. WE HAD A FETAL ECHO OF THE BABY TO BE BORN ON JULY 23 AND ALL IS NORMAL AND NO SERIOUS HEART DEFECTS. WE AGAIN ARE VERY ENCOURAGED.

Until next time...

Spring is here!

2009-04-17T12:11:00.003-04:00

Hello All! Sorry it has been so long since updating the blog (AGAIN!) We are so looking forward to spring!!!! Today is 70 degrees! (yeah I know for those of you in Cali and anywhere but the Northpole, no big deal, but to us crackers in the north it is wonderful) Ok to the real reason you read any of this Hayleigh Joy:

NO MORE MEDICINE!!!!!!!! Yes, we stopped all medicine at the end of March. Hayleigh will be seeing the Good Doc (Dr. Grifka) on May 10th for a complete check up (EKG, Echocardiogram, Chest xray) Following that visit we will be sure to update. We anticipate being placed on yearly checkups. We are going to miss seeing the cardiology group, but as the say "all good things must come to an end", right?

Hayleigh is getting very close to walking now. She is still dealing with being affraid of falling. She also only sees walking as a means to getting from point A to point B, not as a means of mobility for her life, yet! Both sets of eye teeth are almost in now. She is biting food and chewing! Not just inhaling her food. She does not deal with constipation anymore as a result! (mommy and daddy are happy about that)

Mikaylah our oldest daughter has a competition called (Oddyssey of the Mind) competition this Saturday and if they take 1st or 2nd they will go on to the world competition in Iowa! We will be at the event for 12 hrs so we hope Hayleigh enjoys lot's of sitting (yeah right, maybe with Sid the Science Kid, but not people).

Happy Spring to all of you, until next time...

It's About Time We Update This Site!

2009-02-24T14:14:00.003-05:00

Hello everyone! We hope that the post election days are treating you well. Feeling the "stimulus" yet? Can't believe it has been that long since our last update on Ms. Hayleigh Joy! She is finally getting teeth in front both top and bottom. They came in all at the same time! We have a plethora of used Kleen ex to prove it too! (should buy stock in them)

Hayleigh is going to see Dr. Grifka in May and stops all heart related meds by the first of April! We anticipate having a EKG, Ultrasound of her heart (Echocardiogram) and a good head to toe look over. Following that we will likely visit the good doc once a year! Amazing!!!

Hayleigh is getting close to walking. She is crawling around every where and getting into all kinds of stuff including the tupperware cupboard. She is still behind in her speech, but makes all kinds of noise. She gives us high fives and occasionally will wave and say what sounds like "hi". She is also getting some hair finally. (worried she was going to look like her dad, yikes!)

Hayleigh still loves to eat (hey she is an Alber and Alber's like to eat!) She will smile and make a Tim Allen grunt when you ask her if she wants food or if she is hungry, so cute!

Hayleigh's little sibling is due July 28th! (no we don't know the gender and not sure if we will find out before the birh) Sorry! Mommy is doing much better, but is still often fatigued and in need of a nap. Ultasound is due in a couple of weeks so we will promise to update on this site following that exam.

Daddy is no longer employed at Metrohealth Hospital and works full time right down the road from our house at Spectrum Health United Hospital. Working still in the ER. Also does Picc line placement via ultrasound through Access RN (kinda like an IV but much longer in length). We are extremely busy! Mikaylah and Chelsea have OM (Odyssey of the Mind) meetings and competitions.

We are all awaiting the end of the winter to get outside again! Look forward to the warmer weather!

Until next time... (sooner than the last time, of course!)

Happy Holidays!!!!!!!!

2008-12-28T13:28:00.003-05:00

Sorry it has been a busy season of fun for the Alber family. Hope you are all having a family centered, Christ centered holiday. Can not believe another year is done! Wow! Just wanted to say Thanks to all who made 2008 memorable for us. Thanks for all the prayer and support. Thanks for all the holiday gifts we received from our family and friends. May God bless all of you this new year. Enjoy the pictures with this posting. They are from our Christmas day extravaganza!

Until next time...
Until next time...

Hayleigh Is Going to be a Big Sister!!!!!!!

2008-11-28T22:14:00.002-05:00

YES, it is true! We are pregnant for the 5th and FINAL time. 7 is the number of completeness so we have decided to follow in God's example and rest on the 7th member of our family! (ok it is a stretch, but God did rest on the 7th day!) We confirmed our suspicions 2 nights ago and we estimate a due date around August. Please pray as we have been here before and had a miscarriage.

We always said since we were married that we would have 5 kids. We also prayed that if God was to bless us with another child that around the 2 yr mark of Haleigh's birth would be the best time. We saw it as the now or never point. We are excited for Hayleigh as she will have a playmate. Finally, YES, everyone is pulling for the boy on this one. We prayed to God well before this baby to have a son. Bottom line is a healthy pregnancy, delivery and kid is all we truly ask. Keep praying please.

HAYLEIGH UPDATE (after all it is a sight all about her)

She is crawling alot now. Still no front teeth. She can go from a lying position to sitting or from sitting to standing up with the aid of furniture. Love to spit at you when you try to talk to her (need to stop that soon!). Waves more and can give u a high five! Healthwise she is really doing well. We are loving loving her to pieces as was Doctor Grifka's last instructions.

Hope all of you enjoyed too much good food as we all did!

Until next time...

Hello From Hayleigh's World!

2008-11-16T20:36:00.002-05:00

Sorry it has been so long since we last posted anything! We have been like all of you, BUSY! Since our last post we were concerned about Hayleigh's development and concern for her being allergic to milk as she had been really snotty. We are still awaiting blood work for allergy testing, BUT Hayleigh in the past two weeks has gone from just sitting and some standing and no crawling TO standing all the time, walking with help from one of us or around furniture and to (drum roll please...) CRAWLING!!!!!!!!!!!! Let me tell you, Mommy is happy! Now of course we have to watch the stairs. That is a good problem to have. We also have two more teeth on the bottom (NO! Not front teeth of course) 2 more molars. I think we are going to teach her to play hockey so she will fit right in!

As u can see from the photo's we all had a good time with the harvest celebration. We spent some time that evening with good friends across town and handed out candy. Girls and I went to all the businesses in our small town and then later through the neighborhood. Fun and safe time. Chelsea was scared by a gentlemen in a graveyard scene at one house that took 10 minutes to settle down from. He is lucky I was behind her or I think he might have gotten a surprise of his own from a protective dad. (smile)

We had our first snow fall that accumulated on the lawns and trees. Very pretty! Just not ready to be cold for 4-5 months and begging for a glimpse of the sun. Well hate to cut it short but need to put some little kids to bed!

Happy Thanksgiving to all of you and enjoy! We shall post again after the holiday with some more photos and comments.

God bless until next time...

"oh to have hair again"

Daddy Bizzy!

2008-10-01T22:35:00.002-04:00

My daddy is busy so I thought I would update u on my progress. I saw my heart doctor and was told to come back next year in May and that all is looking really good! I am weighing in at a whopping 18lbs and about 27" tall. I L O V E food!!!!

Did I mention I love food? I digress...I also saw my ear, nose and froat doctor who put me on antibiotic ear drops and yummy pink medicine to get rid of a sinus and ear infection. I am doing much better now, thanks. I think I am going to skip the whole crawling thing and go straight to walking (shhh don't tell my mommy and daddy my sneaky little plan), but I really enjoying standing up by myself and OH YEAH how fun it is when I walk while holding hands with the big people. I am also starting to say HI and wave at all the smiling faces around me.

