December 5, 2011

“Rejoice in the Lord always, I will say again, rejoice!” While this verse applies to both good times and difficult times, it is such a blessing to say we are rejoicing with positive news. Last week Friday we took out Cara’s NG feeding tube and she is now 100% on a bottle! This was so encouraging to us and another obvious answer to the prayers offered for this. Cara will, however, remain on thickened milk as an appointment last week revealed that there is still no movement of her left vocal chord. It could be damaged permanently or still heal, but in either case she will be able to eat normally one day. We are receiving more smiles these days and I’m sure as many parents can attest to, that puts big smiles on our faces. J

Some time in the near future Cara will have to go in for a sedated echocardiogram. This will determine whether or not she will have to go to Sick Kids for the procedure to enlarge the vessels going to her lungs. Your prayers, as always, are appreciated.

How great is the love the Father has lavished on us; that we should be called children of God! 1John 3:1a

November 20, 2011

We can continue to thank God for answering prayers for Cara. The good news is that she has passed her birth weight! She was born 8lbs12oz and she now weighs about 9lbs5oz. Her reflux issues have not really been a struggle lately and she is doing really well on the bottle! She can now take a whole feed by bottle, which is a very clear answer to our prayers, and it seems the only thing holding her back from doing this for every feed is the occurrence of gas.

After another echocardiogram (ultrasound of the heart) the cardiologist tells us that it looks pretty good, though still with a few minor leaks. There is some constriction where the pulmonary artery branches to her right lung. If this vessel does not expand by mid December, three months after surgery, she will likely be sent to Sick Kids to have it expanded by catheterization, a process where her artery is expanded by a small balloon. The doctors are happy that she isn’t showing any signs of oxygen deprivation. Again, we commit Cara’s healing to the hands of God, who has already worked great things in her life.

With glad hearts we announce that Cara will be baptized next Sunday, November 27^th. In celebration of God’s faithfulness in bringing us to this day we invite you come.  The worship service begins at 9:30am at Zion URC in Sheffield. We would love to see you in person and thank you for your prayers and support. Be sure to stay afterward for coffee and lunch following. 

November 4, 2011

Another week has flown by! Not much to report, which in itself is a good thing. We are thankful to report that Cara is growing, although still not up at her birth weight yet. She weighs about 8lbs8oz and the doctors are happy with her progress. In a few weeks she will hopefully have another feeding study to see if her vocal chords are improving. As far as her feeding tube goes, that stays in until she is able to handle a bottle fully. The bottle is a challenge because of the reflux she has to deal with after gulping down part of her meal. We are told this challenge could last up to 6 months, so we are praying for better progress on that front.

"Great and marvelous are your deeds,
   Lord God Almighty.
Just and true are your ways,
   King of the nations."
Revelation 15:3

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

 

 

September 29, 2011

   We are now getting a taste of practical parenthood, what a lot of work! We can hear all of you parents laughing at our realization of this :) Today's good news is that she is quickly learning how to feed from a bottle. It isn't all that easy for someone who has never swallowed food before. We pray that this progress continues, because she is still having a difficult time keeping down feeds through the NG tube. The nurses are teaching us how to start and manage feeds through the tube because she may be sent home still requiring feeds this way. Please join us in prayer, asking God to strengthen her stomach to tolerate her regular feeds and bless her bottle training. 

"He has made everything beautiful in His time" Ecclesiastes 3:11a

September 28,2011

We have a lot to give thanks for today. Yesterday the doctors decided to remove Cara's central line, so far with no word about replacing it. Her ability to handle her feeds appears to be improving. She is now solely on feeds through her NG tube, no longer needing additional supplement through IV. The occupational therapist comes in regularly to help her toward accepting a bottle. Today they made great progress with that. She has had trouble getting her voice back since surgery and an inspection of her vocal chords revealed some damage, likely from the breathing machine. We are told that this can be fixed by relatively simple measures over the next several weeks.
Perhaps the biggest and most exciting news is that Cara was moved into her own room today. She no longer needs the intensity of care involving a nurse at her side at all times. Instead we have the opportunity to be more involved with her care. Her own room has a place where we both can sleep. We can hold her to settle her, coach her through feeding, change diapers and always be there for her. They encourage parental involvement so that we are experienced with caring for her by the time we go home. We are amazed to see how far we have come together as a family. Through it all, God has lead us by His faithful hand and carried us through these past several weeks. We know His purpose through all this is greater than we can fathom. For His glory.

"He has done all things well..." Mark 7:37 

September 26, 2011

Today's exciting news is that Cara has been moved out of the critical care unit! Although she continues to be stable she still has a ways to go for recovery. Unfortunately Cara is having trouble handling most of her feeds.  The nurses feed her through an NG tube very slowly and even then she has trouble keeping it down. The decision about her Central line has been left for tomorrow but again, whether they take it out or replace it might depend on how she handles her food. Each day has it's challenges, but God's strength sustains us, often through small graces within the day.

