Witnessing a Miracle

Hello Family and Friends!
Well we have been home from the hospital for almost a week now... life finally feels like our "new normal".  Sigh... Hadley is doing amazing!  She is melting our hearts hourly and bringing great joy to our home.  I think that Avery and Ben might disagree at moments, with Hadley's crying and their grumpy, sleepy mommy.  But truthfully we know blessings, when we see them and we feel blessed.  So, where do I begin?

Let me start with giving God the Glory He deserves.  One of my best friends put it this way... and I loved it so much I am stealing it and repeating it!  Thanks Jess!  "It is not every day, you get to quite literally witness God performing a miracle of healing in front of your very own eyes." 

The medication Hadley is on, propranolol is truly a miracle drug.  It is healing her hemangioma daily.  Within two days, we could all tell a huge differance in the color and thickness.  While giving our sweet 7 week old medicine every 8 hours is not what we "planned".  We are continuously renewing our minds of the truth of what God is doing in our lives with this drug.  We are reminded of the countless families who have prayed for healing of their children's hemangiomas (some life threatening) and WE... are getting our prayers answered YES!  We are truly fortunate.  God heals supernaturally and also by medicine... we believe that.  We are also no strangers to this medication.  The way we know about it... I could say it is ironic, but I prefer to see it as God's redeeming Hand in our lives. 

The treatment of propranolol in treating children with hemangiomas was an "incidental finding".  In 2008, several physicians in Denmark were treating some young babies with large hemangiomas with high doses of topical steroids.  Sadly, those steroids caused a potentially life threatening heart condition in those children, called a cardiomyopathy.  In order to treat the medication induced cardiomypothy, they stopped the steriods and put the children on propranolol (which helps control blood pressure).  After the propranolol treatment was started and the steriods were stopped, they discovered that the hemangiomas were disappearing.  This is a very laymans version to the story, but the propranolol was healing the hemangiomas!!!  It is truly an amazing finding.  I am unaware of the prognosis of those precious children who suffered the cardiomyopathies.  It is my prayer they are healthy and well today.  My mother's heart is touched deeply that someone elses child had to develop something so serious, so that my child could be healed.  I do not take that lightly...

So the "ironic" but not so ironic thing is... the heart conditions those children developed is the very same heart condition that caused our first daughter, Payton to die.  And the very same medication (propranolol) that is healing Hadley, is the same medication that gave us more time with Payton.  She was on it too.  We are eternally grateful for this medication.  It is a miracle in a bottle, that God has used to bless our children with.  While we say that, we also recognize that it comes with it's potential risks.  We have been assured that the chances of Hadley experiencing side effects is rare (low blood pressure and low blood sugar).  But "rare" doesn't really mean much to us any more.... So we will always be alert to Hadley's feeding and overall physical appearance as long as she is on this medication.  But we are not allowing fear to rule.  Our God did not give us a spirit of timidity and fear but of power, love and a sound mind.  We believe He did not bring us to where Hadley is, only to not bring her all the way to complete healing.  So we are, as my good friend said, "Watching God perform a miracle... as He is healing Hadley before our very own eyes." 

Thank you so very much to everyone for all of your prayers.  They MADE a differance.  We are truly touched and amazed at how much support we have been shown.  We feel like after last weekend, we can now take a sigh of relief.  God has also guided us, through the amazing hands of several physicians that have been remarkable in Hadley's care and have advocated for us in ways we didn't know we needed.

Dr. Satterfield, Hadley's opthamologist has been a priceless advocate for us.  She has connected us with other physicians and sped up the process of being seen by them exponentially, she has helped get medical records and information to us in a moments notice, she calls us regularly to see how we all are, she completely supported us through Hadley's admission to the PICU and the time we were there.  She was sensitive to our hearts in our revisiting the PICU after all we have been through there with Payton and losing her there.  And she quite literally has given me her cell phone to call her to reach her quickly for when I've needed her support.  I cannot say enough good things about her, we are humbly grateful for her support and care.  If only all families could recieve the kind of care she has provided us and Hadley.  She makes this world a better place.

Several other amazing doctors have made a priceless differance in our lives.  Dr. Asaikar (neurologist) who has assured us through decades of experience, that Hadley is going to not be affected by the cerebellar issue, and has called us at home, counseled us, encouraged us and reminded us to "enjoy" Hadley, to focus on her and not the circumstances we are in.  It was he who made a personal call to Dr. Satterfield to get Hadley seen the very next day.  It's Dr's networking and caring enough to help parents navigate the "system" that has helped make all the differance. 

Dr. Wright (cardiologist), Dr. Kilmer and Dr. Frieden (dermatologist), Dr. Wong (the WORLDS BEST pediatrician) who have collectively spent hours counseling, encouraing, and advising us in Hadley's care.  These are some of the best pediatric physicians around.  As well as all the caring medical staff who took care of Hadley in the hospital.  I wish I could write about each of them.    I will say one thing... if you do not like your child(ren's) pediatrician... I would like to encourage you to search on till you find one.  Dr. Wong has been with us since having our sweet Payton and he has quite literally held our hands through the past almost decade of parenting.  He continues to guide us, listen to us, truly hear us, advocate and provide excellant medical care for our children.  But he also does so with a huge heart.  He cares.... and it shows.  We are blessed. 

So with all that said... our baby girl Hadley is doing wonderfully.  She is tolerating the medication well.  We are praying for continued healing, and that the hemangioma responds well to the treatment and goes away.  She will likely be on the medication for at least 6 months.  So please continue to pray for Hadley to have no complications with the medicine and for the hemangioma to cause no problems with her eye or overall health.  We are not expecting it to, we are expecting it to heal and go away over the next couple of months. 

In the meantime, we are going to be busy loving her, caring for her, and enjoying each and every milestone she meets.  We will be sharing as our journey continues.... love to each of you and thank you so much for your prayers and support. 

Saying Prayers...Awaiting Answers

Sorry all for not updating sooner.  A lot has occured since our last post.  The flood gates to specialists flew open two weeks ago and we are moving full steam ahead.  All in a nut shell... we are being admitted to Sutter Memorial today for hospitalization for 24-48 hours.  They are going to be doing an MRI/MRA to access her cerebellar cyst and her vascular system in her brain, if all looks good, we will be starting her on a medication that will heal the hemangioma.  It is known to be highly effective, but has potential side effects of low blood sugar and low blood pressure, so that is why they want her in the hospital for monitoring.  If all goes smoothly and Hadley responds well to treatment then we will be home Sunday.  I will try to update more with greater detail after the results today or tomorrow.  Please pray for safety in MRI/MRA and good recovery from anesthesia, good response to medication and stable blood sugar and pressure.  And for our hearts.  For God to strengthen and keep peace in our hearts.  Love to you all and thank you!

Update on Hadley...

In my previous post, we had planned to see the Pediatric Neurologist shortly after Hadley's birth.  I did not update the blog at the time, but shortly after the previous post our appt. was rescheduled.  Well, we had our appt. today and so I wanted to take a few minutes and update everyone on how our sweet little Hadley is doing. 

Hadley is delight to our souls.  She is beautiful and we are enjoying her little soul so much.  She has blessed us with a few sweet smiles and occasionally attempts a coo at us.  She is a pretty good sleeper at night, superb nurser and real heart stealer for sure.  We love her. 

A little history to explain the present:

When Hadley was born, within the first 10 minutes after her birth, Aren noticed a pale patch of skin on her face and a bruise-like area on her left temple.  We were not given a lot of direction on what it could be and we left the hospital feeling very confused.  I felt as if everyone knew something, we didn't.  Having worked previously in the medical field... I guess I am a little skeptical at times, as I know how the "behind-the-scene" talk can go.  The staff discussed a little bit with us about this area on her face, but there was never a definite diagnosis given.  We left thinking that Hadley had a fairly small hemangioma on the left side of her face.  Since Hadley's birth, it has changed significantly.  Long story short... because I am too tired to get into any more details, Hadley has a large hemangioma covering the left side of her temple, eye, cheek and top of her head.  It covers the greater majority of her left side of her head.  It has changed in color quite a bit and is much more red, and noticable than in her first week of life.  It has changed rapidly week by week.

So today, we got to see the Pediatric Neurologist.  Dr. Asaikar is a wonderful physician, and we had the privelage of receiving his care and support with Payton.  He is warm, kind and brilliant.  We were so grateful for his care today.  I am truly lacking the words and energy to type in great detail about our appt.  But Dr. Asaikar stated that he is cautiously optimistic that the hemangioma on Hadley's face and the "cerebellum issue" are two isolated issues.  He personally called to get us into an opthamologist this week, as he is concerned about Hadley's eye and the effects the hemangioma may have on her eye and the health of it.  He also wants to schedule us for an MRI, but later down the road when Hadley is older.  He believes that it is in her best interest to wait to do the MRI till she is older and the risks lower with the exposure to anesthesia for the procedure. 

We are also scheduled this Thursday to see a dermatologist to ask about the hemangioma and find out if treatment is recommended or if it is better to not treat and let it take it's course of action and go away on it's own.  We have been told most hemangioma's disappear on their own by the time the child is 5-9 years of age.  We should get more clear direction on what type of hemangioma is Hadley's, if treatment is recommended and what affects both might have on Hadley as she grows. 

Truthfully, there were a lot of details discussed today at the appt. but at this point, what we really need to be looking at and praying about is the two appts. (opthamology and dermatology) for this week.  We are praying for no hemangioma growth behind her eye, no pressure and complete health in her eye.  If they find that the hemangioma is affecting her eye health, that opens up some concerns that the hemangioma and the cerebellum concerns may be linked.  There are several conditions associated with those findings...right now we are resting on Dr. Asaikar's advice and also remaining optimistic.

Thank you to everyone for praying for Hadley and for us today.  We are grateful.  Please pray for us as we go through this week and the eye appt. and the skin appt.  Please pray for healing, for no eye complications to be found and for hope in the hemangioma treatment.  And please pray for peace and comfort for us as well.... and for little Hadley to be pain free, and healthy.  Also, a cold virus swept through our house this week and Hadley caught her first cold already at 3 weeks old!  She has been congested, but otherwise well.  Please pray for complete health in that too. 
Thank you... love Heather, Aren, Avery, Ben and little Hadley

Holding one of our Miracles

Hello family and friends... we apologize that this is a little overdue... 10 days ago we were blessed to finally meet, hold and see our beautiful baby girl, Hadley Mae.  It took us two days to be united and sure of her name, as we had a few others in the running.  But the more we saw her sweet face, the more we felt Hadley Mae was the name for her. 

She is beautiful!  Born 9 lbs exactly and 20.9 inches long.  She looks just like her big sister Avery and was born with almost as much hair as Avery was born with.  Dark to light brown hair, big blueish grey eyes and toes that are long like fingers!!! 

Thank you to everyone who has been praying for her and for us.  Not only did God hear all of our prayers but He truly gave Aren and I the desires of our hearts in Hadley's birth.  I was a nervous wreck and struggled emotionally more than I would have liked, as we approached the big day.  I was afraid and was struggling letting go of my fears in both her birth and my surgery. 

We were surrounded by kind, loving, professional and well trained medical staff.  Dr. Knight, our OB, was phenomenal as usual!  All of our concerns and questions were heard and the staff did their best to encourage us and meet our needs.  The NICU staff were present to support if needed and the nurses who cared for me were some of the best nurses and women I've ever met. 

Hadley entered the world kicking and screaming just like a little newborn should.  We were unsure if we were going to get to hold her, nurse her and care for her after birth or if she would go straight to the NICU for observation.  To our pure delight she was placed into my husbands arms in the OR, then laid into mine in  recovery and stayed with me just about the entire three days we were in the hospital.  Sutter's patient care is wonderful and they've recently changed their policy, where if the baby is healthy and stable, the baby stays with mom the entire time.  No longer do they go to the nursery for care, tests, etc... 

One of my fears for her was that she would not be able to breastfeed well due to her possible "cerebellum malformation" and it's role in coordination.  I also suffered from too much amniotic fluid, a condition called polyhydramnios.  And we wondered if I had the extra fluid because she was not able to perform the suck, swallow, breath, reflex well.  Once again to our delight she is a little "barracuda"!!! and breastfeeding has really been a blessing.  We are currently working on improving her latch and my supply, but she is doing wonderfully. 

The doctors were all so pleased with how well she was doing while we were in-patient, that they didn't feel like some of the original consultations and procedures needed to occur at that time, and that some could wait until we were outpatient.  In may ways we were grateful to not be emergent and need immediate care and consults.  But we were also a little anxious in bringing her home with many unanswered questions. 

One of the test they did choose to perform, was an ultrasound of her cerebellum.  It gave us even greater hope and encouragement than any others up to that point.  The radiologist did say that the imaging was difficult to get clearly, so we are still awaiting an MRI to give us a concrete diagnosis, but we were so pleased to be told that the results of the ultrasound appeared to show that the cerebellum on both lobes are fully formed and that the malformation that we have actually seen in-utero is a small, benign fluid-filled cyst,  that is in between the two lobes and pushing against the one lobe that has appeared to be malformed all this time. 

What does this cyst mean?  We are still unsure.  We are scheduled to meet with the neurologist tomorrow to discuss things more.  However, the Neurologist's Assistant, Radiologist,and Pediatrician that we were assigned to while in-patient all said how encouraged they were by this change in diagnosis.  Several even said that if given the choice of the two, the cyst was by far the lesser of the two "evils".  We were told many encouraging things about this new finding and we felt very encouraged.  We were also told she may have to undergo surgery at some point in the future to help place a shunt in that area, if it causes blockage of cerebral spinal fluid.  But we have great hope and are praying it keeps shrinking and goes completely away.  Of course we'd love it if she could be in complete "perfect" health, but we are praising God for this great improvement!!!

So here we are... at home, cuddling and loving our beautiful little newborn.  Her big sister and brother are enamored, especially Avery.  Aren and I are outnumbered for sure... and we are grateful!!!  Thank you to everyone for your love, prayers and support,  Thank you to many of you amazing women in my life who are keeping my fridge full, along with our tummy's!  And thank you to our family who have been by our sides along the way, helping us in so many ways we cannot list and for showing us what loyalty and love truly is...

Please continue to pray for us and Hadley. 
~Complete praises for all our Father has done!!!
~Pray for our Neurology appt. tomorrow 8/27/12 for clear findings, encouraging news and a healthy prognosis and for the strength and peace to cope with any results found.
~Pray that the cyst goes away and causes no problems, no developmental delays or health complications. 
~Pray that the hemangioma on Hadley's cheek continues to fade and cause no health problems (she has a small red patch of skin on her left temple and cheek and eye- at one point it was in the shape of a heart!!!  It has changed quite a bit since birth and we are praying for it to not cause any health complications for her.

~For an MRI to be performed if it will help her and for no anesthesia with it or if anesthesia...then no complications with anesthesia. 

~Our Father's continued peace and hope in the waiting

~Good milk supply to build...happy, healthy feeding for Hadley and good/rapid weight gain for her (lost 10% of birth weight so we are pumping and supplementing...despite my desire not too, to help her regain the weight she needs then we will stop the supplementing). 

 Blessings and gratitude...

Heather





Awaiting to hold a miracle in 7 days!

Well it's been a little while since I last updated.  My apologies.  A lot has happened since my last update and I am honestly just really bad at taking the time to update things on here.  I've also been just completely short on words.  Literally speechless.  Tired.  BUT... our most recent Dr. appt. and our being one week from our due date has renewed energy to share. 

First, I want to say thank you to everyone for taking the time to read this blog and for praying over us and our precious baby.  Your prayers are being answered!!! 

So, let me first start off with saying that this little bundle of joy...is not so little... she is weighing in based on ultrasound measurements, at an approximate 8 lbs. 11 oz.  That is an estimate, but she feels BIG.  I am worn out!  I look like I am carrying a 10 pound  medicine ball around in my abdomen.  One guy joked and accused me at a local restaurant of stealing a basket ball.  Also, as I was walking into my OB's office the other day, I had some stranger roll her window down, yell out her window at me, and ask, "Excuse me, are you having twins?"  I laughed, and said, "No, just a really big baby." 

