Monday, March 30, 2009

it's about grace

Janneke's name means grace of God. The idea of grace, whether you Believe or not, is about being embraced and loved in spite of or even because of our weaknesses. Here's a thought from Henri Nouwen worth sharing: It is indeed through our broken, vulnerable, mortal ways of being that the healing power of the eternal God becomes visible to us.

And His power has become visible to us once again through the little life of Janneke - and everyone sharing with us, supporting us. No one is perfectly formed or perfectly behaved, yet God's grace is extended to us and covers us with Love. And so, we in turn, share this gift of grace with each other, loving and helping each other (even when we don't deserve it).

Janneke continues to grow and thrive in the Mac NICU. She is cared for by great nurses, docs, and OTs (occupational therapists). Last night, her PICC line was removed. She no longer needs IV/bloodwork access at this time; we will discuss in the future the idea of a porthacath should she need it. (Big sister Rachel is scheduled to get one this year.) The main goal this week is to help her feed by bottle. This is going really slow, but we remain hopeful that she will learn. As for other challenges or concerns, only time will tell. Rachel's growth and development over the last three years was not predictable - neither is Janneke's future.

Thanks again for all your warm fuzzies and prayers.

Saturday, March 28, 2009

Thursday, March 26, 2009

Mac Kid #2

Last night at this time Janneke was transferred to the NICU ward of McMaster University Medical Centre in Hamilton. This was a welcome relief as they car trips to and from downtown Toronto were becoming more than a little tiresome. Janneke is quite stable right now and it seemed best for everyone involved to transfer her closer to home. McMaster is about half the distance and we rarely will have to deal with any daily traffic issues.

Sara and I met with a variety of people concerning Janneke today at McMaster. Her attending physician is the same doctor who was on duty when Rachel was born at McMaster nearly three years ago. In fact, Janneke is in the same room that Rachel called home for six weeks in 2006.

We have two hopes for Janneke's stay at McMaster. The first is that there will be success in orally feeding Janneke. This is our biggest concern at this point and only time will tell if this will be successful. The second is for all of the specialists who follow Rachel's care at McMaster to meet Janneke. We hope we can streamline any future visits to McMaster as much as possible.

Your continued prayers are felt and appreciated.

Tuesday, March 24, 2009

another day...

Sometimes it is hard to know what to post. We are into our second week with Janneke's hospital stay, and yet we feel ages away from the time before her birth. We wrestle with our emotions - sadness, fear, joy... Our journey that began with Rachel almost three years ago seems to be repeating itself.

We have received a lot of emails, comments, and phonecalls in the last 10 days. We are so thankful for your prayers and support; it is amazing and overwhelming to be carried by saints from all over this globe. Some of you are new friends, and so we wanted to include a bit of background in this post regarding our family's story.

We have four daughters - Emily (7), Sophia (5), Rachel (almost 3) and Janneke... Our family's story took a surprising turn three years ago when doctors told us that Rachel would be born with a number of concerns. These concerns became hurdles for Rachel after birth- breathing, eating, and her growth and development. Today, Rachel is almost three. She is a joy to our family with her contagious smile, but she has limited mobility and is tube-fed (nothing by mouth). This year, she will be getting a portacath (to help with bloodwork and IV access when she needs it) and several other investigative tests. She has wonderful nurses who care for her in our home, and we are blessed with wonderful people who have been trained to care for her outside the nurses' shifts. Rachel's needs are attended to by staff at McMaster Children's Hospital and the Niagara Peninsula Children's Centre. Because she is unique, she also followed by genetics at Sick Kids in Toronto. We had been told previously that her special needs and concerns do not seem genetically inherited, but Janneke's similarities are now bringing that statement into question.

Now we have Janneke in our family - and we love her too. She is not sucking and swallowing very well, so we are feeling sad about this. She will be followed closely by an occupational therapist and ENT (ear, nose, throat) this week to determine the cause for her inability. Her brain activity will also be examined with an MRI to further understand her disposition. She is a quiet little girl, and this is has the docs a bit concerned. It seems that some of her tests indicate "normalness" and other tests show concerns. We are trying to lay all of this in the hands of the Lord, surrendering our daughter to His care.... not hanging on the words of each doctor that visits. We are so thankful for the intelligence and science that can help Janneke, but we know that ultimately the future is in His hands. It is HARD to trust, but we are trying.

