Haddie Update 6-28-13

Been a few days since I have updated so we thought we would bring you up to speed. Haddie has been making some progress! Figure it might be easier to do this in categories:

Breathing- They extubated her last week and she was put on RAM...which is a type of high flow oxygen. She did great on that and so yesterday they bumped her down to just plain high flow. So far, so good.

Infection- They are continuing the antibiotics for the infection Haddie had. She seems to be doing better. They noticed that she was a little pale that past few days so on Wednesday they gave her a blood transfusion to help her out. That went well.

Food- She is up to 32mls of feed! So hopefully that will help her gain some weight a little more quickly. She currently weighs 3lbs 9oz.

Brady's- She did well while on RAM and had very few Brady's and Desats. Yesterday she had a few brady's. She was very agitated yesterday for some reason. But she's doing better today. Hopefully she can have less of them. Our goal- no bradys for 5 days/5 days of consistent weight gain. That equals her getting out into open air.

Future Surgery- Hadassah will, at some point, have to have a surgery to remove what's left of the teratoma. We had no clue as to when that would be. We called Dr. Flake and he said it would depend on her weight and an MRI of the area. She has to be 3kg before he would do the surgery. That's 6.6 lbs. So we know it will be a little while. However, Haddie may be able to go home before the surgery and then come back. Say she gets out of her box, breathes and feeds well on her own...but she's only 5 lbs or so...he said he wouldn't keep us in the NICU just to wait for weight gain. But ideally it would be good for her to gain the weight and get the surgery so we could go home and not have to come back. The MRI will reveal if the teratoma is growing or going to cause any other problems.

Visitors!!!!   We had the Tewangers and Metz last weekend. Kate's mom and grandparents got here Monday and are staying until the 5th. My parents are coming out Monday and Tuesday for their 30th anniversary. The Belpre youth group is coming out to do a service project and visit Haddie the 4-6th...then on the 6th the Brown's from Belpre are stopping in on their way to New York. Whew!!! We are excited to see all these people! It keeps us busy and we love to show off our cute little girl.

All in all, we are doing pretty good. We get homesick from time to time but that's normal I guess. We keep rolling and praying Haddie keeps making progress. We are really hoping we can make it back home in August. Thanks for all the prayers and support. God is good.

Have a great weekend!!!!!!!!

Preemie Sneezy Update

Things are going well. Haddie is still on antibiotics  and will be for the next two weeks for the infection. I posted a picture a few days ago with Haddie without a mask...I need to clarify that. Haddie is not in open air just yet. They had taken out her breathing tube and taken off all the tape. Then they put her on RAM...a type of high flow oxygen. What was cool was that she was without any breathing assistance for 2-3 minutes and she did great. She needs to gain weight for 5 days and not have a Brady for 5 days in order to be in "open air". Open air means she will be out of the box regulating her own temperature and it also means we can dress her. She may or may not still be on oxygen at that point.

Enough of my writing. I lured you into this blog with the promises of a cute sneezing baby....enjoy!

Link in case video doesn't play:

Preemie Sneezy

Video Update

Had a good day. 1pm we met with the 98.1 radio station to do an interview. They do a radio fundraiser for CHOP in September and they share a bunch of stories. We got to share Haddie's incredible journey. They will edit it down and give us a copy when they are done. It was very cool.

Kate had a good time at scrapbooking after that. Each Thursday she goes in and works on a baby book for Haddie. I do not attend...not because I'm above scrapbooking but because...well I dont want to. We did a video update of our meeting with the doctors at 3 and the PICC line they were trying to insert today.

Here's the link for anyone who cant see the video: http://www.youtube.com/watch?v=nzwtlCbqR14

She's got a ways to. But we will just keep taking it one day at a time. We are very excited to see Nathan, Carley, Lucas, Aimee, and Bella tomorrow night and spend the weekend with them. Then Kate's mom and grandparents are coming on Monday and staying a week or so.

Love you all! Have a great weekend!

