Friday, September 29, 2006
Bronwyn is doing well. The issue we may have is reminding people that she is still a sick baby. She looks so great and is doing so well that it will be very easy to forget. It is like a mechanic working on your car's engine and Friday afternoon he hands you the keys and says - "I'm not done, but you can take it for the weekend. Just don't drive too fast or go to far and if you see any smoke coming from the engine get out immediately!" So for us coming home is scary but also so exciting.
I get teary eyed when I think of everyone who has helped us so much. All the staff here, all the friends who have called, emailed or visited, all the prayers, our neighbors at home who have taken care of things for us, other parents here who have supported us, oh and the list could go on and on and on. I do know that I could not have managed this far if it wasn't for my husband and my parents. Mom and Dad have done so much - they have basically been at our disposal as we need and have cared for Gavin as only Grandparents can. Mom told me the other night that she and Dad have decided they are not going to have any more kids!
Bronwyn has been on the high end of the recovery scale. One of the nurses today told me that they have not sent a Norwood baby home without a feeding tube in a very very long time. We are so thankful that God has given her the strength that she needed to not only recover but recover with flying colours. We just pray that He will continue to carry her forward and give us peace knowing that He is watching over her.
Many of you have asked about baby Quinn. I have been slow in responding as there has been a fair bit of debate about which treatment option they should pursue. They are concerned that he is not stable enough to continue just waiting for a heart. They are deciding what procedure/surgery option should be attempted. Kim is handling it all very well. Some of the best doctors in the hospital/Canada/the World, are working on the situation and I am confident that God will guide there minds and hands in all that they do. So continue to pray for Quinn and family.
You can also pray for my new little buddy Noah. I can't go into details but he is 10 and just a great little kid. God knows what he needs so we just need to pray that he gets it.
I will keep you all posted about our return home.
Thursday, September 28, 2006
My Door to Peace
by Lavine K. Bailey
Whenever I am troubled, and
Lost in deep despair,
I bundle all my troubles up,
And go to God in prayer.
I tell him I am heartsick
And lost and empty, too,
That my mind is deeply burdened,
And I don't know what to do.
But I know he stilled the tempest,
And calmed the angry sea;
I humbly ask if in his love,
He'll do the same for me.
And then I just keep quiet, and
Think only thoughts of peace:
And if I abide in stillness,
My restless murmurings cease.
Monday, September 25, 2006
Yup - I was a bit of a mess earlier today. Bronwyn lost weight overnight - which is the first time in several days. And it was all my fault. I made a total and complete mess of her medications last night. Yesterday was the first time that I have had to give them to her orally (she pulled her feeding tube out again yesterday - they decided to leave it out). It is a long story but I basically botched it badly and upset her and caused her trauma. She slept a long time over night and didn't eat as much as normal. So the result - weight loss and one upset mommy.
The nurses and staff were all very understanding as they agreed with me that it is best that I blow it while I am with them so I can learn in a protective and professional environment. That is the plus side the down side is that every mistake I make is monitored. It is like learning to drive with a back seat full of formula one race care drivers. In a normal situation you make a mistake you feel awful - but only your husband and a few sympathetic girlfriends know what happened. Here I am explaining to a group of doctors and residents and nurses why I think she lost weight - basically - her mother is a boob!
Oh well - I got over it and we had a pretty good day today. I went down stairs found my good friend Kim, who was holding her baby Quinn, cried on her shoulder a bit and then regrouped. I then came back up and had a good chat with the dietician and she would like to see Bronwyn gain more weight that she has been over the last week. So we will start giving her a bottle a couple times a day with breastmilk and a concentrated formula. This should give her that extra boost to get her really gaining.
I was also sad last night because we were out on a day pass again. Wes dropped us off at the hospital and he and Gavin drove back to Calgary. That was sad for me - but hopefully we will all be back together again here soon. From what I hear it is a good thing we are not in Calgary - I hear the move has made the Childrens' a bit chaotic.
