Thursday, March 6, 2014

Welcome to the World!

on January 19, 2014 our perfect little girl was born; Raelin Marie Grube! at 9:53 am she was born and weighted 4 lbs 14 oz and was 17 3/4 long. Many doctors where unsure o what was wrong wt our little princess but after many test we were able to narrow it down. She was diagnosed with a very rare syndrome; Translocation of Chromosome 1 and 9. 

While pregnant we were told many different things ranging from Down Syndrome (best case) to Lisnensipholy (fatal- not living past 2 years of age) so when we got this news we were excited but yet concerned as to what little Raelin was going to experience. 
Unfortunately, not many doctors know what to expect with this syndrome because it is so rare. However we were prepared to deal with whatever was thrown at us. 

Raelin was in the NICU for three weeks (longest three weeks of our lives). While in the NICU, Raelin received all sorts of testings. Her biggest struggle is eating. They put a feeding tube trough her nose that way if she was not able to eat all her bottle or tire out we would still be able to feed her. we even had a Car seat test (since she was so little) if she could sit in her seat for 90 mins with no issues then she would be able to go home with us! 

We were luckily able to bring her home on February 6th, four days after our due date. This was very exciting for us and her big sister Tessa. This will be the first time that she would be able to hold her new little sister and get to actually spend time with her!

Since then we have been seeing a Neuro, Gastric, eye, and Genetic doctors. on top of her regular pediatrics doctor.

Raelin Marie will be two months in 2 weeks and we are so proud of our little peanut! We hope and pray that she continues to grow and gain wight!

Types of chromosome translocations 
a. Reciprocal translocations 
Reciprocal translocations are the most common type of 
About 1 in 930 people in the general population have a 
reciprocal translocation 
These translocations can occur between any of the chromosomes 
and involve pieces of any size. 
The translocation arises when an exchange of chromosome 
material takes place between two different chromosomes; for 
example, where there is an exchange of material between 
chromosomes number 1 and number 9 (Figure 7.3). Pieces of each 
of these chromosomes have changed places. 
In this case, where there does not appear to have been any 
loss or gain of chromosome material, the translocation is 
described as `balanced’ 

Figure 7.3: A person with this chromosome arrangement has a 
‘balanced’ translocation’ with the equivalent of two chromosomes 
each of numbers 1 and 9. 
The exchange involves loss of the short arms of two 
chromosomes and fusion of the remaining two long arms 
at their centromeres 
The result is one long chromosome that consists of two 
long arms of either 
- The same numbered chromosome 
- Two different chromosomes and containing either 
one or both entromeres

Joshua 24:15

...As for me and my family, we will serve the Lord."

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1 comment:

  1. Prayers for you all, thanks for posting all this information...all I do is read, read And read