About 6 weeks ago, something similar happened to me and it made me cry.  But only because at that time, I had just been told I had too much amniotic fluid (polyhydramnios).  It was the very same condition that caused me to go into labor early with Payton at 30 weeks and deliver her prematurely.  It also can mean there are health complications with the baby or me.  But after several tests and 6 long weeks and non-stress test (NST) twice a week at my Dr.s office.  I am happy to say that we are FULL TERM and baby seems to be doing excellent!  No preterm labor for us.  And the cause of the extra fluid, is being considered idiopathic (of unknown cause) at this point.  Over 50% of cases of polyhydramnios are idiopathic and result in a healthy mom, baby and delivery.  But there's also a lot of scary stuff that can go along with it, and that was one more thorn in my side as I fought against being fearful and not to mention cope with the discomfort of extra fluid, that has caused me to measure (at times) almost 3 weeks ahead of my gestational week. 

So to carry on, the GOOD NEWS is... as of our last ultrasound... fluid is stable (not causing complications), baby is big and best of all... her cerebellum... in the words of the perinatologist (high risk Dr.) has "undergone significant neural development!!!"  It was challenging to get a great image of her cerebellum considering her in-utero positioning.  But she was able to get a good enough view to say things like, "If today was the first day we were to see you, I might not even say anything to you about the cerebellum malformation since it is so minimal and just chalk it up to poor imaging due to positioning."  "I am beginning to wonder if this is even going to present itself as an issue for your baby, and if we had never caught this, if at what point if at all would you have ever discovered it, or would it ever have an effect on her."  We were truly BLOWN away by this news!!!  Everything else about her looks wonderfully healthy and the rest of her brain looks beautiful.  Her heart appears to be healthy and she is developing right on track.  We are so excited!

Not to be a negative Nelly... I will say she still has a malformation.  It is small, but it IS still there... what will it do, how or if it will present itself as an issue is another question.  At birth we shall see if it starts out as an issue and the Neonatal team will be present at birth to assess her and determine if any test need to be pursued (i.e. MRI, CT scan, etc...).  We are hopeful that it will not be an issue, but we just don't really know.  Neither do the Dr's.

God is Good!  He is truly not finished, "Knitting this little one together in my womb."  I give Him all the credit, all the glory.  I am deeply grieved by the memory of how frightened we were at 21 weeks when the first perinatologist gave us the news in such a grim manner and was making sure we "knew" our options.  I am so hopeful for our baby and we will Trust whatever happens... God makes NO mistakes in creating us.
Payton was not a mistake, neither were Avery or Ben and this little one is definitely not one either.  God knows what He is doing.  We are doing our best to rest and Trust and believe in His good plans for all of us.  I am also learning how much of this is NOT about me... I am entitled to nothing and like the mother Mary, I am trying desperately to allow His will to be done in my life and I follow His plans for me, not my plans.  Not always easy... sometimes I struggle.  But I am resting on His words of, "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." Joshua 1:9 NIV and "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."  Deuteronomy 31:6 NLV.  These verses have been continuously brought to me in so many occasions and in so many ways over the past 18+ weeks.  I love it, when God does that.  He really does hear our prayers and cares more than we can fathom. 

So here we are almost 1 week away!  Please continue to pray for us and our sweet baby. 

Please pray for:
1. Our baby girl to be born healthy and strong.  For healthy adaptation to outside of the womb.  To keep her temperature up, breath well, nurse well and just be strong and healthy. 
2.  Safe and healthy c-section for me, no complications, fast recovery.
3.  Wisdom and discernment for the medical staff in caring for both of us. 
4.  Peace and comfort in the waiting. 
5.  For baby to have no to minimal NICU stay and minimally invasive procedures to access her.  But for the staff to catch anything that needs to be cared for, if that means more invasive procedures or more NICU time to be healthy and ultimately come home and thrive, we are accepting of that. 
6.  Strength and courage for Aren and I, and wisdom in any decisions we may need to make.
7.  Peace and comfort, protection over Avery and Benjamin and healthy adjustment to me being in the hospital for a few days, and a new sibling in our home. 
8.  For the Glory of God to be shown through this time and in the life of this gift, this child He is entrusting to us. 
9. Praises to Him over the continued growth and development of her cerebellum and the rest of her little body and for making it to 38+ weeks!

As both of my Dr.'s have said, "you two keep proving us wrong"...may we continue on!!!  Thank you everyone for your love and support!  Aren will send out an email the day she is born and let everyone know how we are doing.  It will be short, but sweet.  I will try to post after we get home and settled.  Thank you, thank you, thank you for your prayers and support.  They have carried us, encouraged us and they have been heard by our Father in heaven. 

Love Heather and family

Update: Most recent Ultrasound



Our sweet baby's profile
 at 28 weeks. 


Hello all,
Thank you again for all your powerful and effective prayers!!!  I am so encouraged by all of you.  Thank you!  So how do I sum up a long appt.?  Let me start with we left our appt. very encouraged.  Two encouraging appts. this week!  While I would like to say that the malformation in our baby's cerebellum is gone, that is not the case.  But what I can say is:

~ The cerebellum, despite it's malformation is continuing to grow!!!  Both sides are maturing at equal rates along with the rest of the brain anatomy.  Our Dr. expressed, that she was "surprised" to see that and that she wasn't expecting to see what she saw in this follow-up ultrasound  (u/s).  She referred to the rest of the brain development as looking, "gorgeous"!!!  That was nice to hear. 

