ugh.....Rachel has a cold now. No surprise. Every chance she gets, Abigail is hugging and coo-ing over her baby sister...and coughing in her face. She really loves her sister - it is sweet to see. Our older two are fine now - they had croupy coughs and lots of snot - but Rachel has enough to deal with without having a cold yet too. It is hard - she's throwing up alot of her food. I know they say it usually looks like more than it really is. But this is yucky. Sometimes I wonder if it's hard now, what will it be like when her body starts to fail her.
One day at a time..
We have received a huge outpouring of support by email, calls, and cards!! Thank-you so much for caring for us so well. I want you to know that I am reading everything and they are an incredible means of encouragement for us. I have been trying until now to respond to most, if not all your emails. But I am finding that my family is getting alot less of me than they should. So, please don't be discouraged if you do not hear from me - I would love to respond but it may not happen for awhile. Thank-you so much for understanding!
Since January when we first heard the news about Rachel, I have very rarely picked up a book or wanted to watch a movie, or do anything that I normally found entertaining. (although I did continue knitting blankets for Rachel). I consider myself a pretty avid reader. Dave and I have often chosen to spend the evening reading together - it is probably one of our faveorite things to do together. If we go out on a date, we invariably find ourselves wandering through Chapters or the Library. But with news of Rachel's 'abnormalities' and the unknown future looming large, I found it so hard to lose myself in a book the way I normally could. She was always with me. I couldn't get away. I read the Bible. I read a few books related to our situation but that was it.
Last week I picked up my first novel. A few days ago, I picked up a book that had me completely hooked from the first page. It's called "Half the Sky" by Nicholas D. Kristof and Sheryl WuDunn. For those of you who liked "Three Cups of Tea", you will be just as challenged and inspired by this one. I'm roughly half way through the chapter entitled "Why Women die in childbirth". This particularly interests me because during my labour with Abigail, I thought it was quite possible to die from childbirth! (some of you know that feeling) And yes, it is perhaps a bit strange that I want to 'relax' with such a serious book..(about the injustices/oppression of women in our world)
But I was thinking....Isn't it good that there are reprieves in our grieving process? Even just the need to do day to day tasks - like dishes and laundry - can be life savers. I expect that will be the case after Rachel is gone too. Dave is glad that I am reading again too! I guess it was a bit disconcerting to see me spend a lot of time just staring out the window. I have to say it was equally maddening for me to see him distract himself more easily in a game or book. We men and women have different ways of grieving and sometimes it is really hard to respect each other in this.
But for now I am glad for the reprieve, for this second time of waiting. Rachel is here with us, her body warm against ours. The most difficult time is still coming. I wonder sometimes how Dave and I will both grieve then and if it will be tough to stay connected. But I am glad for the difficulties we have already faced in our marriage - they have prepared us for this and I know that in the end we will be ok. There is still lots of laughter in our house and that too has been a wonderful means of reprieve!
I gave Abigail her new doll blanket today - she's pretty thrilled as you can see. I knit it with the left over yarn from Rachel's blanket. Tonight Dave and I were reminiscing about what Ethan and Abigail were like as babies. I looked back in their baby books and found out that Abigail also had lots of dark hair, like Rachel. I had forgotten that! What a thrill it was to take home our babies - healthy as far as we knew - and to embark on that new journey of parenthood. Yes, the nights were rough (who are we kidding - Ethan was a little terror - I think I banged his head on the door frames alot that first month, stumbling around in the dark trying to get him to just STOP crying...) oh- I should mention that I didn't bang his head on purpose. .. But even then, we didn't really mind the lack of sleep. Because we were madly in love.
It is hard not to compare them with Rachel. By this time our older two were more than twice her weight. We feel thankful (and relieved) that we could experience having healthy babies - we know not everyone can. So much pain in the world - Today I heard of how a 3 year old boy fell into the gap between the c-train and the train platform and died. He was running along the track with his Grandfather. His Grandfather needed an interpreter so I assume He didn't speak English. My heart can barely stand the senselessness of that - the horror. A few days ago, I also heard of a young boy badly injured in a quad accident, a nephew of someone in our church. Oh God...Where are you??!!!
