Update on Wyatt's Bloodclot

Let's celebrate!

At the last meeting, the IWK heart specialist basically told me that he and the clot team at the IWK feel Wyatt's clot is probably scar tissue. It is still there, and it is approximately 5mm x 5mm. Huge for such a little heart. But if it is scar tissue, it shouldn't break and move. Probably? Shouldn't? As the specialist said, he doesn't have a crystal ball. But these people know their stuff so I will take it for what it is. Good news! And about flipping time too. YAY!!

The electrical workings of his heart is still another matter, but the specialist said the test he conducted was favorable. Len and I both need to have our hearts tested to see if it is more of a genetic thing. So basically, Wyatt is still on the list for the IWK heart clinics but he is not a serious case. Very blessed news!

Sorry for not posting sooner, by the way. I'm having serious issues with carpal tunnel syndrome and radiate pain. Unable to type for a long while. But Wyatt and I thank you, thank you, thank you for all the kind words and prayers.

Another Look At Baby Wyatt's Heart Blood Clot

I am so very nervous; tomorrow the IWK cardiologist is seeing Wyatt about the blood clot in his heart. My hopes? That it is gone! But I would settle for significantly smaller and looks like it is disappearing. Keep your fingers crossed and your prayers coming for my little man!

And look at what Wyatt can do now!

Crushing News in Oct. 2008 ... Blood Clot In Baby Wyatt's Heart Not Gone

You go to the appointment, hoping, praying that the specialist will say what you what him to say. You've given the needles, you went to all the appointments and stroked your baby's soft sweet smelling hair as he howled with discomfort while being poked, prodded and analyzed. You've agonized over each breastfeeding session, pushing his limits, praying he'll take more so he will grow, therefore making the clot smaller in relation to his heart. And you've prayed that his little body that's been through so much will have absorbed the clot and it is gone. So how do you feel when the specialist looks across the table at you with all the print outs, graphs and numbers in front of him, telling you that it is not gone. That it never changed in size. That there is an indication that the electricity of his heart is abnormal. And if left as is, he will die.

How do you feel?
Crushed.

I so wanted to hear this past, present and looming nightmare was gone. My hopes were high that October morning when Wyatt and I went up to the pediatric ward at the Dr. Everett Chalmers Hospital. We've been waiting for this day since we were discharged from the NICU. The chance to meet with the heart specialist from the IWK Hospital Halifax, Nova Scotia. We went through the usual weight and measurement checks. One week prior, Wyatt had an electrocardiogram (ECG, EKC) done. He had another done while waiting for the specialist.

The specialist had his own technician come Fredericton so that he could be sure the echo cardiogram or ECHO was done the way he normally has it done. Wyatt had had this test done in the NICU and he really does not enjoy it. This time I had a bottle of milk ready to use as a diversion tactic. The technician was a really nice lady who chatted with us, cooing over how big and handsome Wyatt was. Wyatt, being his usual self, flirted something fierce with her! LOL.

I distracted Wyatt with his bottle while she started placing the wires on him, trying to act as calm as I could for Wyatt's sake, but inside I was so nervous and excited. I was sure the clot was gone! It had to be. All those blood thinner needles I gave him had to have worked.

Finally, the sort of fuzzy image of Wyatt's heart appears on the monitor next to Wyatt's bed. And the first thing the cardiac technician says? "Wow, that's the biggest clot I've ever seen."

Stunned, I watched her map the image, taking the measurements and entering data. The specialist comes in and he points out the shape of the clot in Wyatt's heart and down his aorta. It was horrific and fascinating at the same time; I had never actually seen the clot before.

The specialist took the data and advised me he needs to review it first. I'm told to wait in a separate room with Wyatt. At this point, I was trying to keep it together because I know the doctor will not tell me everything if I am falling apart. I've been down that road before. So I wait.

He came in and spread all the print outs on the table. Wyatt's clot is massive. He actually did not have the measurements from the previous NICU echo but it didn't matter. I am told a "clot team" in IWK will have a conference on Wyatt to see how to proceed and that I should be able to stop the Lovenox injections. This shocked me and scared me. What if the clot gets bigger? When I asked this, I was told to continue the injections until Dr. S. hears from the clot team.

And then the specialist pulled out the stripe showing the peaks and valleys of Wyatt's EKG. There was a problem. The test matched with the prior one, showing a pattern that indicated Wyatt may have arrhythmia. This was completely new to me. What could this do to my son? He made reference to young adults and children that have heart failure while playing sports. He tells me so much information but at this point I was so overwhelmed that it is washing over me. I'm nodding my head as he talks, trying to look calm but all I want to do is grab my sleeping son out of his car seat and hug him tight to my chest.

At the end of the meeting, I had to ask. "Can this arrhythmia problem kill my son?" The specialist hesitated before answering me. Yes, if left untreated. I thank him for his time and leave, crying my eyes out as I drive home.

