I want to share with you the story of a little boy named Colin who is in the Presbyterian NICU unit right now. In August my friends Bobby & Ania (pronounced AN-YA) shared with me the wonderful news that they were finally expecting after trying to get pregnant for a long time. These are the friends (everyone has a set) that everyone knows will make the BEST parents. Sweet, wonderful and patient. They had many scares throughout the first half of her pregnancy including sudden bleeding which began at 20 weeks and resulted in hospitalization and subsequent bedrest. When Ania was 26 weeks along she passed a large hematoma (blood clot) and began bleeding again. In the hospital they found out that the baby had an absent-end diastolic blood flow and intrauterine growth restriction (IGR) as well as frequent decelerations of the heart. It was moment-to-moment, and the initial prognosis was that their baby simply wasn’t going to survive. They waited for a sign of what they should do and none came until his heart rate began to decelerate even more frequently and the doctors made the call that it was time to deliver – or else he had no chance at all. Colin Robert Hamp was born November 16, 2007 at 27 weeks and weighed just 1 lb, 6 ounces.
I visited the hospital 4 days later and was honored that I got to see him in person. I was not sure what to expect, I mean, think about when you were 27 weeks pregnant, delivery was months away and you might not have even been showing that much. But when I saw him, he was beautiful. Even though he was so little and had all sorts of cords hooked up to him he was pink and all his perfect little fingers and toes were so cute and well defined. Colin is now almost 2 months old, although he really still should not have been born yet. He is 2 1/2 lbs and while there have been some big ups and downs, he is doing relatively well.
I asked Ania if I could share her story at some point, it’s a lot to ask of anyone while they are going through something like this. She was enthusiastic and wanted to do it now because she hopes her story can help someone else, as they have gotten so much support. As you might see, it’s a bit longer than our normal post, but is so worth the time to read.
First and most importantly, how is Colin?
Today he is doing terrific!! Particularly given the grim possibilities that were facing us around his birth he is truly our miracle baby. He is tolerating his breast milk feedings fine. Something that the doctor’s worried about due to his intestines not getting all the blood and oxygen they needed to develop in utero. In fact they have also recently been able to add some oil and multivitamins to his feedings and despite previous problems with intolerance to any additives, he seems to be handling that very well. Additionally he is gaining weight now at a semi steady level and is currently just over 2 ½ lbs. This is something we have recently been very concerned about because we knew that to develop properly he would need to increase his caloric intake and weight.
Today he is doing terrific!! Particularly given the grim possibilities that were facing us around his birth he is truly our miracle baby. He is tolerating his breast milk feedings fine. Something that the doctor’s worried about due to his intestines not getting all the blood and oxygen they needed to develop in utero. In fact they have also recently been able to add some oil and multivitamins to his feedings and despite previous problems with intolerance to any additives, he seems to be handling that very well. Additionally he is gaining weight now at a semi steady level and is currently just over 2 ½ lbs. This is something we have recently been very concerned about because we knew that to develop properly he would need to increase his caloric intake and weight.
When do they think he will be able to go home?
Initially (when he was born at 27 wks, slightly over 3 months early) they told us a good target date to shoot for was his due date which is 2/14/08, Valentine’s Day. However, he has to meet certain milestones before he will be released from the hospital. He has to first and foremost gain weight because that is key in him being able to maintain his body temperature. Currently he is still in the Isolette which regulates the temperature for him as he doesn’t yet have enough brown fat to do that himself. Additionally he has to take all of his feedings by bottle or breast. Although we have made great strides in that regard, he still gets tired and he bradys (heart rate drops) during his feedings, which means that he is still very much relying on his NG feedings (feeding tube which goes from his nose to his stomach) for at least half of his meals currently. The last thing we will need to tackle is his heart rate. He can not have a brady or sudden drop in his heart rate for a week prior to going home. He used to have multiple occurrences an hour, now it’s just down to a few times a day. We’re anxiously awaiting the day when he has none, then hopefully those days will add up to a week and we will be able to take our precious baby home with us.
