Not to us, but to Your Name… (Facebook Note)

While Hailey’s memorial service was beautiful, there is one thing that has been bugging me about it – and just one thing I want to make clear with all of the comments we keep getting from people…

Many people have told us how impressed they are by how we’re handling Hailey’s death and how strong and mature we are, etc. And the thing that is bothering me from Hailey’s service was when the funeral director had everyone there applaud us for our strength, etc. I really felt that was inappropriate to be honest.

I am glad people are seeing our strength during this difficult time, but I need to make something clear…
all of the joy and hope and strength we have is supernatural – God-given. So it’s like the Chris Tomlin song “Not to Us” : “Not to us, but to Your Name be the glory.”

So I appreciate everyone’s comments praising us for our strength, etc. and I truly appreciate that – but really it’s not us – this is all a God thing. We are weak and grieve and are sad. But God has given us strength and hope and joy and everything we need to get through this.

There are several Biblical truths that I am seeing played out in my life that speak to this issue:
2 Cor. 12:9 “But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.” God is definitely displaying His power in our weakness right now…

and…”Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think”. Ephesians 3:20

God is accomplishing more in us and Hailey more than we EVER could have imagined.
So don’t praise us – PRAISE GOD and give the glory to God!

And keep praying for us because we need prayers and God to get us through this.

Hailey Update Sunday, December 20, 2009 at 1:32pm

Just a little update for those of you who are wondering…

Hailey is doing well at home with us. Today she is 19 days old. Every day we have with her is a blessing especially since most Trisomy 18 babies don’t survive birth and most of those who do survive don’t live past 15 days. There are a very small percentage, like Hailey, that can live weeks and months longer than expected. It’s hard to understand how such a small, fragile baby can be such a strong fighter – but that’s our Hailey.

We have hospice nurses coming a few times a week to check in on us and Hailey. She gets weighed every Monday – last Monday she was about 5lbs which meant that she lost about 1lb since birth. She’s still taking bottles of breastmilk, but she was barely getting enough to stay hydrated – drinking takes a lot out of her. So we use a tube to feed her twice a day and she’s getting plenty of nutrients that way. She got an eye infection on Thursday but we’ve been treating it with antibiotics and her eye is doing much better today.

So that’s about all that’s new. It’s great being home with her and we’re excited to spend Christmas with her.

Hailey’s first night home… Thursday, December 10, 2009 at 9:01am

We were discharged from the hospital around noon on Wednesday (Dec. 9th) and made the long drive from Birmingham to Enterprise back home with Hailey arriving around 4pm. When we first received Hailey’s diagnosis and she was having her breathing problems, I never thought it would be possible to bring her home. I wasn’t sure if we’d ever get to put her in her car seat or if she’d ever see her room, sleep in her crib, etc. or if she’d ever meet her big brother Opie. And at that point I wasn’t sure if I’d get many more hours or even a day with her…

But God is continuing to work miracles in Hailey and pour out His blessings on her and us. We’ve been blessed with 9 days with her. We got to put her in her car seat – and boy was that a sight! Such a tiny little girl in that huge car seat. She fussed a little bit at first on the drive, but then slept most of the way. We got to bring her home and show her her room and all of that fun stuff a mom looks forward to. 🙂 And we got to introduce her to Opie. He’s been such a good big brother to her. He respects her space and wants to be by her every time she cries. He sleeps at my feet when I change her. It has been truly awesome!

Not to mention what a great feeling it was to see the sign “Welcome Home Hailey” on our mailbox and the balloons and treats that awaited us inside. Again – I was never sure I’d get to have that memory with Hailey – but I have it now and can’t described how loved and how good God is for watching over us and placing people in our lives to help us.

It’s been less than 24 hrs home but it feels great and we’re all adjusting well! It’s so much more peaceful and comforting to be at home with her.

I should add that Hailey’s daddy is trying to teach her how to suck her thumb since she’s been using her hand more and more. This morning she tried to put her whole fist in her mouth and suck on it – never thought she could do that one!

It’s not an easy or expected situation that we’re in with Hailey and without our faith in God I don’t even want to think where we’d be. But we know Hailey has always been and will continue to be in God’s hands. We don’t necessarily know His purpose in this. But we do know she’s in the best hands to be in and that God will wrap her and us in His love.

About Hailey Monday, December 7, 2009 at 11:54am

Today Hailey is 6 days old. She will have her 1 week birthday tomorrow – we’re working on planning a little party for her.

