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Saturday, April 30, 2011

Easter, 7 weeks and G-tube isues

I have been meaning to post all week, but I haven't had time or when I tried, Blogger was down and I couldn't get the post to post:(  So lets see if it works this time!

Easter- was spent at home.  The Easter Bunny came and left goodies for each of the kids and leave over 100 eggs in the back yard:)  They girls had fun hunting for them.   The rest of the day was spent doing yard work and having  BBCola Chicken in the crock pot for dinner! YUMMY!

Monday we noticed some strange skin growing around Joey's g-tube.  I took pictures and email them to my wonderful friends who have/had a child with a g-tube.  All said the same thing: granulation tissue.  I had NO IDEA this was common on anyone with a g-tube.  So Tuesday started out with a phone call to the g-tube surgeon.  They weren't in the office that day but the nurse told us to come in and she'd take a look at it.  So after taking Summer to school, off to the doctor we went.  She applied Silver Nitrate Sticks to the skin and is essentially burns the excessive skin off.  It came off within a day and we have sticks at home now to use when/if the skin builds back up again. 

Joey also turned 7 weeks on Tuesday!  He is starting to smile now, but of course won't smile for the camera!  He still gets up every 2-3 hours to eat day and night.  Some days he sleeps a lot, other days not so much.  He is up to 2 1/2 oz per feeding.  My goal is to get him to 3 oz by next week.

I don't have any pictures ready to go up now, but I hope to do a picture post early next week!

Have a great weekend.

Wednesday, April 27, 2011

Joey's Birth Story

I stared this post shortly after Joey was born but wasn't able to get time to finish it until today!



The morning of the 8th I had an apt with the high risk OB.  They did an ultra sound; the baby was measuring 40w4d and 8.7 pounds.  The amniotic fluid was still cloudy which could be due to blood, baby poop or that his lungs were mature.   I agreed to an amino and the fluid that came out was clear w/ white speaks which meant his lungs were most likely mature.  The doctor was concerned at the baby's size and that there was evidence that the amniotic sack was starting to separate from the uterine wall.   Bottom line, I was having a baby ASAP, hopefully that day.  I was sent to my regular OB for my next appointment to discuss delivery. While there I started contracting.  They put my on the monitor and contacted the doctor on call to find out when they had time to fit me on the schedule for a c-section.  While waiting, I found out the amino came back that his lungs WERE mature:)

I headed over to the hospital and got there around noon.  They got me to the back right away and I expected it would be 4-6 hours before surgery...wrong...we were on the schedule for 2pm!   I called Joe and told him to hurry.

We didn't get in the OR till about 2:45 and at one point I asked Joe what time it was and he said 3:05pm.  I thought it would be cool if the baby would be born on 3/8/11 at 3:08pm!  He missed it by one minute!

Joseph Stephen Denslaw, III was born a 3:09pm at 3/8/11.  He weight 6 pounds 8 oz and was 19 1/2 inches long.  He was MUCH smaller than predicted.  His head was still on the bigger side (in the 99.8%) but it doesn't look out of proportion to the rest of his body.

Unfortunately he was born with EB and was more severe than Sami and Garrett were at birth.  He was immediately taken to the NICU and I didn't get to see him for about 3 hours.

But other than the EB, he was very healthy, which is good. 

The hospital has private NICU rooms which everyone agreed was best for him.  He started out eating well and continued so he was able to go home with me on Friday!  YIPPE!!!

 Everyone asks who do we think he looks like?  Here are pictures of the other 4 plus Joey at the end so you tell me:)

And for those wondering and who asked me during my pregnancy if I thought the Joey would have EB, no I really didn't think he would have EB.....


Sami


 Garrett



Summer

Grace




Joey





Saturday, April 23, 2011

ENT Visit

Thursday night was ROUGH to say the least....probably his worst night yet.  We maybe got 2-3 hours of sleep and not in a row:(  I thought maybe Soy formula would be better for his tummy.  Apparently his tummy didn't think so.    He was awake and crying the majority of the 30 hours after I started feeding it to him.  As soon as we went back to the lactose free, the crying stopped and sleeping started:)  

Anyways off to the ENT Friday for a follow up.  He thought his breathing was good:)  His nose is still a little swollen on the inside but he can still breath through it so that is a good thing.  The ENT also said his natal teeth in front are too loose and needed to go.   So he took a piece of gauze and pulled and out they came!  They are sooooooooo small; about the size of a grain of rice.  The gums did bleed some and he got a huge blister on his bottom lip but other than that, no other damage from the procedure.  The doctor said to leave the other tooth alone for now and wait and see what happens.  I think he has another tooth on his bottom gum starting to come through too.  We go back at the end of May for another follow up.  