Initially (when he was born at 27 wks, slightly over 3 months early) they told us a good target date to shoot for was his due date which is 2/14/08, Valentine’s Day. However, he has to meet certain milestones before he will be released from the hospital. He has to first and foremost gain weight because that is key in him being able to maintain his body temperature. Currently he is still in the Isolette which regulates the temperature for him as he doesn’t yet have enough brown fat to do that himself. Additionally he has to take all of his feedings by bottle or breast. Although we have made great strides in that regard, he still gets tired and he bradys (heart rate drops) during his feedings, which means that he is still very much relying on his NG feedings (feeding tube which goes from his nose to his stomach) for at least half of his meals currently. The last thing we will need to tackle is his heart rate. He can not have a brady or sudden drop in his heart rate for a week prior to going home. He used to have multiple occurrences an hour, now it’s just down to a few times a day. We’re anxiously awaiting the day when he has none, then hopefully those days will add up to a week and we will be able to take our precious baby home with us.
How have you liked the Presby NICU and all the nurses?
We have been very fortunate to have great primaries (nurses which sign up to be with a particular baby every time they are on their shift). Over the past 9 weeks we have really gotten to know them and vice-versa and we feel so comfortable when he is in their care. They all have different personalities but the similarity is that they all love and take great care of him. We have also been very fortunate in that all of the neonatologists are wonderful. On numerous occasions they have called us at home to update us with the latest on Colin and have spent a great deal of time with us bedside explaining different tests or procedures.
You are so lucky to be in a big city with such good care, how did you choose Presbyterian?
Well that’s a great question. I tend to be slightly (ok, a lot) more paranoid and conservative than my husband on many issues. So after years of trying to get pregnant when we found out we were finally expecting and had to go about choosing an OB/GYN, I was determined to pick one that was affiliated with a level 4 NICU. That meant CMC Downtown or Presby Main. I had visited both when friends of mine had babies and thought they would both be just fine. However the group that I was referred to only had privileges at Presby so that is how we decided upon that. Since we live in the University area my husband did question why we didn’t just use that hospital. He didn’t really give me a hard time at all, it’s just his thinking was that all would go smoothly with our pregnancy and we would be fine to go there. I felt that IF anything did happen to go wrong then years down the road I would likely still be kicking myself for not going to a hospital with the highest level of NICU. However, I knew that years down the road I wouldn’t be kicking myself for having driven 20 extra minutes for my appointments and birth. It turned out such a blessing that we delivered at Presby. It saved Colin from having to be transported there after his birth. We’ve been told that in those first few hours time is so critical and transporting a baby although often necessary can result in some delays of treatment and testing. We also want to mention that currently at Presby Main they are using bubble c-pap to help these babies breathe. It is such a blessing in that it allows many of the babies that previously would have been placed on ventilators to be put on this instead. In our case it saved us from having Colin ever be put on a ventilator and because of that his risk of ROP (retinopathy of prematurity) is dramatically decreased. ROP is an eye condition that in it’s worst stages can cause blindness. With all of this in mind as well as the fact that there is a neonatologist on staff at Presby Main 24/7 we feel comfortable with his care at night when we have to go home and leave him there. I certainly understand that most pregnancies are without incident and any of Charlotte’s fine hospitals will do a wonderful job and I don’t want to imply otherwise or panic anyone that is delivering elsewhere. For us though it was the perfect decision and the one part of this pregnancy that we will never have to second guess.