My sister's are now back to skool so it is kinda boring sometimes, but I keep my mommy, daddy and grandpa pretty bizzy! I really like to eat, did I mention that already? I still need some more toofers to help me choo my food better, still only have the 2 toofers on the top. I almost sleep through the night, but I find it quite entertaining to see my mommy and daddy at 2am sleep walking like zombies! (mommy and daddy don't seem to be quite as amused; adults I just don't get it)

Well I better get some sleep now before I wake up again at 2am for a bottle of my milk. I will bug my daddy to update my blog more frequently as I truly value all my fans across the globe!

WUV U ALL!

Toofer 2 (was going to be "toofer 1"

2008-08-30T20:00:00.004-04:00

YES!!!!!! Hayleigh Joy has 2 toofer's coming in on the top! Coming in Hayleigh fashion "her way". They are on the top left and right but are like the eye teeth or just behind that yet...not to front middle or bottom middle teeth like most "normal" kids, but hey they're teeth right? (amen)

Other developmental changes in the past several days (how's that for NEW info fast!) she is now able to spin herself around like on a sit n spin while sitting on her butt...standing up in her crib (just saw that tonight) and certainly more vocal!

Still loving her sweet tators, but has advanced to the frozen tray of them and boy do they get all over her. Needed a bath last night. Hayleigh went to the John Ball Zoo for Wolverine Night where her papa works. She some how did not end up in the limited pix we got, but her sisters did (see pictures below) Yeah you would think I was able to get pix, but no I stood in line for an hr of the 3 getting drinks. Let's suffice it to say I chose (as always) the line w/ the slower checker. Thank God the free "zoo bucks" were being used cause I was not going to pay for it!

Well school starts on Tuesday for the older 3...Mikaylah 5th grade, Rebekah 4th grade and Chelsea 2nd grade. Oh where did the summer go! As the saying in our family goes starting September, "every nice day is a gift"! Hope you all have a safe fall and new school year.

until next time...

Making Progress!

2008-08-17T23:48:00.003-04:00

Hayleigh continues to work on crawling and hopefully some teeth soon! We are considering going to the pediatrician to have an xray done to verify she has teeth and where they are in position to surface. The challenge is to find high calorie foods that are soft to keep her full long enough. She is enjoying Gerber graduate carrots, chicken meat sticks and yogurt melts.

We tried scrambled eggs the morning on Wed last week before we left to pick up grandpa Taylor. Did not do so well, yeah she blew chunks just about 3 miles before getting to the airport. Here we are cleaning up chunks of egg with limited paper towel and napkins w/ baby wipes. We attempted to use the bathroom (the lone bathroom w/ 3 people waiting in line to use it) to clean her and Michelle up without any place to lay her and worst of all no napkins, just an air dryer! (figures) So I held her on my lap while we changed her diaper and wiped her down. The aweful smell was unable to be covered up despite multiple attempts w/ baby wipes to scrub her seat and the air freshener purchased. Fairly comical looking back, but I assure you not so much in the moment.

Hayleigh's daddy was struck by a deer on his way to work on Monday. Nearly $5,000 worth the damage and almost 2 weeks time to repair. The deer was on a dead run and plowed right into the front quarter panel with its breast; it's head struck the hood; rearend (poop to prove it) struck the driver door near the handle; rear hooves dented lower back door and knocked off the mirror that caused the driver door window to blow out and show him with glass. Thank you Jesus, he was unharmed. A local farmer stopped by and we loaded the deer up into back of his truck so he could process and have a freezer full of venison. OH NO, he did not even offer any for us! Hope his family eats well this winter while we continue to eat beans and rice and rice and beans. (hey it is soft enough and easy for Hayleigh to digest, right?

Until next time...

Time Keeps on Slippin Into the Future!

2008-08-08T22:38:00.004-04:00

Where has the summer gone?!!! (Oh yeah) There was a surgery (major), Grandma Taylor-Thompson, a wedding (i mean weddings), work and a surprise guest (Grandpa Taylor) who is here indefinitely with the possibility of beginning a new life for himself here. This is our families way to sorta "pay it forward" as sooooo many wonderful family and friends here helped us when we moved back here. (THANKS TO ALL OF U)

Well Hayleigh Joy is doing wonderful! We are anticipating a routine visit on September 10th with Dr. Grifka and anticipate going to a t 6 month visit followed by a yearly visit after that. She then should be on yearly ekg, echocardiogram, chest xray and labs.

Hayleigh still does not have any teeth. (Aaargh) The kid really wants to advance to "big" people food. Finding it a challenge to feed her foods that keep her full long enough. We are onto whole milk and no more formula (HALLELUJAH) that stuff is expensive, wow! We thought the cost of milk was expensive before we switched from formula, now it is not that bad after all! I pray it doesn't get to $20 + a gallon.

Enjoy the new pix and please respond to us! We would love to hear how all you summer's have been going and if there are any events or situation we could pray you through. Let us know!

Until next time...

Only Scars

2008-07-24T23:14:00.002-04:00

Hello everyone!

As you can see from the photo "only scars" remain to tell the story of the miracle child. Her last scab fell off during her bath time yesterday. Pain does not appear to be an issue anymore. We might still be dealing with a light case of thrush. She had a low grade fever for a couple of days that has resolved. We think it is related to her teething, but we probably will see Dr. Windler (pediatrician) to make sure she is ok!

Little boober wasn't taking her meds very well while the fever was going on. Talk about frustrating daddy! You had to practically wear a face shield and be armed with napkins and "wet ones" to engage in the battle! Thank GOD, she is taking her meds like a big girl now!!!!!!!!!!!! (yes i felt the need to emphasize my excitement!!!!!!!!!!!!!!!)

Her appetite is good, but we are finding it hard to feed her because she still does not have any teeth! She wants to eat the "big people" food, but we know that she continues to choke on it because she can't break it down well enough. We keep praying for those sucker (i mean chompers) to break thru and allow the fun to begin. She really enjoys a good PB&J. Maybe it is cause her daddy makes a pretty mean one, I mean the kind u need to cleanse after eating, LOADED.

Well I believe that is all the excitement for now. We are going out to the lake this Saturday (weather permitting; of course there is ALWAYS the "chance" for rain in this state), as the locals here will say (in that nasal sounding tone) "THAT'S MICHIGAN" (pronounced MEESHAGIN).

Until next time...

Wow! Where Does the Time Go?!

2008-07-16T18:37:00.005-04:00

Hayleigh and the rest of us have been really busy since we got home. Daily medicines, eating, xtra diaper changes (thanks to Lasix!), family/friends visiting, wedding and follow up Dr. visits! (Phew!)

Everything looks great according to the good Dr. Grifka (cardiologist); the only prescription we got from him and I quote, "take her home and love her to pieces." Look at that face! Does anyone think it will be hard to accomplish that? ( I didn't think so)

I have included som pictures from the wedding for Tony and Julie (brother and now sister-n-law). Hayleigh's steri-strips on her chest are all off and her healing continues to be just beautiful. We are finishing tomorrow the last of her Nystain for the oral thrush. (thank you Jesus!) We are expected to decrease her Lasix and Enalapril meds the first of August. Pain does not appear to be much of an issue for her w/ respect to her post op, but we think the teething has begun.

Hope all of you are enjoying your summer. Thanks again for your continued interest, prayers and support!

until next time...

Healing Well She Is!