~ The rest of the babies body appears to be developing great and there appears to be no problems any where else!  She is measuring a whopping 3lbs + at this stage and like Avery and Ben, most likely will be a big baby!  My amniotic fluid is measuring on the high end of normal, which makes me a little nervous...and physically uncomfortable.  But our Dr. was not concerned about it and doesn't plan to want to see us back for 5 more weeks.  So I am trying to relax about that and not worry.  Just hard with having a history of too much amniotic fluid with Payton.

~ She also reviewed our baby's heart and said that it looked great and she did not detect any obvious defects or complications in her little heart!!!

~ Therefore all this truly leads her to think that the cerebellum malformation is highly likely an isolated event and that it is perhaps not linked to a chromosomal or gene related complication.  Though we will not know for certain until she is born and we can do a chromosome analysis. 

~  We will also truly not really know about the true development of our baby's brain and the effects it will have on her life, until she is born and we can do an MRI, and even then, according to her and the neurosurgeon.... we might not really know.  It will take watching our little one grow and as time reveals, our answers will come.  That is hard.  But again, I rest in the Truth of not worrying about tomorrow, for today has enough problems of it's own and that none of us knows what tomorrow brings.  It is just hard looking ahead with the knowledge we have.  I really do think ignorance is bliss sometimes.  I am grateful that none of us really knows what tomorrow brings... as only our Father does.  Because really it can feel like more than we can handle when we do know a little information... I am sure many of you can relate in your own ways. 


~  Lastly, another really great thing that came out of yesterdays appt. was... I had asked our Dr. the question of, "What about other patients with similar experiences and what were their outcomes"?  And she said, "most of the patients she loses knowledge of after about the first month after birth, due to her position of just caring prenatally for the mothers".  So she had nothing to share with us.  So I asked if, "we could stay in touch so we can update her on our baby's progress" (because I am putting my hope in and resting on a great outcome for her).  I said, "if there's anything positive and hope giving that we can bring to her, that might encourage another family to make the decision to carry their baby to term and not terminate because of such a prenatal diagnosis, that we would love that"!!  She expressed, what seemed to be very genuine enthusiasm towards our keeping in touch. 

And I really mean it!!!  I will... I have read way too many things on-line where people have aborted their babies because of the Dr's influence and a similar diagnosis... I pray that we can prevent this for someone else and save some lives!  During this conversation with the Dr. I was reminded of something that was said in one of our pastors sermons two weeks ago at church.  He said, "sometimes you are allowed to go through something in life, so that later on you can be an encourager to someone else who is being obedient in their situation".  If there is one thing I have been sure of since our first appt. when we learned of our baby's possible condition and that is, "It is 100% God's Will for us to carry her to term, to delight in her and to place her in His hands".  I have never felt more obedient about something in my entire life and know it is the right thing to do.  I told Aren, that night on the way home, that I felt that was a statement I was meant to hear and it was encouraging to me.  So now as I look back, on that sermon and the conversation I had with the Dr... I am certain it was intended for me to hear and that is good! 

So given the week and weekend... with Payton's birthday and two big appts... it has been an overall positive and peaceful week.  I felt like I was on a bit of an emotional high yesterday after the appt.  and for some reason I plummeted a bit later last night.  So please... continued prayers would be so appreciated!!! 

Here are our specific prayer requests: 

1. Praises for the growth and health we are seeing thus far!!!  Continued prayer for baby to develop and grow in a "healthy" pattern.  Complete healing for her cerebellum. 

2.  For the Lord's peace to be in our hearts and souls.  Sometimes it is hard to fight off the fear, anxiety and grief.  But overall we are truly peaceful and hopeful!

3.  For Full-term pregnancy and for amniotic fluid to maintain a healthy range for what my body and the baby needs. 

4.  For joy in the waiting...

5.  For our next appt. which will be towards the end of June.  And for our Dr. to be just as thorough as she has been and for her to have the wisdom and discernment she needs in caring for us.  If there is a problem or something she needs to catch or see, that she will see it! 

6.  For God to receive the Glory through all of this... for His faithfulness to be seen and for His love to be felt by all of us.  Jeremiah 29:11...

Thank you everyone, we are truly so grateful for your support! 
Love you all!

Update: Neurology Appt.

Hello all!  I just wanted to write a quick note on our appt. today with the neurosurgeon. It was an overall encouraging appt. We were not told anything negative, however the Dr. did not feel that he could really offer up any concrete advice to us at this point. He was not able to view the most recent ultrasound results that showed the malformation in our babies brain, due to poor quality images that were faxed. So that was discouraging a bit to us, but he expressed that it wouldn't really have changed his perspective at this point any way. He read over the notes and basically said that, at this point we just have to wait to see how she is after birth and once stable do an MRI, and that will give a clearer picture of what is happening. The positive he shared was that, "if this 'malformation' is an isolated event for our baby, meaning no chromosomal issues or other brain anatomy complications... that it is very likely that this condition could have little to almost no affect on her... that she may do just fine with it... and that we may notice some gross motor delays", but other than that he wasn't overly discouraging. He also said that he "would have liked to tell us everything is going to be just fine, but he said he couldn't do that either". So we feel we got a rather cautious, conservative, yet hopeful opinion. But what it really boils down to in his opinion, is we just have to wait and see... that "a lot of developing still has to happen" and he DID say.... that "it is possible, that the cerebellum and vermis (the areas that have the inadequate growth... could continue to develop more!!!" So we were really encouraged by that! So thank you for your prayers! The Dr. even made reference to "prayers" being said to aide in what we are desiring for in our little ones growth! That was cool to hear! And an answer to one of our specific requests too!