Steven Curtis Chapman, whose daughter died in a tragic accident, sings "Jesus will meet you there." I know that others have said the same. I want to believe this. I want to know that you, God WILL be there. I say that I trust you.....But just in case, I will hold a little tighter to my two healthy children. I scheme - maybe we should risk going through another pregnancy because what if Ethan or Abigail die too? (of course not now, but later on down the road) I start to think of all the ways that I can protect them better. But I can't make a healthy baby grow in me any more than I can change the weather and I can't hover around my children forever. (and it's probably not a good idea to try)
As I was reminiscing today, I came across something I shared on Mother's Day in church shortly after Ethan's birth. Then too, I was struggling with these questions, "Can I really trust God with my children? Does He really have their best at heart, as He says He does?" This is some of what I shared...
"Who is this little person named Ethan? What will his story be? One thing that is already clear is that it will include some suffering and some pain. Right from the time I heard Ethan's first strong angry cry, I realized that I can not protect him from pain. First there is birth itself, then immunizations, gas pains, cold germs. Even our own home was not a safe place when the renters downstairs started smoking pot. As a mother, this fact is hard to come to grips with. My child will experience pain in this world. Of course I know that the things I mentioned are only minor. But I will need to choose now to trust my Father's designs in his life as greater pains come. Because sometimes suffering will be necessary. And because he is mine but he is also not mine. (and He loves Ethan evan more than I can possibly love him myself)
Ethan, someone once said, "In this world, you will have trouble but I have overcome the world." And I hope that you will come to love and trust this person. And that you will look on him with the delight and adoration that you give me now. Ethan, your story will include suffering but there will also be much beauty. I hope that God gives you a wild imagination* and eyes to see the unseen. You are loved and you are wanted. I am so thrilled that I have the priviledge of being your mother."
Ethan, Abigail, and Rachel - for as many days as I am given with each of you - it is a great priviledge and blessing to be your mother. God, help me to daily surrender them into your Wise care. Use the difficulties in their life to produce good character in them - and to remind them of their need for you. Don't waste suffering in their lives - work good from it - so that they will know that You are God. There will be times when they will doubt your love for them - things will happen that won't make sense - but you are Good and you are faithful and you really do have our best at heart. oh, but it is so hard to see that on this side of heaven. Help us believe.
*i think this prayer was answered - he definetly has a wild imagination!!
Rachel is five weeks old. That's alot of preemie diapers! Yesterday we had another apointment with her Doctors. Rachel's oxygen levels were actually a bit higher than the last few weeks - they were in the 60's this time. The little imp even gained 3 ounces! Her oxygen levels are probably a bit higher because her milk intake has increased a bit. (dehydration tends to decrease our oxygen carrying capacity.) Because she is doing so well, we're going to stretch out our weekly visits to every two weeks. At the next apointment, we are also planning to do another echocardiagram. There likely won't be anything different - it is very hard to tell this way whether those collateral arteries are really ducts or not - but it may be worth checking anyway.
Something we wonder about is our plans for summer! We had always thought that at least by August we would be back to four again. Dave arranged to take holidays in August and I even wondered if I would go crazy waiting through summer before we could go somewhere. Now it turns out that Rachel may be around much longer than we expected! We have very mixed feelings. This may sound strange but one moment I am desperately wishing that what is inevitable would just happen already - this waiting is so hard - and then at other moments, I am desperate to hold on to her. We had such conflicting feelings this morning when we heard her oxygen levels were up.
We had originally planned to go to "Faith's Lodge", a place in Wisconsin for families who have lost children. But it turns out that they are booked until November. So, we are now toying with the idea of going to Vancouver! We have lived in Calgary for almost five years and have never gone west. About time, hey? We talked to Rachel's doctors about some of our hesitation in doing trips with her. They tell us that we shouldn't rule out taking her with us. We could take along letters from them so that if we end up at a Hospital, we wouldn't have to explain everything ourselves. We still think we would like to save that big trip for after Rachel leaves us, so that the four of us can process and have some healing time together. But it was encouraging in a sense to know that we can still live life fairly 'normally' with her.
Rachel is still having trouble with mucus. Last night I sat with her for almost two hours, trying to help her with my suction bulbs. So far she still manages to work it out on her own, in the process puking her last meal out of her nose and mouth too. I hate it and that distressed look in her eyes as she gags on it...
