Wednesday, January 13, 2010
How Great is Our GOD?
January 12, 2010 what a day! A day that will be forever marked in our hearts!
Sarai has been doing great. She has been weaned off the morphine and has taken it pretty good. A few symptoms of withdrawl but that was to be expected. She is feeding with breastmilk and they have been putting it up by 1ml every 12 hours. She had a few spells of regurgitation which were shocking to see as each time she did that she would bring up the feeding tube with it, however most of it was caused by a build up of mucous in the stomach. We seem to be over that now and she is currently getting 10ml and hour so we are 1/4 th of the way to a full feed!! Yay God.
She went through a few days of not sleeping well, or at all really! 20 minutes here 20 minutes there. My poor girl. I believe it was a combination of different things contributing to her restlessness....the weaning off the morphine, the constant ringing of alarms, and pumps, and my caffeine consumption! Naughty Mommy, should have thought things through a bit more.....however when you have a baby beside you all the time I think you are more conscious of what you are taking into your body. So I made a decision for the both of us to slow down on the caffeine intake.....2 large timmies and a large french vanilla cappuccino everyday was a little too much. So now I am down to 1 large coffee and decaf tea! And it is not an easy thing to do either, especially when Tim Horton's is around the corner of the hotel and they seem to always get it just right! I may have to start taking the long way over to the hospital for a week or so..ha ha ha
Anyway enough about that, So over the weekend they discovered that since Sarai's left diaphragm is not moving as it should and is stuck in the upper position it caused some partial collapse in the left lung. Then yesterday morning they did a chest x-ray to check on the lungs and discovered an accumulation of fluid around the outside of both lungs...it was a bit upsetting as you can imagine. hey talked about how if it got any worse and she was laboring with the breathing they would have to look at putting her back on cpap or reintubating (breathing tube) her! However she was breathing fine and not showing any signs of distress at all and her SATS (oxygen) were staying up between 97-99%!! I had a brief moment of anxiety, then I said "No, I refuse to get upset again, she will be alright" I chose to give it to the Lord, after all He is our #1 Physician right! I prayed for her, and soon after that left for the afternoon to take our boys out to play.
After supper I returned to the hospital to bathe Sarai. I gave her her bath and then got myself situated on a rocking chair to have a cuddle with her before bedtime. While sitting there with her I asked the nurse if they had repeated her chest x-ray that afternoon (they spoke about doing that just to check if there was anymore accumulation of fluid). She said no and that they would probably do it in a day or two. Shortly after the Head charge nurse came over and said "I just had to let you know that we repeated her chest x-ray at 5 o'clock today (January 12, 2010) and it was like looking at a totally different x-ray! the fluid was gone from both sides and it seems as though she just opened up that left lung, I just don't know! But it is like Night and Day!" All I could say was "Thank you Jesus"
I sat there looking at her, and was so overcome by His presence at that moment and I began to weep. It wasn't at all like crying, just tears but I was so full of joy, overcome by joy, I was looking into her eyes and she was starring into mine! It was such a beautiful moment. It is really hard to explain more than that, the feelings I felt and the joy that was with in me at that moment the feeling all around me, it is just way to Awesome, It is God.....something we all have to experience ourselves to really know!!!
People God is so GOOD ALL the TIME!!!! He has shown so much of Himself to us through this all. I know people wonder if we are really doing as well as we sound. The answer is Yes we are. However if we did not have the Lord in our lives I am sure we would be total wrecks! He is sustaining us emotionally, physically and spiritually! He is our all in all.
Yes we have our moments when we feel weak but the Lord brings us back very quickly. Lean on Him, He will sustain you. His love for us is so profound something we can not even begin to comprehend!! Seek Him with all your heart. We must not Lean on our own understanding. We must Seek Him and all these things will be added unto us!
Yesterday had such a great ending! and I pray that all who read this will be touched by this great miracle He has done. Our prayers are being answered everyday, they are not unheard!! Keep praying for us, for Sarai for God's continued healing hand, for all the other babies in the Stollery NICU and their parents. Thank you so much for your support and your prayers!! We love you all and so does our Father!!
