Sunday, April 26, 2009

reality


Time has passed. Janneke has now been home for 10 sleeps. Mind you, not all of us have had 10 sleeps since her homecoming! The days are a bit of a blur with Rachel being fed 4 x and Janneke 7x; some of their feeds overlap, and some are back-to-back. Rachel is quite accepting of her baby sister now, and she follows Janneke with her head and eyes whenever possible. When we lay Janneke in front of Rachel, Rachel leans forward and puts her hands on Janneke. (We trust this is a loving touch and not an attempt at a choke-hold.) So, Rachel has adjusted.

The rest of us? Well, Emily and Sophia are thankful that we are not traveling as much to Mac. They have declined offers of sleepovers and playdates because they simply want to be home with all of us. Often, one of them will draw attention to the fact that the whole family is in one room -which is exciting to them.

Ralph and I are finding our way through each day, anxious to make a "new normal" for our family. We are meeting this week with our community case manager to revisit the nursing hours and care plan for both Rachel and Janneke. We are thankful for the nursing care, and we want to piece together a care plan including nurses, volunteers, and our personal support workers that best fits our family, particularly the needs of Rachel and Janneke.

The truth? We wrestle with the idea that we cannot raise/care for our children on our own. Certainly, there is the phrase "It takes a village to raise a child," but the reality has hit us... we cannot adequately provide for all four girls without additional help. We cannot take a family holiday without the accompaniment of a personal support worker or another family that can help with the tube-feeding. I suppose this is accepted reality for some, but we are still in the early stages of acceptance. And yes, time will change our situation.

We also wrestle with how to respond to everyone. The blog was created to provide updates, especially in those first few weeks after birth. Now that time has passed, and we are home more, we miss the phonecalls. Many of you don't want to bother us, but we are not bothered by calls. We can't always pick up when you call (the phone might be misplaced in the fridge or under the couch), but we appreciate the voice contact.

We have received so many offers of help, but we are at a loss as to how to respond just yet. We hope the offers of help still stand a couple of years from now. I guess what I am saying is we hope you don't forget. We have no idea what the needs for Rachel will be a few years from now, nor do we know Janneke's future. Yes, Janneke will have some physical hurdles to overcome, including the feeding, but we are not certain of the hurdles for her developmentally. With both girls, we never want to expect too little... they still have so much to teach us.

postscript: This is not to suggest that everyone should be phoning us tomorrow- or that we have not appreciated the letters, cards, and emails received over the last few weeks! We simply want to let you know we are thankful for the support, and we love hearing from you.

8 comments:

Roslyn Dahl said...

Hello!

I found your blog and wondered if you had heard of the Oley Foundation yet.

We offer free information and peer support for families like yours with a member on home tube or IV feeding. Check out our website at www.oley.org.

In particular you might be interested in the

• Tube Feeding Tips page
http://www.oley.org/tubetalks.html

• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm

• Oley's annual conference -- where you can learn a lot about tube and IV feeding and meet other families facing similar challenges. Preliminary details are posted now, but keep checking for updates at http://www.oley.org/2009_Annual_Conference.html
There are travel scholarships for first time attendees.

• Travel Information
http://www.oley.org/traveltips.html

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY

superstarmom said...

What a bunch of good looking girls ;) Good luck in the dating years Ralph :)

Anonymous said...

And we love it when you write. Thanks for being so honest with us. I know how hard and yet good it is to write to 'cyberspace', knowing the people who read genuinely care. You are letting us into your private life- but God continually reminds us we are a community of believers and we are that community for you.
mike and marce meinema

Rhea said...

We continue to pray for your family. I know that it is hard to balance life - dividing your time between your kids. Remember that they know that you love them. Your older girls will be the most amazing, understanding and helpful kids ever. If you ever need to chat please call me - I left my number on a previous comment.

Anonymous said...

I'm with the girls. It's exciting you're all in one room!
~Elly

Jennifer29 said...

I have a 2 1/2 yr old baby girl Jayden..she was born in Sept. of 2006, since she was 2 weeks old she has had a feeding tube, dr.'s knew something wasnt' right...Jayden's ears were lower than that of a normal child, she had low tone, failure to thrive (EAT), was Oxygen dependent on .25 liters, she had club feet also..After a broncoscopy (ENT looked down her airway & into her lungs)..they determined she had a floppy airway, a swallow study was done and she was a silent aspirator..Jayden had a G-tube at 2 weeks old...she started with breathe holding spells, her arms & legs would get stiff and she would turn purple & blue then pass out..dr's had no clue why these things were happening...Nueroloy, Genetic and everyone I think they had was trying to figure out what was going on...After a prelimiary result of Genetics we were told nothing was found, the next day we were told different..I was taken to a private room and told my baby had a 17 chromosone duplication called Potocki Lupski Syndrome..My 1st resonse, HOW DO WE FIX IT? dr.'s relied WE CAN"T..this is who she is..I cried and cried...Jayden came home when she was 5 1/2 weeks old with Oxyden, Feeding tube & Pulse Ox..she has had EEG (normal), EKG (normal), sleep studies (abnormal, til Aug. of 2008), swallow studies & Eye Surgery in Aug. of 08..She has been eating for over a year now, she pulls to stand, doesn't walk or crawl yet, these kids are developementaly delayed, She is not been on Oxygen all winter and Pulmanary issues a Disconnect order for Oxygen and pulse ox, I have been without for a week now, its scary but, I am so proud of her...keep your head up & give these precious babies your love...Jennifer

Williams Family Blog said...

What a precious picture. Sara, please keep the posts coming, we love being able to stay up to date with your family across the miles.

Love
Karen and the Williams clan.

mel said...

i chuckle when i read your comment about all of you being in one room. we sometimes find ourselves (all 6 of us) in one room as well: our bathroom!!! then mom needs to open the window before oxygen deprivation sets in...