2008-07-08T00:58:00.003-04:00

Yes, Miss Hayleigh is progressing extremely well. She is taking her meds very well. We unfortunately had to add another med (Nystatin) for the Thrush she has. Thankfully we caught it early enough that she is not suffering too terribly bad. Sutures came out very nicely (thanks Michelle from DMC Children's) on Saturday afternoon and the wounds continue to heal. Her chest incision is looking very good as well. I think the healing up process is causing some itching. Every chance Hayleigh gets when her clothes or diaper is changed she goes to work scratching away at the steristrips and scabs. Practically takes 2 of us to change her.(1 to hold her hands while the other changes the clothes/diaper) Pain does not seem to be nearly as much an issue now. We are giving her Motrin 1-2 times a day. She lets us know when she needs it.

Grandma returned to California safely. We all enjoyed our time with her. We were able to get out to see a light house, walk downtown Rockford and shop at the Hush Puppy store. Grandma took plenty of pictures. Will try to post some or a link to the site to view them. The weather was outstanding while she was here!(except for the arrival date; got caught in that nasty storm w/ hail and drenching rain) Hope to see her again soon!

We surely wish that she would sleep better, WOWWY! Last night we were up every 1hr to 2hrs. We think it may be related to the thrush. I pray tonight we all get some much needed rest. We are scheduled to see Dr. Grifka (cardiologist at DeVos in GR) on Friday. Then we are off to the rehearsal dinner for Tony (my brother and Hayleigh's uncle). He is to wed Julie Worden on Saturday evening. I was given the honors of "best man". Hayleigh will be babysat by a good nurse friend of mine (Jason and his fiance Jane) for the wedding.

Thanks for continuing to pray us through.

Until next time...

New Look to Blog is coming soon...

2008-07-07T19:25:00.003-04:00

PLEASE BE PATIENT WHILE CONSTRUCTION IS UNDERWAY!! NEW LOOK AND FEEL COMING SOON. HAYLEIGH JOY ALBER IS DOING WELL AT THIS TIME.

Continues to Improve

2008-07-05T01:18:00.002-04:00

Hayleigh is continuing to improve. We did however have a little concern that had us in the ER at DeVos July the 3rd. Needed to get an echo cardiogram done to be sure there was no fluid around her heart (there is not!). We believe it was pain that was causing her head to sweat and feel kinda clammy. The rest of her body was cool to the touch. We were also concerned about her breathing.

Just like taking your car in when it makes that sound (ya know the one that "conveniently" disappears when the mechanic takes the test drive!), so of course half way through our visit while we were there breathing improved, no sweaty head and all smiles. (mind you w/o any intervention by the staff) There she was sitting up on the stretcher smiling and giggling. I am glad to report to you tonight that she remains that same way, thank God! The cardiologist Dr. Fenrich said that her heart repair looked good. Nice work Dr. Walters!

Boober was healthy enough to take her grandma from California out to the big lake. We visited the Whitehall lighthouse and walked out on the channel. The weather was outstanding! Then we sat downtown to watch an awesome display of fireworks. Hayleigh stayed w/ her nana and papa. She is very sensitive to sound after having her ear tubes placed so she would have been crying and screaming throughout the fireworks. Grandma took pictures we can show her later.

Thank you again for all the prayers and encouragement we continue to receive. Hayleigh will see her cardiologist this next week on Friday. We are looking to hear nothing but great things. We do know after our visit to the ER that her weight continues to go up 18#'s!!!!(I think it is all in her cheeks!) I suspect by Friday her weight be up even more with her appetite picking back up. That girl loves her food. Time to retire for the night. GuNight!

Until next time...

On the Mend!

2008-07-03T00:14:00.002-04:00

Hayleigh Joy is blowing away all our expectations! She is healing well. She is being a being a good little Boober and taking ALL her medicine (unlike some members of this family). Her grandma from California arrived safely despite the MONSOON that blew through the area and knocked out our power. Needless to say we had some quiet bonding time while the candles burned! Hayleigh was being quite the little ham for Mommy, Grandma and Daddy (no TV, Radio or even big sister's around to steal the attention)so she just sat on the floor and smiled from ear to ear for hours. She played w/ her toys and just made sure we were watching.

She has not really showed any signs of pain or discomfort. Appetite is improving. She is continuing to cough very well to get rid of the extra fluid. (Michelle the nurse from DMC Cardiology would be proud) No more episodes of "explosive diarrhea" that several DMC Nursing staff had the displeasure of experiencing! (thank God for small favors)

PLEASE, PLEASE lift up baby ELLA to the Lord in prayer and let's overwhelm the Throne of God! Please click the link to the left of your screen to read her story. The Pannecouk (pronounced PAN-A-COOK; thanks Jason for helping out with that!) Family is wonderful, but they are weary after so much that has gone on and the length of the stay. Sound very drained and just need some good news and ultimately desire to go home. Thanks.

Well it is time to sleep now. More pix to come as Grandam is taking plenty. Thank you all for the wonderful birthday wishes and gifts.

Until next time...

GOIN HOME! (cue the Daughtry song please!)

2008-07-01T13:30:00.002-04:00

I'm going home,
Back to the place where I belong,
And where your love has always been enough for me.
I'm not running from.
No, I think you got me all wrong.
I don't regret this life I chose for me.
But these places and these faces are getting old
So I'm going home.
Well I'm going home.

Yeah! Keep singing it everyone! Oh yeah!!! We are blown away by the healing power of God! The great sacrifice you all made praying, spending time encouraging us through your postings and emails! Please keep checking the Blog for further updates. We are planning to keep things going for a long time to show her continued progress, plus Michelle and I are discussing an idea we may start implementing to "pay it forward" as we realize we are unable to "pay it back"; more to come in a future blog!

Yes, Hayleigh is going home on her first birthday and we get to p/u her grandma from California tomorrow afternoon! YEAH!!!! We are all anxiously awaiting her arrival! It is rare for me (just as my wife and parents) but I am truly speechless to just how wonderful this has been from the Hospital staff, Ronald Mcdonald House, new friends (Jason and Angela Pannecouk, see Ella's blog on our site) and ALL of YOU! I am astonished and amazed by the power of God to work through all of you! You and the staff here are all the more evidence to a loving God who hears our prayers and works in the lives of His people. AMEN!

Please enjoy the photos (see below) to follow. I do want to say a special thanks to Dixie for helping Papa with the "Hayleigh Wall" in his office filled w/ her phots!

Will post again soon!

Until next time...

It's ALL Gone!!!!BuhBye!

2008-06-30T18:13:00.002-04:00

Yes! All IV's, drains, tubes, IV fluids are gone! It appears we are going to be going home tomorrow if all continues as we are now. That would be an awesome Birthday gift for her as she is turning 1yrs old tomorrow!!!! Mommy and I are certainly ready to be home. Even though we have had decent sleep, we are still not rested. That will take place when we arrive home.

Hayleigh needs to sleep, but she is too intrigued by her surroundings. She also is catching the eye of multiple staff members as her room is by the door. Many just find her irresistable (can you blame them?) even been told she looks like the Gerber baby(maybe I can negotiate a deal to update their logo? After all I do have plenty of weddings to pay for and possibly college! YIKES).

We are still awaiting possible transfer to step down unit, but for now we are ok w/ where we are now. I much rather stay where we and she are familiar. All is well!

until next time...

One Step Closer to the Door!

2008-06-30T13:08:00.003-04:00

<I was able to hold her and feed for the 1st time in several days!!!!