Labels:
baby update,
D-type TGA,
love of the Lord
Wednesday, January 6, 2010
Tuesday, January 5, 2010
Baby Sarai Update
Well here we are 2010! It seems as though time has just flown by! It seems like only the other day when we were blessed with the news of pregnancy....and like yesterday when she was born. As of yesterday she had her 6 week birthday. That was special for her and her big brother Danny as it was his 8th birthday as well!
Sarai is doing very well. She was moved from the PICU back to the NICU on December 19th. Each day that goes by we see more and more of our Father and His great Love for us all. Each day brings another step towards going home, her healing and recovery.
About 2 days after returning to the NICU she had her catheter taken out, her dialysis tube taken out and was taken off the ventilator! So close to being tubeless. On Christmas morning her last tube was taken out...the chest tube...Hooray it was such a great gift to her and us. She was left with one IV running her nutrients and the morphine which was slowly being weaned down. She was getting breastmilk through a feeding tube and all was going so well that they decided she could be moved up to the wards or floors as they say. This is just a normal hospital word, however when we got there I had a very uneasy feeling. Like "were we ready for this?" She was in a shared room with another child and the child's dad. We were not ready or even really knew that we could room in with her. So leaving her that night was very hard, maybe even harder than her first week of life leaving her in the NICU. The reason being our little princess was in this room and the nurses were in the hall! We have been so used to her having 24 hour care with a nurse at her bedside! So I am sure you can imagine to some extent how we were feeling.
Of course the next morning we were up pretty early so one of us could go be with her. When I arrived in the room she was awake and seemed sad and lonely, Poor girl. The nurse informed me that her heart rate had gone up a little and also her breathing, so she was being taken for an Echo Ultrasound. It was quite the production getting her there. I packed her while one nurse pushed her med pole and another with the monitor! I just had this feeling that she wasn't really ready to be on the "floors" yet. A decision was made later in the morning that Sarai should go back to the NICU. The doctor and nurses were so sympathetic about it, however I felt much peace about it. And not to mention when I told Sarai she was going back to be with her friends in the NICU she brightened up!
So we moved back to the NICU. We feel so much better now and we also know what exactly to expect when she does go back up to the "floors." We will be more prepared. After we moved back to NICU Sarai hit a little bump in the road, however it is not a bump we are going to be stuck on, we continued praying and praising and God continues to answer. Tests showed a bit of left diaphragm stunning, which the doctors think will come back on its own, and this is what we are praying for. She had quite a large accumulation of fluid around her chest cavity which was drained twice on the right and once on the left. Since then there has not been any problems with that Praise the Lord!! That being said she was having a harder time with breathing and was put back on the ventilator. Yes it was emotional having to see her getting tubes put back in however we are happy that they are dealing with all these issues. We want her to be healthy healthy before she goes home. Sarai was taken that next morning to the Cardiac Cath lab where they go into a vessel in the leg up into the heart to get good images of how everything is functioning. There was a lot of praying happening and the Lord answered yet again!! They couldn't find anything and things are functioning better than they expected...man God is GOOD.
She was getting x-rays each day to check for fluid but they have not found any more. The fluid they were finding has something to do with the fats from the feeds, it is called Chylothorax. To deal with this issue and get it resolved they have stopped her feeds and will resume in a week and a half. Until then she is on nutritional supplements so she won't starve, no worries. She also had a short surgical procedure yesterday (Jan 4) to insert a central IV line which was put into her leg. This will insure she is getting optimal nutrition and the meds she needs. She is still on antibiotics for a bacteria she got when on ECMO and will finish that on Jan 17. All tests for the bacteria are negative, Thank you Lord. She did however end up with a couple clots and is on a blood thinner to resolve those which we will have to administer once we go home, the total time for her to be on that is 3 months.....I just have to get the guts to do it, as we will have to give her 2 shots each day. But there is something called and encephlon that can be put in place so we can just inject into that instead of poking her all the time, that will make it easier.
