Posts tagged ‘Home with Hailey’

Schedules, Belches, and Angel Kisses

Per my cousin’s request – I will write my post today about some of the fun facts about Hailey and some of the things I loved about her.

First of all Hailey was the BEST baby a mother could ask for – honestly. Anyone who spent time with her, like both of her grandmas, could tell you she was one of the BEST behaved babies they’ve ever met – especially once she got out of the hospital. Don’t get me wrong – she had her moments of fussiness but they were few and far between. She was pretty consistent and predictable in her behaviors and routines. She rarely cried. And this was all pretty amazing considering everything her little body was fighting to do and the problems she had…

Here’s a bit of our daily routine we managed to have once we got home and settled with her – this is actually from an email I sent one of my best friends Jan 5th (the day before Hailey passed):
(more…)

January 20, 2010 at 10:59 PM 3 comments

Time is a funny thing…

One week ago today Josh and I awoke to find that our baby girl had passed away… The thing we had been dreading had happened. So today is a hard day…

Time is a funny thing. During the 9 months I was pregnant with Hailey, time seemed to crawl at a snail’s pace. I couldn’t wait to be done being pregnant and hold my little girl in my arms. Hailey’s birth couldn’t come soon enough.

And then all of a sudden, the 9 months were over and Hailey was here. Instead of seeming like it took forever for her to get here – it seemed like time went by too quickly. During the first week of Hailey’s life when we spent it in the NICU and a private room at the hospital and we knew she was fighting against time – because it was only a matter of time before she’d be gone – time was so precious and fragile. I was desperate to hold on to every second.

Then Hailey became better and better, and it seemed like maybe we’d be one of the few lucky parents of a Trisomy 18 baby who would get to spend months – maybe even a year with her. I loved the good days with Hailey – when she seemed like a “normal” baby – but I hated those days at the same time. It seemed like a false hope those days, and I had to remind myself she could pass at any moment even if it seemed she was doing well.

When we were first learning of Hailey’s condition, we asked the doctors what would be the cause of her death. They told us it would be either apnea (when she forgets to breathe) or the result of an infection – it would be too much for her little body to handle. We asked how long she’d have with us if she got an infection, and the doctors told us that she would likely pass within 24 hrs.

Well, on January 5, 2010, we noticed something slightly amiss when we were tube feeding her. We called the pediatrician and brought Hailey in. The doctor informed us that Hailey was fine, but she did have a fever of 100.2. The fever would just have to run its course. To this day I can’t believe I didn’t put all the pieces together so to speak. I thought that Hailey would be fine – she was doing so good – not even acting different or sick or anything – she was actually the most successful with feeding from the bottle that day! I really thought the fever would be gone within a day…

But in retro spec I ask myself how did I not know? The fever was likely the result of some type of infection that she had – the doctor told us that. The other doctors told us that if she got an infection that she would have less than 24 hrs. How did I not know it was her time? Well I didn’t… and it was. She passed away the next morning.

The entire time we had Hailey I knew she could go at any minute – and yet I treated those final hours of Hailey’s life like she was a “normal” healthy baby who could fight off an infection…

When the realization that Hailey was gone set in that day, it was like the last 35 days were gone in the blink of an eye. She was gone already? I tried to treasure each day and each moment and make it last and last and stretch time out… but in the end, I couldn’t hold on to time or slow it down like I wanted.

And now, time is a funny thing. Some days this week time has once again crawled to a snail’s pace, and I just want to speed it up and get through with the day. But then today, 1 week since she passed, time seems to have passed too quickly. Can it already be a week? It feels like she passed away just yesterday – not a week ago.

Time really does move on – whether you’re ready for it or not…Oh how I’ve longed to just pause time. I think of how many times I had Hailey in my arms, cuddling her, holding her, breathing her in, memorizing her face, and just being desperate to pause time and live in that moment forever… but I couldn’t.

It seems like time speeds up when you don’t want it to and then it’s gone before you know it. And when you want time to speed up and pass quickly, it seems like it inches along…

So anyway, today, on the 1 week anniversary of Hailey going to Heaven, I will remember the time we spent with her – and thank God for the pictures and video we have of her as we tried to capture each moment, each memory and freeze time…

January 13, 2010 at 5:00 PM 1 comment

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.

January 11, 2010 at 7:42 PM Leave a comment

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.

January 11, 2010 at 7:41 PM Leave a comment

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!!!!!!

January 11, 2010 at 7:40 PM Leave a comment


Dedication

"God gives, God takes. God's name be ever blessed." ~Job 1:21

In Loving Memory of Hailey Marie

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