I had a bit of an eerie happening. My mom left me a copy of the latest Sister Triangle (plug - my Aunt Mary and cohorts' little publication for Christian women). I opened it up and saw in the index that there was a poem by Lavine Bailey. Well, at first that freaked me out a bit. For those of you who don't know - Lavine Bailey was my Grandma and she passed away a couple years ago - oh and she was one of my absolute best people ever! I turned to that page and my Aunt had written an introduction explaining that she had found the poem in some old papers of Grandma and Grandpa's. I read the poem and you know it was exactly what I needed to read! She talked of feeling overwhelmed and bundling up her sorrows and trouble and taking them to God. To read her words and to hear her voice in my mind was really touching. I felt very much like God had allowed her to reach down and once again touch my life in a real and meaningful way. She has been such a guide in my life and as you can see she continues to be one still.
Well, I should get on with the laundry. I just took a break from the hospital so I could clean some clothes - I was afraid that they would evict me from the hospital if I didn't clean up a bit!
If only you were all in my head - scary thought! What I mean is that I often think of things that I would say that would interest everyone - but then I sit down and I forget. This log was a bit too long today any how - so maybe a short memory is a blessing.
Saturday, September 23, 2006
It has been quite a topsy turvy couple of days. I won't go into all the details. The long and short is that we are back fully on breast feeding with some bottle feeding as needed - mostly when
I need a break. Bronwyn doesn't have a lot of stamina so she eats a little often. So if I don't get a bit of help I just never sleep. But she is get stronger and is eating for slightly longer times - so hopefully she will start to sleep a bit longer too. She occasionally sleeps for a couple hours so that is a good sign. She hasn't gained weight yet - but the good news is she hasn't lost. And the big worry of fluids (not enough pee) seems to be less of an issue. She is passing urine and pooping quite well.
What a girl eh?
Lately it is the little things that are making my life so much nicer. The night before last I had a nurse who felt it was important to let Bronwyn lead the way and not wake her every three hours to eat whether she wanted to or not. And when the bolos feeds made her spit up because she had too much in her tummy - she discontinued them and did them less frequently. She even went and got a warm blanket to cover Bronwyn and me while I was feeding her. So nice!
Just when I thought a nurse couldn't be any nicer - well... Last night I was dreading the coming night as Bronwyn's new roommate was a little newborn with jaundice. So they had a bed with the bright lights - which was really bright. And every time they put him in for his tanning time he cried and cried and cried. Now of course I can't blame him - I wouldn't like it either - but I was thinking between Bronwyn's eating every hour and a really bright light and a crying neighbor - well I didn't expect to get any sleep at all. Then the nurse came in and asked if I'd like to be moved to a private room - well would I!! She said for the morning - but came back in a minute and said that they could move us right away. The same nurse also convinced me to let her bottle feed Bronwyn a couple times in the night. As a result I had about 6 hours uninterrupted sleep. What an amazing thing!
I am writing from the condo not the hospital and I have with me - Wes, Gavin and Bronwyn. Yes Bronwyn. She is out on a day pass. Pretty exciting eh?
Gavin is terrorizing his daddy and baby sister at the moment. He is trying to give her some ice. We have to take her back by 8pm ish. It is a nice way for me to start getting comfortable with having her at home full time. We have been warned that although she is doing well and they think she will fair well until the next surgery that she could drop dead with very little warning. We are being taught to look for early symptoms of heart failure and we will have an oxygen monitor and a weigh scale to bring home to monitor her daily. We also have about 6 medications that she has to be given several times daily. Do I think she will die before the next surgery? No! I believe that God will care for us and keep us all safe. But I need to be very aware of her status and be ready to react at any moment.
So while it is terrifying having her away from competent medical care, it feel so nice to have my family all together out of the hospital. Wow! What a feeling!
Thank you all for you continued prayers and thoughts we are so thankful for the great support we have received. There is a great swell of love and support that laps over our little family and I assure you we are greatly encouraged by it.
Love you all!
Thursday, September 21, 2006
Bronwyn is a great latcher but eating is very hard for her. She wears out so quickly. She just doesn't' have the stamina that other babies have. She wakes up often and have very brief feeding times. I am still so amazed at how well she is doing but I guess I realized by today that she is along way from being able to be fully dependent on breast feeding. They have continued the bolos feeds but at half the amount as she was throwing up with more. She is such a little trooper. I had a pretty anxious night as I knew she wasn't eating enough and she was hardly peeing.
The team is still very impressed with her progress and we haven't ruled out half breast feeding and half bottle. I would really like not to have to worry about tube feeding her at home. But it may be the best way. And if its the best way I will do it.
It is still a little early to tell. My big concern and anxiety at this point is that the feeding pattern that we establish now will be the feeding pattern that she has at home.