They did go up on her morphine again and added another med to help with blood pressure while they give her time to strengthen. They began to wean the morphine again yesterday and will take it slow with weaning over the next week. Today she is to be extubated (be taken off the ventilator) again. YAY, this is exciting for us cause when she is on the vent we don't want to hold her...as I can see this tube being pulled or something and the fact that it takes a nurse and a respiratory to get her on and off our lap!
Dad just called and says that she is extubated and on c-pap, which is just the little breathing tubes that sit just inside the nostril. YAY Thank you Father for all you are doing in this little girl!!
So we hit a bump, but we are over that bump and refuse to dwell on it and get stuck. We must keep looking forward with our heads held high, continue praying and praising!!
She is so content and makes such great eye contact. She communicates with us using her eyes and has shown us ta few smiles here and there. She is such a trooper. One thing she has made known to us all is her temper!! I told her brothers they better not make her mad....lol When she is mad there is no working up to it, she instantly turns bright red and sometimes purple, we try to console her quickly with prayer, singing and stroking her hair. The quicker we can get her to calm down the better cause they like to pull out the sedatives, so if we can get her to calm down then she doesn't get them. The one morning she got so mad at the nurse and she pulled her feeding tube out!! The nurses comment on how calm she is when we are around so we take turns going over to be with her so she doesn't have many long stretches without one of us during the day. One of us usually stays until late evening to get her to sleep and she is then quite settled throughout the night.
I am able to give her sponge baths and change her diapers, it's not much but it makes me happy as well as Sarai, she enjoys our time together with her.
We look forward and go forth towards our goal of going home soon. It is our hope and prayer to be able to take her home by the end of this month. But we will not rush her, she needs a the rest she can get for that is when the most healing takes place. It is so amazing how God has created these little tiny ones' bodies, cells and tissues to regenerate and fix themselves so quickly!! His creation is so amazing!
Thank you Father for our sweet baby girl, thank you for her continued recovery and healing. Lord thank you for the surgeons and the wisdom you have shown and given them, thank you Father for the nurses and doctors who look after all these children and thank you for the compassion, love, wisdom and grace you instill in them. Lord bless each one of these doctors, nurses and surgeons, bless each parent that is going through the same things as we are, bless each child and bring great healing to them all! Lord Bless each person who is standing with us in prayer and agreement Father for our little girl and Lord we thank you for each one of them. Thank Lord for the awesomeness of all you do all you show us and all ways in which you bless us Lord. Send forth your angels and let us here the ROAR!!!! In the loving name of Jesus
AMEN
Thank you to you all for your continued support and prayers be blessed!!
Sarai is doing very well. She was moved from the PICU back to the NICU on December 19th. Each day that goes by we see more and more of our Father and His great Love for us all. Each day brings another step towards going home, her healing and recovery.
About 2 days after returning to the NICU she had her catheter taken out, her dialysis tube taken out and was taken off the ventilator! So close to being tubeless. On Christmas morning her last tube was taken out...the chest tube...Hooray it was such a great gift to her and us. She was left with one IV running her nutrients and the morphine which was slowly being weaned down. She was getting breastmilk through a feeding tube and all was going so well that they decided she could be moved up to the wards or floors as they say. This is just a normal hospital word, however when we got there I had a very uneasy feeling. Like "were we ready for this?" She was in a shared room with another child and the child's dad. We were not ready or even really knew that we could room in with her. So leaving her that night was very hard, maybe even harder than her first week of life leaving her in the NICU. The reason being our little princess was in this room and the nurses were in the hall! We have been so used to her having 24 hour care with a nurse at her bedside! So I am sure you can imagine to some extent how we were feeling.
Of course the next morning we were up pretty early so one of us could go be with her. When I arrived in the room she was awake and seemed sad and lonely, Poor girl. The nurse informed me that her heart rate had gone up a little and also her breathing, so she was being taken for an Echo Ultrasound. It was quite the production getting her there. I packed her while one nurse pushed her med pole and another with the monitor! I just had this feeling that she wasn't really ready to be on the "floors" yet. A decision was made later in the morning that Sarai should go back to the NICU. The doctor and nurses were so sympathetic about it, however I felt much peace about it. And not to mention when I told Sarai she was going back to be with her friends in the NICU she brightened up!
