Miracles

I have been working on this for some time and re-reading, deleting and changing but thought I ought to finish it. A few weeks ago I was speaking with someone at the hospital, not from my department or surprisingly not someone Josh knew well. Not someone who knew our story of the twins. As is typical with small talk, she asked me of my children. I always hesitate because I’m not ever sure exactly how to answer that question without making myself and the person asking uncomfortable. I always start with I have 4 and leave it at that unless they push further. She did, and asked boys or girls and then ages. So I told her. Allison 5.5, Emma 3, Olivia 11 mo and Owen, Olivia’s twin who passed away shortly after birth. She had that typical stunned look and asked why he passed. Usually I have retreated by this time so I can avoid a conversation that can push me to tears readily but I was stuck, so I told her Owen’s story. The fact that he was diagnosed with a malignant brain tumor at 23 weeks, they delivered at 27 because of his head size and we had 3 hrs and 39 min before he left us. She paused then asked a question I wasn’t prepared for. At first I thought it was rather bold of her, she does not know me, knows nothing of my faith or religious affiliation. She asked if I was angry because I didn’t get my “miracle.” I asked what she meant and she said we knew of the tumor before he was born, was I angry that he wasn’t miraculously healed. By this time I was able to leave so I simply said “no” and walked out, but it got me thinking. I definitely went through an angry stage with the whole situation but that was really prior to meeting Owen. I felt blessed to have time with him because we knew there was a real possibility we would never hold him while he lived. Because I was allowed that, how could I be angry? I think that the question she asked is complicated. It depends on your definition of a miracle. Everyone sees a miracle differently. Yes, if Owen had been miraculously healed I would consider that a miracle. But how many brain tumors have you really seen miraculously healed? Not many. I have faith unlike many people who are in the medical profession, but I will be honest I did not, for any reason expect Owen to be healed. Practicality? The fact that I see brain tumors on a daily basis? I  don’t know, but I just never would expected a miraculous healing. But had I had my wits about me I would have answered this way… No, I am not angry. I lost my baby boy, my only boy, child 3 of 4 but I know he is better now, he is healed, not suffering from a massive, obstructive brain tumor. But I will never say I didn’t get my miracle because Owen gave me a miracle. He held on long enough to give his sister a fighting chance. This is my miracle….
 

My baby girl was born 1 minute after her twin brother. She was born 13 weeks early. She has no evidence of lasting effects of her severe prematurity. That is my miracle.

 

Olivia turns 1 in two weeks. She is crawling, talking and eating like a champ. That is my miracle.

 

No NEC, no major surgeries, no intubation, no trach, no peg… That is a miracle. The fact that I can look into her eyes daily and see her brother in her… That is my miracle.

 

We have two weeks until we again celebrate and grieve on the same day. Think of us on October 9^th, send a little prayer for Owen.  Gone but not forgotten…

 

No rest for the weary

Being premature has a way of following a kid lifelong. They are at increased risk for a number of things as they grow. So far we had done surprisingly well with Olivia. She had her RSV vaccines and never really had even sniffles through all of cold and flu season. We have had no respiratory issues or eye issues since being discharged from the NICU. She has been growing appropriately and took to breastfeeding like a champ. Since being discharged from the NICU she was noted to have a big head, not big compared to full term babies her age but big for her. Her head just seemed to be catching up quicker than the rest of her. Apparently it is not unheard of in preemies for one thing to catch up quicker than the other, ie weight quicker than length or HC, or length quicker than weight. Hers was her head. It wasn’t abnormally large so we were just waiting and watching. At her  9 mo WCC her pediatrician thought her anterior fontanelle seemed a little full. They asked me, I said it is no different than it always has been so we again went with the wait and watch. At that time she was between 40-50%tile for head circumference. Last Tuesday we took her in for an acute visit because she had developed thrush which was no big deal but the pediatrician on that day remeasured her head. In less than 3 weeks hear head had increased by 1.5 cm and jumped to between the 50-75%tile. Her weight and height remained less than 3^rd percentile this entire time. She was concerned enough to speak with our primary pediatrician and they decided it was probably time to scan her. The main concern being hydrocephalus. Olivia did have a small bleed when she was born but it would be unlikely for a bleed so tiny to obstruct so we were really unsure of what we might be dealing with.  Mind you less than 10 months ago we lost our son to a highly aggressive brain tumor so you can imagine where our minds went. Of course the doctor in me knew that Owen’s tumor has no genetic link and really has no play what so ever into anyone in our family having anything at all similar. However you lose one kid to a tumor and you automatically assume the worst whenever you are faced with symptoms in another child. I have to give our pediatrician props… she managed to schedule an MRI under sedation in less than 24 hours. I think they chose to skip the CT scan because they unfortunately were thinking the same way I was and certain tumors are seen better on MRI.  She had her MRI on Thursday and tolerated the sedation perfectly.  We had our read that evening and it showed benign enlargement of the subarachnoid space. We are lucky that there is nothing bad, no tumor, no significant hydrocephalus, no need to meet with a neurosurgeon. Basically she has extra fluid around the brain, not in it. All the research shows that they have big heads, most growth in the first year, but they tend to level out by age 2 and then grow into their big heads. It does not put her at any increased risk for learning development or delayed motor development.  It does however, put her at a somewhat increased risk for subdural hemorrhages with minimal or no trauma so it is something we will have to continue to monitor and be aware of but overall it is one of the best outcomes we could have hoped for. Now if things can just go smoothly for awhile.

On to the hearing issues. I had issues with the ENT we had initially seen so we were referred to an outside pediatric ENT, Dr. Shapiro, who is amazing and I would recommend to anyone in this area. He was agreeable that yes, there was fluid and yes, it could be causing her hearing loss so first step was to get rid of the fluid. She had tubes placed in June and did very well. While speaking with him he basically had her next few months laid out. Tubes, retest hearing, if she passes fantastic then we go on with life, if she fails then we go to CHOP and discuss cochlear implants. He said if she has no hearing what so ever and we get cochlear implants in by a year old she would have normal hearing and speech. Tubes done, we went back for a recheck on Tuesday.  She did not pass the simple screen then, but he said that may be because of the tubes themselves. We know she has some hearing as she now responds to her name and wakes up when her sisters are being crazy. However we are unsure if she has full hearing in both ears. We go back the end of August for a more detailed hearing test to check one last time. If she has some hearing in both ears we will sit tight and reevaluate as needed and see if things work themselves out or if we need to look into hearing aids in the future. If one ear shows no hearing at this time we will be sent to CHOP to be evaluated for a cochlear implant. So far I am feeling pretty optimistic that we will not need to go down the cochlear implant route.

Thus far our little fighter is doing her thing and doing it well. We will be rocking the big head look for awhile, but I think she can pull it off.

 

Mother's Day

Sunday is Mother’s Day. I have always had this vision of sleeping in without kids screaming or attached to my chest but I know that’s not truly what I want. I like spending my weekend mornings with the girls. Its typically their best behaved time, Olivia is usually giggly, smiley and talkative. The big girls are entertaining and not fighting constantly. This mother’s day is different than the last few for a number of reasons. This Sunday we will be baptizing Olivia. Obviously it is later than most kids are baptized but we wanted to wait until we were out of RSV and flu season and she had her 6 month vaccinations. To top it off, on our typical month there is only one weekend where both Josh and I have the weekend off. That brought us to this day. I think it makes the day special because I get to celebrate my baby girl on the day that is made for mothers. It will also be my first mother’s day as a mother of 4. 3 beautiful little girls and my precious baby boy who I am unable to spend the day with.  I have some really good days/weeks where I have my grief in check, it isn’t overwhelming and I can function, smile and enjoy my time with the girls and at work. There are some weeks that is not the case and the littlest things will make me tear up or completely break down. This has been one of those weeks. Baking has always been an outlet for me and I have baked a lot over the past week.  It is an understatement to say it is overwhelming but I continue to remind myself he is always with me. There are little things I see on a daily basis that remind me of this fact. Two days ago as I was driving home I noticed the neighbors had planted gerbera daisies around their mailbox, bright yellow, and they were in full bloom. Beautiful flowers. They are my favorite flowers. They were the flowers we took to the gravesite when we buried Owen. I felt him with me when I saw those flowers. Last night I was doing dishes after my latest baking endeavor (teacher appreciation week, I baked 8 dozen mini cupcakes). There was a dirty cookie scoop sitting in the sink and as the water ran over it, it sounded exactly like fetal heart tones heard over a doppler. I couldn’t help it and I counted the rate… 110. Very similar rate to Owen’s heart rate when I was hospitalized just prior to their delivery. I actually think we have a photo of the monitor with his rate at 109. I basically lost it. Luckily the girls were busy watching Sesame Street and I could have my moment without questions. It’s been one of those weeks…. For the most part I know it’s because of Mother’s Day but I just keep thinking it’s not getting better, not getting easier like everyone has been promising me it will. I can’t even imagine what it will feel like when we celebrate Olivia’s birthday.  My girls help me, keep me busy and I know that I am truly blessed with 3 healthy children. Olivia has done so well, and even recently there are times I think her hearing may be better than we initially thought (BAER is scheduled for May 28 and we will update after we get results, probably a week later).

Mother’s Day is Sunday. I hope all mothers out there feel blessed to be surrounded by their children. For all who have lost children I feel your heartache on this day. The pain may feel overwhelming but for all of us there is a reason we were brought to this situation. Our children are healed in Jesus’ arms and we will be reunited in the future. We have hope, we have love, we have memories even if they are brief. These babies make huge impacts, not only on us but those around us as well. They were brought to us for a reason and although we may never truly know why, we don’t need to. We can see the effect they have around us. Those perfect yellow daisies… making our world a more beautiful place.

Halfway in one world, halfway in another

So Olivia is 28 weeks old today.

To me, it marks somewhat of an interesting time in her life. If you recall, the twins were born just shy of 28 weeks gestation. This means that since conception, half of her life was spent intrauterine, with her twin brother Owen, and half of her life has been extrauterine, alone "in the real world", so to speak. I doubt that this is something couples who have babies full-term reflect on when they turn 40 weeks old.

Watching her progress is nothing short of amazing. Today she rolled over belly to back for me for the first time ever. This is major developmental milestone, evidenced by the fact that when you go to Google and begin to search "Age when babies" it auto-completes the search "roll over."

Both Allison and Emma have the first child and second child personas, respectively. I wonder what personality Olivia will adapt. I do believe she's going to have to be a mediator for her older sisters, who already fight as though they're much older.

My thoughts have turned from "what would it have been like to have twins" to more "what would my son have been like?" I look at all the photos of friends' sons and wonder which of their attributes he might share. I recently found out about a family that I imagine is somewhat like ours, at least in terms of craziness. They had 3 boys and a girl, and we would have had 3 girls and a boy. They too lost a child to a sudden, aggressive brain cancer. The difference was their daughter Hannah was 18 months old, whereas Owen was just a few hours old. Another key difference is that we were in US, at a major academic medical center, encircled by friends, family and professional colleagues when we received our diagnosis and prognosis, and they were in Kenya serving at a somewhat rural hospital, though through God's grace, they made it to a hospital where one of the world's renowned pediatric neurosurgeons happened to be on a mission trip as well.

"People were bringing even infants to him that he might touch them; and when the disciples saw it, they sternly ordered them not to do it. But Jesus called for them and said, "Let the little children come to me, and do not stop them; for it is to such as these that the kingdom of God belongs. Truly I tell you, whoever does not receive the kingdom of God as a little child will never enter it."

Five month update

It has been some time since I have updated anything on here. Not that we haven’t had anything happening, I just think I have been avoiding it.  Miss Olivia turns 5 months old today. She has come so far in the past 5 months and she changes daily right in front of my eyes. She makes me smile just by being herself. I fall in love with her more every day.

She recently started physical therapy through early intervention. I have not met the therapist yet, she comes Thursday mornings while I work but Josh really likes her. Olivia's first session was not so hot. She apparently screamed and flailed through the entire thing. She still has difficulty soothing herself. The second session this past week she did better. We are to be working on rolling. She doesn’t seem excited when I try and work on anything with her. The only thing she really wants when I am home is to be attached to my chest… you would think that having to eat from a bottle during the day was the worst thing ever.

She had her 4 month vaccines at the end of February. Besides a little fever, she tolerated them very well. She weighed in at 8lbs 9oz and was 21 inches long. She’s looking really good on the preemie growth curves. All in all coming along really well.

I have been back to work for 6 weeks now. We have been managing to keep Olivia out of daycare with the help of a couple good friends who watch her for the few hours a week our schedules overlap. Every day leaving her is tough for me. I think it was hard to leave with the older girls too, but it seems more difficult with Olivia. I am constantly fighting the worry and thoughts that something will happen to one of the girls. On top of it all I despise pumping. I have a lot of respect for moms who exclusively pump… it is awful. Nursing is so much easier/less painful/less stressful.

We had photos taken last month. They turned out wonderfully. Our photographer was amazing and got some shots of the girls that I absolutely love. Here are a few of my favorites:

 

Anyone who is looking for a fantastic photographer in the Harrisburg area, Harmony runs Philter Photography and can be found on facebook or her website. I highly recommend her.

