Wednesday, January 30, 2013

Matilda surgery update

Today was long and hard. They took Matilda in at 8:30 a.m. and finished at about 7:30 this evening. The surgeon successfully completed the procedures he wanted to do, but Matilda did not react well to being removed from the bypass machine that was being used to pump her blood so they could work on her heart. So they've had to put her on ECMO, which is a complicated machine that you can read about online. We're thankful that she survived the surgery, but we can't stress enough that she is still in extremely critical condition and is in the ICU. The next 48 hours will be very rocky. We have decided to only update the blog once in the morning to let you all (our dear friends and family!!!) know how the evening went, and once in the evening to let you all know how the day went.

The doctors and nurses have been amazing as has Rev. Ryan Ogrodowicz, who has been providing much needed pastoral care for our family.

Tuesday, January 29, 2013

Lots of Matilda pictures!

This is right after the C-Section:

Weight right after delievery:

Baptism action shot!!!

Post-baptismal Benediction (not staged):

Kristina seeing her for the first time post-delievery:

Fammo looking on:

Look at that hair!

This is reality:
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Surgery tomorrow

Surgery is set for tomorrow morning at 8am. It will be long and complicated one, 6-8 hours. Right now Matilda is doing somewhat ok, and they will be working on stabilizing her as much as possible before surgery. The days after surgery will be very much up and down, and we will probably not be updating the blog very. Thank you all for your prayers and concern. We appreciate it very much.

Matildas hjärtoperation är planerad till i morgon kl 08. Operationen är komplicerad och tar 6-8 timmar. Just nu mår hon någorlunda ok, och de kommer att fortsätta att stabilisera henne under natten. Dagarna efter operationen kommer att vara väldigt mycket upp och ner, och vi kommer antagligen inte att uppdatera bloggen väldigt mycket, men vi är tacksamma för alla förböner.

Matilda update

Things have changed, but not in an unexpected way. Matilda has required cardio version (to have her heart shocked) twice in the last hour and a half due to an erratic beat. Her blood pressure also lowers when they attempt to ween the Dopamine. The heart surgery has been moved up to tomorrow morning.

She is still very cute though.

Picture of Matilda!

Matilda update

She's doing better than we had hoped! 5.10 lbs (2530g). Heart rate is in the 140s. Oxygen is in the 80s all by herself.

Monday, January 28, 2013

Matilda update

At our appointment today our doctor said it was time to act. Matilda's heart rate has been consistently low with little variation. Another concern is a small amount of fluid around the heart. They've scheduled a C-Section for tomorrow morning at 7:30 AM. Please pray for Kristina and Matilda.

Thank you to all who are helping us through this. As we speak two amazing women from Grace Lutheran Church are driving Edith from Burkburnett to Haslet to stay with friends. We couldn't have done all of this without everyone's help.

Vi är nu på sjukhus i Fort Worth. I morgon kl 7.30 kommer de att göra kejsarsnitt. Vid dagens kontroll såg läkaren lite vätska runt hjärtat, och hjärtrytmen var inte heller så bra som önskat. Just nu är dock läget stabilt.

Vi är så tacksamma för all hjälp och alla förböner. När detta skrivs är två underbara damer från församlingen på väg med Edith till några vänner som bor här i närheten. Weslie kommer att åka dit i kväll för att natta henne. Vi skulle inte klara av det här utan all hjälp.

Monday, January 21, 2013

Matilda update

We've just returned from our most recent trip to Fort Worth. This time was much easier as we were able to stay with the Hales and bring Edith with us. All things considered (and that's a lot of things) Matilda is doing as well as can be expected - perhaps better. She's growing well (5.11 lbs - 2.3 kg) and is actually creeping close to Edith's birth weight. The heart continues to grow, but this time the doctor (Dr. Bleich) said that she thought she saw more lung tissue than she had before. This is pretty good news if it turns out to be the case.

Please keep us in your prayers as we must now start twice-weekly trips to Fort Worth beginning with this Friday. The plan is that Kristina will make it to full-term (Feb. 26th) and have a standard delivery. Hopefully this will be the case as it's best for Matilda and Kristina.

We're so humbled and thankful for all of the support and concern shown by you all through this.

Wednesday, January 16, 2013

Edith update

Edith had her first check up in a long time on Monday. She is 24.8 lbs. (11.25 kg) and 30.5" (77.5 cm). We really liked our new doctor, Dr. Kadokol, and she was very impressed with Edith's development. She didn't say that she's a genius, but she didn't have to....

Good news all around! We're blessed to have such a happy, healthy little girl who brightens our days and reminds us of the many gifts we have to be thankful for.

Christmas 2012

You'll all understand that these are a bit late this year! This is what is becoming an Odom family tradition for Christmas Eve breakfast. French toast and bacon:

Fammo and Faffa (and aunt Leah!) watch via Skype as Edith opens some presents:

A very nice pillow from Fammo and Faffa:

Christmas Eve supper (Julbord). This year was smoked ham with mustard glaze (rökt skinka med senap), carrot casserole (morotslåda), rutabaga casserole (kålrotslåda), mashed potatoes (potatismos), etc.:

Edith on the "phone":

"Is that it???"

Family picture at lunch:

Apparently taken DURING the Christmas morning service ?!?!:

Edith and Papa:

Living room all decked out for Christmas:

Edith being cute:

Opening stockings:

Checking out a gift from Elizabeth:

Wednesday, January 9, 2013

Matilda update

Tiden går och vi har kommit till vecka 33. Idag hade vi ny kontroll hos kardiologen och fick samtidigt också träffa hjärtkirurgen. Matilda lever, växer och visar fortfarande inga tecken på hjärtsvikt. Hennes hjärta fortsätter dock att växa och är nu 75 % av bröstkorgen. Lungorna är därför väldigt små och det är mycket osäkert om det finns tillräckligt frisk lungvävnad för att hon ska klara sig. Det kommer klarna först när hon är född. Hon kommer att behöva respiratorvård för att blåsa upp lungorna och försöka få dem att fungera. Om det lyckas, ska hon opereras efter 2-3 dagar (och förstås senare i livet om allt går bra). Så Matilda fortsätter att överraska oss alla. Ingen hade trott att hon skulle leva så här länge. Hennes hjärta är större och lungorna mindre än någon av läkarna har sett. Hennes hjärtfel är också mycket ovanligt. På det här stora barnsjukhuset ser de bara ett barn per år med samma fel. Vi har verkligen blivit välsignade med en ovanlig baby, men trots all oro och sorg, skulle vi inte vilja vara utan henne. Vi är tacksamma för alla böner, och behöver dem också i fortsättningen.

We are now in week 33 and today we had another appointment with the cardiologist, Dr Roten, and we were also able to meet with the surgeon, Dr Tam. Matilda is still alive and growing, and shows no signs of heart failure. The right atrium keeps growing though, and the size is of the heart is now an enormous 75 % of the chest cavity. Because of this, the lungs are very small and it is uncertain whether there will be enough healthy lung tissue for her to survive. We will have to wait until she is born to see how the lungs are doing, but she will need to be intubated and put on a ventilator to expand the lungs and try to get them to function. If that works, she will need surgery on her heart after 2-3 days (and more later if everything goes well). So our little Matilda continues to surprise everyone. No one had thought she would still be alive. Her heart is larger and lungs smaller than any of the doctors have seen before. Her heart defect is also very rare (especially in combination with Down Syndrome) - they only see one of these per year at Cook Childrens' Hospital, which is very little considering how big the hospital is. We have truly been blessed with a very unique child, and despite the heartache and worries, we would not want to be without her. Thanks for all your prayers, and please continue to pray for us. We need them all!