Our Gabriella is here!

5-10-2009 I am sorry about the delay in posting... but it was a rough couple of days before our precious girl arrived...  I had to have a emergency c-section with local anesthesia.  I wished I did not have to because I wanted to hear and see Gabi but that is what had to be done to get her out safely, so we deal with it!

But lets get on with the most important news... Gabriella arrived on Sat. May 9th at 5:12 am, she was 7.4 pounds!  I first saw her in the late morning and it was the greatest feeling u could imagine,,, I have to say I never thought u could feel like this!  I was lucky to have Fil be with her and update me with all the information prior to seeing her!  She did very well, they placed her on a conventional vent and sedated her with low doses of morphine because so she can stay very calm.  She was handling very well and they were even lowering her oxygen slowly every couple of hours, all her blood gases were normal  which impressed all the neonatal team.
    We were so happy with the news but with all CDH babies this is called the "honeymoon period" so things can change quickly... that night to be how quickly things happen!  Her heart rate jumped to over 200 bpm and her blood pressure lowered.. they quickly gave her a increase of dopamine and "rescue" injections to help with her stats...  this helped but it was not perfect.  This AM at rounds they decided to change her meds to help change the stats.. They decided to give her a steroid and slowly wean her off the dopamine and they also gave her a "baby foam bed" which she seem to love..  her stats changed remarkable.  YAY!!! They have dwindled her down to 30% O2 which initially was at 85% .  our little fighter is making strides!  We are happy and enjoying every moment that we have..  Please continue with all the positive thoughts and prayers!  We are so grateful to everyone for thinking of our girl!  We will update further and hopefully have some pics to show off by tomm.


Love&Hope,
Joanna&Fil

Gabi's last BPP and NST

5-5-2009 I want to start by saying that we are so grateful for all your thoughts and prayers!  Gabi needs all this positive energy!  We are also incredibly lucky to have such a supportive family who have made such efforts to come and visit us and call us everyday!  I don't know what we do without all of you! I appreciate all my visits with friends and family!


Well today was Gabi's last tests...  no more US gel on my stomach!  I have to say it is bittersweet, I was used to like hearing "she looks great", "she doing beautifully" and all these positive notes about Gabi. 
But now she will be arriving and I will hear a mixture of good and bad throughout the day... hopefully more positive than negative but with CHD babies things change very quickly!

I will keep this blog as updated as I can, Thursday will be long day but not sure if anything will happen until Friday so we will see. 

Please keep baby Ruby in your prayers as well!

Hope&Love,
Joanna

Friday might be the day....

    5-1-2009 I was able to change the date for my inducation to Thursday May 7th... one more day whoohoo!

My appt is at 6:00 AM yes I wrote it right.. then by 7:30 I will be given prostaglandin which will be in for 12 hours, they don't expect me to go into labor until the following day when I am given Pitocin.  So Friday May 8th Gabi should arrive! 

Again thanks for all the support and prayers!

What is CDH?

4-29-2009 There have been questions about CDH so I have included this post to give people a clearer understanding of what Gabi is going to be dealing with. We also have included a couple of links to websites and videos that will provide helpful information. This info was collected from the CHOP website.

Overview of Congenital Diaphragmatic Hernia (CDH)

Congenital Diaphragmatic Hernia (CDH) occurs in about one in every 2,500 live births. Absence of the diaphragm may occur on the left, right or both sides, but the absence on the left side is most common. There is a wide discrepancy between the “visible” mortality from congenital diaphragmatic hernia reported from children's centers, which treat only those infants who survive gestation, birth, resuscitation, transport and often major surgery, and the true mortality for congenital diaphragmatic hernia, based on all prenatally diagnosed cases, which has been called the “hidden mortality” of Congenital Diaphragmatic Hernia (CDH).

Evaluation of congenital diaphragmatic hernia (CDH)

While the majority of congenital diaphragmatic hernias are isolated, further (careful) fetal evaluation is needed to rule out other birth defects as well as chromosomal anomalies, since they may adversely affect the outcome.

Important prognostic predictors (for survival of congenital diaphragmatic hernia) include the degree of fetal liver herniation into the chest and the presence or absence of other anomalies. The lung-to-head circumference ratio (LHR) is an ultrasound-based measurement of the contralateral lung area taken at the level of the 4-chamber view of the heart. The measurement is corrected for gestational age using the head circumference. Values less than 1.0 are considered severe, and are associated with increased morbidity and an increased need for extracorporeal membrane oxygenation (ECMO).