I feel so blessed every day to have a healthy, growing, spunky little girl but cannot for a day forget Owen. 5 months ago today we lost him and the wound feels just as raw today as it did then. I never realized you could miss someone so desperately after only having them in your life for a few hours. Most days I am ok, functional, you would never know my child died 5 months ago. Some days the grief gets me and hits hard. I am truly lucky I have 3 little girls or I wouldn’t get out of bed on those days. Today is one of those days… every month on the 9^th and the 15^th my heart aches like it did the day we lost him and the day we buried him. Emma does a good job keeping me grounded. She knows when I don’t feel right and manages to do something absolutely ridiculous to make me laugh. I take the girls to Owen’s grave every 3-4 weeks and we talk about him and how mama misses him and that he is with God, healed, happy and healthy and we will get to see him that way some day. I took Olivia for the first time 2 weeks ago. It was a cloudy, rainy day, similar to the day we buried him. I got pooped on by a bird while we were there… If anyone has seen the movie under the Tuscan sun, the bird poop was a “sign.” I took it as a sign that my baby was there with us and watching over us.

I miss you Owen Graham, more every day.

Homecoming

Homecoming

After arriving 13 weeks early due to unfortunate circumstances, Olivia Paige was officially discharged from the Penn State Hershey NICU on December 21^st, 2012. Her medical record now is officially Olivia Adams and no longer Babygirl B Adams. She spend 74 days there and we had no “major” setbacks throughout her stay. One of our awesome nurses had knitted Livi a “Sunday” hat which happened to match a dress we had from Emma perfectly. We decided that would be her going home outfit.

 

She was discharged on minimal oxygen support as you can see by the tank we carried with her.

She was clicked into her car seat base at 12:26pm… the exact time that she was born 74 days prior.

Allison turned 5 on the 20^th and had several times asked me if Olivia coming home could be her birthday present… along with a Brave doll. But I thought that the day after was not bad. Allison was ecstatic when she found out she was coming home. Emma was standoffish at first but came around by the next morning and was excited that her “baby livia” was finally home.

Livi’s first night was actually pretty much as we expected. She was demanding, loud and preferred to be held. No reason for the parents to sleep right?

We were restricted on how much she could nurse in the hospital because she was to have fortified breast milk so she would get more calories. When she was discharged that was less important as she was gaining weight well and was eating like a baby twice her size. She still has to have her vitamins by bottle daily but besides a little snack with her vitamins she is now completely breast fed, on demand. It took approximately 5 days to get her to that point. It took a good bit of training for her and retraining for me, but now she refuses to take a bottle from me. Knowing that this is the last baby I will have the opportunity to bond with through breast feeding it was a really big deal for me to get her nursing regularly so we both had that opportunity. I tried to find statistics about extremely low birth weight infants and the percentage that go on to nurse the majority of their feedings but the stats are not out there… study anyone? All I know is every pediatrician or neonatologist I speak to are amazed that she took to it and I stuck with it. I am really stubborn…

Things have gone very well since Olivia has been home. We are basically on house arrest because of her prematurity and respiratory issues it is advised she stay away from people/daycare/kids as much as possible during cold and flu season. She is off her oxygen currently and hasn’t had any issues at all. 8 days after discharge we weaned her completely off.

She is a pretty pleasant baby if you give her what she wants, which is to be held 24/7. She likes to cluster feed (I think it’s more wanting contact than actually needing to eat) but we have worked that into the daytime and she sleeps 3-4 hr stretches at night.  I know a lot of NICU moms have difficulty bonding with their baby and don’t have that true connection for quite a while. I am lucky in that we were able to start holding Livi only a week after she was born and I could be there basically all day every day. We have a good bond. She knows when I am in the room and just that seems to comfort her at times.

I am lying in bed typing this with her in her bassinette next to me. She smiles a lot in her sleep. That smile makes everything worth it.

Every time I look at her I see Owen. I know he continues to watch over her and her course in the NICU was easier than most because she had her own personal angel by her side.  I feel him with us sometimes. I think I will always wish things would have been different and I would have had two car seats to carry out of that NICU but I truly believe everything happens for a reason and we were incredibly lucky to have a healthy little girl come out of a tragic pregnancy.

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

Owen's memorial service

Just wanted to let everyone know, Owen's memorial service has been confirmed at 11am on Saturday, October 27th at St Peter Lutheran church in Middletown. Anyone who would like to attend is welcome.

Owen's Memorial Service

For everyone who has been following our story, we will be having a memorial service for Owen this coming Saturday, October 27th at 11 or 11:30 (Pastor is out of town and can't confirm time until Wednesday). The service will be held at St. Peter's Lutheran Church in Middletown, Spring &Union Streets, Middletown PA. Everyone is welcome to come celebrate our son's brief but memorable life. I feel like through his story he has touched many lives. I will confirm the time on Wednesday.

I plan to do a blog update on Miss Olivia soon.



"Each new life, no matter how fragile or brief, forever changes the world."