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.