Well Keith and I found out that we were expecting #4 and we were sooooo excited! We had decided we wanted an even 4 and God had blessed us once again! We secretly wanted a girl...so we could even it out with 2 & 2 :o) At 9 weeks and 11 weeks I even took one of those gender predictor tests and both said Girl! We knew deep in our hearts that we were having a girl...and at 20 weeks we found out for sure that it was a girl!! We were so excited and on cloud nine! Because of my high risk pregnancy we saw the high risk doctor just a couple weeks later. At that appointment our worlds were rocked for the first time. We found out that Katelyn had a Saccrocygeal Teratoma....which was a rare tumor (or tumors) in her left buttocks and at the base of her cocyx bone. I was devistated.....this tumor can be fatal for many fetuses. After looking at pictures on the internet I was terrified...overwhelmed and crushed. The weeks that remained were a loooonnngg 18 weeks. I was monitored every other week by the high risk Drs and monthly by the regular OB until 30 weeks and then it was every week by at least one Doctor. As if things weren't stressful enough at that time, Keith was called out of the blue and offered a job at Laughlin AFB in Del Rio. It was a promotion or we wouldn't have even considered it due to the timing. We asked if we could wait until after the baby was born to report...the answer was no. We asked if we could wait a couple months...no. So we asked when we had to report....answer was 3 weeks. EEKK! We had no choice but to accept and get busy. Moving when I was 7 months pregnant wasn't exacly my idea of fun and especially to a tiny little border town with very little medical care. We moved there knowing that I would most likely have to travel back and forth between Del Rio and San Antonio...a 3 hour drive. After moving to Del Rio, I went to my first High Risk OB appointment in San Antonio within a week. During that appointment came another game changer. The doctor said she didn't see how I was going to travel back and forth being pregnant....knowing that at any moment I could give birth to our daughter due to the extrememly HIGH amniotic fluid levels that I had or fetal cardiac failure from the tumor. I esentially was given the choice to stay there in San Antonio or somewhere in a big city and close to NICU prepared to take care of really sick kiddos. Since I didn't know anyone in San Antonio the closest family was in Austin. That solved one problem which was where I could stay....but I am a stay at home mom who was taking care of our 3 kiddos! Where are they supposed to go while I am on bedrest in Austin? Keith quickly called around for childcare. I know God had a plan from the beginning....Keith found an in home childcare on base who had just opened up and had no children at the time....totally open. She immediately took our two boys which was a huge blessing. I stayed in Austin for the remaining 2 months of my pregnancy going to at least 2-3 Dr appoints a week. They monitored the tumor for growth but more importantly they were watching Katelyn's heart for warning signs of hydrops...fluid on the heart that would indicate heart failure from pumping so much blood to not only her tiny little body but to the tumor. She almost always passed her fetal assesments but sometimes it took a really long time to get her movements in. She just didn't move much in the womb. Not only that but I had insane amounts of amniotic fluid...enough for 3 pregnant women. They chalked that up to her lack of movement but my high risk Dr was honestly puzzled. She had a gut feeling something else might be wrong. I refused to think anything else other than the rare tumor she already had could be taking place. I was scheduled for a c-section May 8th in order to get her to 37 weeks. The surgery went well and Miss Kate was born 7lbs 3oz and 19 inches long. She was by far our smallest baby. Our other children were 10, 11, and 12lbs....so 7.3 seemed so tiny! She was beautiful...but quite bruised and swollen. The nurses took her to the NICU and I went to the recovery room. The nurses initially tried getting Katelyn to eat but she seemed exhausted. She didn't cry, didn't seem hungry and was quite worn out. They couldn't get any breastmilk down Katelyn and decided to stop with the bottle attempts because she was "worn out". She immediately got IV fluids to keep her hydrated. I kept pumping and trying to get things going just in case she suddenly was ready to eat.
On day 3 I was released from the hospital and Katelyn was medically transported to Dells Children Medical Center. She stayed there and prepared for her surgery on Friday, May 18th. Immediately after getting there nurses and doctors were commented on how floppy she was. I struggled to bring memories back into my mind of when my other kiddos were newborns. Did they sleep this much? Did they move more than this? Were they this floppy? Every part of me wanted to believe that her symptoms were due to the tumor in her body and not anything else. After only being there about 3 days, Dr Thorton the neonatoligist had a talk with me. He told me that he had layed in bed the night before and a thought kept going around and around in his mind. He told me that what had been going through his mind was Prader Willi sydrome. That he wasn't saying that was what it was for sure...but that he thought we should for sure test for it. So they did bloodwork and sent it off to the Mayo Clinic and Baylor. So we waited....in the mean time surgery day was upon us. That was a scary day. Waiting for her in the waiting room seemed to be 3 days crammed into one. It is almost like you can hear the second hand moving on the clock....tick tock....tick tock....tick tock. They finally came out and told us that Katelyn's surgery had gone well, they had removed all of the tumor and the coxyx bone (which is where they believe the tumor originates from) She was intubated after surgery which I hated. They tried extubating her 3 days after surgery and after an hour and a half of her gasping and laboring for air...they had to re-intubate her. I was devasted. She was then intubated for another 4 days....when they were finally able to extubate her. She was then on oxygen for another week. Kate had to sleep prone (on her tummy) while her stitches and incision site healed. In the mean time, Katelyn eventually got her IV's out and off the IV fluid and a feeding tube back in her nose. We continued to try and feed her but she just couldn't suck. Katelyn remained on the feeding tube, recovering from surgery for the next several weeks. When Kate was 3 weeks old we received the lab work back. We were told Katelyn had Prader Willi syndrome. I was in shock....but knew somewhere in my gut by now that this is probably what the diagnosis would be and it was confirmed. Looking back we think the tumor was a blessing in disguise. How could a rare tumor be a blessing u ask? Well if Katelyn had not had the tumor...we most likely would have been sent home right after birth...and the Dr's would have written off her lack of movement and non-aggressive eating as fatigue from birth....just exhausted. But since we were in the hospital to have the tumor removed, they were able to quickly make observations and send off for testing.....a blessing in disguise. Kate stayed in the NICU for 32 days and we were finally discharged and sent home. She was sent home on the NG feeding tube and I was trained to take care of all of her feedings and how to insert and take out her feeding tubes.
Big sister Kenna decorated Katelyn's NICU room door
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