Some of you have asked how to help.... We will rely on your prayers and support for a long time. This is not a short story... This is a lifetime of faith, hope, and trust. Lamentations 3:19-23

Sunday, March 22, 2009

Another good day

Yesterday Sara took a rest from the hospital and I visited Janneke with our oldest daughter, Emily. Janneke is doing quite well. She is breathing very well on her own and we hope to begin some oral feeds this week. We will also talk to the doctors this week and get the results from all of the different tests and observations that she had last week. Thanks again for all the prayers offered for our family.

Friday, March 20, 2009

A good day

Janneke had quite a day. When we arrived at the hospital today, we were surprised that she had an IV in her left hand. Earlier this week, she had a PICC line put in because it was so difficult to get an IV line in the conventional way. Today the PICC line was not working properly when they needed to draw some blood for a test. So shortly after we arrived she was whisked away to get her line cleaned out, as they thought there may have been some clotting in it. This was not a good way to start our visit.

The procedure went very well, however, and she was back in the room in no time. She had a few other specialists drop in on her in the afternoon, and we will talk to her doctor at a later date to hear the results.

Our prayer for her has been that she will be able to breathe on her own again and that she will be able to eat on her own without difficulty. Today, it seemed that the first prayer has been answered. She was taken off the CPAP around 2 pm. At first her breathing pattern was quite irregular, but she seemed to be managing. After a 1/2 hour her breathing pattern stabilized, and Sara was able to hold her for the next two hours. She did wonderfully. Her oxygen saturation levels remained high and she even treated her parents to opening her eyes and cooing.

Our prayer is that she will continue to breathe on her own, and that we will be able to start oral feeds over the next few days.

Thursday, March 19, 2009

Here's a photo of Janneke and mom (Sara). Wednesday was a stable and quiet day for Janneke (and for all of us!). Her eyes were tested and, although small and inset, structurally they are fine. This is great news. We realize that her eyes may take a long time to develop, but when there are no structural concerns, that is a relief. Because Janneke had some difficulty breathing on Monday night and early Tuesday morning, the docs decided to give her a day or two to rest before any more tests or consultations. (The hoses around her nose are part of the CPAP machine which supports Janneke's breathing, but thankfully, it is compressed air and not oxygen. This means she is getting breathing support, but she is still strong enough not to need full oxygen support.)

We are so thankful for the emails, phonecalls, and comments from you.
We truly feel supported and encouraged.

Tuesday, March 17, 2009

Janneke Grace

Greetings all. This blog has been created as a means to communicate with friends and family regarding our family. As many of you know, Janneke Grace was welcomed into the world on Saturday, March 14. Late Saturday night she was transferred to Sick Kids Hospital in Toronto where she is being well taken care of in the NICU ward.

Janneke is being heavily monitored in the hospital and is undergoing numerous tests this week. She is getting some assistance with her breathing at this point. She is being fed with an NG tube that gives her formula through a tube that enters through her nose. She also had a PICC line inserted that will allow any future IV lines or blood tests to be administered without poking her repeatedly. Like her older sister, it has proven to be next to impossible for the experts to find a vein.

Yesterday she had ultrasounds on her heart, abdomen, and brain and all seems quite normal and in order from that perspective. We also met with a team of geneticists yesterday. Three weeks ago we began a second round of genetic testing with Rachel, our 2 1/2 year old daughter at Sick Kids. We have yet to come to any reasonable conclusion regarding Rachel's diagnosis, but now that Janneke is exhibiting some similar characteristics there is a whole new level of interest regarding possible genetic links. We do not expect any answers quickly, but we do hope someone can connect the dots for us in the future.

In the short term, we covet your prayers for little Janneke's health. We hope that she will soon be able to breathe and eat under her own strength. An ENT (Ears, Nose, Throat) specialist will evaluate her soon and we hope and pray that all will be well. We also covet your prayers for our whole family as we were quite shocked by the turn of events over the last few days. We had anticipated things to go quite well as there were absolutely no indications that there was anything out of the ordinary. Tears have flowed as we embark down a road that we know all too well from our experiences with Rachel.

As you pray please give thanks for the following as well:
*for the excellent care that Janneke receives.
*that Sara is recovering incredibly well from a rather difficult childbirth.
*that Rachel's VON nursing hours have been tripled so that we do not have to worry about Rachel's care as we spend considerable time away from her in Toronto.
*that Rachel is very healthy and well right now - She's actually quite energetic and entertaining.

Pray also for our two oldest girls, as they ask questions like "When is Janneke coming home?" and state things like "I hope Janneke doesn't have as many special needs as Rachel does." And pray for their parents who don't have a clue what to say in response.

We will update this blog periodically as things progress.