This last week has been really tough sleep-wise. On top of caring for Rachel, Ethan and Abigail had croupy coughs so that means a few nightly trips to a steamy bathroom etc... And they are little grumps by day. Please pray that we would have supernatural patience because my supply is very low. Thank-you!!
Rachel is still 4 pounds. She is one month old and she is lighter than she was the day she was born. She wears the same clothes she did one month ago...and they are no smaller on her today. Her legs and arms are so thin - she has no extra fat. She is not filling out in the ways that other babies do. These things hit home for me in a new way tonight and it makes me sad to look at my baby girl and know that her body is not growing. It is like she is barely holding on to this world. But she is warm in my arms now. She breathes and makes a contented sigh because she has eaten and she knows love. I know I should lay her down but I want to sit here for awhile...
(typed with one hand at 2am)
As some of you know, my Mom and Grandma were out here for 5 days. It was a pretty special time. I really enjoyed having their company during the dreary weather days. It was wonderful that our kids could get to know their great-grandmother. I also learned some things about my own great-grandmother. She miscarried 2 children after having four. Both were boys, one at five months along, and the other at 7 months. My Grandma remembers burying the second one in a shoebox. He was much the same size as Rachel, a little doll. Hearing that made me wish she were here so I could ask her about that experience.
Here's a picture of 4 generations of girls. (and one very silly boy)
Happy Father's Day David! I'm so glad Rachel is still here to celebrate with you - that is an unexpected blessing! You are a wonderful Father and I am so glad I can journey this road of parenthood with you!
This morning the kids and I gave Dave his present - chocolates (no surprise), a picture frame that says 'Daddy and me' for a picture of him and Rachel to go in His office, and a book called "I shall not Hate", written by a Doctor in Gaza whose daughters were killed by Israeli shelling. Dave preached this morning - his first sermon since Rachel was born. I wish we could have been there - Rachel was fussy last night plus Abigail had her first experience with Croup so I was up till 5:30am. (groan) I am excited though about some of the themes Dave talked about and we're both hoping that Dave can add something to the blog on Tuesday. Themes and questions that have been on our mind since we first found out the news about Rachel. If God is our Father, why doesn't he always heal? What is a true definition of health? What is the value of a person? so stay tuned.... in the meantime, here's a teaser/quote...
"In reality there is no such thing as a non-handicapped life. But ideas of health set up by society and the capable condemn a certain group of people to be called handicapped. Our society arbitrarily defines health as the capacity for work and a capacity for enjoyment, but true health is something quite different. True health is the strength to live, the strength to suffer, the strength to die. Health is not a condition of my body, it is the power of my soul to cope with the varying conditions of my body."Jurgen Moltmann
We are doing well for the most part. Rachel had a really bad time with mucus the other day and it lasted for quite awhile. That's really tough. Our mother/father hearts hurt to see our child uncomfortable. I have wondered sometimes what it would be like if Rachel were suffering all the time. I am so relieved and thankful that this is not the case. We are often asked, "Does she cry?" Yes, she does. It is much quieter than other babies but she does let us know she's unhappy! She has been fussing more in the past few days. I feel as though I want her to be in my sight all the time, in case she is mucousy. We jump at every grunt and peep at night too because when she is hungry we want to act quickly. There have been many times when we have finally had the bottle all ready just to have her fall back to sleep in exhaustion. There are alot of things about this that we would feel even with a "healthy" baby - like exhaustion and guilt for saying yet again to the other kids "No, I can't do that now. I'm busy." We are settling into a rythmn here of life with three kids and it is busy. We are glad for it. At the same time we are preparing our hearts for the changes that are coming.
We have been asked why Rachel is still with us. Some have suggested that the Doctors might be wrong... some even go so far as to say "She'll be fine. She'll make it - I just know it." We have been chastised for not believing enough that she will be okay. Unfortunately, these comments are neither helpful right now or true. We believe that God is the Giver of Life and He holds her life in His hands and He may extend her life as He wills it.....But we do not believe that God has ever promised us that she will be healed - and neither do we believe in brushing off medical expertise. We feel that our main job right now is to prepare for Rachel's death. Please respect us in this work. And it is tough work.
