Friday was supposed to be an "easy" day. Gigi was doing great on Thursday... perky and responsive, so we "expected" to coast through Friday with an early morning visit to see her, then back to Leesburg for a luncheon and baby shower for Gigi hosted by some dear friends at Kelly & Conor's school. Then Drew's parents were coming to spend the night and watch the kids... offering for Drew and I to have a date night. Well, what was I thinking!?!
All week we had been praying for God to show us very clearly what action should be taken to help Gigi deal with the hydrocephalus. Her head size had slowly continued to increase, yet she remained stable with no significant signs that it bothered her. Her primary neurosurgeon at Fairfax Hospital is away on vacation until Oct 3, and we (including Drew's dad, a peditrician) were concerned with the possibility of Gigi needing a procedure done emergently if she started having problems... who would help her??? We needed direction.
Well, our "easy" Friday morning soon became the busiest of all days! We casually arrived at the hospital for her 9:00am feeding and were soon discussing with her doctors plans to transfer Gigi to Children's Hospital within a few hours! Drew and I weren't really prepared mentally for this decision.... no solid info to base it. But God faithfully answered our prayers LOUD and CLEAR(both through the loud and unwavering advice of a consulting neurologist, and through that clear still small voice he speaks through our heart). We soon knew she needed to be in the hands of an experienced pediatric neurosurgeon and felt peace about approving her transfer to Children's hospital. The neurosurgery team there would be capable of managing her if she needed a procedure done.
So, running a few hours late, we rushed home and made arrangements for the kids after school... and our friends didn't hesitate to help! Then I arrived at Gigi's shower an hour late... but loved every moment! It was wonderful and we are so blessed by these friendships!! Then the journey began to NE Washington DC during rush hour to find Children's Hospital! We praised God for our friends who fed us directions through the intricate network of one-way streets as we weaved our way through the city. I always say God sends me angels every time I am in need! Providing someone great directions when they are stressed and in unknown territory qualifies as honorary angel status!
Drew's parents met us at Children's Hospital. It was a wonderful experience... we immediately met her neurosurgery team & neonatologists who made us feel very comfortable with with her care. Gigi looked great after her whirlwind day. That's twice she's gotten to ride in an ambulance (Kelly and Conor are a bit envious)!
She had a CT scan of her head last night which gave answers to some of our questions (Praise the Lord!!). It confirmed she has communicating hydrocephalus.. good news because she does have some flow of fluid between her brain and spinal cord (as opposed to complete blockage). They plan to do a spinal tap today to relieve some of the fluid pressure in her head. They still anticipate her needing a shunt in a week or two... when she is at least 4.5 lbs (She is 3lbs 13 oz now). The spinal tap will help her be more comfortable and safe while she is "fattening-up" and waiting for the shunt.
She seems very content and happy..... God gave us great peace today when we held her!
Please pray for God's protection and healing following the tap....also in regard to the e-coli bacteria that is colonized on her. We are thankful she is not infected with it. The tap will highten her risk of an infection entering her blood& CSF fluid, so she'll receive prophylactic antibiotics. She also has a small sore on her face (from tape?) and I ask for your prayers for healing of this area, as it also poses as a site for infection.
Please also pray for continued wisdom for her physicians... especially for decisions regarding any upcoming procedures. We know she is in great hands. As difficult as it is to switch hospitals each time (Gigi's nurses have been so very loving and caring each time!), we know God has a plan in ALL of this!
The blessings we have received are tremendous, and overwhelming emotionally. Many heartfelt thanks go out to our friends who have supported us by:
caring for Kelly and Conor and Skipper on a moments notice.
bringing us meals and treats.... a huge relief after draining days!
delivering clean laudry... what would I do without you my friends!
beautifying our lawn and flower pots... they look extra-loved!
helping with grocery shopping and keeping our fridge stocked.
driving or accompanying Jen to the hospital.
calling or emailing with encouragement.
communicating prayer needs or organizing help.
praying for our family and for Gigi's growth and health!!!!!!!! Thank you!!!!
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