Here’s a little description of our Hailey. She has:
-a fine head of dark hair
-light blonde fine eye lashes and eyebrows
-big baby blue eyes
-a cute little round nose
-small pursed lips
-tiny little elf ears
-i tihnk she has big feet but no one else does 🙂
-most ppl say she looks like me with the small features (besides my nose :P) and elf ears

Here are some of her likes and accomplishments:
-She likes to hold your finger in her right hand
-She loves sucking on fingers
-Her favorite thing is one finger in her mouth and one in her hand
-She likes her purple paci
-She likes looking at you when you talk
-She tends to sleep with her eyes open
-When you hold her and she’s sleeping she’ll peek at you with one eye every now and then – it’s like she doesn’t want to miss anything
-Recently she started reaching her right hand up toward you – she ‘punched’ me in the nose yesterday and ‘punched’ her stuffed giraffe in her nose
-I think she likes feeling her soft giraffe when we run her hand over it
-She watched Favre play for the first time last night – bad first game to see
-I read her her first bedtime story last night – i think she liked it
-Her daddy bought her her first bouquet of flowers a couple of days ago that she got to see and smell
-She took her first bottle of breast milk a few days ago also – we’re still working on feeding her
-She hasn’t had any breathing attacks /apnea in several days
-When she’s fussy she likes being held and rocked or walked around and rocked, being swaddled tightly, and sucking on a finger or paci
-She has a great flowery baby smell to her that I could just breathe in all day long – love it!
-She had her first professional photos taken of her Saturday night

More info about her condition…
-She is only on an IV and oxygen (just in case)
-Her stomach bandage was changed today and it looks pretty good – we’re working today trying to figure out a long term solution for it so that she’s comfortable and we can take her home
-She’s only on morphine when we feel like she’s in a lot of pain – she wasn’t on any for a couple of days but starting last night she had some more
-So at this point she’s doing good – we’re trying to figure out her stomach situation, see if we can take her off her IV and work on bottle feeding her if we can otherwise we may have to use a feeding tube when we go home, if we get to take her home, the hospital will arrange for hospice to come and work with us at our house to take care of her… so we’ll have big decisions to make later today and see what happens next…

We’re thankful for everyone’s thoughts and prayers. I’m especially glad that we can keep everyone up to date with the Internet and Facebook since we live to so far away from family and friends. Even if Hailey can’t meet our friends and family we at least want to share her with you all so you can get to know her a little bit from these updates and photos.

Bringing Hailey Home Tuesday, December 8, 2009 at 6:49pm

First a few updates, Hailey had a very good 1 week birthday today. She is taking in the minimum breast milk requirements through a bottle for her to be off her IV and come home! Today is her best feeding day since she started! So we’re very thankful for that since she had been having problems swallowing. Her stitches / tummy incision are healing nicely so far. And tonight we’re learning how to put in a feeding tube in case Hailey can’t take in the nutrients she needs via the bottle.

So the plan right now is for us to take her home tomorrow sometime! We needed to reach the feeding milestone – which she did today. Then we needed to figure out getting oxygen ready for her at the house – which also thankfully got taken care of. We will be sent home with an oxygen tank for traveling and all she’ll need at the house is oxygen, morphine for when we feel she is in pain, and feeding tube supplies in case we should need it. Everything will be taken care of by the local hospice where we live. We will work with one of the hospice nurses to figure out a plan for caring for Hailey – we’re initially thinking of having the nurse come once a day just to check on things – maybe less since Hailey has been doing so well. Unfortunately the drive home from Birmingham is close to 4 hrs so we’re praying that the car ride goes smoothly and she just sleeps most of the time. We don’t know when we’ll be discharged but at this point it should definitely be tomorrow.

I’m incredibly thankful to have the opportunity to come home with her. I will also honestly say I am a little nervous about it, but its definitely where I want her to be and believe she needs to be.

So those prayer warriors out there – please pray that our discharge and travel home will go smoothly and that little Hailey will do great throughout the process so that we can get her to her home. Please also pray that God would bless her time at home with us and give us (and any doctors, nurses, etc.) working with us the wisdom to take care of her and keep her comfortable. And please pray that Hailey continues feeding well with the bottle so that we don’t have to use a feeding tube. Thanks!!!!!!

Hailey Marie Vanderlip Friday, December 4, 2009 at 8:19am

(I wrote this at midnight last night… Hopefully it’s coherent and even I have my facts straight)

To try to keep our friends and family updated about Hailey and know how to pray for her, Josh, and I, I’m going to attempt the best I can to get everyone up to speed and on the same page with all the facts.