As for sleeping in the hospital - it was great. The other patient in the room was discharged earlier in the evening so I had the room to myself (and Bronwyn). Except that house cleaning came in about 1 am to clean. Fabulous! Super time to clean - with Javex no less.
I am already missing my little boy. But it has been great being at the hospital full time with Bronwyn. I am learning how to do her meds and they have taken her off all the monitors and only check her periodically. So I am getting more comfortable with her care.
Please pray for Quinn and his parents Kim and Ben as they have a meeting tomorrow to re-assess his treatment plan and decide what course of action to take.
Wednesday, September 20, 2006
I came back later ready for a long session of trying to get her to nurse. They expect it to be a bit of challenge since she hasn't been able to nurse since she was born. So I sat down with her and she latched on immediately and started nursing. The nurses were amazed - so was I.
The second time I nursed her she spat up a lot of milk (they were in the process of tube feeding her). The nurse figured that she had nursed well and didn't need the extra tube feeds. They kept her on the periodic feeds through the night. When I got back this morning I nursed her and during her supplementary feed she spat up again. I was worried thinking they would stop the breast feeding. But instead they have decided to see how she does on breast feeding only. This surprised me greatly - as I never thought this would be an option for her. There are many different considerations created by her condition that complicate the nursing process. But they are going to see how she does. If she gains weight and doesn't retain to much fluid she will be able to continue on like a normal baby!
So I am now going to stay over night at the hospital and feed her on demand. I think they will try this for a couple days and see how she does. So Gavin is going to go to Langdon with Grandma and Grandpa to stay with them.
As thrilled as I am that they are giving her a chance to be breast feeding alone - well I can't even describe my level of dread at having to stay at the hospital through the night. It goes against fiber of my being! Oh, well I am a big girl and I'm sure I can do it. I am also not thrilled at not seeing Gavin for a few days.
Hopefully Calgary will let us come down early next week. So much for the quick move I had been excited about earlier. I am just hoping that we out of here before October 1.
So as Kim McConnell would say - The journey continues...
Monday, September 18, 2006
We had a good day today. Gavin woke up looking for his Daddy - tough for me to explain since he doesn't have any clue where home is and why Daddy would leave to go there. So I just tell him Daddy is at work. He really is a cute little man our Gavers! He was trying to get Bronwyn to hold his finger tonight. Fast forward 10 years and he will likely be still saying to her - "Pull my finger."
My Mom was watching Deal or No Deal tonight. I couldn't get over how much Howie Mandel looks like Malcolm McMillan!
They changed Bronwyn's feeding tube so that it deposits food in her stomach - it had been putting the food in her intestine. This is another step on the adjusting to food ladder. This evening she seemed to be tolerating it well. I don't know if they had given her any meds yet. So we just wait and see what tomorrow brings and hopefully she handles it well.
The parking attendants continue to be the friendliest ever. They have really taken us under their wings!
I am tired and if Bronwyn hadn't been facing a new step today I likely wouldn't have gone back tonight - but I am glad I did as she was doing well.
I ask now for prayers for Quinn and his family. The waiting for a heart to come is really trying and difficult. We have been praying that God will be merciful and spare them a long wait. I'd like to ask those of you who pray to keep praying for Quinn. Kim worded it so sweetly on her web page. She said that is we all get busy and pray maybe God would speed up the paperwork. So please pray!
Sunday, September 17, 2006
I pray that you will hold my children safe in your hands. Keep evil and harm far from them. Help them to know and love you as they grow. Give them hearts that will yearn for what is right and good.
Help me to learn. Help me learn to trust that you will care for them. Help me learn that your way is always the best way. Help me to learn to be the kind of mother that they need me to be.
Give us the strength as parents to do what is right. Give us the wisdom to be good examples to them. Give us the insight to love them in a way that shows them the nature of your love.
Strengthen their hearts. Give them courage to face any of the hardships that life may throw their way.
I pray, dear God, that the tears I cry in time of sadness will give way to tears of joy.
Above all I am thankful. So very thankful. You have blessed us with such wonderful children. They couldn't be more perfect. I can't even remember life before they arrived - it is a dim hazy memory. I know I was happy but it was a different type of happiness - a less complete happiness.