Well that’s a great question. I tend to be slightly (ok, a lot) more paranoid and conservative than my husband on many issues. So after years of trying to get pregnant when we found out we were finally expecting and had to go about choosing an OB/GYN, I was determined to pick one that was affiliated with a level 4 NICU. That meant CMC Downtown or Presby Main. I had visited both when friends of mine had babies and thought they would both be just fine. However the group that I was referred to only had privileges at Presby so that is how we decided upon that. Since we live in the University area my husband did question why we didn’t just use that hospital. He didn’t really give me a hard time at all, it’s just his thinking was that all would go smoothly with our pregnancy and we would be fine to go there. I felt that IF anything did happen to go wrong then years down the road I would likely still be kicking myself for not going to a hospital with the highest level of NICU. However, I knew that years down the road I wouldn’t be kicking myself for having driven 20 extra minutes for my appointments and birth. It turned out such a blessing that we delivered at Presby. It saved Colin from having to be transported there after his birth. We’ve been told that in those first few hours time is so critical and transporting a baby although often necessary can result in some delays of treatment and testing. We also want to mention that currently at Presby Main they are using bubble c-pap to help these babies breathe. It is such a blessing in that it allows many of the babies that previously would have been placed on ventilators to be put on this instead. In our case it saved us from having Colin ever be put on a ventilator and because of that his risk of ROP (retinopathy of prematurity) is dramatically decreased. ROP is an eye condition that in it’s worst stages can cause blindness. With all of this in mind as well as the fact that there is a neonatologist on staff at Presby Main 24/7 we feel comfortable with his care at night when we have to go home and leave him there. I certainly understand that most pregnancies are without incident and any of Charlotte’s fine hospitals will do a wonderful job and I don’t want to imply otherwise or panic anyone that is delivering elsewhere. For us though it was the perfect decision and the one part of this pregnancy that we will never have to second guess.
You and Bobby have a blog you use to keep your friends and family up to date on Colin’s progress, have you found that to be helpful?
Yes, extremely! (www.colinhamp.blogspot.com). I can’t thank you, Jennifer, enough for starting it for us. Initially it was meant to serve the purpose of updating everyone on Colin’s condition because we started to find it overwhelming to answer phone calls, emails, text messages. We ultimately didn’t remember who we told what to. Additionally, I have to say that I was highly emotional in those first few weeks and Bobby was really the one to take this on so that I wouldn’t have to concentrate on anything other than Colin and my healing (which to me was secondary and very minimal compared to what physically I had been through in the weeks prior to his birth). Ultimately, it evolved into this wonderful way for us to not only connect to our son but to all of our friends and family. Many of whom have left beautiful comments on it that have given us so much comfort and hope. It’s something we do daily now because we know our loved ones are checking out the site daily and get concerned if a new entry is not up. This occurred unfortunately when our internet was down recently and we had to wait to post the results of his recent head ultrasound. All turned out well but we felt horrible that our friends had to wait in suspense. We plan on printing out the blog and giving Colin a copy when the time is right. We think that when he has his first child it may be fitting and hopefully he will find it as touching as we do.
A big milestone for you was when you were finally able to breastfeed Colin, what was that like?
Unbelievable, there’s not even any words to describe that moment. Since he was so tiny we didn’t know if he would be able to latch on, but he did. He’s only been able to do it twice since recently I have gotten sick and we do not want to expose him to anything that could cause him to get sick. I absolutely can’t wait to try to breastfeed again. Being a first time mom I didn’t know what that would be like, but it’s the sweetest and most loving thing in the world.
What advice can you give to people who have friends in a similar situation? Most people are not sure how to help.
That’s a little tricky because not everyone is going to deal with having a preemie in the same way. Initially, prior to Colin being born, when all we had was very bleak news we didn’t want to talk to anyone. We virtually felt hopeless and spent the better part of my hospital stay crying and praying and just trying to grasp how all of this could have happened. Most days it took all of our energy just to not continuously break down. After he was born, however, we found it very helpful to surround ourselves with our friends and family. We loved the emails, messages and phone calls. What I found most helpful were people who would call but not request you call them back right away. It was wonderful to know they called and made you feel less guilty about not having time to return the call. We also were lucky in that my mom and sister made meals for us that they brought over, when you are going through this you don’t have much time to prepare meals so that is one of the most helpful things you can do for a friend. We also had dear friends and church members who would drop off beautifully prepared meals for us. They understood I was breastfeeding and needed good, healthy nutritious meals and that is what they did. I’m still very thankful for that. We were also very fortunate to get very frequent gifts for Colin on our doorstep. They all touched us so much. One gift that I would recommend that is rather simple is that of “thank you notes”. I had a couple people send blank ones to me so that I could just have them handy to write on and not have to run to the store to pick up. Those kind of ideas and gifts that cut down on your time away from the hospital are wonderful.
