Prayers for Camden
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As most of you know, Camden had his home coming on February 14, 2017; the absolute best Valentine's Day present a mommy could ask for. We were beyond excited and blessed to finally bring him home after 110 days in the NICU. We were so happy to come home and finally be a family of 4 all together. We have been home 3 weeks and everyone has adjusted well (for the most part:). Big sissy Callie loves him to pieces and often says "I love my brother or that's my brother." She has done very well with him and has been a big "helper."
Camden has adjusted well to being home too. Part of us was terrified to come home because all we knew was staying and visiting our baby in the NICU and relying on monitors, tests, nurses, doctors, etc. We bought a monitor that monitors his oxygen and heart rate and it has gave us a lot of peace of mind; especially that first week. When Camden came home, it was still a challenge to feed him, but over the last few weeks he has really picked up on that and is doing well and taking more volume of formula; so proud of him. Since we have been home we have had several doctor's appointments. He goes to the pediatrician weekly; mainly for weight checks (as of today he weighs 9lbs 6oz). He has also seen the urologist. Last week he had an MRI and follow up with neurologist. MRI showed that his ventricles in his brain had decreased since his MRI in January; praise the Lord for that. We will have another follow up appointment in 3 months and another MRI in 6 months. Today he had a follow up appointment with the dermatologist; he has a Hemangioma on his head (basically just a small bright red blood spot) and there were no concerns with his; we will continue to put drops on it daily, but hopefully will not need any further treatment. Tomorrow we will have follow up at Special Infant Care Clinic at Duke; this appointment is basically seeing the neonatologist, therapist, etc. that we followed in the NICU. We have also had a home visit from the CDSA (Child Developmental Services) and will be followed by them. So we have stayed pretty busy with appointments, but all in all he is doing well!
Most of you know, but some have asked; we are unfortunately still not having visitors due to RSV/FLU season. As soon as we are, trust me, I will let you know because this mama is about to go crazy in this house! ;) As far we have had "window visits" by the grandparents, aunts, uncles, and cousins and have enjoyed all of them. I can't wait to tell Camden one day that his visitors for two months were looking through a glass door (haha).
This will probably be the final update on this page, but you can continue to follow updates/pictures of Camden on my personal facebook page if you wish.
I want to say one more THANK YOU from the bottom of my heart for all the continued prayers during this journey. Thanks to all that continue to call, text, send messages, cards, and simply ask how he is doing; he means the world to us that we have so many that care. I ask and pray that we continue to have all the prayer warriors as this journey will continue as we have reached another chapter. I still thank God everyday for this journey, although it has been the most difficult time in my life, but at the same time the most rewarding and I have learned so much thus far. Love each and every one of you and hope you continue to keep up with our sweet Camden.
So as some of you know, we were suppose to go home Monday (a week ago), but last Sunday, Camden had a rough start to the week. Last Sunday morning they did his car seat test (90 minute test he has to pass before going home) and he failed that and the rest of the day he was having desats/drop in oxygen and just not being himself. They did some blood work and a urine analysis. The blood work came back fine, but a few days later we found out that the UA came back and he had a UTI. Monday they started him on a 7 day antibiotic for the UTI. This morning was his last dose of the antibiotic. When he was sick, they did have to put the ngtube back in because he was not taking his bottles as well. Wednesday they did a shunt series to make sure it was nothing related to his shunt; he got a head xray, head ultrasound, and abdomen ultrasound; thankfully all of those results were fine. The head ultrasound showed a slight decrease in his ventricles which is a good thing (meaning the shunt is working). The last several days he has not needed his njtube and we are hoping to go home without it. He is doing well with bottles now, but still having some issues with vomiting and reflux. Yesterday, the dr decided to start a reflux medicine, praying that helps. They also lowered his calories because they don't think he was tolerating the 27cal well, so it's back down to 24cal (so far no vomiting today). He now weighs 7lb 15oz!!!! With all of that being said, it has been a pretty long week, but we are happy to see him feeling better and to start a new week (hoping it consist of home sweet home). Tonight they will repeat the car seat test and tomorrow Brian and I are rooming in (meaning we stay in a separate room at the hospital with Camden and do all of his care; he is still hooked up to all of his monitors so the nurses will still be monitoring him).
Specific prayer request: pray that he passes his car seat test tonight without having any desats, pray his respiratory status continues to improve, pray he continues to gain weight and can tolerate his feedings better now with the reflux medicine, pray that the vomiting will decrease, pray his shunt will continue to work and decrease his ventricles in his brain, and pray that we are home sweet home soon. Continue to pray for Callie, as we all prepare for Camden to come home and it will be a big adjustment for her. Continue to also pray for Brian and I; pray we have continued strength and hope.