You have given us such great joy. I pray that you give us strength and patience when we need it most. Help us not only endure times of trial but help us see the good that surrounds us always.
We thank you for your care and love - In Jesus name - Amen
Saturday, September 16, 2006
We met Tom and the kids at the hospital today. It was the first time Josh & Kennedy could see Bronwyn as they were to young to go into the NICU. Jared has seen her a couple times. They all got to hold her. They were so sweet with her - I am so proud of those kids! Bronwyn will get a chance to meet her other cousins - Robbie & Carissa when we get to Calgary - although I doubt I will let them hold her.
Wes had some quality time with his girl. I truly believe that Bronwyn has a very similar disposition to her Dad. She is very observant and alert, but very placid and calm. The nurses all like to work with her because she is such a quiet and sweet baby.
Gavin has also enjoyed having Daddy home. He has taken to calling his Grandma "Betty" - I think its from hearing Grandpa talk with Mom. He calls his Grandpa "Pops." He gets up in the morning and starts saying "Pops? Pops?" I have to restrain him from waking up his Grandparents.
I must confess that I am getting extremely anxious to get home. Bronwyn is stable enough to move and Calgary could work on the feeding issues that we are dealing with now. But I am trying to be patient. Those of you who know me will understand that this is likely the biggest test that I have been through. I am not good at waiting. I keep reminding myself that if we are still here there is a good reason. I believe that we will be moved when it is the best thing for Bronwyn - God will make sure of that. This is likely a test of my ability to trust God and wait for things to happen in his time. This is just not one of my strengths!!
I wasn't going to do a post tonight - but I had a couple nice picts to put up (but I can't post them for some reason) - so I thought I'd blab on a bit. That should be enough for now.
Friday, September 15, 2006
We had a busy day today and for the first time in a long time it wasn't Bronwyn who made it busy. Wes drove up this morning and just after he arrived Hope & Kids and Melanie and Cadence arrived. They drove up just to come see us! How nice eh? Cadence who is only 2 months old did very well I guess. I have to confess I get such a bang out of Dawson - Hope and Darcy's youngest. He is so much fun. He apparently has no fear - doesn't mind falling over a fair bit and will by the looks of it put almost anything in his mouth! And he's only 15 years old - JUST Kidding - he's 10 months.
Wes and I went over with Hope & Mel (and kids) to the hospital to show off our sweet girl. She is doing well today - they have increased her feeds again. She is apparently doing well and gaining weight well so they want to give her as much as she will tolerate. She is basically back up to her birth weight - a great milestone. It seems shocking to be pleased to see your child reach her birth weight a month after she was born - but she has been through an awful lot and it is a very good sign.
I am so happy to have Wes back for the weekend. We are really hoping to be returning home early next week - but I was really hoping to be returning the early part of last week! So we will just wait and see. Gavin was also really happy to see his Dad. He is sitting on my lap at the moment (fun typing) looking at pictures of his baby sister and our family.
Well - this is getting harder to do with the little man on my lap - so this is all for now.
Thursday, September 14, 2006
I had quite a few interesting experiences today and a couple nice surprises. I found out the blood clot that was in Bronwyn's leg is now gone - so I won't have to learn how to give her the blood thinner to treat it. It was the only medication that couldn't be given orally so I am glad not to have to do this.
While at the hospital I had a quick visit from Shirley and a bit later from Diesta and Laurel McMillan - they were up for Laurel's check up and popped in to see me (sorry if I misspelled the names). It was so nice to see them.
Gavin is doing great - his favourite thing to do (other than terrorizing his Grandparents) is to colour on the furniture. Apparently the wood finish on the furniture is a bit boring. His Grandma says its because he is a natural born artist. I would just like to look at something in the house without seeing crayon on it! He went to the park today even though it was cold and wet. He loves wearing his rubber boots and playing in puddles.
This evening Mom and I went to the hospital to see Bronwyn and took our neighbor - Selena. She is a little lady who is originally from Poland. She collects all sorts of nicnacs and stuff and she also collects bottles and putzes around the condo complex a lot. She is very friendly and has been very interested in Bronwyn and how she is doing. She enjoyed visiting our girl - I think. We visited as we drove over and we found out that she has a PHD in Chemistry. She came to Canada to do Research at the University of Lethbridge and then moved to the U of A. She is quite an interesting person really. We have pretty interesting neighbors here - they have been very good to us.
I was thinking today it might be fun to share with those of you who are reading our updates who else is keeping up. I have been absolutely amazed at how many people all over the world are reading about our adventures here. It has given me a bit of stage fright - but it has been an amazing support. We have all sorts of friends from Calgary - Church friends, work friends, old friends, family, new friends etc. There are friends and family in Edmonton, Camrose, Estevan, Saskatoon, Vancouver and Vancouver Island, Winnipeg, Carmen, Thunderbay, New York, Philadelphia, Florida, England, Botswana, Zimbabwe and all sort of places in between.
I am sure that many of you will never know how much the support - blog comments, emails, phone calls, and messages through family - have helped. I pray that most of you will never be in a situation like this but if you have you understand how the love and prayers of caring friends can carry you through some dark times.
Wednesday, September 13, 2006
Today I went to see my lovely little girl - leaving my lovely little boy at home with his Grandparents. Gavin has so much fun with his Grandma - she is just the best! When I got to the hospital all seemed well - Bronwyn was going to be moved to another room. The room she was in yesterday was an intermediate room - a bit more monitoring etc. It is a segway between the NICU and a normal hospital room.
I was holding Bronwyn and she pulled out her feeding tube. She was so fast! I really couldn't be too upset since I had set a bad example for her yesterday. The nurse had to completely pull it out as it was too far out to rescue. Once she removed it Bronwyn smiled and looked a bit smug as she snuggled in and went back to sleep. So this afternoon they had to insert a new tube.
She was resting well when I went last night - she is doing well with her food so far.
I was informed this morning that we wont be returning to Calgary until Monday at the soonest. The Stollery is ready to send us but the Children's is in the middle of their move and they aren't ready to receive us. So we will wait here and continue to watch Bronwyn's progress.
I spent some time talking to the nurse practicioner for the Cardiac ward about what we can expect when we get Bronwyn home. Like everything else it is very dependent on how Bronwyn does and what she requires individually. I was able to at least construct a fairly realistic picture of what life will look like though. How difficult it will be is up to Bronwyn I guess. I have a better idea of the care aspect - what medications she will be on and what some of the key health issues will be. As for how she will be fed and how much activity she can endure that is all up in the air.
For now things are going well and that is all I need to know. I will set the worries about tomorrow aside so they can be dealt with tomorrow.
Tuesday, September 12, 2006
I arrived today at the NICU to discover that Bronwyn was being moved upstairs to the Cardiac ward. She got settled in to her new location and is doing very well. There has been a bit of a complication. OK. Now before I tell this story I need to explain something first.
Before I left work I promised some of my co-workers that I would behave myself while in the hospital. Now in my defense I am not actually in the hospital now - I am just a visitor!
Alright - so while they were doing the paper work for her transfer the nurse asked me to hold her so that she would stay calm so she could get everything organized. So I picked her up and sat down in a chair. I didn't notice that her IV lines had been taped to the edge of the bed so they wouldn't pull. A few minutes later I realized that her IV (it is actually called a pick line) was coming out of her head. I told the nurse and well... Oops! I thought they would have to put another one in - but thankfully this morning they had just changed her prescriptions to be all oral and not Interveinous. The only thing going in the IV was her fluids and fats. They have been slowly building up her oral feeds while dropping the other fluids.
They decided they would speed up the process of oral feeds and see if she tolerates it before they reinstall an IV.
Tonight she was vomiting a bit - so I hope that is just a temporary thing. If it is a problem with the feeds then they can put in a temporary IV and start her on fluids again. I feel bad because I caused the issue! Oh, well my kids are going to have to get used to the fact that their mother is a clutz. I am sure they will love me anyway.
Gavin is doing well. He just loves his Grandparents. You can see in the pictures that Bronwyn is working on her relationship with her Grandparents also. He is upstairs in the play pen talking away at the moment. He was asleep but now he's not.
They are still saying that they hope we will be moved to Calgary by the end of the week. But we are still waiting and watching Bronwyn continue to recover.
Monday, September 11, 2006
I don't have much to report today. They did an x-ray of Bronwyn's chest this morning and it came back negative for fluid - which is great news. We are all doing fine. Just plugging along. Waiting for word on when we will be transferred home.
I am tired tonight but feeling quite happy as everyone seems to be doing well - I do miss my husband though. It was so wonderful that he could be here so long.