When I was visiting you in the NICU I could not believe how many babies were there. Are most of them preemies like Colin?
Not necessarily. I believe that Presby Main has the capacity for 45 babies at any given time, and it seems like they were close to capacity in November when Colin was born. Walking to your child’s isolette you can’t help but see other babies as they are in open pods. This is great because if your nurse is attending to one of the other babies she/he is assigned to and anything happens they as well as other nurses would be able to watch the monitors and respond quickly. Of course the nurses aren’t allowed to discuss other babies due to HIPPA rules but you do meet other families there that talk to you about their child and you bond over your stories and commonalities. Many babies are born premature, although I would say a large majority don’t stay nearly as long as Colin is meant to be there. Some just a few days or weeks. There’s a posting near the handwashing station of recent “graduates” with their days spent in the neonatal intensive care unit (NICU) and I would say that a majority of them appeared to be less than 1 month last time I looked. Some of the bigger babies that just appear perfectly healthy to me have other medical issues which require surgery. There are some parents that know prior to birth that their child has some condition that will need to be remedied once they are born, like a heart defect, so they are somewhat prepared not to take their babies home, although I don’t know how well prepared any mother really is to go home without their baby.
You are like me, very emotional… and your husband is one the nicest guys I know. Has be been your “rock”?
Without a doubt he has been my rock, my confidant, my best friend, my cheerleader, you name it. I have always felt that a person’s true character often comes out under the most dire and trying of times and your reaction to or despite them. Although we all wouldn’t want to be judged by a single incident, the journey is, I believe, often very indicative of someone’s character and soul. I really could not have been blessed with a more incredible husband. He was there every step of the way holding my hand, comforting me, telling me that we would face this together and tackle whatever lay ahead. When I had lost hope he gave me his. When I didn’t think I could physically make it, he wheeled me out in the courtyard and showed me the stars we would wish on. When I was laying in the hospital drugged up on magnesium sulfate, steroids and IV fluid developing pulmonary edema he was my patient advocate. When I needed it he would lay down next to me in the hospital bed and hold me. When I had my c-section and we were told the baby could very well come out limp and blue he held my hand and when I started to sob during the procedure he had me keep looking at him so that I could make it through. These moments and a million more like them kept me going and got me through thus far – for which I will be forever grateful to him for. What’s truly unbelievable is that in the rare moments when he was on the verge of a meltdown I felt at peace and was hopefully able to comfort him. I think God somehow allowed only one of us to breakdown at any given time. That was a blessing because had we both had the luxury of breaking down who would have pulled the other one up???
What have you learned from this experience?
Wow, that is a wonderful question. I guess I would describe myself like many highly motivated, professional women who think that they can tackle and handle all aspects of their lives………health, love, success, family and friends. However what occurred to us is something you can never be prepared or organized for. For no one ever really thinks it can happen to them, and no one is prepared when it does. In retrospect one of the most useful descriptions of our lives in the past 9 weeks has been that of a roller coaster ride. You can be incredibly high one minute and within a short time span the doctor’s or nurses could be telling you some news which is difficult to hear. Our little one to date has had 5 blood transfusions and 2 platelet transfusions, 2 septic episodes (bacterial infections that are quite serious and require IV antibiotics), a lumbar puncture to check for bacterial meningitis as well as lots of scans and ultrasounds. Every time, we held our breaths awaiting the results and prayed for a good outcome and thankfully we typically got it. We realize that we have a very long road ahead. Before I had Colin I would stress over so many things and try to control different situations, now I know there is so little about life that we are truly able to control. Although we will do whatever is in our power to help Colin, including speech and physical therapy, we have to accept the fact that he may be developmentally delayed or have motor problems such as cerebral palsy. That we won’t know until later down the road. But I don’t want the “what if’s” to always nag at us and cause us to miss all the beautiful things that life with Colin has to offer us. I don’t want to be perpetually worried that he may have some developmental problem and be disappointed when he doesn’t reach some milestone. If he walks at 2 years old, then so be it. That just means that I will get to be lucky enough to carry him around in my arms for a while longer. If he doesn’t talk for a while, then that’s ok, I’ll just do all the talking for him. In the end I’ve gotten to be more at peace with what has occurred, and what may lay ahead. I’ve also realized that as cliché as it may sound ultimately the most important thing we have in life is our family and friends and how we all treat each other. Although this has occurred, we still feel like we are some of the luckiest people on earth and we have been blessed with such wonderful family and friends who on a daily basis renew and rejuvenate our spirit. At times when we are low they boost us up and when we cry they cry with us and when we celebrate they call us and leave messages that rejoice in his milestones. Life is about being joyous in what you have that day and not what may come tomorrow. I don’t think I nearly appreciated that as much prior to this occuring. Living for tomorrow is just not possible with what we are going thru and that is a blessing because today is much more sweeter then any big plans you have for the future.
