09/25/08

September 25  Helen is doing great.  She is eating better and better everyday, and really doing well drinking her liquids by mouth.  Hopefully she won't need her feeding tube much longer.  Her vocabulary is expanding weekly, it is very neat to see that.  She doesn't have overnight nursing anymore, and she is sleeping throughout the night with her two sisters without any problems.  Mallory wakes us up in the middle of the night more then any of the other kids do.  We are so proud of her, and still can't believe how far she has come.

August 29  Although Helen isn't taking steps on her own anymore, she has decided that she will begin to stand on her own.  She certainly likes to do things in her own time and in her own way!!

July 31  Helen took her first unassisted steps today!!  She took about 3-4 steps all by herself!!  Way to go, kiddo!!  She continues to eat like a champ, sticks everything in her mouth and swallows!  She has so much fun!

July 12  Helen continues to do wonderfully.  She is off all of her equipment ... no more oxygen, no more loud humidifiers and oxygen concentrators!!  She is simply one of the kids.  She plays with them all day every day.  She sits and works on her feeding skills with the kids at every meal.  She is simply a rock star!!  

July 4  Happy Independence Day.... Today, Helen got her trach removed!!!  She is breathing all on her own and doing GREAT!! 

January 24  Hooray... Helen came home today and she is doing GREAT!!!!

January 18  Helen is still in the hospital and has taken a few steps backwards!!  When she gets tangled up with RSV, her recovery time is usually 1-2 weeks longer than the other kiddos!!  She has needed some additional oxygen the these past few days, and it has helped .  She is just still trying to get over this nasty bug!

January 12 Helen was admitted to the hospital today with RSV!! 

December 26  Helen came home from the hospital today...yeah!  She is doing fantastic.  Nothing is phasing this little girl.

December 22  Helen is progressing better than anyone thought she would--her doctors are quite surprised!  She has been moved out of the ICU and is now on a regular floor.  She is also off of the ventilator and just back on her normal humidified oxygen.  She is full of smiles and looks great.  She is back to her normal feedings and has no restrictions.  Her anticipated discharge date to home is the 26th of December.  We'll keep you posted.

December 20 Helen's surgery came off without a hitch and she is resting peacefully in the pediatric ICU.  She was in the operating room about 4 hours and things went very smoothly.  She should be in hospital for at least a week... the homecoming depends on how she progressing.  Thanks for all of your thoughts and prayers. 

December 19  Surgery is a go for tomorrow.....we'll keep you posted!

December 17 Helen is amazing!!  She has a mouth full of teeth that are trying to come in--9 have actually made it!  She is starting to take small amounts of baby food by mouth and is really enjoying the tastes that she is experiencing....bananas are her favorite so far! She loves being in her exersaucer and on the floor playing and rolling all around.  She melts your heart with her smile and you can see this incredible laughter in her eyes.  She is doing really well with her trach and is due for surgery on December 20th to start the reconstruction of her airway.  We are really excited and nervous.. please keep her in your prayers.  

November 2  Helen is growing and learning new things every day.  She has started both physical and occupational therapy and is excelling at both.  She is beginning to get up on hands and knees and doing the "rocking" motion, she is also getting stronger while sitting up.  She makes noise past her trach and is now trying to do some babbling.  She is once again teething and will hopefully have more teeth soon--I guess she thinks she needs more than the 4 that she already has!!

September 24  Helen has 4 teeth...she just got her top 2!   Way to go, dolly

September 18  Helen is fabulous!!  She has been making the greatest strides.  She has learned how to force air past her trach to make sound..she has found her voice and loves to hear it...as do her daddy and myself!!  She has learned how to roll over, both ways and is always going back and forth.  The kid doesn't stay put anymore.  She is growing so much.  We have started her on some jar feedings--she enjoys eating some peas and isn't quite certain whether she likes green beans or not!  The  feedings are going slow, but the progress is huge!!  She is tipping the scales around 17lbs.  She is our baby.....

July 27 Helen is great!  She is weighing in at 13lbs 8oz!  Her body is full of rolls--we love her chunky legs.  We have learned that her trach will most likely be coming out in the spring of 2008.  The surgery to rebuild her airway will begin in October with a cartilage graft and then another on in December.  She is well on her way ..we're so proud of her!  She is able to begin some oral feedings again--I'm just waiting for the "right " time to do this.  We will try some bottle feeds and also some baby cereals and fruit.  I know that she'll do great!  She is always full of smiles and silent laughter.  