108 days later, we are still in the NICU. As we got our hopes up on Monday for coming home, it was just a sign from God telling us Camden wasn't quite ready and we were okay with that. We have started preparing again for his home coming, but aren't getting our hopes up this time. I can't begin to explain the feelings that I have when I think of him coming home. Believe it or not, we will miss our "Duke Family" and Camden's "roommates" but we are so ready to have our baby boy home. This week I looked back at pictures when he was 3-4 days old and couldn't help but cry, but also couldn't help to think how in the world did I make it to this point? I have to give ALL of the credit to God; he has given us unbelievable strength that I didn't know existed and I thank him daily for this journey.
If you're reading this, thanks for keeping up with Camden's journey and for all of the prayers.
FYI: unfortunately we will not allow visitors when he gets home especially since it's still flu season. If preemies get RSV or the flu it can be devastating and it has been recommended to not have visitors for a little while. As this will be extremely hard because I want so badly for everyone to meet him and snuggle him but we have to do what is best for Camden. I hope everyone understands.
Specific prayer request: pray his breathing and O2 remains stable, pray he continues to do well without the ngtube and he continues to do well with bottles, pray his head circumference stays stable and the shunt continues to work, pray for overall healing and he will continue to grow big and strong.
Pray as we are in our last final days at Duke (hopefully) that Brian and I will have strength and peace of mind when he comes home. Pray Callie will adjust well too.
I have tears of joy writing this because I can see the end in sight. As it is very overwhelming still, I'm so ready for Camden to be home with mommy, daddy, and big sissy. God has shown us so much through this journey and gave us strength that I never knew was possible. We are so blessed and thanks for the continued prayers.
Specific prayer request: continue to pray for his Hydrocephalus and his shunt, pray that it will continue to work; pray that he will get stronger and will be able to take all bottles very soon so he can come home and continue to pray for overall healing.
We praise the Lord for our continued strength to get through this and also for all the good news that was brought to us this week. Camden amazes me more and more each day and he will always be my hero!
Discharge status: several of you have asked about this again so just wanted to update you on when we might be coming home. As you know, Camden has an ngtube for his feedings that he can't take by bottle. The doctor's have said we could go home with the ngtube if we wanted to and would probably be able to go home sooner or if we aren't comfortable we can stay until he is on all bottles. Pray that Brian and I make the right decision. Either way it will still be a few weeks before we come home. We can not wait until he is home, but I am very anxious and nervous so please pray for me as we make this transition hopefully sooner rather than later.
As always, thanks for the outpouring of love and support!
I am so pleased that Camden is doing so well! I know that you and Brian are anxious to get him home but remember that the doctors have his best interest at heart. Can't wait to hear the news that he is home. It will happen!! Love to you, Brian and Callie.
I'm crying reading this! So happy and thankful for his health and that you will finally be going home soon as a family of 4! Continuing to pray for you all and can't wait to meet him one day!
You and Brian and Camden and Callie are in my prayers every single day. And Camden has been added to my parish's prayer list. I truly pray for complete healing and for each of you to feel Gods love surrounding you. I am beyond humbled by your courage and faith.
Oh my, Christa. I'm sitting here at my computer in tears praying over your family. My seven year old twins are NICU graduates. So, I'm fully aware of the trauma of having your baby there. I'm praying for peace that passes all understanding. I'm praying for strength for you and your husband. I'm praying for miraculous healing for your child. I know in our NICU journey, there were times that I was so gripped by the situation, that I couldn't even seem to function completely or even know how to pray. In those moments- know that I and so many others are interceding on your behalf. Take it one hour at a time. Remember to eat. And, this may sound crazy, but it was very comforting to me to sit next to the incubators and read them stories and sing to them. It's so hard when you can't touch or hold your baby. So, finding ways to feel connected to them was important to me. When the nurses and doctors are providing all their care, it's easy to feel like an outsider. I decorated their incubators, I talked to them a lot, took pictures, anything to make me feel like I was mothering them. The nurses were so sweet and understanding. I'm still friends with a couple of them all these years later.
Thoughts and prayers. My 12 year old daughter was born at 28 weeks weighing 1lb 8 oz. Continue to have faith.
I will continue to pray for sweet baby Camden and your family....God is the great healer and will comfort you all