Sunday, August 16, 2009

The first 3weeks of Saul's life.

Hey there! I can't believe our wonderful Saul is here!! He is such sweet baby boy! I'm soo excited to have added him to the family! The past 3 weeks have been nuts. I can' t believe it's already been 3weeks that we've been here @ Riley Hospital! Soo I'll tell the story the shortest way I can without leaving out details, cause if nothing else I want to remember this time of our lives. So 2days before Saul's arrival Si got us a hotel room at the Shereton to just have a couple days to ourselves and kind of prepare for what was ahead of us. It was so nice to have that time, the first day we had the girls for a few hours just to spend some last moments together as a family of 4, that to was awesome. So the August 28th came and I went "under" in the O.R and woke up to the nurses saying that Saul was just fine, they didn't see or feel the cyst in his neck and he was doing great!! Pretty awesome way to wake up! Well they decided they would take an ultrasound of his neck just to make sure, even though at the time he was breathing on his own and doing so pretty well. By the second day though poor Saul was having a SUPER hard time breathing, every time he took a breath his chest caved in as if he were hiccuping. So the Dr.s decided to intubate him ( a breathing tube) so he could breathe easier, and also put a feeding tube down his mouth all the way to his stomach. When the results of the ultrasound came back they saw that the cyst(which was actually a enlarged lymph node) was indeed still there, it was just under the muscles in his neck and behind his trachea. So they decided they were going to do this thing called Sclero therapy. Basically an Intervention Radiologist puts a drain tube in the cyst (using ultrasound) drains the cyst, inserts alcohol and some other solutions, drain the solutions out and leave a suction on the tube to continue to suck out any accumulating fluids. Usually they do this therapy 3times in a week and they only had to do it 2 times with Saul because it was working so well and he didn't have much more draining out of the cyst. So after 2days of they therapy they took the drain out and extubated him (took his breathing tube out),let me start nursing to see how he would breathe while doing so. Saul knew just what to do! He latched right on and chugged for a good half hour the first time he ate, and kept doing well so they then took his feeding tube out. I just have to say our little sweet heart was known for being fiesty and trying to pull his tubes out of his mouth when they were in, the nurses just loved him but he would scare them to death when he would get a hold of those tubes! haha! He just knew they didn't belong in him! I also praise God for "hiding" the cyst when Saul was born , because he didn't have to have surgery and was able to have a much less invasive procedure done, the tube was basically the size of a needle and so you can barely even see where it was done. Thank you Lord for keeping our baby safe! If they would have gone in for surgery it would have been significantly more dangerous then they originally thought because the cyst was just beyond the Aorta and surrounded by a lot of important vessels, and organs, that it would have been super risky to do, so again, PRAISE GOD!!! So after a few days of nursing and doing well they let us take him home at 9on Monday night. OH MY you should have seen the girls faces when they saw their little brother! it was priceless! and of course i immediately started bawling just having our family of 5 finally together after 13 long days was awesome (the girls were not allowed in the NICU to see him). The whole ride home the girls were just falling head over heels in love with their little brother, his little hands were holding his fingers and their conversation about him was just precious!! they would say things like " i bet he really likes riding in the car" followed by " he's like what's a car, he doesn't even know what a car is" everything they said was followed by the " he's like whats__" SOOOO CUTE!! We got home and the girls got to hold him assisted by the boppy and adult supervision, Nadya couldn't get enough of him, she just wanted to be with him and was soooo distraught when she had to go to bed, Bella fell asleep in the car and so she didn't get to hold him the first night home. the next 2 days were bliss, the girls just loved him, they wouldn't leave his side, they came and talked to us while i nursed him they came and helped w diaper changes, they even helped with a bath and they both washed one of his legs, he even peed on both of them! HAHAHAHAHA! that was hilarious and they just thought it was the funniest thing! He is such a good baby, his doesn't cry too much , and most importantly he would have slept through the night if I let him! I had to wake him up every 4hrs to eat!!He also smiles a lot, mostly when he's asleep but his smile looks just like his 3D ultrasound photo of him smiling. That smile is going to be the end of me, I'll let everyone know that right now! Then on Thursday he had an ultra sound appointment, so we came back to Riley , the IR Dr. (Dr. Marsheleck) came and said the cyst hadn't grown much and would not affect his breathing, however he still wanted to do the Sclero therapy a gain to kind of "kill off" the cyst so that it wouldn't become a problem cause you never know how much it will fill up and didn't want us to come home and have an emergency situation on our hands. So he gave me the option of doing it on Thursday or doing it next week. Bella starts Kindergarten next week and I really wanted to be home for that so i said to go ahead and start the therapy that day. Well Dr. was really pleased when the procedure was over, he had drained 21cc out of the cyst the first time he drained it and on Thursday he only got 3cc!! So he only did the therapy once and now we are just waiting to go home after having an ultrasound on Monday, I'm really hoping that the ultrasound shows that the cyst has no fluid in it, or is at least so little that they are comfortable w sending us home. So tomorrow will be 21days of being here @ Riley, minus the 2 days we got to be home. Saul has been doing great, in fact they would have sent him home Friday but because he has the ultra sound tomorrow they wanted to keep him because when he goes out into the real world and comes back in he may carry outside diseases in with him. so we are keeping the other babies safe. I am tired! I'm ready to be home, I've spent some nights in the lounge, and some nights they are able to get me a room in the Ronald McDonald house. I'm just so ready for this to be a memory and be home with my family! I miss Simon and the girls sooo much and am ready to be all together again. After we go home , we'll still have to have weekly ultrasounds and then monthly and so on just to keep an eye on the cyst until they are for sure it's dead. Please continue to pray for our family and for our sweet Saul. He is soo precious and I can't wait for all of you to meet him! Only one more day!! Then I will post some photo's up of our handsome little boy.


Joel, Hillary, Camden and Kendall said...

You are precious to me, Rene, and so is your sweet family. You've been in our constant thoughts and prayers. We love you and continue to hold you close! Keep us posted.