Posts tagged ‘NICU’

Healing Touch

Have you ever heard the phrase ‘healing touch’? It suggests that physical touch or physical contact can heal. Hailey’s life taught me the truth behind this common phrase.

In the first days of Hailey’s life, she underwent surgery,  she had a contraption put on her stomach, she was poked and prodded everywhere with needles as doctors and nurses tried to find good veins for putting in tubes and IVs and drew blood and so on,  she had a blood transfusion, she bruised, she swelled, she would have experienced pain had she not been under the affects of morphine. Obviously, no one wants this kind of life for their child. (But I will say, this life, is better than no life at all… and as you will see in Hailey’s case, this can be turned around with a little healing touch, and faith). (more…)

March 9, 2010 at 5:56 PM Leave a comment

A memory of Hailey’s fight

Today I was supposed to go to my doctor on post to get a referral for us to go see a Genetics Counselor. Unfortunately, that was canceled due to the ‘blizzard’ like conditions here in Southern Alabama. We were told that Hailey’s disorder, Full Trisomy 18, was not a result of something being ‘wrong’ with Josh or I, that it was purely random, and that we will be able to have healthy babies in the future if we’d like to try again. Regardless, we were told that we need to see a Genetics Counselor to discuss Hailey’s Trisomy and make sure that everything is okay like they say.

So today I thought I’d blog a little more about our experience with Hailey in the NICU and Trisomy 18…

One of the health problems that most Trisomy 18 babies have is apnea – which basically means that they ‘forget’ to breathe. Since Hailey had full Trisomy 18, every cell of her body contained faulty data which made nearly everything difficult for her body to accomplish, made it impossible for her to grow and develop, etc. Hailey suffered from apnea while she was in the NICU. She didn’t ‘forget’ to breathe, rather her body and the messages from her brain to tell her body to breathe did not always function correctly. I had a better understanding of what apnea was when I saw it firsthand.

(more…)

February 12, 2010 at 12:18 PM 1 comment

Who knew my worst nightmare would turn out to be an amazing blessing

Over the nine months I was pregnant with Hailey, I prayed for her development and health almost every day. I modified my eating habits and lifestyle so that I could be healthy and have a healthy baby. I took prenatal vitamins daily. I didn’t drink or smoke (not that I do normally anyway) or have too much caffeine or engage in any other risky behavior for pregnant women. I prayed and did what I was supposed to do in order to have a healthy baby. According to statistics, because of my age, my weight, my health history, etc. the chances of Josh and I have a baby with a health problem was very unlikely.

But it all didn’t matter. In the end, I was not in control of my daughter’s creation or development or even life. God was.

In all honesty, having a baby that was ‘retarded’ or that had mental or physical problems was probably one of the things I feared and dreaded happening to me (or my baby) the most. Truth be told, I didn’t want a ‘retarded’ child or a child with disabilities. Not me. I didn’t deserve it. I didn’t want it – for me, for my baby. I wanted her to be healthy and have a normal happy life. And I tried to do everything I could to make sure my baby was healthy and I didn’t have that problem. Statistics were in my favor after all…

(more…)

January 31, 2010 at 3:21 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

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.

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

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.

January 11, 2010 at 7:38 PM Leave a comment


Dedication

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

In Loving Memory of Hailey Marie

Pick a day, read a post!

June 2017
M T W T F S S
« Jun    
 1234
567891011
12131415161718
19202122232425
2627282930  

Your love O Lord Reaches To The Heavens Pslam 36:5

Archives

Photo Sharing and Video Hosting at Photobucket

Email me

If you have a private comment, a story, or a question, I'd love to hear from you! Please feel free to email me at k.vanderlip@gmail.com. I will do my best to reply in a timely manner.

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 13 other followers

Blog Stats

  • 29,683 hits