Praise God from whom ALL, I said ALL, blessings flow! God is good! "ALL THE TIME." "All the time" GOD IS GOOD! Good or bad HE never changes and always stays the same. Amen? Can I get an AMEN? Thank you! I am just enjoying a little bragging time for my Lord and Savior Jesus Christ! He blessed us w/ all of YOU! You all deserve, as my dad would say, "an atta boy!" for all the hard work you all did in petitioning the throne of God to see us and our daughter through the hard times. We again will NEVER be able to repay or say thank you enough for what you all have meant to us! No amount of money or material possessions in this world could ever do justice for all you did! Please remember to openly praise and thank God for hearing all of us. That would be mine and Michelle's biggest request is that HE get's all the credit for being the great Physician, Healer and Daddy to us!

I need to also say that we are ever in debt to Dr. Walters, his staff and ALL the wonderful nurses, pa's, respiratory, Unit aides and secretary's at Detroit Children's Hospital, YOU ALL ROCK!

NOW to what u all have been anticipating and the main reason u have come to this site, Hayleigh JOY!

She has NO MORE tubes in her little frame to speak of! HALLELUJAH JESUS! All 3 chest tubes? GONE! Foley catheter? GONE! IV fluids and meds? DONE! 4oz bottles of formula? DONE! Ok so what is left u ask? The central line in her right jugular vein (to be removed today) Right wrist Art Line (likely gone today) and the heart, oxygen and blood pressure monitors. They are beginning to wean her off the oxygen which is down from 1.5L of oxygen to 1L of oxygen. All her vitals are great. Pain is really not been an issue. All her incisions look great. She is beginning to smile and blow bubbles. She has won the entire staff over with her eyelashes and smile. They and us all have said she has been a great
patient!(unlike her mother)

Well we are going to go back over and see our little BOOBER and just smile like it's going out of style. She is likely to be transferred to the step down unit after 3pm eastern time today!

Until next time...

She's Getting Better Everyday!

2008-06-29T22:36:00.003-04:00

Oh where to begin, oh yeah P R A I S E G O D !

The pneumothorax appears to be resolved as of the 6pm chest xray, the chest tube drains are dry, they not only removed the pacer wires today they also removed the tube in her abdomen, she sat up and ate baby food and continues to slam down 4oz. bottles at Guinness Book record pace! (okay, may be not, but it is close)

We can't thank all of you enough for your continued prayers and support. It sounds like tomorrow she will have the 3 remaining chest tubes removed (pending xray in the am) the jugular central line pulled and likely be on all oral meds. If all goes well she will have only a peripheral IV and the monitor wires on her. All this to say we will be moving to the step down unit(which is actually a step up and consequently a step closer to going HOME) We are anxiously awaiting to see Michelle's Mom on Wed so be more specific about our return date home when u petition the Throne of God!

We (especially Michelle) had an awesome time out w/ a couple (Jason and Angela) who have a baby 2 1/2 weeks old (Ella, so pray for her too!) in the PICU after open heart surgery as well. We went to a Thai food restaurant(which we have never had b4) and to an awesome pastry shop in Greek Town for dessert. I say this because Michelle really needed a good time like this and I am convinced that God brought this wonderful couple along to be used to help my wife as a result of your prayers! Praise the Lord, Hallelujah, Amen!

More info to come after am rounds by our physician tomorrow. We will of course inform u all asap. Thanks and can't wait to see you all soon!

Just a reminder (Dixie) that on the blog page upper left side there is a link for all the photos that have been placed on the blog site.
until next time...

Post Op Update!

2008-06-29T15:58:00.002-04:00

Hayleigh is taking down bottles faster than the nurse can keep up with! They successfully took out the pacer wires w/o complication. She is doing fine w/ just tylenol for pain and discomfort. She looks like she is ready to just get out of the bed and sit up. Hopefully tonight we may be able to remove one of her chest tubes. The right chest tube will remain a bit longer because the upper right lobe of her lung is slightly collapsed (pneumothorax). Nothing terribly concerning yet, but will re-inflate w/ chest tube.

We are hoping to be transferred to the step down unit by tomorrow. No official word, but I guess wishful thinking mixed in w/ some nursing judgement. We shall see. Thanks to all who have been posting such encouraging words, scriptures, and prayers! We are looking forward to being home.

Please pray more specifically for my lovely bride as she is dealing w/ a lot of emotions r/t her Hayliegh of course, but also the 3 others being away from home and a molar that is causing her quite a bit of discomfort. Thanks!

Until next time...

Post Op Day 3: GOOD! Night

2008-06-29T00:46:00.003-04:00

I am sooooo excited to report to all of you that Hayleigh Joy is off the ventilator!!!!!!!YEAH! Praise The Lord, Hallelujah, Amen!!! She looks so much more comfortable now that the tubes in her nose are out! She was awake and alert enough to begin blowing bubbles at all of us and smiling. My tears for fears (that sounds like a good name for a band! Hmmm?) have turned to tears of great joy. What a wonderful God I serve. HE is the Great Physician. Thank you, thank you and thank you all sooo much for the prayers and encouragement. It is such a wonderful thing to come back to our room from the hospital and read the comments and emails everyone is leaving. Keep them coming. It might be cutting it close but if you want to send physical(snail mail) we have a box here at the Ronald Mcdonald House. (3911 Beaubien - Detroit, MI 48201 Box #19)

Our 3 daughters made it safely down to see us w/ their wonderful nana and papa. We spent sometime together today at the science center for kids. Very nice to see them and be a family unit again. (Thanks to all my fantastic staff at MetroHealth Emergency Dept)

We anticipate having Haleigh on all oral meds tomorrow and quite possibly begin removing the tubes in her chest. Hopefully in a day or two we will be going to the step down unit and then home sweet home!

Well it is getting late here and we have another fun and exciting day tomorrow and the sooner I fall asleep the faster that day will come! May God richly bless all of you and I will leave you all with a wonderful quote from a book I was gifted by a co-worker (Chad) from Metro ED called, "101 Reasons Why God Made Dad's".

God made dad's because...Somebody needs to show us how to handle tough times:

"If we make our troubles an opportunity to learn more of God's love and His power to aid and bless, then they will teach us to have a firmer confidence in His providence. BILLY GRAHAM

Until next time...

Post Op Day 3: Morning Rounds!

2008-06-28T11:21:00.002-04:00

Hayleigh (PRAISE GOD) is doing AWESOME! Just returned from visiting w/ her for about an hour at which time she woke up and was calm and not stressed out. The nurse was able to swab her mouth and she began sucking on it! She just looks so peaceful.

The physician ushered us out for about 20 minutes to sedate/paralyze her and pull out the LAP!!!! We left to allow for her to lie still for an hour or better so the risk for bleeding is reduced the longer she is still. Next will likely be working towards taking out the pacer wires and then weaning her off the ventilator!

I asked the nurse how her bowels were if she had any bowel sounds and shortly after that while Hayleigh was waking and stretching she proved it by letting out a little toot! Praise God! (I know it is odd to give praise for such things; remember what my profession is!) Things are good w/ mommy and I, especially mommy because she really wanted that LAP monitor taken out. Keep the prayers and praises going. Thanks again for all the interest and care! Talk to u soon!

until next time...

End of Post-op day 2

2008-06-28T00:08:00.002-04:00

Hayleigh is doing well. Still on the vent, but appears more comfortable. Planning to begin weaning her off the vent tomorrow night into the following day. Cardiac function is improved and peeing normal. Low grade temp of 100.4 +/- a little. Tylenol helping! The Doctors will round on her in the am and plan to remove a line that is measuring her left atrium pressure that has a risk for bleeding so they will sedate her for it and keep her still for at leas 1hr following. If no bleeding then they should begin to wean her off the vent. Yeah! The Physician believes that her moving around more is related to the tube in her nose/throat and believes that once we get rid of it she will calm down and begin making huge strides towards recovery.