So thank you everyone... keep up your powerful and effective prayers! Please! We will be going in on Thursday for our high level ultrasound with the perinatologists (high risk maternity doctors). So continued prayers please. We will be doing another ultrasound and checking growth.

1. Let's pray for complete healing!
2. No other growth or development concerns, all other healthy anatomy and rate of growth
3. For a thorough job to be done on the u/s and for a healthy echocardiogram (heart ultrasound)
4. For wisdom and discernment for the Dr.
5. Peace for us and God's presence upon us during the appt.

Thank you so much everyone. We love all of you and we are so grateful for your support and prayers. Aren and I, both, have GREAT peace in our hearts.

p.s. I will try to send out emails...but the easiest place to get information is to visit here.  I don't want to or mean to leave anyone off of the email...but I may by accident... so please check the blog from time to time if you haven't heard from me in awhile... might mean nothing new going on or it may mean I had a lapse and accidentally left you or someone else off the email... but the blog is a good reference point...I will try my best to update everyone here. Thank you!

Her impression... 9 years later

I am up past midnight... welcoming in the 28th.  The 9th anniversary of my beautiful baby girls birth day.  Payton would be 9 years old today.  The memories of the eve of her birth are still so fresh in my mind, that at moments it feels like only yesterday.  With everything we have been experiencing lately, the memories seem to be even clearer lately.  Years past, the anticipation of Payton's birthday felt in my heart much different than it has this year.  I've been a little distracted.... a little focused. 

But tomorrow.... will be a day set aside just for you sweet baby girl.  You are not here for us to throw you a big 9th birthday party, but we are setting the day aside to honor your memory, celebrate your life and to feel the love we have solely for you, our precious little one.  I write little one and my mind immediately wonders.... who are you in heaven?  I'll have to wait till I see you there to know.  We love you baby girl, our Love Bug.  You are so missed.  You are never far from our hearts and our continued thoughts.  You will always be missed, never replaced and always cherished. 

This past week your little sister, Avery and I have been going through tubs of clothing getting ready for your other little sister's birth.  Avery asked me with great excitement if we could go through your tub of clothing I've saved.  As we explored, oohed and awed over every little thing in your box, the one thing that impressed Avery the most were your tiny, delicate socks.  She asked me, "Mommy were Payton's feet really that tiny"?  I showed her the foot mold we made of you the night you went to be with Jesus, she was able to see a 3-d version of your feet and see just how tiny they really were. 

Even I.... had almost forgotten.

So I look at this photo your father took of the two of you and I am so touched and reminded by how one tiny set of feet could make such an enormous impression on our hearts and lives.  Our hearts will forever be impressed with your life... your presence, precious daughter. 

We love and miss you. 

Happy 9th Birthday Payton Hadley.

A little update...

So I've been wanting to update everyone on how we are all doing.  Thank you to EVERYONE who have been so supportive these past couple of weeks and this past weekend too!  After the last post, life seemed to calm down and we felt so grateful for normalcy to be about our days and home life.  Not a lot has changed and yet so much has changed....where do I begin?

Shortly after my last post, I was abundantly blessed by a gathering of women who came alongside me and prayed over me, the baby, Aren and the kids.  It was truly one of the most wonderful moments.  Thank you ladies for each and everyone of you who came alongside of me.  Both Aren and I have truly felt held by His love and your love.  Thank you! 

We also decided to find out what the babies gender was...we were really wanting initially to let this be a surprise as we never did this with the other three.  But as time passed, we felt that it was information we wanted to have.  For various reasons, we changed our mind and called the doctors to find out.  So for those that do not know.... drum roll please.... It's a GIRL!!!  We are thrilled!  So is Avery!  She really wanted a baby sister.  Obviously, we would adore, love and want a little boy too...the babies gender has little importance to us in the grand scheme of things.  As I have said all along when asked what we wanted, "It doesn't matter to us, we just pray for a healthy baby".  But we are excited and are busy picking out pretty girl colors for the new bedroom we're having built in the loft upstairs for her.  It is turning out great!  The kids think it is so cool having this change added to our home.  And it has been so therapeutic for us to be planning for this sweet little one... as we truly want to focus on hope for her. 

It has been a tough journey this past month.  The balancing act of pushing fear away and doing what all people do when they are going to have a baby and that is plan and look forward to your future with that baby in it.  We've been trying to rest and trust in God's plan for us and our baby girl.  And to fully walk in faith daily and not in fear or anxiety.  It has not been easy. 

Last weekend, Mother's Day weekend... we had a bit of a scare.  Friday night I did not sleep well and spent most of the night having what felt like Braxton- Hicks contractions all night.  They ranged in strength and frequency.  They were enough to concern us and our doctor had us go in Saturday morning to the hospital for monitoring.  We were very nervous, given our experience in having Payton prematurely and feared we were heading down that road...but way too early.  I am happily 26 weeks this week and grateful to be at home and doing better.  My uterus acted up a bit for them, enough for them to see what I was talking about, but not enough to keep me there.  I was sent home to take it easy and call if things changed.  I have continued to have them, but they are decreasing daily.  I had a conversation with my OB today and he wanted to encourage me at this point to continue to take frequent rest periods throughout my day and not overdo it, no exercise, pelvic rest, and no lifting.  But other than that, he wanted to reassure me and encourage me at this point to go about my normal routine as much as I wanted.  He is not highly impressed with 20+ Braxton-Hicks contractions in a day and reminded me that all the test they performed, came back great and that I am not in preterm labor. My family and I have been having me rest a little more than usual and they've helped come alongside me and give me a couple of days of lots of resting.  But for the rest of the day today I am going to be resuming life as normal, take frequent breaks and sit, stay hydrated, empty bladder frequently and observe my OB's precautions.  But it feels scary.... 