June 26 Helen's surgery was very successful!!  She no longer has her ng tube..she pulled it out herself as we went into pre-surgery.  Her button, as it's called, is great and small.  We're looking forward to learning how to feed her!  She is also rolling from side to side from her back.  She always has new tricks up her sleeve.  She has gained some weight since the 19th--she is currently 12lbs 9oz!!  She's slowly putting on the weight she needs.  Way to go Helen!

June 25 Helen is doing great!!  She is scheduled to have a feeding tube inserted into her stomach this Wednesday, the 27th.  With the feeding tube in place, her ng tube (feeding tube in her nose) will be removed.  This is a good step forward!!  It will be so nice to see her face with noting attached to it!!  She is starting to move about in her crib--twisting and turning into different positions.  She is full of smiles and her eyes laugh for her (since we can't hear her voice) when she is tickled.  She is growing so much and weighs about 12lbs 5oz!! 

June 1  Helen saw her eye doctor today, and she has been released!  Her eyes have matured to where they should be.  We are so very happy.

May 29 Helen is an absolute joy!  She has a smile that will melt your heart and very expressive, innocent eyes.  She is doing great.  She is eating about 75mls every three to four hours.  She loves to watch the mobile and is beginning to grab at the toys.  She loves music and being talked to.  She likes to play with her siblings and enjoys her one on one personal care.  All of her nurses have become like family and take great care of her.     

April 8  Welcome home Helen...Happy Easter!!  Helen joined her siblings today and it is quite a joy to have her home.  She is always full of smiles and lights up when she is spoken to and engaged in eye contact and happy faces.  She enjoys playing with her brothers and sisters on the floor and likes to watch and listen to all of the musical toys in the house.  Her current weight is 10lbs 9oz and she is eating 3oz every 4 hours.  She does great with her trach and has little if any problems with it.  Keep watching for more current and new home pictures of the kids.

April 4  Helen came hone today!!  She was home for about 5 hours and we took her back to the hospital.  She was fine, but David and I found out that we weren't able to give Helen the 24 hour care she needs while also tending to the others!!  We needed to get out nursing help in place and when that happens, she will be home....

March 31 Helen if amazing!  She has given up her ng tube for feeding and is now taking all if her feedings by mouth.  She eats 3oz every 4 hours and her formula is the consistency of syrup.  She is going to be joining us here at home very shortly...keep checking to see when it happens.... 

March 28  Helen is doing GREAT!  She is taking 95% of her feeding by mouth.  David and I are learning more about how to care for her trach and are becoming more comfortable with it!  Although she is our smallest, she is catching up to her brothers and sisters.  She weighs 10lbs 4oz. and unfortunately, we do not have a current length.  

March 22  Helen has had a busy month!  She was moved to another facility and is thriving in her new environment.  She was flirting with possibility of needing a feeding tube in her belly (because she was aspirating her food into her lungs), but that has been put on hold for now.  She is able to eat about 3oz three times a day from a bottle and is doing a great job.  David got to feed her for the first time (neither one of us had gotten to feed her yet) along with bathing her and doing her trach care.  He absolutely loved it.  What a great bonding time the two of them had.  She is weighing in at 9lbs 15oz.  She smiles and is quite active.  It still breaks my  heart to know that she is unable to make sound--that we cannot hear her voice!!  I suppose that we will in time.     

February 17 Helen's infection is gone, but she has decided to stop or limit her intake from her bottle.  She is getting the majority of her feeding through her ng tube.  The therapists are looking into the reasoning's for this newest onset of problems.  She continues to gain weight and is doing well in all other aspects.  We still don't know when she will be coming home, but look forward to this joyous day. 

February 8  Helen is still hanging in there!!  We found out today, that she has an intestinal infection and is on IV antibiotics every 8 hours.  Other than that, she is doing good.  She is still eating 30-40ml via the bottle and the other 30ml through her ng tube.      

February 3  Helen is doing great!!  She has stared to bottle feed and Kate has gotten to feed her for the first time.  She is taking around 30ml (one ounce) by bottle and the other 40ml through her ng tube.  Kate has gotten to learn a lot about her her trach care.  Kate has gotten to suction and change the trach.  Just one of the many jobs a mom is lucky enough to get to do!!  The things we do out of the love for our children!!  She seems to be relatively laid back and easy going.  She is weighing in at 8lbs 3oz.  We still don't know when she will be joining us at home, but we wait to hear!!    

