Cute Doings and Sayings by the "Big Sister"

Sage is now known as "tinkerbell".  She has watched the tinkerbell movie several times now and will not answer to Sage, only tinkerbell...unless I ask tinkerbell to do something she doesn't want to do, then she is back to being Sage.
Sage is beginning to adjust to having her new baby sister at home.  She loves to give her LOTS of  kisses and hugs and put blankets on her, while she is sleeping.  Anytime she sees Selah sleeping in her bassinet or swing, she goes over and says a prayer and tells her a bedtime story, no matter what time of day it is.  Sage has also taken up using a pacifier when Selah has one, which is funny to see, especially since Sage never took one as a baby.
Sage is doing very well at swimming in the pool by herself.  We have spent all summer in the pool, which was a huge blessing for a pregnant woman in the middle of a Florida summer.  Sage also started riding her tricycle by herself this week.  With a push here and there, she is able to peddle it herself.
Finally, Sage has gotten used to and is ok with me (Amy) holding Selah, but does not like it when daddy holds Selah. She becomes very jealous and cries for her daddy to hold her.

The following pictures are:
1. The day we came home from the hospital with Selah.
2,3.  Selah at two weeks old.
4.  Selah sleeping in her bouncy seat during dinner.
5.  Sage making her "funny face"

August 22, 2011

Well, sorry it has been a while since we have posted on the blog.  I'm sure anyone with kids would understand why.  I can't believe that it has been over a week since we brought little Selah home from the hospital.  She has been doing great.  She is eating, sleeping and pooping very well!  She has even been giving me a four hour stretch at night to get some sleep!  We saw the pediatrician last week, but this week we have appointments with the neurosurgeon and urologist for follow-ups.  We are praying for great reports!
We often think about the other babies still in the NICU and praise God for the blessing of Selah only having to spend 10 days in the NICU.  It was such a blessing also to be able to stay at the Ronald McDonald house in the hospital, especially because I was nursing Selah.  I will never forget walking through the hospital from the RMH to the NICU late at night, often in my PJ's, to nurse Selah.  I'm sure the guys mopping and waxing the floors at night are used to it because there were many parents either coming or going from the hospital at all hours of the night.
This journey has truly taught me to take one day at a time.  It can become very overwhelming thinking about the future, but I have learned that God's mercies are new every morning.  He gives me just enough strength, grace and mercy to get through today and not another minute.
I have also been enjoying two devotional books lately, Jesus Calling by Sarah Young and Good Morning, Lord... by Sheila Walsh.  I just wanted to share a couple of thoughts that God has layed on my heart. 

-Difficulties are not necessarily obstacles for God's children, but His appointed way.  You are walking along the path that God has chosen for you.
-But in all these things, we overwhelmingly conquer through Him who loved us. (Rom. 8:37)
-Accept each day just as it comes to you.  Do not waste your time and energy wishing for a different   set of circumstances.  Instead, trust Me (Christ) enough to yield to My (Christ's) design and purpose.
-"Do not fear, for I have redeemed you; I have called you by name; you are mine!" (Isaiah 43:1)
-And He said to me, "My grace is sufficient for you, for power is perfected in weakness." (II Cor. 12:9)
-He will not allow your foot to be moved; He who keeps you will not slumber. (Psalm 121:3)

Selah was released from the hospital today. Doing great. More updates to follow.

Selah goes home!

RMH continued

It has also been very convenient because the two nights we stayed at home, we would drive home, sleep, get up, and then drive back.

Selah started nursing again yesterday and has been doing really well. She is completely off of her IVs. She took her last dose of antibiotics and is healing well. It is nice to see her and hold her without so many wires and IV lines hooked up. Over the next few days she has a few other tests and consults scheduled to deal with bladder and feet/lower limb issues, etc. As long as she continues to eat, the sutured areas continue to heal, and the shunt functions properly, she should be able to go home, possibly by Monday. It has been nice to have our family back together.

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Ronald McDonald

These past few nights we have been staying at the Ronald McDonald House. This has been really nice because it is located right in the hospital and Sage has been able to stay with us. Not to mention, the house is virtually brand new so it is very nice. They always have food out and a nice play area for Sage.

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Sage and Selah

Sage riding the fish at ACH. She is really enjoying this time to spend with her new baby sister.

Selah is back from her surgery. She is doing very well but still sleepy of course. The shunt can be seen on the back left area under the sutures. The tube follows down her neck.

Finished Selah's Surgery

Dr. Carey said the surgery went well. Selah is still recovering so we haven't seen her yet but she is doing well. They placed the shunt on the left side. It is a programmable shunt so that they control the flow rate. It can be adjusted by using a magnet.

Waiting in the surgery waiting room. Talked to the doctor and they are just getting ready to get started.

Preparing for surgery.

Selah getting ready for her shunt placement surgery. She has not eaten since midnight to get ready.