So, why is she still alive? The answer is not a simple one. Medically speaking - there are explanations for why this might be - for one, what doctors thought were collateral arteries may be ducts (please read post from last weeks Dr. apointment). One of the predictions while I was pregnant was that she would live 2 weeks - 2 months. We are still within that range. But beyond that - like we have said - her life is in her Father's hands. Even our Doctors admit that there is a large element of the unknown. We know what is going on physically in her body but there is another piece to all of this. So, the real answer is that we don't know. That unknown is hard.
As to the question of healing, I want to share something that we read early on in this journey. In a book entitled Shaming the Strong: The Challenge of an Unborn Life, author Sarah Williams writes deeply and well about their experience of choosing to carry a child whom they knew would die. At one point she recounts her experience with one well meaning woman who kept on encouraging - or pressuring - her to pray for and expect healing for their baby. After a time, Sarah could remain silent no longer. This is what she said, " I know it may sound strange but I see this pregnancy like two big roads. Each road has a large sign over it and i have to decide which route to take. The first one says "Healing" in big letters. The other sign is a bit more difficult to read, but I think it says "God Himself". This path doesn't look nearly so inviting. It's dark and unknown. I don't want to spend the precious time I have with the baby searching for healing. I want to spend it seeking God and loving the baby as she is. Paul and I do not feel that this baby will live and we trust that we will find God in the pain, not in the avoidance of it."
I haven't written for awhile - both because things have been a bit crazy around here and also because I just haven't known what to write. I was feeling pretty down yesterday and the gloomy weather isn't helping. I received a few emails from people just letting me know they noticed I hadn't written lately and wondered how we're doing. Thank-you!! I have such good friends. It's quite amazing how many people have been following our story...thank-you for your notes of encouragement and most importantly, for your prayers! I know that God is carrying us. Rachel is still doing about the same. We had another apointment with the Cardiologist yesterday. Her oxygen saturation levels are still about the same - in the 50th percentile. She is still 4 pounds. We also measured her length. She is 17.5 inches long. I realized last week sometime that we never did hear what her birth length was and it turns out that it wasn't even done. We had given instructions for Rachel to be given to us as soon as possible after birth. Just a small thing but I would have liked to know this anyway. This morning I got a call from a nurse who told me there was a request from Edmonton for her Metabolic screening to be done. (she was not aware that this had been waved because of the circumstance). It was strange to get that call and to explain the situation yet again. I'll try and write some more later. Just wanted to let you know that we are doing alright. My Mom and Grandma are out here until tomorrow and that's been wonderful. Dave and I are on our way out for a supper date with Rachel! It will be so good to be out of the house for awhile...
Here's a picture of our little sweet pea. Isn't she adorable?
And even though this blog is dedicated to Rachel, I want to share a few pictures of her big brother and sister. They can sometimes get forgotten and the longer that Rachel is here, I am realizing how important it is to enjoy and treasure time with them too!! When I look at this picture of Abigail, I can't help wondering what Rachel's experience in heaven will be like... I love imagining Rachel as a little Abigail - running and laughing with pure joy, studying the flowers...
And I am also adding a picture of Ethan and his picture of a whale, his faveorite animal. He's a pretty good artist, isn't he? He drew the same thing on our wall once. I like this one better!
Ethan and Abigail would also like to say thank-you to all the kids out there that are praying for baby Rachel. Thank-you for loving our little sister too!
Rachel made three weeks yesterday! Thank-you God for the time you are giving us with her and for the Grace for each day. There are no changes that we can tell - Rachel is still doing well. We love the cute grunts she makes when she poops. She cries when she is hungry or has some gas but otherwise she is very content. We have started giving her a combination of breast milk and formula and she is doing well with that. This is great for me, as it gives me some extra sleep at night. During the day we still spend much of it holding her - i figure there will be lots of time later to clean house! We are all really looking forward to having Grandma Plett (my mom) and Great Grandma Kornelsen here for 5 days next week. Two more sleeps in Ethan and Abigail time.
There have been a few times in the last few days where I have felt a sudden rush of anxiety/pain. Sometimes it is hard to be a good parent to my other two children when it hurts. But generally I am still doing fairly well emotionally. I am so amazed (and humbled!) by those of you who are praying for us and checking this blog regularly even while you face great unknowns/difficulties in your own life. Thank-you! Let's keep pressing on together...
"Forgetting the past and looking forward to what lies ahead, I press on to reach the end of the race and receive the heavenly prize for which God, through Christ, is calling us." Philipians 3: 14
"Now we live with great expectation and we have a priceless inheritance - an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And through your faith, God is protecting you by his power until you receive this salvation which is ready to be revealed on the last day for all to see. So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold - though your faith is more precious then mere gold." 1 Peter 1:3-7
This morning we packed the gang up and headed to the Children's Hospital. We met with the Cardiologist and the on call Palliative Care Doctor. This will likely be a weekly meeting. We really like our Cardiologist. In fact, we have had a very good experience with all the Medical staff that have been involved in Rachel's care. And everyone has done such a tremendous job at keeping each other updated on any new developments along the way.
So, I am going to try and summarize what we talked about - and there was alot of information. Dr. Fruitman will be sending us an email later also summarizing the details for us. We often leave these meetings thinking that everything is clear in our minds only to be throughly confused when we have to explain it to you...(plus we did the meeting with two wiggly children) So, I may tack on some of her email later for those of you who like to know the medical terms etc..
- Rachel's oxygen levels have dropped. They measured low to mid 50's. (she was at 78% at birth) The nurse measured her foot first (this was in the 40's) but the 50's are likely more accurate. This is low. That said, Rachel still has alot of color and the Cardiologist had expected to see more blueness. I think I have noticed more blueness after she eats. Generally, there are still unknowns about how much oxygen is getting to the lungs. Basically, no-one really knows what her heart will do and how long it will work! Perhaps weeks or months even?
- Rachel is now 4 pounds so even with the extra feedings, she has lost weight.
- Rachel's echo was presented to the Western Conference of Cardiologists on Tuesday (4 western provinces) The opinion given there was the same as we had expected. They too felt that our decision for palliative care was the right one, given the complexity of her heart. One Cardiologist suggested that perhaps the collateral arteries leading off of the Aorta (to the lungs) are actually ducts instead. Not much difference - the arteries would gradually narrow and ducts close up. Dr. Fruitman thinks that because Rachel does not appear to have breathing difficulties yet, the 'ducts' theory may be accurate. (ie. they are still 'open' and as result, the curly cue veins coming back into the heart will not affect her in the same way if she had arteries that were closing) We asked if this might mean that her death could be more sudden and she said it was still likely to be a gradual change. (ie. one duct may close before the other) This also means that Rachel may not have to experience painful breathing - i was glad to hear this one. yikes, are you confused yet? i am.
- The only option for surgery is to separate the collateral/duct arteries from the aorta and put in a shunt to aid blood flow to the lungs. This surgery is very risky - there is a very high mortality rate. And a very low success rate. The outcome stays the same - her heart can not be fixed. This surgery is still a 'palliative' one. If we want the surgery, this should be done sooner, rather than later. (over time the low oxygen flow damages the lungs) We have decided not to do it.
- The tummy ultrasound results: confirmed missing kidney, presence of a spleen, isomerism (reversal of organs) Also, something about the intestines. In a healthy person, these are 'tacked down' in the body. They are not in Rachel. This means there is a possibility of them becoming twisted. A very low chance of this - this usually happens in older children - but something to watch out for none the less. The sign would be constant upchucking (my word) of her food.
- We are concerned about her increase of mucus secretions - this is not connected to her heart condition. Perhaps it has to do with her 'syndrome'. There is still something genetic going on which we may never have a name for or understand.
Dave and I still find these appointments to be emotionally draining. It is hard to hear these things, even when we have heard much of it before. Thank-you for your prayers and your emails/notes/cards! Please keep praying for us that we will take this ONE DAY AT A TIME. I remember when we first got the results of our ultrasounds, how overwelming the future felt. The thought that we might have a child with severe disability & health issues felt like an incomprehensible burden. My mom asked me a question often in those first days. "Can you do today?" I tried to focus on just the day ahead, the tasks that needed to be done and I found it more manageable. I know it's not always that easy. Sometimes, I know I just can't do it. I need God's help for each minute/hour.
