To update from my last post regarding the Gastro doctor's advice that I stop expressing my breastmilk to give to Jake, I chose to follow my instinct and ignore that advice. I gave myself a two week limit to see if the blood in Jake's stool would clear up, and if there were any other symptoms of a allergy. It's incredible how things work out sometimes because since that day I saw that GI - over 2 weeks ago, there has been no blood in Jake's diaper. NONE! And I have slowly been reintroducing dairy into my diet - I even had a piece of cheese last week -and there has been no change in Jake. I see the GI on Thursday this week, so I'm very curious about what her take on this will be. There have been no significant improvements in the feeding department, but Jake is now taking some milk from a cup. I know that sounds strange - I'm feeding my infant from a cup - but it's about 5-10 ml per feed, and the goal is not let Jake forget how to swallow. Without daily practice the OT has told me he may forget how to swallow. Now my new hopes for his feeding lie in him having more stamina after his Glenn surgery in September, and in the assurance I have been given that heart babies generally do better with solids than with fluids. Jake had a developmental assessment session with the OT last week and while I knew that my baby was behind "normal" 3 month old development, it was still hard to hear the OT say that he was behind in terms of his neck and shoulder strength. In the other departments Jake is fairly on par with the norm for this age, so I am thankful for that. We have increase Jake's tummy time and other neck/shoulder exercises based on the OT's suggestions and I am already seeing some improvement. Poor Jake hates his tummy time though, there is certainly nothing wrong with his lungs!
Last week I had another 10 years taken off my life, I'm sure, because when I checked his oxygen levels in the morning the monitor was telling me that Jake's heart rate was in the 60s. With a pacemaker set at 120, this shouldn't have been possible. We rushed off to the Janeway cardiology department, calling on the way, and once again we received exceptional care. When Dr. T checked Jacob's heartrate and confirmed that it was in the 60s, I wanted to throw up. My first thought was that the pacemaker was malfunctioning, and Jake was going to be airlifted to TO for a surgery. It turned out that Jake had outgrown his pacemaker settings, and they just needed to be adjusted. Thank God this adjustment is possible with a machine and a donut shaped apparatus placed over the part of his belly where the pacer lies - nothing invasive. We were out of the Janeway less than an hour later, with everything once again as it should be.
We received the official notice of Jake's heart cath at Sick Kids in the mail last week. We are heading back to Toronto in early September, and if the heart cath shows that Jake's heart is ready, he will be booked for his Glenn sometime in the week following the cath. I can't bear the thought of bringing Jake back to Sick Kids or back to the OR. Our stay at Sick Kids in April-May was excruciating, and somehow I feel like this one will be worse. I think it will be harder because I finally feel like Jake is mine -for the first 56 days of his life I often felt like he belonged to the doctors and nurses who were caring for him 24/7, and my input was minuscule. Since coming home we have learned how to care for Jake and meet all his needs, his smiling face lights up my whole world, and he is finally mine. I'll have to relinquish some of that control when we bring him back, and I don't know how I will manage that. I am praying that we are able to get back into Ronald Mcdonald House with him, because that will make life much smoother for us as we wait for his Glenn and then during his recovery. It will give us a clean, safe place to be a family while we wait and while Jake heals. If you are still praying for us, please add this specific request to your list.
We have scheduled a dedication ceremony for Jake at our church in 3 weeks. Jacob was dedicated by his grandfather at Sick Kids hospital two days before his first open heart surgery, and that is a beautiful memory that I will forever treasure. Our family would like to have a celebration with those who love Jacob and have been supporting us since the very beginning, so we're going to have a more official ceremony where he can wear a dedication outfit, and we can be joined by our family and friends in celebrating Jacob as the true gift from God that he is. Jon and I are working on a special addition to this ceremony, which I can share on this blog after August the 18th.
I can't believe it will be August in just a couple of days. We have been home in NL for almost 2 months, and that has flown by. As it gets closer to September I am getting more anxious, but I have to trust God and believe that He will bring Jake through this next hurdle. I'm trying to contain my anxiety, and find myself feeling very down on some days - simply overwhelmed by the enormity of all this is going on in my life, and my children's lives. Having my family living in the same city has helped a great deal in this respect - I can depend on my Mom and Dad, or my Sister to help bring me up when I get muddled down in life - they can always point out the bright side of things, and help me to see the good that lies behind the cloud of darkness that sometimes keeps me from being as happy as I should be. Thank you for that. Life is good. My sweet boy is having a nap in his swing right now. In two weeks Jon and I celebrate 9 years of marriage, and we have a whole lot to be celebrating this year!
Sending a shout out to Your Vinyl Destination for the t-shirts she made for our family. Here's Jake modelling his:
"A mended heart is a special heart" is the message on the front. On the back it says "Thank you SickKids!"
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