Friday, November 30, 2012

Matilda update


video


We had another visit with our usual specialist, Dr. Bleich today. She was pleased and encouraged by the cardiologist's report. She was also pleased with Matilda's growth, which is normal and good. Her heart (right atrium) is still very large, but doesn't seem like it's growing at the same rate. Of course, this doesn't mean that it's shrunk, but that her body is growing and, it seems, the heart growth rate slowing slightly. We think/hope. Thankfully, we don't have another visit to Fort Worth until the 21st of December, which is a great blessing. The trips are becoming very tiring.

So, all in all, no news is good news! Above is a video of the ultrasound that they did today. Starting around 2:00, you can see the size of the heart and, more sweetly, Matilda's face. There are more images of the face later on in the video.

Saturday, November 24, 2012

Edith's 1st Birthday!!!

Edith turned one year old yesterday. The day began by opening gifts from family in Finland. Here's a book of Mamma Mu from Paul and Johanna (Edith's uncle/future aunt):

 

Skyping with family in Finland:


Next was Skyping and opening gifts from family in Alabama. Here's a Bama hoodie from Famo and Fafa: 


She also got a babydoll, which was a bit confusing at first:

But she figured it out quickly:


Very cute birthday dress we received from the Gregorys on her baptism last year. She's just now big enough to wear it: 
 
 


Kristina made a delicious strawberry cake/tort thing. It's amazing and one of my, I mean Edith's, favorite things: 


Blowing out the candle! 


Some friends from Grace came over and gave her a "church gift" (the pastor disagrees that it's appropriate for church): 
 
 
 
 
 
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New friends and Thanksgiving

Edith has a couple of new friends from the Wirgaus just down the road. Here's Jude and Edith playing…Jude is COMPLETELY FOCUSED on that toy:


SoRena (on left) and Emma (middle). Don't they look so old:

Sam and DoRena Wirgau and the kids were able to come over for our first hosting of Thanksgiving:

There was also quite a bit of food present:
 
 
 
 
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Edith - Big girl

 
 
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Gift from Mommo and Mofa

Edith received a great hat and some homemade porcupine mittens from her Mommo and Mofa:

 
 


She also received a neat Moomin book that had a mirror at the back. This was her favorite part:
 
 
 


I have no idea what is going on here:
 
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Wednesday, November 21, 2012

Tuesday, November 20, 2012

Matilda update

Idag hade vi äntligen en ny kontroll hos barnkardiologen Dr Roten, vilket vi väntat på i två månader. Hon var mycket mer positivt inställd till Matildas tillstånd än vi hade vågat tro. Hjärtat fortsätter att växa - och kommer nog att göra så under hela graviditeten - men det är förvånansvärt starkt, och Dr Roten trodde att det finns en ganska god chans att hon ska klara sig utan hjärtsvikt kanske t o m graviditeten ut, då det gått så bra hittills. Hon skulle i alla fall behöva klara sig till vecka 34 (jag är i v 26 nu), för att ha en realistisk chans att överleva utanför livmodern. Då är hon ca 2 kg, vilket innebär att hon kan klara av en stor hjärtoperation. Det lät också som att hon kommer att behöva en sådan ganska omedelbart efter födseln. Hjärtat går att fixa så att det fungerar, men det är tyvärr inte det enda problemet. Storleken kan leda till att lungorna inte kan utvecklas normalt, vilket kan komma att bli det större problemet i längden, då det inte går att åtgärda med operation. Så i slutändan kan det bli så att hennes hjärta är ok, men hennes lungor har tagit så mycket skada, att hon inte kan överleva. Det är dock omöjligt att säga före födseln. Det finns förstås fortfarande risk för hjärtsvikt eller blockering av stora blodkärl innan vi kommer så långt. Nu blir det att vänta igen, till v 33 (9:e januari), då vi ska träffa Dr Roten nästa gång. Samtidigt ska vi träffa kirurgen som ska operera henne. Vi tackar Gud för de goda nyheterna vi fått idag, och ber att Han ska bevara vår lilla Matilda också i fortsättningen.

Today we had a new appointment with the pediatric cardiologist, Dr Roten, which we have been waiting for the last two months. She was much more optimistic of Matilda's likelihood of making it to the delivery than we had thought possible. The heart continues to grow, and will do so during the whole pregnancy, but it's surprisingly strong. Dr Roten thinks that there is a pretty good chance that she will not develop heart failure, though it's still a concern. She needs to make it to week 34 (I'm in week 26 now) to have a realistic chance of surviving outside the womb. By that time she would be over 4 lb, which means that her chances of surviving a major heart surgery are much better. It also sounds like she will need one very soon after birth. The heart can be made functional, but unfortunately it's not the only problem. The size of the heart can affect the development of the lungs, which in the end can become a bigger problem as this can't be surgically repaired. It could be that her heart can be made functional, but the lungs have so much damage, that she can't survive, though this is impossible to predict before birth. There is of course still a risk of heart failure and blocking of large blood vessels before we get that far. Now we just have to wait again until Jan 9 (week 33), when we will meet Dr Roten again. At that time we will also get to meet the surgeon who would operate on Matilda. We thank God for the good news we received today, and we pray that He would continue to keep our dear Matilda safe. 

Monday, November 12, 2012

Matilda update

Ännu en kontroll, denna gång här i Wichita Falls. För två veckor sedan togs ett blodprov av mig (nytt test istället för fostervattensprov) för att testa för kromosomfel. Idag fick vi veta att Matilda verkligen har Downs syndrom, men det känns som en ganska liten sak i jämförelse med hennes hjärtfel. Ultraljudet visar fortfarande inga tecken på hjärtsvikt, men höger förmak bara fortsätter att växa. Läkaren som vi träffade förra gången hade räknat om gällande storleken på hjärtat och fått det till 63 %, och nu såg det nästan ännu större ut, så vi antar att det är ca 65 % i förhållande till bröstkorgen. Nästa veckas tisdag ska vi äntligen få träffa barnkardiologen igen och vi hoppas på lite mer svar angående framtiden och eventuella behandlingsmöjligheter.

We had yet another appointment today, this time here in Wichita Falls. Two weeks ago they drew some blood from me for a new, but very reliable test called MaterniT21. This, like amniocentesis, tests for cromosome defects, but is obviously much less invasive. We got the results today, and they show that Matilda really has Down Syndrome. This seems like a very small thing compared to her heart defect though. The ultrasound showed that there are still no signs of heart failure, but her right atrium just keeps growing. Dr Bleich had looked att the numbers and pictures again from two weeks ago, and changed her calculation of Matilda's heart - chest ratio to 63 %, and today it seemed even bigger. This is obviously not good news, and it is very hard to see that her heart just keeps getting worse and worse. Now we are waiting for next week's appointment with the pediatric cardiologist, and we hope we can get some answers about the future and possible treatments. 

Monday, November 5, 2012

Vårt hus

Här kommer lite bilder från vårt fina hus.

Ediths rum:

 Vårt rum:

Gästrum:

Vardagsrum:



Matrum: 

Kök: 

Kontor: 

Bakgård: 



Framsidan av huset: