Gone Home

Julia Dawn Hansen Jan 12, 2011 – Feb 25, 2011

Early this morning our little Julia returned home to her Heavenly Father.  After coming at 23 weeks gestation and fighting for 6 weeks, her roller coaster ride is complete. 

Her major fight was with two things.  her lungs that were so weak and damaged, and what ultimately got to her, a fungal infection.  For the last 4-5 days, it has been touch and go and really tough to watch her not improve.  The infection made her cells weak and she had a lot of swelling(edema).  She had almost 2lbs of extra water weight, so she looked quite swollen, given that her “real” weight was only about 1lb 10 oz.

I never knew the heart ache that could come with this.  When the doctor’s told us that there really wasn’t anything else they could do for her, I think I went numb.  Somehow, I knew that it was coming, but it was still hard to take. We’d been waiting so long for Julia to “declare” to us what she was doing that I wanted to keep holding on. late last night it became clear and she did declare her path.  She had a few episodes that showed that she was about to go. 

We did get to spend time with her before she passed.  Erin’s parents had just driven up from California, so their timing was perfect to be able to see her and be here for us.  A number of other family members were able to come and see and say goodbye to Julia.  All of our daughters were able to finally come and hold their little sister.  I was even able to hold her for the first time.  I had never done it before then, and it was a great daddy-daughter moment. (heart-aching, but wonderful)  After everyone had left and had a chance to say goodbye, it was just Erin and I with her when she passed on. (about 1 am this morning)The nurses disconnected her from everything and we were able to hold her some more.  It was nice to see her without all the tubes and things.  The last hardest thing was to let her go and come home.  I think we said multiple goodbyes as it was tough to finally hand her back to the nurses.  Parental instincts run deep.

We can’t thank enough all the nurses and doctors, family and friends that have supported us through this.  It has made a huge difference.  I’m sure that there are more rough days ahead, but we are so grateful.    That’s it for now, and I’m sure Erin will post her thoughts when she is ready. 

 

 

Primary Children’s did everything possible to make things easier for us. 

Walking the tight wire without a net

The last couple days have continued the crazy ride as it has been “touch n go” over the weekend.  Julia’s ventilator has been changed multiple times trying to keep her blood gases at the right levels.  Her levels can swing pretty dramatically each day.  Sometimes her levels are too low and other times they are too high.  Always a balancing act. 

There is a lot she is dealing with right now with her infection and poor lungs, those being her 2 biggest obstacles.  They started her on a new anti-fungal medicine that is usually used on adults, but they are hoping it will work for her.  Her lungs are at a critical stable state with little to no wiggle room for treatment.  We just got off the phone with our night nurse and she said Julia is saturating well, and her blood gas is good.  So she is able to wean her a little on her vent, but she is still at 100% oxygen.  Her urine output is improving which is very important due to her swelling, so hopefully she will continue that,   Or we might have to put her hands in warm water while she sleeps.    Or maybe we could put a little portable water fall by her bed to entice the urine output.  During pregnancy I can practically pee on command.  Sorry TMI(too much info).  

In all seriousness, this has been a extremely difficult time for us(in all aspects), and we also feel for each of you who are going through this with us.  I guess the hardest part for us right now is the unknown.  If, when, where, what?  And all the complications that go with the if, when’s, what etc.  We believe in miracles, and we feel if God wants her to be made whole, he will make her whole.  But we also accept God’s will that if he wants to take her he will.   Julia is at a point where she isn’t quite making an indication of which way she wants to go, she is just sitting on that fence still.  The doctor is surprised that she hasn’t leaned one way or the other. He says usually a baby in her condition would indicate that to us.  The doctor’s will let us know when we need to say mercy, but they aren’t there yet.  But she is hanging from a very delicate thread.

The last 6 and a half weeks Bill and I have had all of our control taken away.  We’ve had to rely greatly on faith, prayer and inspiration for our decision making.  But yet we still recognize and appreciate all of the blessings and miracles small and great that we have received.  On Sunday I was able to attend church services at Primary Children’s hospital, and the speaker talked about being grateful and recognizing blessings in our trials.  I was truly touched with a congregation full of sick children,  parents of sick children and the doctor’s and nurses who attend them.  There were very few dry eyes in the congregation after the beautiful message. 

A positive attitude and continued faith in our Father’s will, can help us get through any trial(s) even the very difficult and tender ones.  Thank you again for your many prayers, texts, service, love and support.  It means so much to us.  We love you! 

P.S. It’s late, please excuse grammar and scattered thought. 

Minute to minute, hour to hour, and day to day.

Last night about midnight we received a call from Primary children’s telling us Julia’s Blood gas (CO 2) levels were extremely high, and her blood was becoming acidotic, and that we may need to go down.  She is always critical, but last night she was critical-critical and not her usual stable-critical Julia.  Yesterday morning Julia started on the Oscillator vent, around noon she was than switched to the “Jet”ventilator and then they switched her back to the Oscillator last night hoping that would bring her blood gas levels back down.  So far the switch back to the oscillator has helped.  They also gave her fluids and extra platelets to bring those levels down too.  This whole week has been critical-critical off and on.  We have been receiving late night and early morning calls all week about her critical condition.  I  thought I was saying good bye to her several times this week, but somehow she surprises us and pulls through.  I haven’t had ulcer’s for a long time, but I think they are back.  If she makes it through all of this, her drama and trauma is spent with me.  No more, especially when she is a teen.  I’ll make sure her nurses let her know that. 