We are so happy the tooth thing has been resolved.  Now if we can get his skin to stop breaking down, he'd be in really good shape.   He gets anywhere from 10-30 news blisters a day and has a lot of area of raw and missing skin:(  Just part of EB i know, I was just hoping he wouldn't get this severe this quick.  I do have pictures but Joe prefers I not share them with the world:(  


But I do have some other pictures I can share:)  



 
 all clean after a bath





 asleep at the Ester Egg Hunt



 my new cool bamboo Pj's from a very generous friend of mommy's:-)


 Grace sharing her Elmo

my sister's being funny (daddy didn't think it was very funny though)

Tuesday, April 19, 2011

a busy, busy 6 weeks old!

Joey is 6 weeks old today!!  YEA!!  




We have had a busy week and its ONLY Tuesday and we still have more places to go yet this week.


Monday- he had a well visit with the pediatrician.  With a diaper, bandages and a onesie he is 7 pounds 13oz!!!  Up from 7 pounds 2 weeks ago.  So he seems to be getting enough formula through the g-tube.   Apparently kids who are g-tube feed ONLY are slow to gain weight since we can't tell when its time to feed him more ounces per feeding and he can't tell us yet that he is still hungry.  She is also concerned about his natal teeth.  They are REALLY loose and she wants them out like yesterday, but because of his skin she doesn't want to be the one to remove them.   *sigh*  so on the way home I called the dentist to see if they deal with natal teeth.  They do (yea!) and had only one appointment for the month, today (Tuesday) YEA! 

So this morning we took Summer to school, came back here for a bit and then went to the dentist.  The dentist checked them and agreed they need to come out and Joey also has something along his top gum that I was worried was an infected blister or something, nope, its another tooth, a pointy (canine?) tooth coming out the side of his gum.  Nope that is NOT normal.  Its called a neonatal tooth and occurs in about 1 out of every 3,000 babies (yet another rare abnormality)  He will need x-rays to determine that type of tooth it is, if it has roots, etc... and it might need to be removed as well.  However, the dentist isn't sure about doing all this in the office since has EB and has a history of aspirating and thinks it would be better to be done in the hospital, but Joey would have to be intubated for the procedure.  I said i'd would to try it in the office first and if they doesn't work, then the hospital is fine.  The dentist was fine with that and wants them out soon, however (you saw that coming didn't you?) they don't have a 2 hour block available for the procedure till May 19!  WTH??  They want me to check with the ENT to see what he thinks and if he feels it needs to be done sooner, the dentist will reschedule other patients to fit Joey in sooner. 

So we go home and I call the ENT's office.  They said they'd have him call me back; we play phone tag for the afternoon and finally get a chance to talk with him. He said NO hospital, NO intubation and it needs to be done ASAP and when we will come to Joey's appointment on Friday he will look at the teeth and if he feels he can safe pull them himself, he will!  YEA!!  We finally have someone WILLING to do what needs to be done!

Also this afternoon he had his in-home evaluation for his feeding therapy.   All she did was take down his info, ask a bunch of questions and explain to be about their services.  We will go to the main center in the next week or two for developmental evaluation and HOPEFULLY get therapy set up.  But he has a follow up swallow study next week so we will hopefully find out then if he really needs therapy or if the issue resolved itself.



That is it for now!  Here are a couple of more pictures:


Saturday, April 16, 2011

Still here

We are still here...I haven't had as much time to blog as I had hoped I would.  Joey is doing about the same.  He has had some infected blisters but nothing a bleach bath and OTC antibiotic ointment couldn't take care of.  His hands still continue to be an issue; the super expensive formula we tried gave him liquid poo and thus a diaper rash/blistered bottom so we are back to the original stuff.    Some nights he sleeps great, other nights he is up most of the night:(

Next week will be a busy week for us.  All our extend family has gone home and we are on our own now.  Joey does NOT LIKE being in his car seat so taking Summer to school, picking her up and then getting Sami after school is going to be fun.  Hopefully he starts to like the car seat soon.  We are also very busy week next week!  On Sunday Summer has another birthday party for a friend from school; Monday Joey has a well visit at the pediatrician; Tuesday he has his feeding therapy evaluation from the Early Steps Program and Sami has a girl scout meeting Tuesday night and Friday Summer is off for Good Friday and Joey has an appointment with the ENT!  And the following week is even busier if that is even possible! 

I want to thank everyone for reading my posts, for praying for us and to Laurie for doing the fundraiser for Joey, for other friends who sent us Aquaphor, silky gloves and a PJ outfit made of Bamboo- you know who you are:)  And you are the best:)

Here are some pictures for you!