Prenatal evaluation of congenital diaphragmatic hernias consists of a Level II ultrasound, an ultrafast fetal MRI, fetal chromosome studies, and a fetal echocardiogram. As soon as the results of these diagnostic tests are reviewed, a pediatric surgeon and an obstetrician skilled in prenatal diagnosis will meet with you and your family to discuss prenatal management, delivery, and postnatal treatment options. You will also receive educational information about congenital diaphragmatic hernia and a tour of the Newborn/Infant Center, which offers high frequency ventilation, nitric oxide, liquid ventilation and Extracorporeal Membrane Oxygenation (ECMO).

Treatment options for congenital diaphragmatic hernia (CDH)

Whether a family chooses to terminate the pregnancy or carry to term for postnatal management, accurate counseling regarding the expected outcome is crucial. For congenital diaphragmatic hernia fetuses with chromosomal anomalies, survival is rare.

Postnatal management strategies for congenital diaphragmatic hernia include planned delivery, immediate stabilization, and immediate access to specialized ventilation techniques including nitric oxide and ECMO. In rare cases, a specialized delivery technique, known as the Ex Utero Intrapartum Treatment (EXIT) procedure, which offers immediate ECMO cannulation, may be an option.


LINK to Video that is very informative. Most of the people in the video are people that we have met and will be helping Gabi beat this defect.  
---->  http://www.chop.edu/fetalsurgery/everything_in_place/index.html">http://www.chop.edu/fetalsurgery/everything_in_place/index.html

Link to helpful websites:

Childrens Hospital of Philadelphia (CHOP) --> http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164Cherubs'>http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164">http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164
Cherubs --> http://www.cdhsupport.org/">http://www.cdhsupport.org/  We have met a lot of very supportive people through Cherubs, thank you all for your continued support and prays for Gabi.

Next week Gabi will be here!

4-29-2009 I had my routine tests done yesterday and as always Gabi passed with flying colors! She always does so well on her tests! The midwife noted that her non-stress test is the best she has seen in a long time.. I hope that this translates to Gabi being just as strong when she enters this world and begins her battle against CDH!
After that Vera(midwife) spoke to one of the doctors and scheduled my induction for Wed. May 6th... OMG! I can not believe it! However I am trying to change it for Friday since it will be easier for Fil because of work
He needs to work as much as he can before having to take vacation days... and it will give two extra days too.

You would think I would want to have Gabi already but I know she is safe inside my belly right now, I could protect her there but when she is out, it is different ballgame! Our baby girl will have to fight for her LIFE!

Mother's Day is coming up and Gabi will probably be here! My first Mother's Day and all I want is for Gabi to be home with us! It is not much to ask but I have to realize it is not the case!

Thanks for all the thoughts and prayers and supporting us through this journey!

Hope&Love,
Joanna

37 weeks and 1 day

4-24-2009 I had my normal tests today, Gabi was quiet initially but we woke her up and she passed her tests... she is so good. We got to see her foot perfectly, it was jammed into my right rib, that explains why it hurts there so frequently.

My midwife had to check if I was dilated today, what fun that was(NOT). I am not dilated but I am "ripening" which is good... I will be checked every week, so excited LOL.

I am just happy it is the weekend since my hubby is here and I get visitors which I always enjoy!

That is all for today.. but I do ask that you keep baby Ruby in your prayers also, she is at CHOP and still on ECMO..

ENJOY THE WARM WEEKEND!!!!

Hope&Love,
Joanna

Almost 37 weeks and counting...

4-22-2009 We decided to start this blog since Gabi will be here soon and it will be difficult to communicate with everyone on how Gabi is doing.
Most of our family and close friends know about Gabi's diagnosis and know about everything up to this point. This blog is going to focus on the arrival of Gabi and her journey with CDH.

I have to say time is going so fast, I can not believe that in about 2 weeks our little girl will be here fighting for her life. I am so nervous and anxious not knowing what to expect since every CDH baby is different. We know the basics like she will be intubated right away in the next room and once stable she will be transferred down to the NICU. I hope I am able to see her even if for a moment. Fil will be able to watch as they stabilize her so he can let me know what is going on. Once she is stable in the NICU we can visit.
Then it begins... every hour is crucial and ever changing, no plans are made well in advance. We need her pressure to stay under control. We also need that lung tissue to be viable and work as it should. If not ECMO might have to step in to do the work for her and give her break. Even though we prefer not to use it, ECMO is required to keep her going.

I have an appt. on Friday for my routine tests, Biophysical, NST and OB exam. I am not sure but they might check if I am dilated but if not I know next week for sure. I will be 38 weeks by next Friday and depending on what they see I might be induced by 39 weeks.
All my tests have been great thus far.. the staff always informs me that Gabi looks great and shows off. I wish that meant she will do better when she enters this world.

Well there is a rough intro... I will post any news as it comes! Please keep Gabi in your thoughts and prayers! We appreciate it!

Hope&Love,
Joanna