Amy Comes Home

These past few days have been quite a whirlwind. Amy and Selah are still both doing great. Thursday morning we went straight from the NICU to get the MRI and then straight to the OR. The anesthesiologist was very good and is actually having his braces done by one of the good orthodontists that we know. Dr. Carey, Selah's neurosurgeon, not me, had a consult with us after the surgery and told us everything went quite well. They were able to close her spine with no complications and she said she could see good nerve roots. Selah recovered very well after the surgery and Amy was able to start holding her and feeding her on Friday. So far they both have done really well with the nursing. Selah is definitely becoming more animated and signaling when she is hungry. She is still getting most of her nutrients from IV because tomorrow night she will be back off milk to prepare for her shunt placement surgery on Monday morning. Amy may be able to start nursing again Monday night, depending on how quickly she recovers.

We have had all sorts of consultations with the urologist, physical therapist, neurologist, and multiple nurse practitioners, and neonatologists. We are supposed to meet the doctor that is the head of the Spina Bifida team sometime next week. Once the shunt is placed and her head size is reduced, we will focus more on the bowel/bladder issues and lower limbs. All in all, things are going pretty well. We know God has a special plan for her life and are excited for it. Even being in the NICU, we see many other babies that are in much worse situations and are very thankful for the blessings we have. It is so amazing to see how God has already answered many of our prayers. One of our main prayer requests was that Selah would have no issues/ difficulties with breathing on her own or sucking/swallowing. It is such a sweet reminder every time I (Amy) am able to nurse Selah of how awesome God is!

Amy was released from the hospital today. We could have gone home yesterday but elected to stay the extra night to be near Selah. Tonight will be our first night at home. We have had tremendous support from our family, friends, and church. Our parents have been incredible. Selah has also been blessed with the best primary nurse possible! Thank you, Sarah, for your loving care for our daughter! Thank you also to my sweet sister and best friend, Melissa, who has graciously and lovingly been taking care of Sage. We are incredibly blessed to have such wonderful support. Thank you everyone.

Carey holding Selah for the first time.

Sage playing with her cousins and friends in Amy's hospital room closet.

Selah got rid of the IV in her head and replaced it with a bow. She is sleeping well and enjoying her pacifier.

Amy was able to hold Selah for the first time tonight.

Selah was taken back around 11am for the surgery to repair  the myelomeningocele. The surgery went very well and she is recovering nicely.  

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Preparing for surgery

Preparing for MRI

Sleeping soundly.

Selah is here!

Selah Grace arrived yesterday at 10:20 AM. She was 6lbs. 1oz. And 19 inches long. She came out crying alot and breathing completely on her own...praise the Lord! The sound of her crying was the sweetest sound I have ever heard. I will never be able to forget the sound of her first cries or the tears of joy that followed. She has been in the NICU since then. I wasn't able to see her until 7PM last night and won't be able to feed or hold her until she has recovered from her surgery. Her surgery to close her spine is set for around 10AM this morning (Aug.4th). They will then place her shunt sometime this weekend. She is doing amazing! She is such a miracle and blessing from God! Please continue to pray for Selah during her surgeries...that everything would go smoothly, she would recover quickly and not get any infections.

I'll start from the beginning:

My husband, Carey, and I met my freshman year of college, and we have now been married for 9 years.  The first five years of our marriage were spent in Gainesville, Florida, while we were both in dental school.  Afterwards, we moved back to our home town.  In May, 2008, we found out that we were pregnant!  Then, in January, 2009, we brought home a beautiful baby girl, Sage Elizabeth!  We have spent the past 2 1/2 years enjoying and celebrating life with our daughter.  I have truly enjoyed being a mom, thus far, and only work 2 days/week, so that I can stay home with our daughter. 

We knew we were ready to have another child soon after our daughter was born, and then in December, 2010, we found out that we were pregnant again!  The pregnancy was going very well, and we were eagerly anticipating that ultrasound day when we would find out if we were having a boy or girl.  Then, on March 25, 2011 at 19 weeks and 4 days along in my pregnancy, we went in for a routine ultrasound.  We soon found out that we were having another girl!  However, after a while of checking our little girl out, the ultrasound tech said that she was going to review her findings with the doctor.  Of course, we knew already that something was wrong.  The doctor then came into the room and proceeded to tell us that the baby had a myelomeningocele and hydrocephalus (which we later realized meant spina bifida).  The doctor then explained to us our "options", which of course to us, there is only one option, to praise the Lord for this life He has blessed us with and to be the best parents possible to this little miracle.  Of course, I don't think I have ever cried so many tears before or since that day.

Our next step was seeing the specialist, where we learned about a possible fetal surgery to repair the myelomeningocele in utero, so we traveled to Children's Hospital of Philadelphia in April.  However, we found out that we were not candidates for the surgery due to the severity of the hydrocephalus.  Although disappointed by the news, we praised the Lord for a clear answer as to whether we should pursue the surgery or not.  We spent the rest of the week enjoying family time with Sage in Pennsylvania.  Then, we headed home to finish out the rest of my pregnancy, which included a lot of doctor's appointments but mostly a lot of prayer and daily trusting in God!

Psalm 62:8
Trust in Him at all times, O People; pour out your hearts to Him, for God is our refuge.

2Samuel 22:2-3
The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation.  He is my stronghold, my refuge and my savior.