Sunday, September 10, 2006
It has been so hard for me not to get quite excited about being able to return home. I am working very hard at not getting my hopes up to high because everything can change overnight - but...
My girl is looking better and better - her cheeks are filling out and she actually looks like a baby should - a little plump in the face. When I look at her now it is so hard to believe that she has something so seriously wrong. They have corrected the main problem but she is still not out of the woods and her heart isn't going to function strongly until the completion of the third surgery. But having said that she is so much better than she was and it just warms my heart. She is a real sweet girl. She was a bit fussy tonight - her Grandma was holding her and she was showing off her crying for Grandma.
The have been steadily increasing the amount of breast milk she is getting and at the same time reducing the IV fluids. The plan is to get her slowly completely on oral food rather than the IV. Every baby step forward is a great milestone for us.
Gavin was just soooo excited today when he discovered that his Grandparents had arrived during his nap. "Mama, Pop" He was saying a very excited way. He immediately started playing hide and seek with Grandma - he has a great memory for that type of thing. Does he remember that he isn't supposed to play with the plug-ins or the vcr? NO! But he is two and he has done really well.
Wes has returned to Calgary as he is going back to work tomorrow. Wes would often bring Gavin home in the afternoon while I stayed with Bronwyn and he would take a nap at the same time as Gavs. So we figured he should tell his boss that he has grown accustom to afternoon naps and would be in his truck snoozing between 2 and 3 pm. Ha.
Well I am praying that my girl keeps doing well and that a bed opens in Calgary soon so we can get our family back to home base. I didn't realize just how much I miss Calgary and all our friends and family there until I realized that returning soon might be a reality.
Good night and God Bless.
Saturday, September 09, 2006
I don't have much to report today. We are still just waiting to see how Bronwyn does with her feeds. She was still doing quite well - so we are feeling pretty optimistic but we will be happier when we are given word that she is out of the woods (at least cleared on the fluid issue).
We have been told that we will likely be transferred back to Calgary mid next week. Don't hold me to this though. This is completely dependent on beds and Bronwyn's stability.
I wanted to share a couple pictures I took today. I put Gavin's finger in Bronwyn's hand. He was pretty pleased with that - for a short time. He tried to pull his finger back but she had a fairly strong grip on it. He then looked at me and pointed at his finger and said "Off, off".
We had a super nice visit with Andrea and Mike Reid this evening. They came up from Calgary to see us. It was just great to get to visit with close friends. They seemed pretty impressed with our girl (and our son too). Andrea is the first person beside Wes and me to hold Bronwyn (well except the hospital staff).
I am trying not to get to excited but I am thrilled at the idea that we could be home by this time next week! I am so excited because I was sure that I would have to miss the shower for Melanie and her new baby Cadence - but who knows I may make it.
Friday, September 08, 2006
She is finally able to wear clothes! They have taken off all the IVs that were in her legs or arms so now they can put clothing on her. Yep - our girl was naked except her diaper for the first 3 weeks of her life. Our son would love to go through life in just a diaper - but alas it is less acceptable for an almost 2 year old.
I felt very somber on my drive home this evening. I ran into Melissa's Mom in the hallway. I saw her the other day and the Drs. Were having some issues managing the thinness/clotting of her blood. Tonight she was being comforted by a friend and had been crying. I guess Melissa threw-up her feeding tube. It is amazing how a quick turn of events can change a mother's perspective. I felt heart sick for her and I pray that Melissa gets a heart soon. The problem with waiting for a heart is that they have to keep the body well enough that it will manage and continue to thrive once they replace the heart.
Quinn had a procedure yesterday to remove a blockage that was reducing his oxygen saturations to his body. I ran into his Mom, Kim, today and he was doing much better today. For now he is stable again. Kim is managing so well - the waiting is such a horrible thing and she is showing incredible pluck with every turn of events.
One of the things I was worried about when we first arrived at the Stollery was that there may be some friction between parents if their children were recuperating at different rates. I was concerned that there would be a natural jealousy that would cause parents to resent others if their child was getting better faster. I think I was even worried about myself. But this isn't the case - I quickly realized that this is a very different place (or at least the people I have rubbed shoulders with are different). Others are genuinely happy for you when your child does well and they are equally worried for you when your child takes a turn for the worse. I am so happy when I hear good news about another baby or child. As for the bad news - trust me - once you have gone through this type of anxiety you feel keenly for any other parent who is in a similar or worse situation. The support we have received from other parents has been great!
