Thank You

When I first moved to PA I saw it simply as an opportunity to complete residency. Something I had to do so I could go back “home” to KS and really start my life. There was obviously a bigger plan to me moving here. Not only did I meet the man of my dreams, marry him and have kiddos but I also met so many amazing supportive people here, who became my friends.

I never thought when we found out about Owen and what we would be going through that so many people would rally around us. For all of you, thank you. I will never be able to say that enough. For all those of you who fed us when I couldn’t get off the couch or was in the hospital thank you. It was good to know that my family was properly fed even if I didn’t want to eat or couldn’t keep it down. For my unit for the ridiculously generous gift that will most definitely help with the medical bills that I am just waiting to roll in, thank you. I always knew neurology was the place for me and you all prove how great our department is. I am so honored to be able to work with all of you as an attending in the future. Everyone who has run into us, sent cards, flowers, emails or facebook messages thank you. The words of support mean more than you know. It definitely makes us feel so loved and cared for, which is truly helpful in a time like this. For my graduating high school class for feeding us and helping us keep our house clean when we were in the hospital and spending endless hours in the NICU thank you. You know you have true friends when you haven’t seen them in years and they still feel the desire to help when you need them. For everyone who came to Owen’s memorial service, it helped to see kind smiling faces that day, thank you. For our pastor who was  there to baptize Owen and has come to the NICU to pray for Olivia on a regular basis, thank you for your time and your prayers. For Josh’s family who has been there for us with everything we needed, watching the girls, bringing bunk beds, and simply support I thank you. When I am so far away from my entire family it is nice to know I have you around. For our doctors and nurses in the NICU and the MFM department for everyone who took care of me, Owen and Olivia I will never be able to thank you enough. Not only did you save my daughter’s life but you made it possible that I could be with my son before he passed. We had the absolute best care anyone could ask for and there is not another institution out there that I would want my family at.

My husband… there are no words for everything you have done. Thank you for your support both emotionally and physically. You never questioned my breakdowns or my crazy obsessions with things being certain ways. For always trying to take care of me when I didn’t take care of myself, for watching the girls and letting me have my time with Olivia in the NICU, for being my biggest support and my rock, thank you.

I have been beyond blessed to have so many wonderful people in my life. I cannot ask for more. If any of you need anything at any time, I am there.

Thank you all for everything you have done for me and my family. I am truly grateful.

Update on Olivia Paige

As of 11/4/12, Miss Olivia Paige is 3 weeks and 5 days old. She corrects to 31 3/7 weeks gestational age. We have now spent every day for the past 26 days in the NICU, most of those days we were there for the vast majority of the day. Yesterday was Josh’s first day back to work so I spent the day with the big girls and only spent a little over an hour with Olivia while Josh watched Ems. I already have the guilty, bad mama feeling because of how little time I spent there today. Logically I know that she will never know but I still feel like I am doing her an injustice when I am not there all day.  When Emma was in the NICU she was discharged on day 24. We are now 2 days past that duration with Olivia and fully expect her to spend another 7-8 weeks in the hospital prior to being discharged home. All in all I cannot complain about how her progress has been. A few bumps in the road here and there but she is definitely on the right path. For that I am truly grateful, and I know her brother is looking out for her.

 

I have been keeping notes about everything that has been going on so I wouldn’t forget. As the days are pretty much the same details tend to blur together. She was born 10/9/12 and immediately placed on nasal IMV which is a fancy way to ventilate a baby through their nose rather than them needing to be intubated. I am so happy she never needed intubated, that would have made things so much harder. She had 2 doses of surfactant on her day of birth which unfortunately didn’t seem to help her RDS as much as one would have hoped but she has done well regardless. She is currently still on the nasal IMV but on such low support she likely does not need it any more but they don’t want to force her off of it so she can get off all respiratory support as quickly as possible. She is actually doing very well for a 27 weeker from the respiratory status. She had a picc line placed and was started on tpn (total peripheral nutrition) along with tiny breast milk feeds through her OG tube 4 times a day. She was getting 1ml 4 times a day, 4mls… not much but it has been shown to greatly lower the risk of necrotizing enterocolitis (NEC, one of the most common complications of extremely low birth weight babies). So far her gut is doing awesome. Tolerating full feeds through her OG tube and pooping like a pro (amazing what you get excited about in the NICU, a poop is a wonderful thing). Her tpn was discontinued on 10/25 because she was doing so well with her feeds and her PICC was pulled on 10/30. She is currently without any IV which makes getting her out so much easier. Because she was so early she had an echocardiogram which showed a pda (patent ductus arteriosus). For those not in the medical field this is normal in fetuses, it shunts the blood from artery to artery to avoid the lungs because a fetus is not oxygenating blood by its lungs, it is preoxygenated by mom. This shunt typically closes within hours or a couple days after birth in full term babies. Olivia’s was pretty wide open so they decided to medically close it so we would not have to worry about it possibly causing problems a few weeks down the road. This was found on 10/15 and she had 3 doses of indomethacin every 8 hrs then was re-echoed. The indomethacin did it’s job and closed the pda and she was restarted on feeds on 10/17. On 10/23 she had her routine cranial ultrasound that all babies born before 30-32 weeks gestation get. Unfortunately this did show a small bleed in her ventricle on the right side. IVH grade 2 because there was a very small amount outside of the germinal matrix. These bleeds are very common in preemies and actually somewhat common in full term infants as well, but most babies aren’t scanned to look for them. Grade 1 and 2 typically have no effect on outcome of the baby for their development lifelong. Grades 3 and 4 are the ones you want to be concerned about. Olivia’s bleed is tiny, our NICU attending said that with the size of hers he believes she will do just as well as she would have done without it. Something that is there, but should not affect her at all. I do believe that he is correct and she will not have any change in outcome because of the bleed but I really felt at that moment that we will never catch a break with this pregnancy/these babies.  She has a repeat ultrasound on Nov 6^th to follow the bleed. So far she has required 2 blood transfusions which I am told is very normal for extremely low birth weight infants. She was found to have some desaturations and bradycardia episodes in relation to her feedings so her feeds were put on a pump so she gets her 24ml of breast milk pumped into her stomach over 45 minutes. This started on 10/31 and has really improved her episodes of desaturation. We have had 3 days now of her being almost a perfect baby in that regard (but don’t tell her or we will jinx it).

So that is where we are in Miss Olivia’s short life. She is up to 2 lbs 12 oz, 11 oz above birthweight. All in all she is doing very well and we have had no major setbacks.  We continue to pray for her strength and growth as we never know what could happen over the next several weeks.

 

“Before I formed you in the womb I knew you, before you were born I set you apart.” –Jeremiah 1:5