"I sought the LORD, and he answered me; 
   he delivered me from all my fears. 
 Those who look to him are radiant; 
   their faces are never covered with shame." Psalm 34:4,5

September 25, 2011

Cara’s morning x-ray showed moisture build up in her lungs. She was switched to a different form of medication to help her pass more fluids and dry out her lungs. Also, the central IV that runs through a vein in her arm to her heart has moved slightly, making it less effective. Tomorrow the doctors will decide whether to have a new on re-inserted or to take it out and do without. Getting a new central line inserted is a considerable process that has some risks of its own. This decision is somewhat dependant on how well she does with her feeds. She is gradually receiving more at each feeding, but sometimes her system can’t handle it all. We commit this situation to God’s all powerful hands. We are thankful that she is still breathing very well on her own and the CPAP is no longer necessary.

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

September 24, 2011

Yesterday morning the respiratory therapists decided to take her off the CPAP machine to see how long she can comfortably breath without it. She has been off since then and still doing well. We give thanks for this because it is what the doctors want to see before they decide to move her out of critical care. 

Also, you may remember that stabilizing Cara's blood sugars was quite a challenge and concern prior to surgery. Since then, she has been balancing her sugar levels well on her own. The endocrine team is no longer involved in her care. This was a specific prayer request in the weeks past and God has answered in a great and  clear way.

"I love the LORD, for he heard my voice; He heard my cry for mercy. Because He turned His ear to me, I will call on Him as long as I live." Psalm 116:1,2

September 23, 2011

Today was a quiet day for Cara. We are thankful that she is spending more time breathing on her own without the help of the CPAP machine. It looks like she will be continuing her stay in the critical care unit because the doctors want to keep a close eye on her. We also are thankful to see that her digestive system is improving, meaning we get to change a diaper on occasion :)


Praise God for His goodness. He is our source of strength and patience.


"I have sought Your face with all my heart;
Be gracious to me according to Your promise...
May Your unfailing love be my comfort,
According to Your promise to Your servant." 

Psalm 119: 58 & 76

September 22, 2011

Cara is three weeks old today and what a busy three weeks she's had! Today was just a day of off and on the CPAP machine. Each day they will increase the amount of time off of CPAP until she can handle breathing completely on her own. Unfortunately there's no telling how long this might take, or how long until her lung and diaphragm function improve. Many of the nurses tell us this is up to her, but we know it is up to God! 
She had a little episode today where her heart rate suddenly spiked and adopted an abnormal rhythm. The doctors brought her out of it with medication, and were happy to see that it did not take much to settle it out. From here they will continue to monitor her closely. They informed us that the likelihood of this reoccurring becomes less in days further after her surgery. 

Prayer requests:
-that her lungs and diaphragm would return to normal.
-for no reoccurrences of her heart arithmea episode.
-that we may be able to go home in the near future.
-we give thanks that she is otherwise doing so well and we can enjoy time holding her and having her be wide-eyed and alert.

"But from everlasting to everlasting the LORD'S love is with those who fear Him, and His righteousness with their children's children." Psalm 103:17

September 21, 2011

Cara got a short taste of freedom today. The Respiratory Therapists wanted to see how she did without the CPAP machine on, so for a short period of time they took it off and monitored her breathing. She did very well breathing on her own, but unfortunately she does tire. They want her to continue on the CPAP to give her a break. She will be on and off the CPAP as she gets stronger. We are told that it may take several days to see progress.

 It made our day to see her content and wide awake without the CPAP. The picture below is from this afternoon where she spent over 45 minutes looking around and making faces at us. J Her poor little nose has been stretched and squished from the ventilator and CPAP.

 We are encouraged still by all of the answered prayers, and also all the love and support shown by so many.

"Look to the LORD and his strength; seek his face always."

1 Chronicles 16:11

 

September 20, 2011

Today's highlight was getting to hold Cara again. It has been a week and a half since we have been able to do so. She was taken off the ventilator today (extubated), but she still has to wear a CPAP machine against her nose to help her right lung improve. She isn't happy about wearing it. Her discomfort is something she tells us by facial expressions and silent crying. We are sure she will tell us all about it when she gets her voice back. Extubation was a big step for Cara. She also had her central and arterial IV lines removed, leaving one left in her arm. We are hoping she will be moved from the critical care unit to the cardiac ward in the next couple days. No one has told us when we can expect to take her home, but seeing how things are going, Lord willing we hope to have her home by the first week of October.

"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts" Isaiah 55:9

September 19, 2011

Praise God that Cara had a relatively uneventful, but encouraging  weekend. We enjoyed frequent family time, telling her stories and occasional opportunities to wash her up or change a diaper. It really makes our day when she opens her eyes to look at us. Today she had the remaining chest drains removed. The central IV line in her neck will hopefully be removed tomorrow. The doctors are working at weaning her off the ventilator, but she still needs it in for a bit to exercise her right lung because it is a little collapsed from surgery. The incision was looking a little inflamed, so they are currently examining it for infection. The nurses were able to begin feeding her via a nasal tube. They start with very small amounts and increase it very slowly. Overall, she is looking very good considering what she has been through this past week. 

