October 25, 2011

Some of you may have been waiting patiently since our last post for another update! We are thankful to say, that although still very busy, things have been going really well. The three of us have settled into a routine, well, as much of a routine as you can have with all the appointments and such! Cara has been much more content and even blessed me with a smile or two (much to Alex’s disappointment that he didn’t get the first smile :)

God worked once again in answering prayers just last week Friday. Cara went in for a cardiology appointment and the cardiologist was concerned with her incision for a possible infection. If infection was found to have set in, they were looking to admit her and start her on antibiotics through IV. We were sent right away to have blood work done, and 2 hours later they called us to say that her blood work looked good and it appeared there was no infection! She is on an oral antibiotic right now for another infection they found, but after seeing the cardiologist today, she only has to continue that for a few more days because he was pleased with how she is doing.

I have had many times where I forget she has had major heart surgery because she looks so good and is so alert. Each doctor visit, however, is a reminder of how far she’s come since birth and while this week she turns 2 months old, we turn to God and praise Him for His awesome hand in her young life.

p.s. We will do our best to put up updates each week. Thanks so much for your faithfulness in checking the blog and praying. God bless you!

Note from Alex: Some of you already know this, but Julianne has been diagnosed with Type 1 Diabetes. We know God has a purpose in this as well, even if it is simply to bring us even closer to Him. We would appreciate your prayers as this means some lifelong changes and careful monitoring in order to stay in good health.

“The plans of the LORD stand firm forever, the purposes of His heart through all generations.” Psalm 33:11

October 14, 2011

A week has already gone by since we arrived home with Cara. While it is such a blessing to be at this stage, it is not without its own trials. God supplies us with enough encouraging times to get through the tough ones, but it hasn’t been an easy week. Cara battles reflux, vomiting and gas on a daily basis. While some of this may be normal for a new baby, it is difficult seeing her struggle through another stage in her recovery. We took her home with her NG tube still in and are working with NG feeds every 3 hours, and the occasional bottle as well. The goal is to improve her bottle intake until she takes all of her feed through the bottle. This is a slow process because she has to have the milk thickened in order for her to swallow properly. In between and during her feeds, if she’s awake, most of our time can be spent trying to calm her down. Julianne’s day consists of feeding Cara, pumping, calming Cara, sterilizing containers, giving meds, going to appointments and trying to catch some sleep! Alex is at work, but often comes home to lend a hand or make it to appointments as well. We are so thankful for the help of our mom’s and to Michelle for all they’ve done for us! Please continue to pray for us, because at times we can become very discouraged. Ultimately we realize that we can only bring all of this to God and leave it in His hands.

Another note: after seeing the cardiologist yesterday we are told that her heart repair looks good, although there are a few areas that have leaks still, and time will tell if they heal on their own or if they will be a continued concern.

“Praise be to the Lord, to God our Saviour, who daily bears our burdens.”

Psalm 68:19

Home!

With joy and trepidation we brought our precious daughter home today after thirty three days in the hospital. We look to our heavenly Father with praise and thanksgiving in our hearts, knowing that He was and will continue to be beside us each step of the way on this journey.  Please give thanks to God with us and pray that Cara will grow stronger each day.  Please pray also that we may grow in confidence as we deal with her feeds, her medications and doctors' appointments.

"How precious is Your lovingkindness, O God!  Therefore the children of men put their trust under the shadow of your wings." Ps. 36: 7

October 2, 2011

Today was a much better day for Cara. For one, she is handling tube feeds somewhat better. She moved from being on a pump to being gravity fed through the tube. This is what the doctors wanted to see, because it means she is getting ready to go home! They are fine with sending us home still having her gravity fed through the NG tube and continued bottle training can happen at home. To our surprise, the doctors are saying we may even be going home early this week! She also improved handling small amounts on the bottle today. One other exciting thing is that she is now disconnected from all monitors so she is wire free! She really hasn't had this since she was born. :) God has been so good to us and we feel very blessed to be the parents of Cara Anne. Great is His faithfulness.

"Those whose strength is in You.....They go from strength to strength , till each appears before God in Zion". Psalm 84:5,7

October 1, 2011

A roller coaster best describes the past two days. Yet, when the ups and downs come we see God working most clearly. Cara's feeds have been quite a challenge lately. She is fed every 3hrs. Most of her feeds are still on a slow pump through the NG tube, a process that her stomach does not enjoy. After a feed begins, we may spend 1.5 -2 hours calming her from crying and gagging. She is on all the medications they offer to help settle her stomach in this situation. Teaching on the bottle was at times quite discouraging also. Through all this, God does not allow more than we can handle, but shows His grace and love just when we need it and turns our hearts to trust in Him. We are still very thankful that the larger, more serious battles are behind us. All praise to Him!

"By day the LORD directs His love; at night His song is with me - a prayer to the God of my life." Psalm 42:8