January 19  Helen continues to do well.  She is off of the ventilator and is breathing room air.  Her trach looks good and she does well with it.  We are awaiting word on her transfer back to St. Lukes.   

January 16 Helen is still doing great.  She might be going back to St Luke's Hospital by the end of the week.

January 13  Helen is recovering well.  Her oxygen needs have gone down a lot, which is very good.  With her tracheotomy she doesn't have anything but a feeding tube on her face, and we are able to see her face really well.  She really is a beautiful little girl!!  The doctors say that she will need to have the tracheotomy for about a year, then they can can go in and repair the airway.  We will be trained on the the care for her airway in the coming weeks.

January 11  Helen had her bronchoscope and ended up having a tracheotomy--which is to say that they needed to create an airway for her!  She is doing well and should be back with her siblings next week.  She is getting closer to starting bottle feedings and also creeping up to the 7lb mark!! 

January 8  Helen is schedule to be transferred to another hospital tonight. The scope of her airway is scheduled for tomorrow afternoon.  She weighs in at 6lb 13oz.

January 7.  Helen is at 6lb 12oz now.  She has been having a roller coaster of a time the past week and a half, and her breathing is an issue again.  She was on c-pap, then cannula, and now back on c-pap.  The doctors are concerned, and have scheduled a scope of her airway to check it out.  She will have to be moved most likely to another hospital for this sometime this week.  Please keep her and everyone else in your prayers.

December 28  Helen's breathing is better today.  She now has her biggest issues when she becomes very agitated and angry.  She is eating 50ml every 3 hours and is weighing in at 5lbs 10oz.  She is so peaceful and beautiful.  Her eyes will melt your heart.   

December 27  Helen's breathing is becoming a much bigger issue for her.  She is having to work much harder than before.  She has been taken off of the nasal cannula and is on the c-pap all of the time now.  She is quite fragile at this point and we are hopeful that she can get through this without having to be put back on the ventilator.  Please say some extra prayers for her.     

December 26 Helen is still on c-pap and doing well.  She is getting 1 hour of nasal cannula per day--it's easier for mommy and daddy to hold me with this on!!  She really enjoys her pacifier and looking in the mirror or other things the nurses put in front of her.   She is beginning to be animated and looks at you with those loving brown eyes.  She is eating 50ml every 3 hours. 

December 8 Helen has has a momentous week and half!!  She gave up her vent and alternates 3 hours of c-pap with 9 hours of nasal cannula per shift!!!  She  is moving up and doing great!!  All of her hard work has increased her appetite -- she eats 40ml every 3 hours.  She hopefully will be getting some bottles soon.  She is loving her pacifier and seems to be our laid back kiddo, nothing much bothers her.  Her weight has also increased with her hard work, she is 4lbs 14oz.     

November 27  Helen is still on her vent, but is tolerating being weaned down on her oxygen needs!!  She is taking small steps and succeeding well.  She is 4lbs  10oz and eating32ml every 3 hours.  She is growing and healthy!  

November 16  Helen is beginning to tolerate being held--she lasts for about 20-25 minutes.  She loves to have natural light on her and enjoys being talked to--it calms her down when she gets agitated.  She is enjoying her feedings of 20ml every 3 hours and weighs in @ 4lbs 2oz.  She is still hanging on to her vent!! 

November 7 Helen is doing well.  I'm trying to convince her to to give up her ventilator, but she likes to have it.  She'll give it up in her own time.  She's the kid who'll take her time doing things and not be forced!!  She has begun feedings again of 3ml every 6 hours and weighs 3lbs 6oz

October 28 2006  Helen is recovering well from her PDA surgery.  She has been back and forth from being on a ventilator to CPAP/BIPAP.  She is doing better now on the ventilator, so that is where the doctors are keeping her.  She is currently not on any milk do to her not digesting her food very well.  Her weight today is 2lb 13 oz.  David got to help take her temperature, weigh her, and change her diaper.

October 24 2006 Helen had her surgery today to close her PDA.  We got to the hospital around 7AM for the procedure.  The prep time took longer than the procedure.  They started about 8:30, and was done in about 30 minutes.  Everything thing went very well.  She was pretty restless throughout the day, but she is doing fine.  We don't have a weight for her today because the staff wanted to leave her alone as much as possible so she could heal.

Helen at 1 day	Helen at 6 days	Helen at 8 days	Helen being baptized	Helen (11/08/06)
Helen (11/10/06)	Helen (11/21/06)	Helen (12/07/06)	Helen (12/07/06)	Helen (12/07/06)