It has been good for me to feel weak. Because then I have found God to be strong.
Life at home is going really well. (although so much busier - really, what did I do with my time before three?) Ethan and Abigail have been very content to entertain each other. I think they missed home. Dave went back to work yesterday but he works from home in the afternoon so I can have a nap! The nights have been rough - Rachel's day time hours are between 1 and 4 am - but these are gradually getting better. She does 'normal' baby things like complaining about gassiness and she smiles after a good feed. I keep trying to get a picture of a smile but no luck yet. She has continued with the increased amounts of milk and I have to work hard at maintaining a supply. She still struggles with mucus from time to time, which is hard for us to see. And she is so tired. But otherwise, she seems to be doing well. I think she looks more and more beautiful every day. I want to keep her forever...
We have another thumb sucker!! It's hard to see but you'll have to trust us - her thumb really is in her mouth and she did it all by herself. You make your big sister proud Rachel. Below the thumb picture is one of the dress that was hand sewn by a nurse at the Rotary Flames House. I want to say her name is Anna - if you're reading this, please give me an email and correct me if I'm wrong. I added a few ribbons - thank you for the suggestions. You are amazing. And Rachel, if you grow out of this dress.....and you grow too big for the casket that is waiting for you at the Pierson Funeral Home, that's ok with us. oh little lamb, how do we love you deeply and be ready to let you go at the same time? Jesus, be our Shepherd.
"Even though I walk through the valley of the shadow of death, I will fear no evil for you are with me; your rod and your staff, they comfort me." Ps 23
I can add pictures to the blog posts again! Here are some recent ones, including one of our girls. Some of you have been asking about Abigail - she is dealing very well with her jealousy issues now that life has settled somewhat and she is getting more of our attention... and she really wants to be involved in Rachel's care. She loves to 'show' Rachel things usually by plopping them down on her face. She often says "I love baby Rachel" in a very sweet voice. We turned around once to find Abigail carrying her - she is as light as a doll - so we do have to keep an eye on her! You are a fine big sister Abigail.
We dedicated Rachel to God this morning before our church family. Levi Smoker, thank-you for leading us in this! We dressed her in the little white dress that a nurse at the Hospice made for us - it fit perfectly - and wrapped her in the green blanket I knit for her.
These are some of Levi's words (with his permission): "Her medical prognosis indicates that she may live a very short life on this earth. However, as the Psalmist says in Ps 31:14-15; “I trust in you, O LORD; I say, You are my God. My times are in your hands.” This, of course, is true of each one of us as it is of Rachel. Rachel’s prognosis, though, brings this truth to the fore and makes us realize how very true and real this Scripture is. All the events and circumstances of Rachel’s life [and ours] are in the hands of the Lord."
Kendra and David, do you acknowledge that Rachel Amariah is a gift from God, created in the image and likeness of God, and created for His own purpose? [We do.] And do you now present Rachel in dedication to the Lord for as long as she will live? [We do.]
(prayer) “Today as friends and loved ones gather in this holy place, we lift your child, Rachel Amariah, in dedication to Jesus, ever mindful of His mercy and grace. We bless the Lord, we bless Rachel Amariah, and we bless you, Kendra and David. May the Holy Spirit guide, sustain and keep you as you nurture Rachel, this child of God that He has given you. In the name of the Father, the Son and the Holy Spirit, Amen.”
Tonight I put Ethan and Abigail to bed for the first time in weeks. It was so good for me to connect with them again..it has been awhile since I've felt that I could give space and attention to them. We needed that to happen. Dave and I have also needed space to talk with each other and being at home has helped us do that a bit more.
Rachel had a good day. She had alot of alert periods. She has even smiled for us and the room just lights up - and I don't care what you say about babies smiling because of gas. And her milk intake levels were really high too...so much that i'm having a hard time keeping up with the demand! I guess this means I'll have to get up a few extra times in the night but that's ok.
This afternoon, Dave took the kids to the Library while I stayed at home with Rachel. I spent a large part of the time just holding Rachel in my hands and listening to Steven Curtis Chapman's latest cd. He wrote these songs after his 5 year old daughter was killed in an accident. I listened to this cd alot while I was pregnant - maybe Rachel remembers...It makes me long for heaven. It makes me long for a day when there is no more death, no more enemy...and everything is made new and right. A day when babies will no longer die and we will never be separated from those we love again...And I wonder what it will be like for her to take her last breath here and then to wake in the arms of Jesus...
"I heard a loud shout from the throne, saying, "Look, the home of God is now among his people! He will live with them, and they will be his people. God himself will be with them. He will remove all of their sorrows, and there will be no more death or sorrow or crying or pain. For the old world and its evils are gone forever." Rev. 21:3-4
I have felt incredible sadness today, but it is infused with Hope too. (and this is not the hope of wishful thinking) "Solid Ground of Hope, I want to drive the stake of my life deep into your very words of life and eternal hope, knowing that this daily decision will keep my life from collapsing when the wind of adversity blows." - Nancy Guthrie
We moved home this morning...and what a crazy day. But we survived. Rachel had her eyes open alot more than usual. She also sucked her finger for the first time tonight at her 2 week old birthday party. Sandra Dick from our church organized the party for her - what a thoughtful idea! We ate cake and opened presents. Abigail stuck 14 candles on the cake with some help from friends and Rachel blew them all out...also with some extra help. Thank-you to everyone who came - we are so glad we got to share her with you!
Last night we had Rachel in our bedroom for the first time - until now the nurses have watched and held her for most of the night. We wanted to prepare ourselves for what life will be like at home. We stayed up together until about midnight, when Rachel finally was able to work out the mucus that had accumulated in her mouth/throat. This seems to have become a problem again and we don't know why. She seemed very uncomfortable and I was so relieved when she started breathing more evenly. Dave took care of Rachel for the remainder of the night - what a man!! I took over again around 6:30am.
We weighed Rachel again this morning. She is 4 lbs and 4.5 ounces. Our beautiful little doll!
10pm - We just spoke with the nurses here and they will take Rachel for our last night here. One last time before we're on our own at home! And she has been doing fine tonight - no mucus issues. She's happily sucking away on her soother - that seems to help her move that down. At supper, I found myself really looking forward to going home. Good-night!
This morning we walked over to the Children's Hospital with all three of the kids. We took Rachel in for a tummy ultrasound and a blood test. Dave took Ethan and Abigail to play elsewhere while I had Rachel. The tummy ultrasound took a long time - things are complicated and the radiologist had not seen her before. We haven't spoken with a Doctor about those results yet. Rachel had to fast for 3 hours before the ultrasound. This turned out to be no problem for her. In fact, I think she only had 10mls between 6am and noon. (15mls is one tbsp) As I waited for the Radiologist to finish looking at the results (i was alone in the room with Rachel), she had her eyes open for a long time. I sang songs to her about Jesus and heaven. It was a precious time.
As I waited at the Lab to do the blood test, our Geneticist came over to talk with me. From the start, there were a combination of factors that indicated the presence of a genetic defect of some kind. The results of the initial blood test (from the cord blood at birth) are in. They are normal, meaning that all 46 chromosomes appear to be intact and there are no extra or missing ones. The blood they drew from Rachel today will be used for a more in-depth test in which 40,000 genes will be studied. We will not get the results back from that test for another 6 months. Whatever the result, Dave and I know that Rachel is not here by chance - she is designed by her Creator. Whatever we know about her body or will learn does not change our love for her.
We are still thinking of going home with Rachel. But we know there will be extra challenges. For one, the kids have gotten used to watching alot of TV...they actually know what Treehouse is now. The first day we were here, Ethan kept asking me to 'pause it' because he was used to just watching movies...yes, this movie runs all day.... We don't know how long we will have with Rachel - if God give us more than a month with her, we want some of that to be in our home. We are so thankful for a place like this to come back to when we need.
Val, my sister in law, did an excellent job writing about Rachel's arrival day! I just want to add some personal details to the story...
May 21st.... I slept well the night before! I got up around 4:30am to have a light breakfast before my pre-surgery fast. Then I went back to bed and slept till 9am! Thank-you to those who prayed - God gave me alot of peace that night. I woke up to a song going over and over in my head. Rich Mullins sings "Hold me Jesus. Cuz I'm shaking like a leaf. You have been King of my glory. Won't you be my prince of peace?" I think it was in my mind right until the time they put the spinal in my back. Then I was a bit distracted;) This song really did help me to focus on Him. I so needed His peace that day!