Ania, thank you SO much for sharing your incredible story, you are an inspiration (I need to wipe these tears away). I imagine you are going to have a whole new group of people rooting for Colin. We hope to check in with you in the coming months to see how Colin is progressing. In the meantime, readers can read Colin’s blog by clicking here.
Readers, did you go through something similar or do you want to leave a note for Ania? You can do so by commenting below. To contact Ania directly you can e-mail us and we’ll pass it along.
6 comments
Amazing and very thought-provoking story! Wishing you good health for your son and that he can come home Valentine’s day!
So glad to hear that Colin is doing well and progressing to be a “feeder/grower”, wishing him speedy weight gain and to be home soon. Wanted to point out that CMC main (Levine Children’s Hopsital NICN) is the only true level 4 NICN in this region, to be a level 4 the center must be able to provide cardiac surgeries for heart defects and have an ECMO program (a heart lung bypass machine) which CMC is able to provide in the NICN, the pediatric ICU and the pediatric cardiac ICU, Presby’s advertising is misleading as it is claims that it is a level 4 unit when it does not provide these services. CMC also does bubble CPAP and is staffed by both Neonatologists and Neonatal Nurse Practitioners 24/7.It was also good that you pointed out that if you think that you are going to need a NICN it is suggested that you deliver in a facility with that level of care rather than having to have the baby transfered in. Not only does the transfer delay whatever interventions may be needed, but it also seperates the baby from the mother and there is nothing more frightening for a parent than to have a sick child and not be able to be with that child. If you find yourself in that situation you can always ask (rather demand) that your OB have you transfered to that facility if you are not at a point that you can be discharged, on multiple occasions we have had mothers transferred to our hospital with their care being assumed by the staff OBs so that they are in the same hospital as their child
This is Jen B… to the great comment above with all the detail, I would love to chat with you, yoou are obviously very informed in this subject… can you e-mail me at charlottesmartypants@gmail.com? Thanks!!
I was so excited to find this article on Charlotte Smarty Pants today. I am actually very familiar with Colin’s story because my son Chase was his neighbor at Presby for several weeks. I had the pleasure of meeting Ania at the scrub-in sink a few weeks before Chase was discharged. I can testify to how precious Colin is. Ania and I have actually been corresponding over email since Chase was discharged in December.We know EXACTLY what Ania and Bobby are experiencing. Our son Chase was born at 26 ½ weeks weighing only 2 pounds. We know what the roller coaster ride is like. We were on it for 82 days. Chase came home on December 22 and now weighs a little over 7 pounds and is doing great! I have two reasons for posting. One is to support Ania and the other is to encourage all mothers and mothers-to-be reading this to be grateful. Ania was asked what she had learned through Colin’s journey. I have learned so much as well. One of those things is that there is a reason God made pregnancy to last 40 weeks. Pregnancy in the last few weeks comes with exhaustion, pain, and other inconveniences. I would have given anything to be tired and uncomfortable at 40 weeks given the alternative. Be thankful for every day that your baby has in the womb. It cannot be recreated. In those last few weeks of pregnancy, when you’re ready for the baby to just “pop out,” rejoice that your baby is healthy and growing where it should be. Every baby is truly a miracle. Elizabeth
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You’re indeed right with this one.