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.

Tuesday, April 21, 2009

Friends?

Janneke has been home for a few days now. Our first move after Janneke's homecoming was to move her crib into Rachel's room. Rachel's room is the largest bedroom in the house and also has a small bathroom attached. As they will be sharing many of the same supplies we thought it best that they be roomies.

Rachel was a little cool to the idea at first, but she is coming around. We don't think that Rachel slept at all the first night, as Janneke's screams were a little unnerving. Now that we have ear plugs, Rachel seems to be getting all her beauty sleep.

It has been good to see Rachel's reactions regarding Janneke. There is clearly a unique response that Janneke is able to get out of Rachel when placed nearby. We're not sure if it is ecstatic joy, mortal fear, or pure jealous anger... but there's definitely a reaction. This could be the beginning of a beautiful friendship?

Thursday, April 16, 2009

Monday, April 13, 2009

I spy...

...a new g-tube. Janneke is doing well. She is not on full formula yet, but she is managing Pedialyte through her g-tube. We look forward to seeing improvement tomorrow, and maybe we can start the conversation about going home. For Janneke to come home, we need her to manage her feeds through the tube. The other issues and concerns will be dealt with later as an out-patient or through home care.

Today, we visited Janneke with Emily and Sophia. They have to take turns seeing her (with one of us) since only two people are permitted bedside. We were struck with how comfortable our older girls are in the NICU. Each baby in the NICU is hooked up to monitors, and when there is a risk with breathing, oxygen levels, IV pump problems etc., alarms go off to alert the staff. We both noticed how our girls don't flinch or even seem to notice the alarms.

Instead they are looking around the NICU with interest, especially when they play the game I Spy with their dad. They eagerly search the room with their eyes, looking for something blue, yellow, or beautiful (when their dad is spying one of his daughters).

Maybe that's how we have to deal with this situation. Rather than focus on the alarms which sometimes falsely indicate a problem, we need to look around us. Rather than focus on the things that seem difficult or overwhelming, we need to search for color, laughter, and beauty.

That takes energy. And we are emotionally tired. But tomorrow is another day, and His mercies and strength are new every morning (Lamentations 3:19-23).

Saturday, April 11, 2009

the g-tube


(This is a picture from ealier in the week when Janneke got to meet her Oma Pot).

Janneke now has a g-tube. We were prepared for the surgery to happen at some point this weekend, and she was wheeled in the OR at 4, Saturday afternoon. The ENT (ear, nose, throat) specialist examined the structure of her throat while she was sedated to form a baseline examination for further tests, and when ENT was finished, the surgeon quickly placed a g-tube in Janneke's stomach. Essentially, it is a small tube extending from her stomach. This tube, referred to as a PEG, will be in place for one year.

Lord willing, she will come out of sedation and intubation with little difficulty and pain. We pray that she will be able to handle formula on Sunday, fed for the first time through her new tube. When she has completely adjusted to being fed through the g-tube, we can prepare for the trip home!

We are overwhelmed with the idea of another tube-fed daughter, but we do have experience on our side this time. We have enjoyed Janneke these last few days; she has been more alert and content since we stopped the oral feeds.

We are reminded once again that God came to earth to save us from our brokenness, to extend His grace to us.
Happy Easter to all.

Friday, April 10, 2009

Saturday

Janneke is scheduled to have surgery tomorrow morning (Saturday) to insert her g-tube. If all goes well, and she recovers well from the surgery, we will be able to take her home in a few days. While she is sedated, she will also get her throat scoped to see if there is any structural abnormalities that are preventing her from swallowing safely. Pray that all will go well.

Tuesday, April 7, 2009

g-tube

Today was a difficult day.

We are no longer attempting to bottle feed at this time. After observing a swallow study of Janneke today (x-ray of her swallowing ability), we learned that her airway is not protected when she has a bottle. She is taking formula into her stomach, but also into her lungs. She is able to suck and swallow - but not safely. What was particularly unsettling was that her ability to protect her airway with coughing was delayed, if at all present. She is a "silent aspirator".

She is scheduled for a g-tube (tube on/in stomach) within the next two weeks, and, in the meantime, ENT will also look at the structure of her throat, etc. As she grows, we will have the occupational therapist and ENT follow her development. Perhaps in the future, we can try bottle feeding again, but she needs to be stronger and able to protect her airway.

So, another g-tube in the family.

One day at a time...

Monday, April 6, 2009

Romans 8:28

1 in 9 chance of winning. That’s what it says on my Tim Horton’s coffee cup. I could win a Toyota, a lap-top, or any number of cash, food, or beverage prizes. And 1 out of every 9 is a winner.

After 42 cups of coffee over the last three weeks, I finally won something. I won a coffee. According to the laws of probability, I should have won at least four times by now, but things don’t always work out according to the odds.

Last Friday, I received a phone call from someone from the genetics department at Sick Kids Hospital in Toronto. Some of the leading geneticists in the country work there, and they collectively have no firm explanation for Rachel and Janneke’s conditions -but they are still looking. They asked for my permission to share photographs and detailed descriptions of Rachel and Janneke with other geneticists from around North America at an upcoming conference. The hope is that others would have come across a similar case in their careers that could shed light on Janneke’s and Rachel’s situations.

I’m not sure what the probability is that Ralph and Sara would have two girls that would interest the country’s leading geneticists, but I’m guessing it would be more likely that I would win a Toyota with my next coffee. It all seems quite random.

In my heart, I know that there is no thing as “random chance”. Everything that happens, happens for a reason. Our all-knowing, all-powerful, eternal God works all things together for the good of those who love Him; who have been called according to His purpose. I know that the same God who knit Rachel and Janneke in the womb will weave the seemingly random events of our lives into something beautiful.

We have asked for prayer that Janneke will be able to drink on her own. The last number of days have shown us that she might learn this skill, but that it will likely take much longer than we first hoped. May our prayers also be that our minds will begin to accept what we know in our hearts. That we don’t know what the future holds, but we know Who holds the future.

Friday, April 3, 2009

cautiously optimistic

There have been some small improvements in Janneke's ability to take in formula via her mouth. At present she takes in most of her formula via a NG (nasogastric) tube. You can see it on one of the pictures below. She is fed every three hours. Before she feeds, if she is awake and alert enough, we or the nurses try to give her some formula by bottle. Some times she does quite well...other times she doesn't. We are cautiously optimistic that Janneke will figure it out, but we know that it will take time.

Early next week we will discuss with Janneke's attending physician and her occupational therapist regarding what the next steps will be. If things steadily improve we will likely set up a plan outlining when and how she could be brought home. If it does not go well, or if there seems to be other issues preventing her from learning to drink at this time, we will likely begin discussions regarding the insertion of a g-tube.

Thanks again for all of your prayers and encouragements. It is also good to hear from the Beacon students. It must have been indoor recess today.