Enough introspection. This has been a bit somber I think.
So tonight my prayer request is that both Quinn & Melissa will receive hearts very soon and that Bronwyn will do well on with the feeding.
Wednesday, September 06, 2006
Lock 'em up!!
As I write this Gavin is running around the living room. You can get a kid to bed but it doesn't mean that you can keep him there!
Bronwyn had a bad night last night - she didn't get much sleep and she was a bit upset. They have been changing her meds a bit - so it was likely a result of that. They have reduced her morphine - apparently she likes her morphine - who can blame her. She slept a lot today and was much better by this evening. So we are just praying she has a quite night. I was very heartened today after having a chat with the dietician who is in charge of Bronwyn's inputs. They have upped her caloric intake substantially. She has been looking very lean lately - this is why it was so upsetting to me that they have delayed feeding her. The dietician is confident that she will start gaining weight and isn't too worried about her weight at this point - although she is aware it is an issue.
The fluid around her lung was looking good on this morning's x-ray. They may try feeding her again tomorrow. Best case this goes well, worst case they discover what is causing the fluid.
Wes was carrying Gavin as we left the NICU earlier this afternoon. As we walked through the ward Gavin was saying "Bye" to all the nurses and blowing kisses.
Brownyn was smiling in her sleep while I was holding her this evening. One of the nurses told me that last night a staff member walked by and said "Oh, isn't she just gorgeous", and Bronwyn broke into a big smile. She knows she's cute! We might be in trouble a few years down the road.
Quick update on baby Quinn. They are watching him closely - concerned about his overall health. We keep praying that he will get a heart soon - the sooner he gets one the better his recovery will be.
Thanks again for all the encouragement, comments, notes and well plain old love you are sending our way. We have a new appreciation for our friends and family. This experience has taught us the value of community. So thanks again!
Tuesday, September 05, 2006
In fact we were told today that they are discussing moving her to Calgary - the surgeon has approved the move so we will likely be coming back to Calgary fairly soon. They don't know when it will be - it could be anytime. This has blown us away. We were told to expect to be here until the end of September - and that would be a good recovery. So we are just shocked that they are considering moving her so soon. She is after all only 3 weeks old today. And it hasn't even been 2 weeks since her surgery.
I was concerned that they haven't resolved this fluid complication yet and how that would be handled if she was moved. I have been assured that this is a common enough side effect from all types of surgeries that the NICU in Calgary will be well aware of how to treat it.
I held my girl for about an hour this evening (her Dad got to hold her for quite a long time earlier - while I chased Gavin around the hospital). She lay in my arms with her little hand in a loose fist while pressed up against her chin. She looked like she was in deep thought - but she was sleeping. It was a very precious moment for me. The very idea that we might be able to return to Calgary soon has really bolstered my spirits - not that life here has been bad - it is just so much nicer to be at home.
As I drove back to the condo there was a beautiful orange moon in the sky half masked by the clouds. I know God has been with us and has kept our girl (and the rest of us) safe from harm. But as I drove home I really felt truly blessed and again more confident in His control over everything in this world. It is hard as a Mom not to be emotionally effected by all the ups and downs - but tonight I am trying to focus on all that God has done for us. The nurse looking after Bronwyn last night and tonight told me that she was shocked when she looked through her chart. She was searching to see what complications and issues she had and was surprised by how little there was in the chart. She has sailed through many of the issues that they expect after this type of surgery.
Are we out of the woods? No. Are we optimistic and gosh darn proud of our girl? YEAH.
We are also extremely proud of our little Gavers too. We often have nursing staff and other staff telling us how cute he is and how well behaved he is.
Monday, September 04, 2006
This is a picture of Gavin playing on one of the computers at the hospital. Shortly after he started playing on it the computer stopped functioning - who knows why! He has been a very good and patient boy with all this hospital stuff.
We had quite a turbulent day today. When we arrived at the hospital there was a doctor there ready to do a procedure on Bronwyn. We left them to do what they needed to do and when we returned they were still busy with her. Her main IV line had come out during the procedure so they needed to redo that. This took quite a long time and another doctor had to come and help him. I was informed that our daughter is very lucky as the doctor that came to assist is super good at inserting IVs and he was supposed to be on vacation but popped in for an hour or so. We were just lucky he was there to help out.