 Summer,  Joey and Grace watching cartoons before school


 I look like Sami (and mommy)


 SUPER BABY!!


 quality time with Scooby


Tuesday, April 12, 2011

5 weeks old

Joey is already 5 weeks old today!    Time has gone by so fast!  We are still here taking it day by day.  Joey is still very colicky at times:(  Screaming for hours on end.  Mostly during the middle of the night which makes sleep for us difficult.  A 2 or 3 hour stretch of sleep is a treat around here.  His hands have also been bothering him.  We hadn't been wrapping them since they haven't been too bad but then they either get too dry and crack and bleed even when we apply Aquaphor or lotion.  We have tired gloves and the ones that allow the skin to breath, he pulls off within minutes.  We have other silky ones that are really soft and have a way to secure them to his wrists (gently) don't allow the skin to breath nor do they offer much protection.  Last night we wrapped his hands with what we use on the rest of his body and they were really well protected and he slept so much better!  He wasn't hurting himself when his hands rubbed against his face like they did before.  But this morning his hands were really stinky from being wrapped up in a moist environment.  So I unwrapped them and its now 3pm and he is JUST taking this first quality nap of the day:(  Before he kept hitting his face with his hands or hitting things around him (or me).  Hopefully we can come up with a better solution tonight. If anyone has any suggestion, I am all ears:)

Everything else is going ok.  Trying to get into a routine during the day.  I go back to work in 3 weeks and i'd like that transition to go smoothly if possible.  Right now our biggest worry is dressing changes.  We currently do them after Joe get's home from work, except when i go back to work I normally leave right when he gets home.  It will be just two night a week but Joey required daily dressing changes otherwise his wounds become infected.  And its just too hard to do alone at this point.  It wasn't until Sami was 4-5 months old I was able to change her dressings by myself during the day but that was without other kids to care for.  If anyone wants to help out sometime with dressing changes please let me know:)  Or if anyone wants to share on how they manage that when both parents work outside the home, we are open to suggestions.    Me NOT going back to work is NOT an option and getting a home health care nurse isn't an option right now either.


 The girls are adjusting well to having a new baby in the house.  His EB doesn't bother them as much as does the "normal" baby stuff...i.e. crying and changing A LOT of diapers. 


My lupus related arthritis is flaring up again....the lack of sleep isn't helping either.  Right now I am still physically able to move and care for the kids, but I worry about the day that I might not be able too.   



Here are some pictures from the past weekend

can no long be refer to as 'the girls'




A Butterfly, Hello kitty and  a Ninja Turtle



Friday, April 8, 2011

1 month old!

Remind me NEVER to mention have a good night in the sleeping department again...apparently I jinxed us.

The apt with the surgeon went fine (other than the 45 minute wait to see him).  We go back in 1 month to learn how to change the g-tube button:) 

Big kids are having a sleep over with grandma and grandpa tonight so its just the little guy and us. 

He are some pictures from tonight:


                                1 month old today:)


Kissy-Kissy:-)

Thursday, April 7, 2011

Super Quick

Super quick highlight of our day:

Joey slept better last night!  YEA!  He was up every 2 hrs but went back to sleep after we feed him.  

The pesudomonas on his arm pits looks A LOT better today!  YEA!!!

But it apparently decided to move to his g-tube site:(  BOO!!!  We have an appointment with the g-tube surgeon tomorrow so we'll see what he says.  

I was able to get a long shower today and get out of the house ALL BY MY SELF:)  Yea me!!

Summer got peed on by her little brother!  She was NOT amused.

Oh, one last thing, there are just a few more days left of the Avon Fundraiser our friend Laurie is doing for Joey:)  Head on over and check it out! 

Wednesday, April 6, 2011

Invasion of the neon monster:(

This post was originally titled "4 weeks old"  YEA!!!  Then it was "The Mummy" and now its the neon monster as we are sad to report that Joey has pseudomonas growing on some of his wounds:(  We are starting with vinegar bath and topical antibiotics first....no fever (yea!) and its just on his arm pits and since the vinegar bath and new bandages this morning, tonight when we changed all of his bandages those spots looked better:)  So hopefully we caught it early.  (that was one of the infections that contributed to Garrett's death).

We took him back off the oxygen just to see how he does without it and has been maintaining O2 stats around 98 while awake (and calm) and 94-93 when asleep or screaming.  So we'll see how tonight goes.

Sunday night (SUPER early Monday morning) after screaming for hours on end I was beginning to wonder if the 24cal formula he is on was the reason he screamed so much, so we went back down to regular 20cal to see if we noticed a change and Monday night went MUCH better.  Then...we got to Tuesday night and that was the worst night yet, even worse than the last night in the hospital.  He slept from 10-12 and then was up on and off every 10 minutes from midnight till 8am:(  We could not figure out what the problem was till this morning and saw the infection on his arm pits. Hopefully tonight is better.