Over a year and a half ago I bought two Louis Giglio DVDs that were on the $5.00 family perks at our local Family Christian store.  I had not had a chance to watch them yet and practically forgot I had them.  We chose to watch his, "How Great Is Our God" video, on Saturday night.  It was JUST the encouragement we needed!!!  I am telling you...God is amazingly faithful and He truly does work upstream to bring things into our lives at just the right time to encourage us.  Aren and I both were in absolute awe of this 41 minute video.  It is one I wish everyone could see.  I HIGHLY encourage it.  It was tailored made for us in that moment in all we are going through with our baby girl.  Here is a little Godtube clip of it... I have it if anyone wants to borrow it.  SO GOOD!!!  PLEASSSSSSSSSSSSSSEEEEEEEEE Watch it!!!  It will change how you view human creation, God and His hand in it.  http://www.ustream.tv/recorded/1849169 (BTW...this is the week our babies eyes are open!!!... amazing timing too, with the video reference!!!)

Lastly, as far as updates in appts. go, we are scheduled to meet with a pediatric neurosurgeon on May 29th and then be seen by the perinatologist on May 31st.  We have asked the elders from our church to meet with us and pray over us and are planning a healing and prayer meeting on Saturday, May 26th.   We are still determining what time that will be and because this is a public blog I will not be posting the time.  But if you are interested in attending please email, text or call Aren or I and we will let you know the time.  We would like to invite anyone who would like to attend that moment with us to come together and pray over our sweet child.  We know that God hears our prayers and He can answer yes to them if we are asking for healing in quiet prayer alone.  But we are wanting to be obedient to what God's word says, James 5:13-16 NIV

Prayer of Faith
13 Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. 14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. 16 Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

We trust that God's Provisions over our lives and our baby's life are Sovereign, no matter what.  But we are doing all we can to put our Faith in Him and seek Him during this time... this is one of the steps in doing that.  So please join us if you are interested and able.  We'd love to come together this way.  It would not require anyone else to pray out loud, it would simply mean your presence is there.  The time will be for the elders to each intercede for us and for all of us to come together and make the request of healing and comfort from God.  Also, to the amazing women who were at the first prayer meeting... please know that I do not ask or expect anyone of you to attend this one too.  You are welcome to be there if you want, but your support has been a blessing already. 
 
Lastly, many of you have reached out and have expressed a desire to help and are asking how.  Thank you, thank you and thank you.  I am so encouraged by the amazing family and friends we have around us.  We appreciate everything you've done and have offered to do.  With my restrictions being lifted and our attempt to resume life as normal, we are good on meals right now.  But thank you.  If things change and I need to have greater restrictions, than this will be a great help.  But right now I think we are good.  Aren and I planned out a menu this week that is simple and quick to prepare and my amazing husband has been helping out so very much to lighten my load.  Thank you so very much to Mema/Kathy, Grandma B, Aunt Kelly, and Brenda for helping with the kids the past couple of days.  Your support has been greatly appreciated! 
Prayer....
This is what we need!!!!  We believe in it's power.  We know each of your prayers are heard and we believe they hold great power over our lives.  Thank you!!!  Here are some specific prayer requests we have at this time:
 
1.  For no preterm labor, for Braxton-Hicks contractions to subside, decrease or not increase and affect my cervix in any way.  For me to make it to 37+ weeks. 
 
2.  For upcoming drs. appts. and for us to not to allow fear to overshadow God's peace.  For healing!!!!  For hopeful news from the neurosurgeon, for an encouraging ultrasound.  For compassionate staff and for Christian medical staff to be a part of our care to encourage us. 
 
3.  For peace and joy as Payton's 9th birthday is approaching on May 28th.  And for us to not allow the timing of all of this to cause us to constantly refer back to our experience with Payton.  It was Mother's Day weekend, 9 years ago that I went into preterm labor with her.  So the timing of this past weekends event was rather close to home for us in our remembering.  Help us to focus on the joy of her birth and life and not the fear that was present at the time. 
 
4.  For protection over our children and our marriage.  As we are all doing our best and loving one another through all this, we are seeing some of the stress of everything affecting our home life.  It is impossible to not allow the stress to affect us.  But we are trying hard to remain calm, hopeful, peaceful, loving and gentle with one another.  We are praying that the devil be bound in any further antics he might pull to bring greater stress upon our family that I know he is threatened by. 
 
Thank you all for your support and love and for taking the time to read this.  We love each of you and appreciate each of you. 
 
Much love,
Heather, Aren, Avery, Benjamin, always Payton and our baby girl we are waiting for.  (name is still being discussed!)

While we’re waiting….