"The Lord is close to the brokenhearted..."
Psalm 34:18a

September 18, 2011

September 16, 2011

Today was another big day for Cara. She was able to have get chest sown together again. We were initially told it would likely be 3 to 5 days before this was able to happen. But today, some 40 hours after surgery she was able to have that done because she is doing so well. She is still being monitored to see how she tolerates it, but things look good so far.

All praise to God.

"Your works are wonderful, I know that full well" Psalm 139:14b

September 15, 2011

"We are very surprised with how well she is doing." These are the words of one of Cara's nurses today. We have only heard positive reports since she returned from surgery 22 hours ago. Her heart rate and rhythm have remained stable, her blood pressure and blood sugars are good, her kidneys are doing their job well and continued bleeding has not been an issue. For all this we give praise and thanks to God for hearing prayer and working in such clearly awesome ways. She still has a long way to go on the road to recovery but we know she remains in the hands of our faithful God.


"Praise be to the Lord for He has heard my cry for mercy. The Lord is my strength and my shield; My heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song."
Psalm 28:6-7

September 14, 2011

'Sing to the glory of His name; make His praise glorious!
Say to God, "How awesome are your deeds."'
Psalm 66:2-3a


With thankfulness, we can tell you how God has answered prayer today! We gave Cara a farewell kiss this morning at 8am while she was being wheeled into surgery. At this point we were reminded by the surgical staff that it was going to be a long day because it was one of the most complex heart repairs that they perform. At 3pm the surgeon came out to tell us that all had gone well. She is now back in the Cardiac ICU, but we are not out of the woods yet as the first 48 hours are critical. There is risk of infection, continued bleeding, heart rhythm anomalies, blood clots, etc. They decided not to sow up the incision to allow room for swelling from the surgery. At this point we continue to commit her to the Lord's hands. 


God encouraged us through meeting fellow Christians who approached us after seeing us pray together in the surgical waiting room. He also provided for us in a wonderful way with a Christian friend in the O.R. who was able to supply us with small updates. How great is our God!

September 13, 2011

With thankful, yet tense hearts, we tell you that Cara's surgery is scheduled to happen tomorrow. She is in better condition now than she was last Friday, when she was originally scheduled for the surgery. Postponing was hard news to take at the time, but we now see God's hand in making us wait.

The surgery could take more than 6 hours to complete and she goes in at 8am. We sincerly request your prayers during this time. We trust in God to direct the hands of each doctor and surgeon that work on His precious child (and ours) tomorrow.

"Cast your cares on the Lord and He will sustain you..."
Psalm 55:22a

September 12, 2011

Praise God for another blessed day. Cara’s surgery has been tentatively booked for Wednesday or Thursday. The suspected infection appears to be well under control. We are thankful to God that it was caught early, because it had the potential to cause a lot of problems. The endocrine team is happy with her blood sugar levels and her kidney function indicators are within normal range. She had been on muscle relaxants since she was put on the ventilator. As they are weaning her off, we are enjoying seeing her open her eyes to peak at us again. Alex also loves telling her stories. We give God all the praise for answering the many prayers offered up for Cara.

“My heart leaps for joy and I will give thanks to Him in song.”

Psalm 28:7b

September 11, 2011

Praise God for a good day for Cara. Her blood sugars are remaining in good range. Kidney function indicators are also looking much better. She is slowly improving and the doctors are happy with her progress. Tomorrow the surgical team meets in the morning to discuss and schedule the operations for the week.
It appears that putting her on the breathing machine (respirator) has helped, which is great, but it means we cannot hold her for the time being. We still love sitting beside her and talking to her, spending time together as a family. 
Our prayer request today is that she will continue to improve so that surgery can happen as soon as possible.
"For His compassions never fail. They are new every morning; great is Your faithfulness" Lamentations 3:22b-23

September 10, 2011

Cara is in the Cardiac Critical Care Unit where she is receiving very specialized care to improve her condition for surgery. Her kidney function is a primary concern and God has answered prayers with signs of improvement. Cara's blood sugar levels are still jumping from too high to too low, which is not an easy thing for the doctors to manage. We leave this also in God's hands.


Today she had a breathing tube put in to help oxygen profusion and supply to vital organs, like her kidneys and stomach. It is likely that she will keep this in until the surgery. She also now receives nutrition through IV only. Some initial signs of possible infection were noted through an ultrasound of her abdominal area, so she was started on antibiotics to manage this. 


Visiting her is becoming more difficult for us as she is attached to more wires, IV lines and tubes daily. 


Julianne has not been able to meet with her diabetic specialist to investigate her situation more, but has received good instruction to help manage her blood sugars until she can.


Prayer Requests:

• That Cara's bodily functions improve in order to strengthen her for surgery.
• That Cara's blood sugars would yet stabilize
• That infection would not interfere with plans for surgery
• That we continue to experience God's strength in increasing measures, especially as her care intensifies.

Thank you for your prayers and support and please continue to pray.


"Praise be to the LORD, to God our Saviour, who daily bears our burdens."
Psalm 68:19