Pickin on Haddie

I was gonna write out a blog about today but Kate posted a FB status that pretty much sums it up:

We couldn't hold Haddie today because she needs a PICC line and the 1 1/2 failed attempt at the bedside tuckered her out. Tomorrow they will try at interventional radiology which is an ultrasound guided placement. This is for her three week course of antibiotics. She has to keep her breathing tube until this is done. But, in awesome news, she has reached her 1500 grams (3 lbs 5oz) which means that if she has 5 days of weight gain and 5 days of no bradys (she is at 4 of no bradys) then she can try air mode which means.......... We get to dress and swaddle her!!! Yay! Keep it up Haddie 

So basically things are going okay. Hoping they can get that PICC line in tomorrow without any problems. That would make it so they wouldn't have to prick her again and again over the next 3 week of antibiotics.  Once the line is in she shouldn't need the breathing tube any more. 

It's amazing to me to see our daughter's "feisty" personality again and again. Every single nurse has commented on it. Haddie throws her arms around wildly sometimes. She will also fight the nurses if they are bugging her. This morning we called and the nurse told us she had Hadassah on her belly with her head facing to the right...since thats where the breathing tube was. She went in and Haddie had picked up her head and turned it all the way to the left! The breathing tube somehow stayed in. She's beautiful...and she's got spunk....that's a good combination. 

Birthday/Father's Day Update

Had an excellent birthday yesterday. Got to spend it with my wonderful wife, precious daughter, and my mom and dad....not sure what more I could ask for....o wait...cake...ice cream cake...and I got that last night too!

Haddie is doing okay right now. She had to be intubated 2 days ago because she was having trouble breathing due to the infection. She has been recovering the past two days and seems to be coming back to her feisty self. They had stopped her feeds again but they started her on 6mls of fortified milk yesterday. They arent sure what caused the infection. The antibiotics seem to be working on whatever it is. They did an ultrasound last night to check and make sure it wasn't meningitis. They don't think it was but they have to check. We'll find out the results today on that.

I still got to hold her yesterday...Kate let them know it was my birthday. We also found out a few days ago (and I forgot to post about it) what Hadassah has to do to get out of CHOP. We werent given a timeline so I asked the nurse how it would work for a typical preemie. I told her throw out the brain injury and teratoma...what markers do we need to see?

- Growth. If she gets up to 1500 grams she can be taken out of the incubator and we can put clothes on her. I cannot describe how excited this makes my wife! Trust me, we already have a ton of clothes for her. Haddie is at 1400 grams which is 3lbs 2 oz. Then she would have to continue to grow and manage her temperature since she will be in open air. We don't have a set goal weight really.

-Breathing/Eating. She could technically go home on oxygen but that wouldn't be ideal. Shes already proven that she can breath mostly on her own...thats just be hindered by a PDA and infection. She gets over that and we think she's fully capable. She could also go home with a feeding tube...but we are pretty sure when the time comes to try breastfeeding...she will be a champ.

-No Bradys- She has to stop dipping her heart rate so low. Preemies usually stop doing that around 34-36 weeks. Haddies at 32 weeks. Part of her bradys are probably due to the PDA and infection along with her prematurity. So we feel good that she can handle this challenge too.

Most preemies do not leave the NICU until their due date. August 8th is Haddie's due date. So you factor all of that and we have a timeline. It may be longer due to any complications the brain may cause and the surgery she needs to remove whats left of the teratoma. We arent really sure when that surgery will be.

So that's what we know. Haddies making progress and she looks to be gaining weight in the right way...her belly looks normal again. I'm looking forward to celebrating Father's day with her...and my great dad tomorrow. Hope you all are having a great weekend. God bless and happy father's day!

Infection

Yesterday Kate and I were finishing up our kangaroo time with Haddie and we put her back in her incubator bed. The nurse let Kate and I tag team her diaper. She had really filled it up! Then as we were about to put on her clean diaper she unloaded again. This time though the color was a bit different and had some red in it. We called the nurse in and she said she would show the doctors. They said it may be do to them fortifying her feeds and they would go back to straight breast milk for the night.

We then got a call this morning at 6am that she was having some troubles. She had several bradys and desats during the night. As I've said before, she has these regularly but apparently she was having more trouble. They told us she may have an infection and that they were going to a septic workup. "Septic" is a scary word in the NICU. It's right up there with SIDS. Basically it means the infection has spread and is shutting everything down.