So we moved back to the NICU. We feel so much better now and we also know what exactly to expect when she does go back up to the "floors." We will be more prepared. After we moved back to NICU Sarai hit a little bump in the road, however it is not a bump we are going to be stuck on, we continued praying and praising and God continues to answer. Tests showed a bit of left diaphragm stunning, which the doctors think will come back on its own, and this is what we are praying for. She had quite a large accumulation of fluid around her chest cavity which was drained twice on the right and once on the left. Since then there has not been any problems with that Praise the Lord!! That being said she was having a harder time with breathing and was put back on the ventilator. Yes it was emotional having to see her getting tubes put back in however we are happy that they are dealing with all these issues. We want her to be healthy healthy before she goes home. Sarai was taken that next morning to the Cardiac Cath lab where they go into a vessel in the leg up into the heart to get good images of how everything is functioning. There was a lot of praying happening and the Lord answered yet again!! They couldn't find anything and things are functioning better than they expected...man God is GOOD.
She was getting x-rays each day to check for fluid but they have not found any more. The fluid they were finding has something to do with the fats from the feeds, it is called Chylothorax. To deal with this issue and get it resolved they have stopped her feeds and will resume in a week and a half. Until then she is on nutritional supplements so she won't starve, no worries. She also had a short surgical procedure yesterday (Jan 4) to insert a central IV line which was put into her leg. This will insure she is getting optimal nutrition and the meds she needs. She is still on antibiotics for a bacteria she got when on ECMO and will finish that on Jan 17. All tests for the bacteria are negative, Thank you Lord. She did however end up with a couple clots and is on a blood thinner to resolve those which we will have to administer once we go home, the total time for her to be on that is 3 months.....I just have to get the guts to do it, as we will have to give her 2 shots each day. But there is something called and encephlon that can be put in place so we can just inject into that instead of poking her all the time, that will make it easier.
They did go up on her morphine again and added another med to help with blood pressure while they give her time to strengthen. They began to wean the morphine again yesterday and will take it slow with weaning over the next week. Today she is to be extubated (be taken off the ventilator) again. YAY, this is exciting for us cause when she is on the vent we don't want to hold her...as I can see this tube being pulled or something and the fact that it takes a nurse and a respiratory to get her on and off our lap!
Dad just called and says that she is extubated and on c-pap, which is just the little breathing tubes that sit just inside the nostril. YAY Thank you Father for all you are doing in this little girl!!
So we hit a bump, but we are over that bump and refuse to dwell on it and get stuck. We must keep looking forward with our heads held high, continue praying and praising!!
She is so content and makes such great eye contact. She communicates with us using her eyes and has shown us ta few smiles here and there. She is such a trooper. One thing she has made known to us all is her temper!! I told her brothers they better not make her mad....lol When she is mad there is no working up to it, she instantly turns bright red and sometimes purple, we try to console her quickly with prayer, singing and stroking her hair. The quicker we can get her to calm down the better cause they like to pull out the sedatives, so if we can get her to calm down then she doesn't get them. The one morning she got so mad at the nurse and she pulled her feeding tube out!! The nurses comment on how calm she is when we are around so we take turns going over to be with her so she doesn't have many long stretches without one of us during the day. One of us usually stays until late evening to get her to sleep and she is then quite settled throughout the night.
I am able to give her sponge baths and change her diapers, it's not much but it makes me happy as well as Sarai, she enjoys our time together with her.
We look forward and go forth towards our goal of going home soon. It is our hope and prayer to be able to take her home by the end of this month. But we will not rush her, she needs a the rest she can get for that is when the most healing takes place. It is so amazing how God has created these little tiny ones' bodies, cells and tissues to regenerate and fix themselves so quickly!! His creation is so amazing!
Thank you Father for our sweet baby girl, thank you for her continued recovery and healing. Lord thank you for the surgeons and the wisdom you have shown and given them, thank you Father for the nurses and doctors who look after all these children and thank you for the compassion, love, wisdom and grace you instill in them. Lord bless each one of these doctors, nurses and surgeons, bless each parent that is going through the same things as we are, bless each child and bring great healing to them all! Lord Bless each person who is standing with us in prayer and agreement Father for our little girl and Lord we thank you for each one of them. Thank Lord for the awesomeness of all you do all you show us and all ways in which you bless us Lord. Send forth your angels and let us here the ROAR!!!! In the loving name of Jesus
AMEN
Thank you to you all for your continued support and prayers be blessed!!
