On March 17th 2012 at 9 am I was on my way to SMR to have our 3rd child another precious girl! daddy and I were so excited and ready to get the labor and pregnancy over with. Well I was scheduled at 9 am but they didnt start my induction till 3:30 after labor was started it was an intense 12 hours and 1 minute along with my mom and husband watching Die Hard movies...lol finally at 3:31 am my littlest princess Stellla Raye was here (one push and she was out!...yay) we thought we was gonna have the normal 1 night and then discharged boy was be wrong.. i got to hold her for about 2 minutes then she was taken to get her vitals and cleaned up. well here is where it starts where we found out our baby girl wasn't as healthy as we thought she looked perfect but was alot smaller than our older 2 children (Abigail *5* was 7.8lbs Darick *3* was 7.11lbs) Stella weighed in at 6.7lbs and 18 inches long well the ped. had checked her while we got some rest, i was due to have my tubal done the morning after but they came in told me i had to get up walk around, potty.. (i couldnt walk still had the epidural in) so they wheeled me into the restroom then about 15 minutes later they came in and said my surgery had been cancelled i was confused but said "OK' and took thee epidural out. a few minutes later the on call pediatrician came in and started telling me he had heard a loud heart murmur and thought it could possibly be something a little more serious which woke my husband up from a sound sleep, so we waited and my OB came back in and said as long as i felt ok i would be discharged (after about 7 hours total after having her) so we waited for the transport team, my mom and step-dad showed back up to see her before transport got there needless to say we didnt get to hold her again until late that night once we got to WVU CH where we was met by a student (now Resident) and told us all her test had been done and that Stella had TOF So we spent that night giving her a bath, getting her dressed, then we went over to the RMH while Stella was in the NICU, we went straight back over first thing the next morning and we ewre told at the NICU desk that she had been moved to the NICU Step-down, where we waited for rounds, we were told she had a haziness in her left lung that they were watching so she had frequent Xrays, by the 3rd day in step-down the haziness went away and we were told now it was up to getting her feeds up so we could go home. Day 4 was strictly pumping and keeping her feeds up so we wouldnt have to worry about an NG Tube....Also on day 4 she got to meet both Grandmothers, her Uncle Danny (also TOF) her Ompa (grandfather) and her Big Sister, brother was 2 months too young to go into the NICU! :( finally on Day 5 we got the best news she had passed her carseat test and that we get to take her HOME! pictures were scheduled, videos were watched monitors were unhooked and we had our newest princess on our 3 hour drive home!!! well we totally weren't prepared for a 6 lbs baby girl all i had were 0-3 clothes no NB so once we got back into our hometown we had to make a stop for some baby clothes and such So we met at a local restuarant where our Son finally got to meet his baby sister and afterwards Ompa brought Abby and Darick home where we were finally together as a family! She has done great Excellent nurser, growing, no tet spells and just blended in with the rest of us! :)
We went back for a check up on 4/23, Dr Phillips said everything looked/sounded great as did our appointment on 7/23 which is where they started getting things in motion for her surgery date! about a month later and about every last one of my nerves lol w e finally got her date scheduled 9/25/12 before Cold/flu/rsv season, the time seemed to fly by waiting for that day to get there and about 3 days before the day she started having some tet spells, i was thankful surgery was set for that following Tuesday even though the drive was miserable i cried off and on as we headed for pre-op and all evening, night and morning before, i cried up until i handed my baby girl over to Dr. Gus' team at 9am but after that i felt calm with a tightness in my chest that did not go away until i seen that little man come out of the PICU doors at 2pm, she was out and doing great it took about an hour and a half before i finally got to see her and it was worth it!!! i hated seeing her tied down, sedated and tubes and wires coming out of every part of her but the worst was over, now onto the healing it was everyday something new started to come out of her 9'26 was the breathing tube, 9/27 was the L/A line, then it was the chest tubes then the caudle 9/28 she had to be put on CPAP for less than 12 hours to clear out her lungs, Finally on 9/29 my mom and his dad brought Abby and Darick to see us and Darick asked us "why was baby sister dead??" remember she was laying on her back sleeping hooked up to monitors and to a 3 year old that could be pretty scary seeing baby sister that way but daddy quickly went over and pick her up waking her up so brother could see!!! shortly after they left to go back home we were being moved to the Peds floor were she was hooked up to the portable device and we could walk her around (this was also the day she came off of the O2) we were there until 10/1 with nothing but improvements, so on Monday they came in to put the numbing cream on to remove the Pacer wires then they took out her Art line ,ECHO, (she still had a very tiny VSD) and we got to take our little warrior home... check ups were scheduled for 10/15 with the surgeon they checked her incision and said it looked great, then had to go back up on 10/29 same day as "frankenstorm" hit our area but the appt was quick Dr Phillips listened to her said he didnt even hear a murmur, and was gonna have us back in 3 months but decided since she was doing so great that she didnt need her Synagis and wanted us back in 6 months!!!
well i guess we got punished for being so happy about the 6 month check up on 9/22 thanksgiving we rushed stella to our local ER with a temp of 102 and respitory distress with IV in place breathing treatments done, Steriod given, O2 on she was tested for RSV which came back positive so we waited for transport, a friend of mine (another TOF mom) lived 20 minutes away from WVUCH and when she seen that Stella was being flight lifted there she went and waited for her until either us of my mom got there, we got to her at 5 am (i had to pack for 5 people) and she was happy in mawmaws arms, we were there 6 days and moved to 3 different rooms while in Peds 4 days a nurse notices that her SATS were not improving with chest PT, Breathing treatments and suctioning, so he called Dr Lancaster and he ordered an xray, i had stepped out of the room for a few minutes while Frank was in with her i got to the doors and seen Dr's and lab techs y her room so i quickly went back in, i was pulled into the office to view her xray and was told she had a PneumoThorax (collapsed Lung) and would have to have another chest tube placed :( well back to the PICU we went! chest tube was placed by Stella's ped. cardio. surgeon and we waited and waited for her lung to get better 6 days total, she went from O2, to hi-flow blended breathing treatment after breathing treatment, antibiotics (thought she may have had Pertussis also but that tested Negative) finally chest tube was water sealed and pulled the next day after 6 days! then we had to keep her feeds up, wean her off of the O2 which was tough but finally after 2 weeks we got to go home!!!!!
Now she is doing great and has started with PT, and her Synagis shots per Dr. Phillips!
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