Even with all the craziness I like to focus on the positive, even if it’s a tiny thing.  I’ve had a couple of sweet moments with Julia this week.  Before her perforated bowel surgery, the surgical tech said I could kiss her before she scrubbed her down for the surgery.  I’ve never kissed her before, so I stole two kisses.  It was such a sweet moment, especially since I didn’t know if she would tolerate the surgery.  Crazy!!  Yesterday when Julia was having a good moment around 1:00pm or so I was singing and talking to her, she opened her huge eyes and blinked at me a couple of times.  This was quite the treat, because of her non-responsive state from surgeries and med’s this week.  I felt like she knew I was there, and she was letting me know she was there. 

Colleen, I apologize for the hysterical late night call.  Thank you. 

I am grateful and amazed at how quickly Heavenly Father has responded to our prayers.  Especially last night.  And I am grateful for the inspiration doctor’s and nurses have received to help get Julia back to her “stableness”.  I stand all amazed……

Thank you everyone for your continued prayers, love and support.  We apologize for our crazy moments in all of this, and hope none of you have to ever experience this.  The other NICU parents are going through the same thing we are at some varying degree, and I wish I could just hold them and say everything is going to be alright.  Wow, when our children get sick it always reminds us of our great love for them.  I know Heavenly Father is aware of what we are going through, and he also love’s us so much. We love you all! 

What a crazy ride!

After moving Julia to Primary Children’s, the last few days have been fairly stable for her.  For Valentines day, Erin spent it with Julia, and I took out my other 4 valentines out for dinner. (They chose McDonalds and play dough ice cream )  Every day we have called the NICU and Erin has gone to Salt Lake to spend time with her.  It is a constant balancing act for the nurses and doctors as they work to keep all of her vital signs and levels in order.  By today, we thought we had started to have a few days of being stable with Julia.  (Stable being a relative term as she is still in critical condition.  Her lungs are still in bad shape and she’s fighting a fungal infection.)  

Now for the crazy part of the ride.  I got a call from the NICU just after 3pm today saying that they had done an ultrasound of her abdomen, as it was still quite large, and found that she had stool outside of her intestines.  So basically the original concern from Saturday of a perforated intestine was accurate.   This meant that she had to have surgery to clean it out and fix the hole in her intestine.  Erin and I zipped down to Primary Children's as quickly as we could to be there for her surgery. 

With her condition, everything is critical and as the surgeon put it, “lethal”.  So we were very concerned with how she would handle the surgery.  The surgery went smoothly and Julia handled it well with good vital signs throughout the procedure.  What they found is that there was a “blow out” in a section of her small intestine.  There was also a good amount of stool and milk in her abdomen.  The surgeon cleaned everything out and now has a stoma, which is basically the bad part of her intestine on the outside of her tummy.  It’s kind of weird to see, but that is the best way to handle what she has. 

Now she is back to the routine of watching her vitals and trying to keep everything right where is should be.   Besides being way to early, she has 3 major issues.  1. Her lungs are in bad shape. 2. She has a fungal infection that will take 4 weeks min to get rid of. 3 She has a profusion in her intestine, which has now been operated on.  Everyday could mean something else.

We hope and pray that she will get stronger and overcome these issues.  We are so grateful to all of our friends and neighbor for their help, as well as the great Nurses at McKay Dee that we no longer see.

Primary Children’s Hospital

Where do we start?  It has been a while since our last post.  It’s such an up and down ride, that it’s tough to know just what to post and when to do it.  You can tell by the title that some things have changed this week.

The week started with some good improvements.  Julia was able to oxygenate her blood better on her own, and increase her feeding amounts. They had to put in a jugular pic line that sounds pretty scary, but went in well and she was doing fine with it.  Erin was even able to hold her again for the second time.  An hour of pure bliss for her.  Julia’s lungs were still not looking very good, but she seemed stable and in a good place. 

Around Thursday morning things started to get out of balance. Her saturation levels (blood oxygen) started to swing around a bit.  They were trying to get her back in to a stable place, but different levels kept changing.  Nothing new here, but it was a step back from where she was just a day before.  On Friday we went up to see her after a ward dinner.  The doctor’s told us that her little heart was thickening and bigger due to all the hard work it was doing to pump her blood and deal with the pressures of the ventilator.  We left that night not feeling so good about her condition.  Erin headed up to the hospital Saturday morning and found that things were a bit worse.  Little Julia’s liver was about 2 to 3 times larger than it should be.  Basically her liver is struggling to do it’s job.  She also had not been urinating very much or had a bowel movement.  Again, more negative signs to cause concern.  I headed to the hospital to give Julia a blessing and be with them both.  Later Saturday night we got a call from the NICU again.  This time they informed us that her abdomen was expanded and they were concerned that she had a profusion in her intestines.( basically a hole, and possible intestine tissue damage)  They also felt that she needed some more help which could better be administered at Primary Children’s hospital.  Plus Primary Children’s surgeons would be in a better position to perform a surgery on her intestines if needed. 