A Different Christmas
Well our Christmas was definitely a different Christmas for us. Of course being in a hotel room there was no baking going on for us. I am so used to baking up a storm; cookies of all sorts, candy, food.....so I missed that. However we had baking brought to us by our Aunt Edna and a whole lot of goodies brought to us from Nana....It sure didn't last long in this room with all these boys! The closest we got to any of our own baking was a trip to Superstore where we were able to find a ready to assemble Gingerbread house!
The kids were so excited to put it together. On Christmas Eve they all gathered around the table assemble the house. The older two boys were in charge, making sure everyone got a turn putting their section together. I think the hardest part for them was waiting the 15 minutes, once the house was together, for the icing to harden a bit! David was sitting at the table the whole time "guarding" the candy. It was too cute.
Time for the decorating....they had a lot of fun with this part. There was a lot of finger licking going on and I think David may have put two candies on the house and the rest in his mouth...LOL
Then came time for a few pictures of them with their masterpiece and.............................
within a matter of 10 minutes most of it was devoured!
The kids were very excited at bedtime as most kids usually are. However they all went to bed pretty good, I think it was a bit harder for the older two. Once Dad and I got to bed it seemed like such a short time when I heard the older two boys whispering in their bed (Very unusual for us since this was the FIRST time we never had to wake them up!). When I looked at the time it was 5:30am! I told them they had to stay in bed, then I could not go back to sleep so I got up and did some pumping before everyone else got woken up. It is always so awesome to see their expressions of complete Joy and Excitement!
Our Cute little tree, on Christmas Eve night
Our Cute little tree, on Christmas Eve night
Thanks to Daniel this was David's most favorite gift!!
So they all sat around in a circle and we first took a few minutes to reflect on What this day means to us and to pray. Then the kids all emptied out their stockings. David was so overly excited with the candy that was coming out of his and I think breakfast for 3 of them consisted of a Kinder surprise egg and licorice...lol The boys were quite pleased with their gifts. They are pretty thankful kids for whatever they receive.
Josh I-Pod Mick I-Pod Danny DSi
Noah Got Woody and Buzz Lightyear
Once everyone was dressed we headed over to see Sarai. Aww her first Christmas I am thankful she is so little and really couldn't be bothered. At first I went in to see her with Josh and Mick. I had her little Christmas dress but she looked to peaceful to bother her by putting it on so we just laid it on top of her and the boys each posed with her to get a picture. I think Sarai had more presents at her bedside from various people in the hospital than anyone else had under the tree! What awesome staff they have there. So Sarai got a visit from each of her brothers and Mommy and Daddy, and not to mention 2 Santa visits.
Daddy & Noah Mick David Josh
Danny and I didn't get ours taken :(
We spent a while with her then we headed to Drayton Valley for the day to spend some time with family and to have an awesome meal or 2 or 3. We arrived there around lunch time for a late breakfast and as soon as we were done eating lunch was being put on the table and a mere 4 hours later a great spread for supper! Man were we ever FULL!!! It was great to be out of the hotel room and for the kids to have some space to play. They had a great time, we all did. The kids played and the adults got to have some time playing their own games, what a blast.
In the latter evening we headed back to the city, I think all the boys were absolutely exhausted. They all slept all the way back, well except for Danny I was quite surprised that he stayed up all day until we got back to the hotel. Once we arrived and everyone was in the room I went back over to the hospital for awhile to visit with our sweet little Princess!
Well that was our Christmas for 2009. Different however we were so blessed to have received what we did, to be together, to be able to spend time with our girl, to spend time with family, to enjoy some great food, but most of all to remember and reflect on this day when our Saviour was born!
Blessings to you all
Labels:
A different Christmas,
Jesus,
Ladues Christmas
Subscribe to:
Posts (Atom)