By 10:45am, most of our family had arrived and Levi and Wilma Smoker, our Pastors, prayed for us before we left for the Hospital. It was so strange to get into the van with David and know that we would soon meet our baby girl. So many unknowns lay ahead. While we waited for the elevator on the Main floor of the Hospital, I read a plaque that said "In here, birth and death occur." and then something about their respect for both. I remember how my gut hurt to read that, thinking that perhaps in our situation, both would happen at once and I prayed that God would give us time with Rachel.
In Labor and Delivery, we were brought to a private room. It was a place where women give birth to still-born babies. I wondered if someone I have just recently gotten to know had been in that room. I felt sadness but surprisingly, I also felt a sense of peace. I don't know how to explain this except to say that it could only have come from God. I knew that one friend was fasting for me at the time - and I later heard of another. Thank-you!!
We didn't have to wait long for surgery. Ours was only postponed by 1/2 hour. After that everything seemed to go so fast. The spinal made me really sick though and at one point, Dave was really concerned about me. I couldn't respond to him except to slowly squeeze his hand. I remember thinking how disppointed I was that Rachel would be born while I felt so awful and I might miss the moment completely. Then some anti-nausea drug was given to me and I perked right up. Not long after, Rachel was lifted up over the sheet so we could see her and my first thought was "She's so tiny!) She was cleaned up very quickly - because of her situation, she was given to me almost right away. They told us she was 4 lbs and 12 ounces. I remember asking Dave "Is she moving?" and He said "yes, i see her arm waving". We heard her mewing. Than she was ours and Dave put her cheek next to mine. That's when I felt so shaky with emotion - any of you women who have had the blessing of giving birth know what that's like..but in addition to that, I felt a deep relief that she was alive - and also a deep deep sadness because this was so very different than my previous birth experiences.
After that I was sewn up and wheeled back into the private room we had been in previously. I remember saying outloud (not sure if I was talking to anyone in particular) "It was worth it. It was worth everything just to meet her.". We soaked Rachel in. Her plentiful hair was parted nicely down the middle - and it still is 2 weeks later. Her little nose crooked to the right side. I thought she looked so much like Ethan had when he was born. I tried to nurse. She was so weak and I knew right away that things were different. Our Doula, Tamara, was with us from the start - she watched the section and later sat with us while we waited for our family to arrive. Thank-you Tamara!! Once our family got there - a few hours later? (honestly, i had no sense of time) our Cardiologist arrived and did the echo.
As we watched her do the echo, I prayed constantly - let her find nothing wrong. I still believed that God could do a miracle. But instead she informed us that there were actually additional problems to what had been diagnosed prenatally. I felt again at that moment that God was saying 'No. It has to be this way. But I will carry you through. Trust me.'
Well, that's basically it! From there I was taken to Postpartum. We did get a private room and Dave was allowed to wheel in a stretcher each night. It was a small room and a bit cramped but i was so glad to have his help in the night. I may have said this but I want to say this again - everyone was so incredibly considerate and respectful of our situation, both during the pregancy, and through our whole Hospital experience. I am so grateful for these beautiful people!
Welcome here Rachel! We love you. We will never forget the day you were born.
Dave and I celebrated our 8th year anniversary this morning! We went out for breakfast with Rachel. (someone at the hospice watched our other two) The restaurant was filled with Seniors, and many of them smiled and commented on our beautiful little baby. The last time we went out for breakfast on our anniversary, I was pregnant with Ethan and very nauseated. We were traveling to Oregon for an IVCF conference and the only thing I wanted to eat was chunky hashbrowns! So in honor of that day, I ate them again. Thank-you David for a wonderful 8 years! I'm so happy that I get to share life with you.
Early this morning I went back to the Hospital to get another ultrasound done bc of the pain in my side. The pain was alot better this morning but the Dr. last night just wanted to make doubly sure that there were no blood clots. I spent another 3 hours there (yuck!) away from my family. Turns out that there was some extra fluid in my left side and because of where I felt the pain, my Doctor thinks I passed a small kidney stone. He said that this sometimes happens to women after pregnancy. Glad that seems to be over!