Thanks again for all the words of encouragement and continued prayer support! Keep it up!!!!
Very excited for tomorrow, our 3 other girls are coming w/ my most awesome (did I just type that?!) parents to stay over night!!!! Can't wait to see them. Will have plenty of pix for you all.

One final note: to left of the blog is a link to an online photo album of Hayleigh. They are all the pictures that have been posted on the blog. So enjoy!

Until next time...

Post-op Day 2

2008-06-27T12:29:00.002-04:00

Hayleigh is still doing well. No major changes in her appearance from last night to today. She is moving around more than they would like for her healing so they are upping her sedation meds. Her blood pressure is a tich too high so they are slowly tweaking the meds to bring that down, but the meds for sedation are causing bp to raise. They also placed on Lasix (diuretic) to help her pee! They are slowly increasing that as well. They are going to pull out LAP wire that measures the left ventricle around 4p today. They are concerned for bleeding when that happens so she will have to be sedated for at least an hour after they pull it out. Her Coagulation labs and Hemoglobin look good so she is not at risk for bleeding.

Mommy and I are doing well. Post Traumatic Stress Syndrome I think set in a little this am for me! (smile) Let's suffice it to say, Mommy was pleased when I left the room to regroup! (laugh) Time alone in prayer, "I'm sorry" and a cup of coffee(for mommy) later, all is great! (just keeping it real, ya know?) Most people would probably choose to leave this stuff out, but my purpose to inform people and help make praying more specific, right? (yes that means u need to pray specifically for me! We all know mommy's do no wrong, right?!) (smile)

OK, well I think we are heading back to check in on our little BOOBER, so we will update later.

Until next time...

PICU Poses as Promised!

2008-06-26T23:18:00.001-04:00

Safe Landing into PICU

2008-06-26T19:50:00.002-04:00

She is doing great! Has not woke up (woken up for all u Michiganskers!) yet. They are waiting for her to begin showing signs of waking up before they medically induce a coma to allow her to rest. Need to be sure she is acting normal before they can sedate her.

The physicians and nurses continue to tell us she is doing very well. One exception is that she appears to have HIVES on her so working to figure out what she may be allergic to. Possibly the antibiotic from surgery. Might be the pain medicine too. We'll wait and see. They are watching her very close for the next 24-48hrs w/ 1:1 care. (a dedicated nurse all to herself)Very comforting for Mommy and I. We plan to get our strength by sleeping well the next couple of days. As the nurse in PICU put it we are "off duty" for the next 24-48hrs. Not to confuse that with "off worry"! (more r/t mommy)

I was a wreck while she was in surgery and now Michelle and I have reversed those roles. (must be the nurse in me) Pre-op everybody was worried about Hayleigh having separation anxiety so she got Versed, but I think the wrong person got it, it should have been me! I was a blubbering fool. I told everyone that would be the hardest thing for me and it was. Like I said it was truly the hardest thing I have ever endured in my life to this point. I was reminded of a couple of promises God in his word gave me: in Matthew Jesus promises to "give" me"rest" when I "come unto Him" and the other would have to be that "with Him all things are possible". His strength is perfect especially when my strength is gone!

Well I want to go back to see my little BOOBER and protect the staff from an overly protective mother. (smile)

Tonight, before I retire, I will post some pix from the PICU showing all the "stuff" Hayleigh has coming out of her body and the multiple IV lines and monitors. WOW!

Until next time...

Final Approach to Landing!

2008-06-26T14:30:00.002-04:00

Finalizing things as we speak (I mean type) as far as final tests of the heart itself as she has been removed from bypass. Dr. Walters came to visit w/ us and after all the technical lingo finished by saying that, "if this were my child I would be very happy with the results". PRAISE GOD! Shout for JOY all u children of the Lord!! Mommy and I breathed a huge sigh of relief.

An amateur attempt to simplify the Medspeak we just received hopefully not Tim Allen style after talking to Mr. Wilson:

Pulmonic valve slightly on the small side of normal, but has 3 leaflets that were functioning normal. Concern was they would be too thick, allow back flow of blood (leaky valve) or appear like "cauliflower" and none of that was found. Dr. Walters has every bit of confidence that her valve will continue to grow w/ her and most likely avoid replacement of her valve and for that matter never need heart surgery again. (can I get an amen?) Let me retype myself, NEVER NEED HEART SURGERY AGAIN! AMEN!!!!!!!!!!!!
Was able to open above and below the valve for maximum inflow and outflow that will never be an issue.

The only negative, but not really, is that she will have a gradient of 10-15% at the valve where we all have a 0% gradient. To simplify, pressure at the valve essentially. Tell u what if that doesn't suffice please feel free to google it! (smile) The reason it is not a 0% is that Tetralogy kids never achieve that, but to be as close to single digits is better.

Overall, Mommy and I are very, very pleased! She at this time is doing very well. Dr. Walters said that he was taking a break to speak w/ us and probably look at something besides hamburger(smile) or for u Michiganskers HAMBURG! (laugh). For you southerners, oh never mind!

Well praise God from whom ALL blessings flow! Thanks to all of you for praying us through, but don't let up we still have all the risks associated w/ recovery now! More updates to come. Like Dr. Walters in the surgical suite, I must close! (pun intended)

until next time...

In Flight Update!!! (10:00am)

2008-06-26T10:19:00.004-04:00

Colleen RN came out to tell us that Hayleigh never once cried and just smiled! (that's my JOY) Colleen also stated that all the lines are in and all went in very smoothly. They are now entering the bypass (heart and lung machine) process that is scheduled to take about 1hr to 1.5hrs and then we will get another update b4 they start working on heart itself.

Thank you, Thank you, Thank you for all your thoughts, comments and most importantly your prayers. Please keep them coming. I can tell u this has been the single most difficult thing I have ever had to do in my life to date. WOW!

Michelle and I would like to openly give special thanks to those of u that blessed us w/ gifts:

Kim Domines (Michelle's sister) and the Entire California Family xoxoxoxoxoxo, the girl's want to thank Uncle Adam for his gift to them as well!
MetroHealth Emergency Dept.
God bless all of u! You all are making it possible for Nana and Papa to bring my 3 girls down to stay for a night and visit us this weekend, THANK U!

The GREENVILLE Clan You all are the best!

Tony and soon to be Aunt Julie! Love u both very much.

Nana/Papa w/o your strength and support it would be near impossible!

TiTi Vonnie thanks for spoiling the other 3 stooges while we are away.

Aunt Jackie, Aunt Barb and Aunt Deb for your gifts to help make our time away much easier.
ther have been sooooo many other prayers and encouragement that I want to truly say THANKS for your support. Keep coming back as I will update w/ pix and info on my little BOOBER.

until next time...

UPDATE W/I AN UPDATE:

Colleen just came in to inform us that she is on bypass now and that it could take up to 4hrs or little more or little less. She again reiterated that all is going smoothly and moving along faster than anticipated. We all are ok w/ Dr. Walters taking his time after all he has Hayleigh's heart in his hand, but the Creator of the universe has her in HIS mighty hand. (amen?) Well we will udate u much later.

now, until next UPDATE...

PRE-OP DAY/EVE

2008-06-25T22:56:00.002-04:00

I don't have much time to spend tonight as I am EXTREMELY TIRED (3hrs sleep last night and on the eve of one of the biggest events of one's life, amen?) so I will be in rare form tonight and be brief and get to what all want to know. We arrived safely and on time (that's rare). Everything went smooth for all pre-op testing. We were able to get a nice room at the Ronald Mickey D's House. And as for:

MOMMY and DADDY: cautiously optimistic; resting in the loving arms of our great God and Savior Jesus Christ; we understand that this is absolutely necessary and are very grateful for being able to choose the surgery date unlike many others! The hardest moment for me tomorrow is when I will have to let my little BOOBER go away on the stretcher as I (ball my eyes out) will have to stop and realize she will have to keep going and fighting w/o me! (whew) We are most certainly comforted by all the prayers that will be offered up during this most difficult time; I can say w/ confidence that those prayers are felt!

HAYLEIGH: playful, smiling all the day long making everyone comment who comes in contact w/ her about how "happy" she is, how beautiful her "eyelashes" are; eating plenty of food as she won't be for the next couple of days.

Operation is scheduled to begin at 0830 est on June 26th and is expected to last approx. 4-6 hrs. We will get an update once when she is on the heart and lung machine, and two more times along the way w/ the 3rd time being w/ Dr. Walters when all is done. (please pray specifically for him) We will then go up to the PICU (pediatric Intensive Care Unit) to wait for about 1hr, then plan to be at her bedside.

She is expected to have an arterial line (an IV line in her artery to help monitor blood pressure every second) peripheral IV (what everyone admitted pt has) likely a central line placed in the external jugular, a foley catheter, her airway will be secured through her nose with a breathing tube and vent, up to 3 chest drains and be on the ventilator while being sedated for 1-2 days.

Well I'm tired. Enjoy a couple of new pix!

More to come soon!

Until next time...

Surgery is scheduled! ("yes, really!")

2008-06-06T23:00:00.003-04:00

June 26th at 7am in Detroit, Michigan the open heart surgery will be performed. The entire procedure is expected to take approx. 5-6 hours. The first hour will be to put her under anesthetic and on the heart and lung machine. Dr. Walters is the surgeon from Detroit's Childrens Hospital a part of the Detroit Medical Center that will perform the procedure.
Hayleigh and the family will be going down to Detroit on the 25th for pre-op testing. We covet your prayers for the whole thing, but the first specific request would be that she is free of any viral infections/colds or we will have to postpone again. The other is the health and freshness of Dr. Walters. He stated that if he had to do something like a heart transplant he would postpone her surgery so that he would be fresh are well rested for her operation. Gotta love that way of thinking!
We are preparing for 7 days stay at the hospital that is 3 hrs away from home, but have hopes of being home in 3-4 days as that apparently is common. Amazing that you could be home in 3-4 days after having your heart stopped, operated on and restarted again. Praise God for modern medicine (I know I am a little biased as I work in the field). We are looking into accommodations for that time frame. Hopefully we find something w/ the ability to cook as hospital food is not cheap!

We will keep everyone posted and up to date daily while we are there as we did before. Thanks in advance for all your support, love, encouragement and prayers. If you desire to visit we would love it, but understand with the cost of fuel these days, it may not be conducive. Please post comments and prayers as we love them. If you have any questions about any part of this please post them and we will answer.

Enjoy the new photos of our little BOOBER BUTT!

Until next time...

"S" Day Is Finally Scheduled

2008-04-24T12:34:00.002-04:00

Hello all! Yes, we have a scheduled day for the big surgery we all have known was coming, but like any parent you hope it keeps on waiting and waiting. The wait is over! Hayleigh Joy is going for heart surgery on June 12th at approx. 7am with pre-op testing and possible admission on June 11th. We saw the heart doc yesterday and because she had 2 TET SPELLS (when her lips, cheeks and tongue turn a blue color) lasting less than 30 seconds in past 5 wks, they do not wish to take any more chances with her having further tet spells that could be more serious.

This is God's timing I tell you because we will be able to celebrate Chelsea's 7th B-Day on the 8th and then have the surgery done. This also allows some healing time to pass before my brothers (Tony) wedding in mid July.

Please be in prayer for the surgeon Dr. Hilman and all the supporting staff as we approach that day. The surgery is better than 96% successful. I will have more updates to come as we get closer to the "S" day, including details of what they are going to repair.

Until next time...

It's All Good!

2008-03-24T08:08:00.004-04:00

While my daddy is still running around looking for his head, I will take the time to tell you all about me! (after all it is about me right?) I am 13lbs 11oz as of last week Wed. My chest xray was great and the heart doctor (Dr. Grifka) did not have much to say other than go home and love her like you have been. Mommy had more to tell him than he did us! (my mommy she likes to talk, wonder where I get it from?) I am sleeping through the night. I actually even stopped pooping at 2am! (daddy is particularly proud of me for that) I am hearing the world in ways I never new I could w/ the ear tubes in place, which by the way, we saw my other dr. (Scalf ENT) and he said my nose and throat look great. Amazing how more of life and development you can gain when your not working on breathing! My cough is gone, too! He wants to see me again in 6 months. I am enjoying many new foods these days.

I am sitting by myself (for the most part when my sisters give me the chance to sit for 5 minutes alone). I got some really cool stuff from my Nanna and Aunt Jill for Easter. Lot's of great clothes that mommy was ooing and aaahhing over. I did not get any candy, but daddy did feed me a baby-sized (baby sized piece, get it?) of banana cream pie (sorry Naomi, I will talk to daddy about bringing a piece by tomorrow night!) that I ate all of. WOW! What a tasty treat that was! I also got a cool big girl chair w/ a tray to help me feed myself (or get more all over me). My grandma Taylor is going to come from California to visit me for my birthday!!!!!!

Well I am sure many of you are like my daddy running around busy w/ your heads cutoff or whatever, so I will not keep you any longer. I am doing AWESOME as my daddy likes to describe my progress. Heart surgery is not going to happen atleast for antoher 3-4 months or longer!!!!!!

OK, gotta go I have a very busy schedule to keep MOMMY...............

FATTY FOOMFALATTY!!!!!

2008-02-29T10:59:00.001-05:00

Hey everyone I am now 12lbs!!!!!! First time since I was born. I LOVE to eat (and poop) Alot! Thank you Dr. Scalf for making me breathe better! I am feeling (acting) like a whole new kid. Too much fun! Thanks to all of you for your prayers, they are working. Gotta go! (schedule to keep ie. sitting, rolling, eating, talking; ya'know the important things)

Until next time...

HayJoy!

"MOMMY WOW! I'M A BIG PIG NOW!"

2008-02-27T15:25:00.002-05:00

YES! I made that song up myself (after all I am into song writing), but this little (hehem, I mean big girl) is PIG'N out! We were eating cereal in the morning followed by 3oz bottle and maybe 3-4oz in the afternoon for lunch, then baby food at dinner and another 2 bottles by bed time and that was it. Not so much anymore, holy Hannah Montana! She is almost doubling her food intake. Praise the Lord for that!!!!!! Michelle was able to figure out that she was getting maybe around 450 calories a day and now she is pushing 750 calories or more! WOW! I will need to keep my 2nd job for diapers and food! (smile)

She is totally a different kid! Sitting up now for the most part by herself, feeding herself her baba, and hearing everything (especially my clumsy self in the early mornings getting ready for work, Michelle doesn't like that so much). Her work of breathing before surgery was to me the equivalent of having a nose plug and walking up a medium incline all day long and try to be functioning as happy go lucky child. Now you can hardly tell she is breathing. We actually have to stop by her room before we go to bed and look in on her to see that she is breathing. That is cool.

