We’ve received an important update from Riley. Jeremey says that Haven’s open-heart surgery is finished. The surgery consisted of placing Haven on a heart machine, placing a stint in the hole in her heart to keep it open, and then placing an additional tunnel in the aorta in order to direct blood to the lungs for oxygenation. Finally, they take Haven off of the heart machine and see how she does.

Right now Haven is in critical condition and her heart is being assisted as she has just been through a very strenuous surgery. The next 8 hours are crucial in seeing how Haven will recover.

Please keep watch for more updates.
Your encouraging comments are appreciated by all.

Uncle Justin

We’ve heard back from Jeremey and Alison as the doctors are giving a report about every hour during Haven’s day long surgery.

They have begun reconstructing the aorta so that Haven’s heart can pump blood to her lungs and get oxygen to her body. They are about half way done. After Haven is done with this inital surgery she will begin the busy task of recooperating for a couple weeks.  

We’re thinking and praying for you Haven!

Uncle Justin

The surgeons have begun working on Haven’s heart.  They had some trouble finding and getting to the hole between her atria (the one that has to stay open–see the HLHS page), but they got to it eventually.  They are preparing to start reconstructing the aorta and put in the tempory “tunnel” to get blood to her lungs.  Other than they are a little behind schedule due to their having trouble finding the hole, the surgery seems to be going well so far.

Haven has been in the operating room for 3 hours now.  As of 9:45am they were still prepping her with new I.V.’s as well as getting her hooked up to the ventilator and bypass machines.  Of course, she has been put to sleep with anesthesia through all of this.   

Good-morning.  We just saw Haven off to surgery.  We were able to hold her for a little while early this morning.  Her nurse said she had a really good night.  Haven was in good spirits despite being a little hungry (she couldn’t eat past midnight last night). 

We were thankful to meet the surgeon this morning.  He is a very kind man and everyone here speaks extremely highly of him both as a surgeon and a person.  So far, we agree.  We are also thankful today because we found out that there will actually be TWO cardiovascular surgeons working on Haven simultaneously.  We don’t get the impression that that happens a lot. 

Starting around 9:00am this morning we are supposed to be receiving updates on the hour.  The day could last for a long time.  We will try to keep you updated as we get updates.  If you don’t read a post from us, it will be from Grandpa J or Uncle Justin.

Thanks for all your prayers.  We should all be thankful that Haven has two of the best heart surgeons in the world working on her today.

Haven had a great night last night.  The nurses found out that she just loves to sleep curled up on her tummy.  Alison was discharged from University Hospital this afternoon and is slowly regaining strength.  We met with a lot of doctors on Haven’s “team” today.  She will be taken to the operating room tomorrow morning at 7:00am.  When it’s all said and done, we should be able to see her again around 6:00 or 7:00pm tomorrow evening.  She will now be in the Pediatric Intensive Care Unit (PICU) on the second floor of Riley to be more closely monitored (she has a nurse assigned specifically to her 24 hours a day).  She can be there anywhere from 1 week to 3 or 4 weeks to recover before going to a less intensive unit.  I know some have been asking about an address for us down here.  If you would like to drop us a note via mail, please send it to:

Jeremey & Alison Johnson, Room 15
c/o Ronald McDonald House
435 Limestone Street
Indianapolis, IN  46202

We’ll try to keep you updated as we receive updates throughout the day tomorrow.
 

We can’t express to you how much of a blessing it is to know that you all are out there checking up on us. Every comment we read gives us that much more strength. Thank you!

We are continually being told that Haven is doing very well (considering she only has half a heart, of course). We started nursing Haven yesterday, but she is not quite the pro-eater yet. From the minute she was born, she has been receiving Prostoglandin intravenously (this will keep the hole in her heart open until the first open-heart surgery). Prostoglandin has several side-effects, one of which is making the baby very tired. So, most of the time when we try to nurse, she just curls up next to Mom and sleeps. SO, they put in an NG tube (feeding tube through the nose) last evening just to make sure we can get her plenty of food to keep her weight up. She can still nurse with the NG tube. She is scheduled to eat every three hours and we try to make it to at least three of them a day.

The cardiologists are happy with how stable she is and how big she is and have decided to perform the first open-heart surgery this Friday. We will be meeting the cardiatric surgeon tomorrow. We do not yet know exactly what time the surgery will be, but from what we understand, it is roughly a 17-hour ordeal.

The next bit of good news is that Alison will hopefully be discharged from IU Hospital tomorrow sometime and though as of this afternoon, the Ronald McDonald house was still full, we received a surprise phone call this evening of an opening!! We are very thankful for this because now we can stay here close to our baby!

We are anticipating that we will be able to answer some of your comments and personal emails next week after Haven has come out of her surgery. We will have a little more time then since we will not be able to spend quite as much time with Haven for several days after surgery.

We love you all!
Jeremey & Alison (and Haven Leigh)

THE PICTURES ARE IN!!!

Be sure to check out the picture page for more of this beautiful new addition to our family.

Jeremey is going to try and post later this evening. However, they are staying awfully busy taking care of Haven and running back and forth between hospitals (Mom is recovering at IU Med Center and Haven at Riley).

Haven is doing very well considering her condition and since she is looking strong the doctors will be prepping for her first surgery probably sometime at the end of this week.

We love you Haven!

Your Uncle Justin

(This message was originally posted on Dec 12, 6:03pm. It was moved to the front page by Justin)

We were able to be with Jeremey and Alison for Haven’s birth. What a day of excitement and wonder! Alison did such an awesome job, docs and nurses were amazed (no epidural!). Of course, she had Jeremey right there every second to hang on to. They were the same sweet loving couple as they always are, working together to bring Haven into the world. Grandma Joy was at the delivery and Grandpa Kevin, Grandpa Johnson, and Aunt Jenny supported from outside the door. They really surprised the whole staff by insisting on doing this on Monday (well, really Tues. 12:12am). We are so happy that Haven is so strong and healthy, and that she is in such great care. Thank you all for your prayers, thoughts, support, and encouraging words. We’re excited about this website that will keep us all connected to what is going on in our granddaughter’s life.

Love,
Kevin and Joy

Some of you have asked about getting phone numbers or addresses to reach Mom and Dad at the hospital. Unfortunately we can’t post much information on the blog since it is still a public website that anyone can view.

However, there are ways to find out information if you are determined enough… 😉
Right now Haven is at Riley and Alison is still recooperating at IU Med Center. Mom and Dad do not know the exact room they will stay in, but housing is available.

Firstly, you can post what you want to say on the blog. This is one of the quickest forms of communication. When Mom and Dad do get on the internet they check the blog first. Also, people close to them are checking the blog multiple times a day and relay messages as often as they can.

Secondly, there is the ‘Contact’ link at the top of the blog or on the right sidebar. On the ‘Contact’ page Mom and Dad have setup a special email address for HavensHeart.net. You can email them any private messages. However, as of right now they have very limited access to the internet and so may not be able to respond quickly to your inquiry.

Thirdly, If you would like to speak to one of our operators about shipping arrangements, you should contact a grandparent. Grandpa Johnson, Grandpa Kevin, or Grandma Joy will be able to physically reach them with any mailed items or personal messages and communicate to you about other options.

With all this said, Jeremey and Alison wanted to relay that they wish they had time to sit and talk to each one of you individually about the situation, but regretfully it is not possible. especially for the time they are spending with Haven.

Jer should be on the internet this afternoon to make another post.

Thanks for all your interest and concern!

Uncle Justin