Hailey’s Birth:
While being induced at Southeast Alabama Medical Center in Dothan, AL and having minor contractions for 2 days, my water broke naturally at around 1 or 2pm (times are fuzzy for me!) on December 1st. I was able to have the vaginal birth I wanted and almost had it as natural as I wanted. However, due to my being confined to a bed and not being allowed to move throughout my entire labor and contractions, I was having a difficult time managing naturally and requested medicinal relief through an IV (I’m not sure what they gave me). They gave me the medicine around 5 right before I started pushing. Little Hailey Marie Vanderlip arrived without complications on Tuesday, December 1, 2009 at 6:04pm.

Hailey’s Medical Issues:
This is where things become unbelievably complicated. I’m going to try to keep this as short as possible. Immediately after delivering Hailey the doctors could physically see several things wrong with her. First, her intestines were on the outside of her body and in her umbilical cord so the doctors had to take care of that and I was not able to see her at all since they were working on her. Second, her left side of her body visually looked like it had some problems developing – in particular her left hand and her left hip (possibly leg). After cutting the umbilical cord, Hailey was rushed to the NICU and was then flown to Children’s Hospital in Birmingham, AL where they would better be able to handle her medical issues. Fortunately, two of our friends were able to drive Josh to Birmingham to meet Hailey there (it’s a 4 hour drive) so Josh left immediately. Also, fortunately, I was able to go to the NICU at SAMC to see Hailey while they waited for the jet to get there from Birmingham. When the rescue people got there from Birmingham they let me hold her before taking her – I am sooooo thankful for that as that is the only time she has been held (other than by doctors).

When Hailey arrived in Birmingham, she had surgery to repair a tear in her intestines. Her surgery went extremely well. She was then left with a bandage and contraption to help her intestines naturally go back into her body – which they did very smoothly which is another blessing – this happened during the day December 2 and 3 .

Now here’s where I’m going to leave out a lot of details and make a very long complicated story short (these things are not necessarily in the order in which they happened or we found them out). ..
Additional Medical Issues:
Hailey also has some concerns with her body development (as mentioned early about her left side like her hand and such) and some other things that suggest that she may have a possible genetic disorder. She had tests run to determine if she has any, we do not have any results back and those will come in slowly over time.
During one of the ultrasounds she had done, the found two small structures in her abdomen – they have no idea what they are – they could be nothing or something; so they have to check that out more whenever they can – don’t know anything more about that.
They’ve also been having problems getting a pic so they can get into her veins. They’re going to try to put a central line in her during her surgery tomorrow.
Hailey’s red blood count and platelet counts are quite low – but they have been taking a lot of blood from her and she’s lost some blood due to her 1st surgery – so it’s somewhat normal but not good so they’re probably going to have to give her a blood transfusion which they’re very hopeful about.
She also might have a stomach ulcer.
Most concerning has been her breathing. Since she’s been admitted it’s been getting worse and worse. They don’t know what’s causing it (could be several things – most not good), where she basically forgets to breathe or can’t breathe and has a great deal of trouble catching her breathe again. They would like to consider putting breathing tubes in her but that is a whole other issue I won’t get into right now. So right now she’s having episodes where she stops breathing.

Praises for Hailey:
She has been such a strong little girl and such a fighter. In her ultrasounds they show she has all of her major organs and all of her bones she needs. Her heart is great. Lungs looked great but they’re still now sure what’s going on with the breathing. Also, her left side (except for her hand) is looking better and doing better – she has lots more movement where she didn’t before.

December 4 she will have her final surgery to fix the intestine problem. They will sew up her stomach and make sure the intestines are back in okay. While they’re operating on her they’re going to see what they can do about some of the other problems that are occurring. With her breathing problems and her going under anesthesia for the surgery, she’ll need some extra prayers.

Unfortunately we’ve only been able to hold Hailey’s hand and talk to her – we can’t hold her or kiss or anything. But she often tries to open her little eyes and look at us. We love her so much and are so thankful for the many friends and families we have praying and supporting her and us. You have no idea how good it feels and how much strength I gain from reading someone’s message on facebook or email or text or anything about how they’re praying for her and us.

Also thankfully, we were able to get into a Ronald McDonald house a couple of blocks away from the hotel where we’re staying indefinitely. Between the Children’s Hospital and the Ronald McDonald House, I feel so blessed to be where we are and being taken care of the way we are. Thank you everyone for your prayers, your help with driving, dog-sitting, ferret-sitting, and everyone else you all are doing to help us.