Thanks to all of you for your prayers, encouraging words and support! All of you have been wonderful. You made it easier to get through this whole process. Give yourselves an "atta boy or atta girl pat on the back" and ultimately give thanks to God for answering all of our prayers.

BREAKING NEWS!!!!!!!!!!!!BREAKING NEWS!!!!!!!!!!!!!!!

Dr. Grifka told us after the heart cath that he felt she was 3-4 months out from needing open heart surgery at this time. Her condition is such that she will not change dramatically. Her heart problem will slowly effect her over a period of time and then we will need to do the operation. For now we just need to get FAT!

I will plan to update the Blog weekly so please continue to check up and post your comments!

Until next time...

I'M "COMING HOME" TODAY! YEAH!!!!

2008-02-22T10:31:00.002-05:00

Yes I am going home today, whoops! I mean right now as my RN is here w/ d/c papers in hand and Rx meds (prescription drugs, of course). I look forward to seeing you all really soon! Thanks aunt Barb for taking care of my 3 goofy sisters so I could have my mom and dad all to myself (not like a 6 year gap isn't good enough, but I digress!).

I have been able to breathe soooooo much better and now I look forward to becoming the little chunk that "everyone" wants me to be. I have to continue taking abx to keep my heart safe from infection and abx (antibiotics, sorry remember this my dad the RN typing this as if it were me and he is not doing the greatest as you can tell!) and put ear drops in my ears for the next 3 days. AND EAT, EAT, EAT my SWEEEEEEET Sweet potatoes (in addition to bathing in them) and my most YUMMY Bananas! See you soon!

OK DADDY LET'S GO! (after he changes my stinky diaper, hee, hee)

Post Op Update!

2008-02-21T13:24:00.003-05:00

Hayleigh's surgery was successful in removing the abnormally large adenoid (found out today that all of us who pluralized this gland were wrong, so no more referring to the adenoid as "adenoids" for there is only 1) and it only took about 20-30 minutes! Praise God! Dr. Scalf (ENT) said that because of her small size and small features that he was unable to perform the procedure with the usual surgical instruments so there is a remote possibility she will need additional "clean-up" done. He said that the concern he had was the eustachian tubes being damaged if he were to have cut too much this time around. We will follow up in couple of weeks to see then!

How is she doing now? So, So. She continues to wake-up intermittently crying and appears she is painful. Very tough to watch you child go through. (I think I am going to talk to the staff here and see if Michelle can get some morphine too!) It has been 14hrs since the little girl ate anything, so we are hoping to get her some food soon, but right now she does not seem interested. Her breathing and hearing appear to much improved though. (not so good for me because I am clumsy and loud, especially in the am) Well I think that is all for now. We are planning to be discharged tomorrow sometime.

more to come later...

E

Here We Go Again! Surgery 2

2008-02-20T19:25:00.002-05:00

Yes, Hayleigh Joy is going to Spectrum Health Butterworth for Adenoids and ear tubes on February 21st at 7:45a. We have to be up at O Dark Thirty to be there by 6am (Arrrgh! Yes, I know she is worth it just look at her!) (smirk)

The funny thing is that the procedure will take approx. 20 minutes, but 2hrs of prep and recovery from anesthesia. How much does the physician make? Sorry, I digress! The ENT Dr. Scalf is a rich, I mean very nice and wonderful physician so please pray for his steady hand to do a great job. We will certainly update as soon as we are able tomorrow following the surgery. She will be staying overnight for observation and hopefully discharged on Friday 22nd. Thanks in advance for all you encouragement and prayers.

One final note: EVERYONE IS ABLE TO POST A COMMENT W/O HAVING TO SIGN UP FOR GOOGLE ACCTS, I UNLOCKED THE BLOG SITE. COMMENT AWAY WE APPRECIATE THEM!

God Bless!

Eric

At Home and Loving It!

2008-02-17T17:43:00.002-05:00

Yes! Hayleigh is home and enjoying it! She is unfortunately awaiting another surgery in a couple of weeks for having her tonsils,adenoids and ear tubes placed. We are going to talk w/ the ENT doctor tomorrow and discuss. If I get my way (which we all know how that typically goes) hopefully we will be in the hospital next week Tuesday.

I must tell you this little girl has really ministered to me after learning what she lives through everyday. She can't breathe and yet she still smiles and enjoys life. The child only fusses about two things: 1. change my diaper 2. feed me some food. Otherwise she just smiles and goes w/ the flow. It wasn't until the Sweet Potatoes experience (it was more like a bath in them) that I got it! My new mantra for life is "Enjoy the sweet potatoes!"(others may choose to say stop and smell the roses) The picture below will forever be burned in my mind along w/ watching her devour 2 jars of the stuff. The child loves food (she comes by that naturally!). Michelle and I have said from the beginning that this little girls is special, but did not realize just how much God could use her to change my life, wow!

In closing, I guess I would like to encourage us all to try and slow down, take in the beauty of things around us, smile a little more, be excited and grateful for all the wonderful colors, smells and tastes in this life experience that God has allowed us to! Do it from that child-like disposition (maybe you too need to get your next meal all over you and start to live again) and take things in as if it were your first time again!

Thanks for your continued support and prayers as they make a difference. Look forward to hearing from you all. May God richly bless you and keep you.

Remember: ENJOY THE SWEET POTATOES!

E

Day 4: D-day (discharge day)

2008-02-15T17:20:00.005-05:00

I am going home! But I will need to come back for surgery in a couple of weeks. Thanks for all the support and see you soon.

IT'S ALL DONE AND ALL GOOD!

2008-02-15T13:09:00.001-05:00

She is "back in baby's arms" sing w/ me now...(ok, well she back in my baby's (Michelle's)arms again and that is a REALLY GOOD THING! The report from Dr. Grifka was she did great! Everything is as good as could be given her heart condition. She is getting good blood flow through the narrowed part of her heart near the pulmonic valve that leads to her lungs. The arteries in the lungs are developing good. (Important for her ability to keep up w/ oxygen demand when she becomes more active, yeah!) God is good! (all the time) All the time! (God is good) Even when things are bad He is still good! "Amen" Dr. Grifka said that her vitals during the procedure normal. She had a scalp IV done as her only casualty! (mommy did not like that as much)

It appears now that Hayleigh will be needing to have surgery scheduled within a relatively short period of time to remove the adenoids and put the tubes in her ears by Dr. Scalf. (I know I used the term relative, but it is all I know as we have not discussed details w/ Dr. as to when, I assume in the next couple of weeks.) Not sure when we will be going home as of yet, possibility of tonight, but definitely tomorrow! She will let us know when. Right now she is on every half hr vitals and progress to every hr for several hrs. Hayleigh is managing her own air way as the picture below will show. (it is supposed to be blow by oxygen, mommy and I are getting our fair share of oxygen as well. One would think the oxygen tubing was alive and attempting to attack her!)

Well we shall report more as we discover more! Thanks once again for praying us through!

stay tuned...

Playing the wait and see game!

2008-02-15T10:44:00.000-05:00

Hayleigh is in the cath lab now and has been for the past 2.5 hrs of which could possibly take 4hrs. We are doing everything we can to stay busy and distracted. On our way to the cath lab I noticed "INPATIENT" rooms on some of the door signs and couldn't help but wonder to myself, "WHERE ARE THE IMPATIENT ROOMS as that seemed more fitting for where our state of mind is (ok atleast mine!). We will update asap when we get our little JOY back in her room. Until then we impatiently wait!