We called 10 minutes ago and it sounds like they have things more under control. They stopped her feeds, put her back on CPAP, and are giving her antibiotics. She's moving around a bit more and seems to be doing better. They think it's an infection but they aren't sure on what type it is. 

Marathon...not a sprint. 

We are headed that way here in a few minutes. Hoping that she levels out and gets back on track. We take comfort in knowing that God has brought us this far, and He obviously has a plan for Hadassah. We also know that at any given moment that people are praying for her. We want to thank you for that...you are her prayer warriors. 

Hope you all have a great day. God bless. 

What's Up?

Well to answer the title of this post we'd have to say "not much". Hadassah has been progressing and is doing pretty good. We show up at CHOP everyday around 1pm and stay until 6 or so. Kate and I take turns holding Haddie and we usually kangaroo her for 2+ hours. She seems to really like it. We help change her and do her general care. Since the nurses are switching every 2 days and we are there every day, they usually refer to us on what Haddie likes and how to go about taking care of her.

Haddie's acidosis is under control and isn't an issue anymore. She is frequently loading her diaper which is a good thing. She's also up to 20 mls of milk every 3 hours. She's is on the lowest setting for the air support.

The only issue is that Haddie is having "bradys" short for bradycardia. Basically her her heart rate drops all of a sudden. Sometimes this is accompanied by the desaturation of oxygen in her blood. This brings the nurse to check on her. Usually by the time the nurse gets in the room Haddie has resolved the issue herself. She gets the levels back to where they need to be. Every once in awhile she needs stimulation where we give her a little movement and that helps her get back on target. They tell us this is a preemie thing.

So all in all things are going great. And that is what worries us some. We are glad and are enjoying this time...but many people have told us that its 2 steps forward and 5 steps back in the NICU. Haddie has had a few steps back and now she's moving forward. So we rejoice and thank God she's doing good...but we aren't sure what's up around the bend. So maybe us worrying is a parent thing? We know God is in control and we know you all are praying. So we'll just keep rolling and see what He has in store.

Tomorrow is her 1 month birthday. Thanks for all your prayers and support. Please keep them coming.

Below is the link to the video of Haddie's grip on mommy.

Haddie's Grip

Cute Video Update

Below is a link to a quick video update
of what's been happening. Hope you all are having a great week. Gob bless!

https://www.facebook.com/photo.php?v=529352217862&l=6812554884730182500

Growing Girl

We have had a couple of good but slow days. Haddie has been recovering from the PDA problem. They had put her on CPAP and cut her feeds. Then a couple of days ago they started her on a small feed amount. Her belly was getting bigger. She needed to poop and finally last night she did. They also reduced the CPAP level down a bit and today she's up to 6ml of milk.

She is gaining some weight. She now weighs 2 lbs 13oz and she measures 14 inches long. It's exciting to see her getting bigger! Also you can tell by the most current pictures that our baby now looks like she's ours...because she is white! Her skin in looking normal and well...she's just plain cute.

The sad news we have is that Camilla, the girl across the hall, passed away yesterday. She had been having struggles from her skin problem and the family was called in yesterday. Please pray for Manuell, her father, and the whole family.

Hope you all have a great week. God bless!

PDA is Closed

Just wanted to give you all a quick update in case you hadn't heard. Yesterday the nurse practitioner came in and let us know that they had some news. They had started the indocin to get the PDA to close in the heart and had done an echocardiogram to check the progress. No one really expected it to work for Haddie. They had told us beforehand that due to her age and other complications this would most likely provoke a surgery.  Turns out that during the echo they saw that it had started to close and by the time they were done, the PDA was completely closed! The NP said that this was completely unexpected and that she was really surprised. She said that several times.

We were excited but not that surprised. Whenever God's children come to His throne, He hears them. And as I have said before, He has the power to do anything. And we thank Him for closing the PDA.

Haddie still has to deal with what is called acidosis, a high level of acid in her blood. They are currently treating that. They thought it was due to the PDA but since that closed...they aren't sure just yet.

Thank you prayer warriors for your love and support. God is good.