Other areas:  

Feedings: feedings using the feeding pump seem to really bother him so we are going to do all feeds via gravity.  So far he seems to tolerate them better.   It's not as bad as it sounds as the continuous feeds overnight weren't working for him either and he'd still wake up ever 2-3 hours so now we just feed him every 2-3 hours.  We switched formulas yet again back to the really expensive (and smelly) stuff.  The doctor hopes that will help with the colic-like symptoms.  

Skin: getting worse:(  we had to wrap him from the neck for the first time in his short life (hence "the mummy" reference above.)  His back is still ok, but he has a lot of breakdown on his chest and it was getting harder to keep the pads in place and clothes wasn't working so we wrapped his whole torso tonight hoping that will help.  

Visit to the pediatrician:  that was yesterday.  He weight about 7 pounds.  It's hard to get an accurate weight w/o taking off his clothes, diaper and bandages and we aren't doing that in the doctors office so we just weight him as is.  She wasn't real happy with this weight and doesn't get that EB kids tend to gain slower then healthy kids.  She is also a little unsure about all his "issue" and it really pushing us to rely on his specialists for this care and not her....*sigh*.  I know I should find a new doctor but we JUST found her last summer after a long search for a new doctor for Sami.  I really don't want to start over again.

I think there was more I wanted to write about but i can't remember anymore so I guess that means its time for bed! 


 in my new g-tube friendly outfit:)




one of my sister's took this picture

Sunday, April 3, 2011

Not sure we can do this anymore.......

Last night was a very long night.  Joey was from screaming from 3am-7am, pretty much non- stop.  He no longer has a voice because of it and has started retracting again when he breaths.  We put him back on the oxygen and did more breathing treatments.   He gets so upset when we feed him; I am not sure if its because of the g-tube or is because he can't suck out of a bottle.  They told us we could dip his pacifier in formula and have him suck on it when he being feed but he stated sounding like he did when we first got to the hospital so we stopped.  He just doesn't seem to know when to swallow.  We are so worried we are going to end up back in the hospital again very soon.  Pain meds don't seem to help, so we think he is just really colicky and not in as much pain as others seem to think he is in.  He is on reflux meds, and we have tried gas drops but nothing seems to make a difference.  He is back on lactose free formula and we have tried the partially broken down formula (the really expensive stuff) and did not notice a difference.  So I am not sure its the formula that is causing all this either.

Tomorrow starts a busy week for us.  I have 6-8 doctor appointments to make btw him and myself; medical bills to call about (I seriously think the hospital thinks most Americans have thousand of dollars just laying around to use for medical bills!?! )  They expected us to pay Joey's hospital bill (our portion of it) BEFORE he was discharged.  Seriously, who has that kind of money laying around?  Thank goodness for payment plans:)

Joe's mom went back home today and while my dad is in town, they are not staying at the house, so while it will be good to still have help, not quite the same as an extra pair of hands at a moments notice.  But they are helping get the girls to school and home since I don't want to take Joey anywhere (besides the dr) just yet, even if its just in the car for a short ride.  

I hope tonight goes better than last night...we both need sleep so badly...Joe has to work tomorrow and I can't function to take care of the girls w/o sleep either.  

Sorry that this post is so sad and about negative things...I am trying so hard to stay positive....but some days its so damn hard....

Saturday, April 2, 2011

We are home

We were released on Thursday afternoon:)  WOO HOO!!!

Once we got home we had to deal with the medical supply company for his oxygen supplies and his g-tube pump/supplies.  And then had to change his bandages so I didn't get time to blog Thursday night.  Friday was a doctor appointment for me, getting some groceries at the store, dealing with crabby children and getting Sami ready for camping this weekend with her girl scout troop.  And by the end of the day I was too tired to blog that night either.

Today was spent running errands, doing laundry and bandages again.  Joey is doing pretty good.  G-tube feedings are going better.  He is sleeping a little better at night, though last night he was up from 4am-6:30am.  His skin is breaking down a lot more though:(  

Here is a picture of Summer finally holding Joey:









Here is the little man himself.... 25 days old already!




We took him off the oxygen today to see how he would do and he is maintaining his O2 levels very well!!!  YIPPIE!  Less cords to untangle.  He is still on the monitor to make sure his levels stay in normal range but we can deal with that.  Other than that not much new here.  Sami comes back from camp in the morning, my dad is here for two weeks for a visit, and the girls go back to school on Monday so life will start to go back to normal then....