So the decision was made to Life Flight Julia to Salt Lake City last night.  Erin and I headed down and were there when she arrived.  There was not much they could do last night, so we stayed at the hospital overnight to be there for her.  This morning the doctors and surgeons had discussed her situation and decided that for now, there was no need to do any surgery on her tummy, and that the inflammation may just be due to an infection rather than a hole in her intestine.  Finally some sort of good news, as her body probably couldn’t handle the surgery right now.   They are watching her closely to see what to do next.  They basically told us to go home and rest. (easier said than done )

She is basically a very sick premature baby.  She’s always been on the “critical” side, but now is even more critical.  I’m sure there is some fancy term for it. 

This is Erin speaking now.  Wow, this has been so hard!!!!  I suppose it is easier to type than talk right now.  Tears are at a constant “drippage”. In all seriousness things could really go either way right now.  And that’s what makes it so hard.  Becoming a mother has been one of the greatest gifts of my life.   I feel so privileged that my Heavenly Father has blessed  me with 5 beautiful amazing daughter’s.  Unfortunately Julia has been dealt a hard hand of cards to play.  She has been such an amazing little fighter so far!   My greatest comfort is my knowledge of my Heavenly Father’s plan.  Julia will always be ours.  Whether we get to raise her here in this life or the next.  She has so many family and friends to love her here on earth as well as in heaven.  Selfishly,  I would  prefer to raise her here.  I know Heavenly Father is capable of all things, as well as miracles.  Just her very life is a miracle.  I am so grateful for the privileged 4 and a half weeks that I have had her for already.  And if she chooses to stay longer I will be so much more joyful.  Medically she has many challenges, and many good things ( like her no bleeds in her brain, good skin, and just being so cute ).    I just don’t want her to have to suffer a life full of pain.  But we know miracles can happen.   We love you all so much, and are thankful for all of your prayers, love and support.  Thank you for everything.  We have faith in our Heavenly Father’s plan and give him our support in all the outcomes of this life.  I just hope I will be able to be worthy of the great blessings he’s given me. 

Weekend Highlights

Julia has had a few good days.  After some rough days at the beginning of last week, it was really nice to see some improvements.  On Friday, all of the girls were able to visit the NICU again, for the weekly “Ice Cream and Isolettes”.  (yeah! ice cream)  They get to color pictures that get put on Julia’s isolette

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The sister’s artwork

After taking the girls home, Erin went back to see Julia and for the first time was able to hold Julia in her arms.  It was quite a treat to finally be able to hold her.  According to Erin, Julia is so light that it felt like holding just a couple of blankets in her arms.  What a sweet moment for them. 

Yesterday, Julia continued to do well, so they decided to give her a real “tub” bath and not just a sponge bath.  The nurses called us and we were able to watch it on the web cam they have over her isolette. (Really nice feature of the NICU) They said that she really loved her bath and was calm throughout it. 

                  

                         

To add to the excitement of our Saturday, we also now own a new 7 cubic foot chest freezer.  It is dedicated to one thing only.  Milk storage. To be more specific, breast milk storage.  Our fridge freezer was pretty much busting at the seems and after some encouragement from a good friend, (Thanks Amber..) I caved in and we bought the new freezer.  So you know we already have a nice one, but it is well stocked with beef and other items.  We didn’t want to risk the milk to get cross contaminated.  Erin calls it her liquid gold, as it is the best thing for Julia, and it’s a lot of work and time to pump every 3 hours.

 

Tonight, Julia is up to 5ml of milk every 4 hours. (basically 6 teaspoons a day) We hope this helps her grow quickly.  Her lungs are still the biggest concern right now, but they look to be improving at a “baby step” pace.  She is slowly having her oxygen and nitric oxide levels weaned.  This means they don’t have to give her so much to keep her blood oxygen levels where they need to be.

All in all a pretty good weekend for us. Thanks for all the love, support, and prayers.

3 weeks old today! Yeah!

Julia turned three weeks today.  So gestational age is 26 weeks.  Crazy!  Julia had a good day today, to make up for the last day and a half.  She continues to struggle with her lungs, but has had some improvements.  Her saturation levels have been very nice today.  It’s still quite the balancing act of what they do for her.  They try to push her independence without throwing her out into the deep end.  For example giving and taking on her meds, sedatives, oxygen etc.    Recreating the womb on the outside is not the easiest task in the world.  So Mom’s enjoy the discomfort of pregnancy while your bodies produce the perfect growing environment for your baby.  I must admit that I get a little jealous of those big pregnant bellies I see, wishing that Julia could still have that.  I suppose Julia has been thrown into the fight whether she likes it or not.  But fortunately she is a fighter, and the pain she feels now she will forget.  Mom won’t, but she will. 

Thank you all again for your prayers, love, service and support.  We have really been lifted through all of this.