E

Day 3: The Night Before The Main Event (HEART CATHETERIZATION)

2008-02-14T23:26:00.000-05:00

Today was a not so eventful day (which is always a good thing when your in the hospital! Can I get an AMEN! AMEN! "Thank you") You can tell that our little peanut is tuckered out after 2 separate attempts to get the IV. (just for the record they got it where I suggested; just in case your keeping record). So the IV is in place and we are expected to be down to the Cath Lab by around 0745 tomorrow. The procedure is supposed to last around 2-4hrs (yes, she will be under general anesthetic) so they treat it as a surgical procedure basically. The cardiologist Dr. Grifka, said that he is really pleased w/ all the other findings (or lack thereof), so he looks forward to seeing her tomorrow to do the last test/procedure of her stay. He is treating this as a pre-op exploration of sorts to get her ready for the open heart surgery to come by the time she is 14 months of age.

As of this posting we still have not heard anything w/ regards to the Cystic Fibrosis test. We assume (i know what doing this can make, so please keep this blog a G rated read) that it is negative based on our conversation w/ the cardiologist and the RN we are w/ tonight. The RN (I would state her name, but her name tag is flipped around, ya'know how that works, right?) stated that if it came back positive they usually run it 2-3 more times. They have not ran the test yet again or mentioned it. The RN is going to check in the records and let us know if she can find anything out.

Hayleigh will most certainly have to have the adenoids and ear tubes surgery soon! I have to get Michelle through this major ordeal first. Dr. Grifka (see atleast he isn't the MD, ok?) simply said that he did not have care when we had the surgery done, just as long as it isn't tomorrow morning at 0745. (smile) It will probably need to be done in the next couple of weeks. The child has suffered long enough. ("Amen")

The other 3 girls who were staying at home w/ my brother Tony ( your the best little bro ever!!) were able to join us for the first time at the hospital for a Valentines Dinner catered by my wonderfully supportive parents (Brent and Dawn) and Tony and his Fiance Julie joined us. It was really neat. My dad told my mother as they were coming in w/ the coolers that if anybody asked they were to tell them they had organs they were delivering! (Wow that was the best LIVER and onions ever! The bacon on top was a nice touch.)

In closing I can't thank everyone enough for your continued support and prayers! It really is making a HUGE difference. We check your comments on the blog site probably every 15-20 minutes while we are here, so please keep the comments coming it is really nice to hear from you. I am really enJOYing my time w/ my beautiful bride of 11yrs even in the midst of this uncertainty, because we are both founded on the Rock of Christ Jesus who is our supplier, sustainer and EVER present help in this time of need! It is HE who is in complete control and to Whom we give our praise and thanksgiving.

Well it is time for me to get some shut eye! Talk to you all on the other side of the big event. Until then, GOODNIGHT!

to be continued...

On the Move!

2008-02-14T14:00:00.001-05:00

Just a quick update: We moved to a new room #7428. We were in a ICU type room and moved to a less critical area and hey we gained a shower, so we are not going to complain. We also gained a great view of south Grand Rapids. The phone in the room is not functioning right now so call my cell# 616 477 4369. We have not heard anything new to report just yet. More to come later. We did all sleep a bit better. Mommy is missing her girls so I am on my way now to bring them to the Hospital.

Stay tuned...

On the Move!

2008-02-14T14:00:00.000-05:00

Day 2: A Day of Testing!

2008-02-13T21:45:00.000-05:00

Well, where to begin? We were woke up of course multiple times by staff (no way?! Yeah, way! In this day of modern medicine they still don't let you sleep!Arghh!!!!)and by 8am this morning they were in poking and prodding. I have to forgive them (naturally) because they continue to mention just how "cute she is" and "oh my look at her beautiful eyelashes how they flip up"(yeah that's my girl; it's all good now but not when she is 16, ok?) Sorry I digress!

The first test done was the sweat test for Cystic Fibrosis, which we have no results back as of tonight, but anticipate info tomorrow. Then the One Poke Wonder from lab drew her blood and her nurse Amy was successful in getting her Quick Cath urine. We then were able to visit w/ the pediatrician who informed us that we were going to be consulted by a Dietician, Speech Therapist and ENT. We no sooner finished w/ the PED's people and were whisked away to the bowels (basement) of the hospital for her chest xray.

After a couple of hrs of R&R we were then visited by dietary to FINALLY get her food right. Ask my wife about the struggles that was, wow. All is good now. Blood work and urine were unremarkable but the most telling of the the testing was the ENT consult where he place a scope into her nostrils and he even let me see the cool stuff in my kids' nose and throat (I know it's sick and wrong, but I'm an RN, we kinda live for this kinda stuff!)

He was able to confirm for us that her Adenoids are HUGE and she is not moving much air. The right nare is more occluded (obstructed) than the left. I kid you not, the air that can pass through on the right practically has to do it through an opening the size of this hyphen - WOW! Naturally that places more stress on her heart. Her vocal chords are inflamed and red because of the acid reflux that makes it to that level. No official plan has been made w/ regards to what to do, but my money is on surgery to remove adenoids and place tubes in her ears. Her hearing is the equivalent of you or I placing ear plugs in, so right now she is learning from her environment primarily by visual experience.

I want to especially thank Angie from Metrohealth for a very tasty meal and her daughter for sharing those most yummy cookies!!! Thanks Mom and Dad for your your blessings too! YUMO! Michelle and I really appreciate all of your prayers and encouragements through the responses via email and especially the postings on the Blog site. Keep it up!

Stay tuned for there will be more to come tomorrow...

E

Day 1: The Admission!

2008-02-12T23:56:00.000-05:00

God is at work already! We beat the bad weather by about 15 minutes or so. When we first arrived there was no knowledge of our being admitted, but was quickly corrected! God put HIS fingerprint on this whole thing by placing us in RM#7407. (i know what does that really mean?) It is significant to me, because that was her original due date! She was born on 7/1/07. We are also on the 7th floor. Has to be better than 666, right? or being in room 13!

Tonight has been nothing but getting all the paperwork done, figuring out what foods and formula, size of diaper. Hayleigh has been nothing but amenable to the whole thing. We finally got most of the staff on the same page. We tucked her and Mommy in around 10:30 and here I am burning the midnight oil.

Tomorrow: we anticipate things ramping up. Hayleigh is expected to get the IV inserted to run blood work, we are trying to catch urine in a PUCK (like a ziplock bag w/ really sticky tape at the opening that she does not mind wearing, its the removing that does not really excite her a whole lot. OUCH!). She is going to have a Ear,Nose and Throat consult (ENT for short, now I understand why they abbreviated it). Probably the most concerning and test of interest for me is the Sweat test that will determine if she has Cystic Fibrosis. This autoimmune disorder essentially plugs up the lungs w/ thick mucus (congestion, cough) and effects the pancreas making digestion a trouble leading to poor weight gain. We will know same day on this test. The life expectancy on individuals w/ this disease is around the ages of 30-40 yrs. We are going to be visited by a Dietition as well. That about covers it, I think?

I want to thank everyone for your prayers, your encouragement and help through all of this. Thanks to all of you who surprised us w/ the care packages, cards and other valuable re$ource$. (smile) We will never be able to thank you enough.

Thanks and please check back soon! For now I say goodnight and GOD BLESS!

to be continued...

Eric Alber