Something To Smile About

Wyatt looking fine at 8 months old!

My little man has definitely come a long way. He is active, mischievous, and of course CUTE!

God bless all those who helped us get here and for all the prayers. Again, thank you so much Don and Chris Wilson of Wilson Builders LTD. for your continued kindness towards my little boy and family. These men are are truly wonderful! Thank you :)

A Giant Thank You To An Amazing Woman and Friend

I wrote this post over and over in my head for the past few days and I still can't get the words right because it means so much to me. So, I'll just say it straight from the heart.

Donna, thank you. Thank you so much for your gift, for your prayers, and for being in touch when so many were not. Thank you for your wonderful books that helped me to laugh and think of something else for a few precious moments when I desperately needed a break for sanity's sake. Thank you for being a friend. :)

Let me introduce you all to this amazing woman. Donna Alward, born Donna Jones, is a romance writer for Harlequin books. You can visit her at http://www.donnaalward.com and meet her on her blog at http://www.donnaalward.blogspot.com . I grew up with Donna and I can say I've always admired her. (Yes, Donna, it is true!) She was the girl in grade 9 that had the guts to go blond, able to play music and to declare she would one day be a romance writer. I remember her as one of the smart kids with a keen sense of humor, sharp wit, kind heart and being passionate about everything she did. A kind of kid a parent would be proud to have! LOL

Donna writes with all of these qualities and more. Her books can and will make you laugh, cry and fall in love all over again. So for all you moms and dads (yes, dads too!) that need a break, I'd definitely say look for Donna's books. Lord knows how nutty the NICU, Peds ward, and doctor offices can make us. You can find a list of her work with excerpts here. My favorite? Hmmm. They are all fantastic, but Hired By The Cowboy has a soft spot in my heart. :)

Thank you so much Donna!

Free Feeding Diary to print or download

Feeding times and amounts. Soiled diapers and how much. Medications given, how much and when.

Yikes! Almost all moms suffer from "Mommy Brain" at some point. These important facts can fly right out the window when we need them the most. So, here is a journal I made to help me remember, when asked by the many medical professionals.

Another big plus: Helps to give you piece of mind when you are sleep deprived! :)

It is a pdf file you can save and print. I cut mine to size of a coiled notebook and glued it in on each right hand page. That way I could write notes about how Wyatt was doing that day on the lined backside. The nurses and doctors really loved it because it gave them very clear information to work with.

Enjoy!

Breastfeeding/Formula Feeding/Diaper/Medication Journal

Update

Merry Christmas and a Happy New Year!


Hope you had very happy holidays! It was a whirlwind for my little family. Stressful, but every mom and dad experiences that! LOL


Lots has happened with Wyatt, some good, some disappointing, but over all, I feel very blessed. I'll give you a quick update:


Wyatt was in and out of the hospital twice for colds. Normally, an infant with a cold is a concern but something we parents take in stride. You can't give much to a baby to relieve the symptoms. Good old fashioned rest, fluids and a watchful eye is about all you can do. But when a baby is on oxygen for a time period, their lungs are very fragile and a cold could be the worst thing for them. So Wyatt and I got to hang out at the hospital for a few days. He loved the attention from the nurses and Dr. S.


Wyatt was denied the special needle that really sick babies get during the winter months to boost their respiratory systems. It is frightfully expensive; approx. $1000.00 CND per shot. It is a controlled drug by the government; only few babies can have it and they must meet a criteria. Under a certain weight, had oxygen therapy for a period of time and under 6mths. Dr. B, who was one of the doctors I witnessed save Wyatt's life on a few occasions, was pushing to get Wyatt on the list but he was denied. Too big, too heavy and already 5 months old. RATS. But Dr. S said he feels Wyatt will be fine without it. I just am super cautious of taking him around people with colds.


And to all the parents that contacted me, yes Wyatt is meeting some of his milestones but he is not meeting others. I've got a special post coming with more details. Wyatt and I go to a NICU Follow Up Rehab. Center to work on his physical, mental, and emotional development. A team is following him until he is three. We also have a nurse from Early Intervention visit us at home to show Wyatt and I some play therapy exercises we can do to encourage Wyatt in meeting his milestones. Wyatt LOVES theses "play dates." A nurse from New Brunswick Public Health checks in with us from time to time to see if Wyatt is growing and eating properly.


Speaking of that, he has not been eating and growing very well. It is really stressful. Wyatt was breastfeeding for maybe 30 seconds at a time. Dehydration was and still is a constant problem. He is now up to a 5-10 minute feed at a time, but it is a lot of hard work that gets us there. Sometimes he will eat for more than 20 minutes! That is rare, but when it happens, it is like gold! I still have to top him up with an extra feed of a high calorie bottle (8 oz.) once a day.

At last weigh in, Wyatt was almost 21 pounds and gained in length for his 6 month birthday.
YAY!!! GO TEAM WYATT!!!!! :)