They resolved all their issues eventually and the test results returned with fairly good news. It seems for now that what they were concerned about isn't happening to Bronwyn. Good news. I called in this evening and they had to do a blood transfusion - the nurse figured it may be a bi-product of the activity today. I hope this is the case. Any how, we will wait to see what the morning brings - hopefully her x-rays are positive.
I was quite upset today but left with more hope. They are monitoring her condition so carefully and are very quick to react to any symptoms that occur. This is great to know and I am pleased that they have a course of action for the all the changes in her status. They are looking after my baby very well. While this is a comfort it is still a real roller coaster for me.
We are happy for now and I am hopeful tomorrow's news will show that Bronwyn is back on the road to recovery.
Sunday, September 03, 2006
I have long been aware that after the surgery is when the real work would start. This news is not horrible and they are on top of the situation. It is just amazing how fragile my sense of optimism and security can be some days. I get one piece of bad news and my world starts to crumble. This is when my husband is my best gift. He is great about staying calm and helping me approach the situation calmly. When you first get information it is hard to know what to take seriously and what is just a complication. So we ask a lot of questions and try to get a sense of where this is on the panic scale. We think at this point that this one is not high on this scale - but if the situation goes untreated it could be.
I am disappointed that we have had a set back as it will affect the schedule. Why should I expect this to go on a schedule? I've never been able to get things at work to stick to a schedule and that is just advertising!
Gavin is not 100% but he isn't as bad as I thought he might be last night at one point. He is refusing to go to bed right now the little monster.
Good night and God bless you all.
Saturday, September 02, 2006
I wasn't going to post a blog today because I didn't expect to have any news to report. But when we arrived at the hospital earlier in the day the nurse told us that the doctor's were discussing starting Bronwyn on breast milk today. We thought we'd have to wait for several days to get to this stage. When we went again later in the day she was already started on the breast milk. It is being fed to her through a tube in her nose to her stomach - and for now it is a very small amount.
So now we are hoping that she does well with this stage. We are thrilled that she is doing so well and she seems to be getting this done when she needs them. She wants food so they start with food.
Gavin is actually not feeling well this evening. He had a bit of a fever but it came down when we gave him some motrin. I am hoping it is nothing major and that he is just perking tomorrow.
Tomorrow we should hopefully find out how she is tolerating food.
I just wanted to mention that my best friend Alison had a baby boy the night before last. They have named his Austin (I believe - I called her mom for info and haven't actually talked to Ali). So congrats to Darren, Ali & Aleya.
Friday, September 01, 2006
Today Daddy held Bronwyn. He held her for 20 minutes or so. We then had to leave the PICU as they were doing a procedure on someone else's child. The unit was closed for an hour or so and shortly after that they moved Bronwyn to the NICU. This is a big step for us as this means that she is stable and not critical enough to stay in the PICU.
What a great feeling to have Wes holding our daughter! We had about a half an hour after she was born where we were able to hold her and we haven't been able to hold her since. This was a big step for both of us. Bronwyn loves being held - she snuggles in and goes to sleep. She was very content in her Daddy's arms. Wow that warmed her mother's heart.
As for our other off-spring, Master Davis, he is all about Daddy these days. Mommy is SO NOT COOL! But he still isn't above falling asleep in his Mommy's arms if need be. He came in with Wes the other day when I was holding Bronwyn - he was quite confused by that and kept pointing at the bed and saying Baby. I think he felt that she should be where she normally was.
We will see what tomorrow holds for our girl - hopefully she just continues to improve. I may not do daily posts soon if her progress is slow but steady. I don't want to go overboard with this Blog thing. Of course I could fill pages of Gavin's antics - but he'd likely be embarrassed by all the attention (not likely).
Although we have been facing many struggles lately I wouldn't trade it for the world. I am so happy with my family. God has blessed my life so richly. Bronwyn absolutely belongs with us and we couldn't be happier with her and her older brother. The future holds many joys for both my children and Wes and I get to sit back and enjoy the ride.
Oh, I almost forgot - we have an update on Quinn. There was another baby that was ahead of Quinn in the line for getting a heart. He got a heart yesterday, I spoke to his elated Grandpa this morning. So now Quinn is at the top of the list. So keep praying for a heart for him.