Almost 9 years ago… Aren and I found ourselves standing in unknown territory. We had been blessed with a beautiful baby girl, we named Payton. As many of you know with Payton’s birth, came many changes into our lives. We wanted to share Payton’s progress while she was in the NICU and then when she came home. Aren started a website in her honor and it was there that we did our best to update all the wonderful people in our lives praying for her and supporting us. It continued to be a place to share even after she went to be with the Lord and then became a place to share the births and lives of Avery and Benjamin. But we soon found it to be neglected as we were busy with life with our kiddos. It was a time after that, that I started this blog. At first it was created to be a place for me to update family back East on the kids, and then it morphed into a place of sharing my faith in Christ. Then last July we made the decision to homeschool! And well…it was my last post (a testimony to my full plate!!!) I have been so busy this past year... that I’ve not been intentional about posting. I was considering closing it recently, questioning its purpose at this time in my life. Until almost 2 weeks ago…

I am almost 23 weeks pregnant with our fourth child and beyond blessed to be a mom to another gift from God. All has been going great in my pregnancy up until recently. I am a little drained from retelling the details of the story…so I will be as to the point as I am capable. That’s hard for me…being created as an “attention to detail” kind of gal.

Recently, we went into the perinatologist’s (high risk pregnancy) doctor to have our high level ultrasound (u/s) done. We were just checking on baby to see how growth and development was progressing. We went in fully expecting great things. We were stunned to be told that our baby appears to have a partial cerebellum malformation. This means that part of the baby’s cerebellum (part of the brain that aides in motor control…i.e. walking, balance) is not forming as it needs to. We have since had two more doctor appts. , one with our primary OB, and a follow-up perinatologist appt. We were given similar, yet different perspectives from each perinatologist about what their opinions are on our baby’s possible complications. What started out rather grim, has since transformed into a more hopeful place. We still have a long road ahead of us though.

Aside from being told our baby’s complications, one of the most heartbreaking parts of this whole experience was the initial advice given to us by the Dr. to abort our baby. Legally they have to offer that option… whether it is a terminal condition or not. But we were deeply grieved and offended by this advice and made it very clear where we stood. I will say…this did not end easily. Once the point was made and they were asked to NOT address us with this option again, they receded. But it left wounds on our hearts that will forever affect our view on the sanctity of life.

The Dr.s are unsure exactly what has caused this complication for our sweet baby. The last Dr. we met with left us with hope… We are unsure if this is a condition related to a chromosomal or gene condition, or if it is a developmental condition that occurred very early in my pregnancy, or if it is related to an undiagnosed health conditions in me. Basically we will not know until ultimately the baby is born. And we have been given great hope that this is not a terminal condition, and may not be a severe disability causing condition. We may not know how this affects our precious child… until he/she is grown… What it boils down to in our opinions… is this child…like our others, is in God’s loving Hands. Only He knows the story… we are just following Him in it and doing our best to be trusting and obedient along the way.

We are awaiting blood work on me to rule out some possible causes (I’ll explain more later), we are scheduled on May 29 to meet with a Pediatric Neurosurgeon to seek council on his opinion on the u/s findings and what steps to consider taking as our due date approaches (August 16). We are planning (but not scheduled yet) to do a follow-up u/s with the perinatologist team again. Other than that…not much we can do while we wait… medical-wise…but we can PRAY!

We are asking anyone that knows the Lord to please pray for us and the baby. We are asking for and expecting a miracle. We are also preparing our hearts if the miracle doesn’t come in the way we are seeking it to. We are trying our best to trust in the Lord with all our hearts and to not lean on our own understanding. We are trying to submit to him…as He says He will make our path straight. (My words along with Proverbs 3:5-6). As we look ahead… the path doesn’t “feel” very straight, it feels treacherous, and dark. We know that if we choose to see things through our own eyes, that is how it will feel. And that if we choose to receive His gifts of being in control, being Good, loving and Sovereign… than the path has just enough Light upon it that we need to see in which way to go and to rest and not worry. Some moments in the day are easier to do this than others.

We are hearing many lies in our heads, and many potentially scary perspectives from the medical world…but we are also hearing many Truths…and some of those are:

~That God has made all the delicate, inner parts of our baby’s body and that he/she is being knit together in my womb. Psalm 139:13
~That this baby is “Fearfully and Wonderfully Made” Psalm 139:14
~That we can be still before the Lord and wait patiently for Him… Psalm 37:7
~ We do not need to fear, for He is with us, we do not need to be dismayed, for He is our God. He will strengthen us, help us and uphold us… (Isaiah 41:10)
~He does not willingly bring affliction or grief to the children of men. Lamentations 3:33
~And we know that in all things God causes everything to work together for the good of those who love Him and are called according to His purpose for them. (Romans 8:28)

There are so many more truths that are in our thoughts, on our hearts and in our words we speak throughout this time… so while we’re waiting… we are asking that everyone pray. Pray alone and pray together. He says where “two or more come together in my name, I am with them.” (Matthew 18:20) We are told that “whatever we ask in Christ’s name, the Father will do, so that glory will be brought to God.” (John 14:13). I believe very much in the power of prayer. I know He hears our prayers and in my life, I’ve seen tangible evidence of prayers answered. I also know and will say… God does not say yes in all the ways we ask of Him. His ways are not our ways; His will is not always our will. He sees the bigger picture… He sees eternity. We see only the here and now. We are limited by our lens. And even if we pray and our prayers are not answered in the ways we are asking and seeking… we will still stand in saying… God is good, He is Sovereign in His provisions and we can trust Him in all of this. We know He has great plans for us and that doesn’t include plans to harm us or our sweet baby. They are plans to prosper us and to give us hope and a future… no matter what.

Love Heather, Aren, Avery, Benjamin, Baby and always Payton