I have to be honest with you, Camden's pregnancy was long, hard and VERY painful. It all started June 14th as I was sitting at the table eating dinner chatting with Alexander. When I got up to put my bowl in the sink it was like the bottom fell out. I felt something pop and within seconds I was swimming in a sea of water. I ran to tell Ant who was picking tomatoes from the garden. I stuck my head out the door and screamed in excitement, "Ant my water broke, my water broke!" He looked at me strange and instantly there was fear in his eyes. I was totally confused because I was elated and ready to get this baby OUT! We cleaned up the kitchen and proceeded to call Mrs.Sue as she would be taking care of Alexander. She quickly came over and we left for the hospital. The whole way there Ant was sick to his stomach. He didn't know why, he just knew something wasn't right. We got to the hospital at about 8pm and Camden was born around midnight.
I will never forget the look on Anthony's face when Camden wasn't crying. We were reassured Camden was okay and he soon began to cry. His cry did sound strange but we never thought anything of it. We got the chance to hold him for about for a few min before they rushed him off to the nursery to do his assessment. Shortly after they took him away, a nurse came in with a strange look on her face telling us Camden wasn't breathing well and his blood sugar was very low. We gave the permission to try a formula bottle and she was to return shortly with our baby. Hours later we were still waiting. His breathing was getting worse and his little chest was retracting every time he breathed. I kept telling myself that it was b/c he was born early, that he would be with us shortly and everything would be okay. Well they came in that that following morning around 3am to tell us Camden was being transferred to the NICU b/c his O2 levels kept falling and his breathing just kept getting worse. We were devastated and in denial that something was really WRONG with our baby. Once again I told myself it was just b/c he was born early and that he would spend a couple days in the NICU and would be home soon. I literally couldn't stop crying from the moment they told us something was wrong till the moment I left the hospital. The nurse thought it would be better for me to leave and go home early since I was doing so well physically and she thought it would be best for me to see Alexander. When she told Dr. Feore I had been crying for literally 24 hours he immediately wrote up a discharge for me, we visited Camden in the NICU who we couldn't touch, and went home without our baby.
We switched off visiting Camden and the grandparents would come over so we could also go together. We were told they thought he had a bacterial infection and pumped NEEDLESS antibiotics through his little body for 3 days. It eventually came back negative that he didn't have an infection. That Saturday I went to visit him alone and they told us the worst news yet...Camden had stopped breathing completely for over 30 seconds 3 times that night. I remember sitting there numb, confused, and then angry. What do you mean he STOPPED breathing and had to be roused. What do you MEAN a nurse had to remind my baby to breath! What does that mean my baby had 3 apparent life-threatening events (ALTEs). I just couldn't believe the words that were coming out of her mouth. Then it happened. I was holding him and the his monitor started to freak out. Camden's nurse quickly ran over to us and placed her finger under his chin to wake him up. She said, "There did you see that!? Did you feel that!?" "Feel what?" I responded." Your baby just stopped breathing while you were holding him." Then it sunk in something wasn't right, something was REALLY WRONG! The doc came over to tell us they didn't know what was causing his apnea spells because his breathing was getting better by the day. They would monitor him for a few days and then send him home on an apnea monitor for at least 3 months. She told me horror stories of how it would keep us up all night and how much of a pain it was, but her daughter was on one for 9 months and we would get through it. I held Camden close and cried for about 30 min till I started to get physically ill. I immediately called Anthony on the way home, he dropped Alexander off at the pool with Grammy and Poppy and met me at the house. We stood in the kitchen holding each other sobbing for what felt like an eternity. It was then that we knew this nightmare wasn't going to end when we brought him home from the NICU, it wasn't going to end anytime soon.
We woke up every 3 hours at night for 7 nights to call and check on Camden and for me to pump. Every night when they told us he has had "2-3 apenea spells" we would sink that much lower. They reassured us that they thought it was probably apnea of prematurity and that was what was wrong with this breathing also. He would probably be fine and the monitor might drive us a little nuts but in 3 months it would be gone. They also sent a home health nurse out once a week to check on him.
On the 8th night we had to "room-in" with Camden to make sure we knew how to handle the monitor if it went off. We went through he training of the monitor and they FINALLY gave us our baby. They brought Camden to us who I immediately placed on my chest and snuggled. Ant left to go grab us some dinner. Ant hadn't been gone for 20 min and the apnea alarm went off. It squealed 3 times and Camden and I both jumped out of our skin. I freaked, started pushing all kinds of buttons and then called one of the NICU nurse. I began to cry and she looked at me frustrated and said, "This baby does have apnea spells you know? You will have them at home and YOU will have to know how to turn the monitor off!" I broke down, called Ant to tell him I just couldn't do this. He assured me that I wasn't only me, that we were in this together and that by the grace of God we would get through it....together.
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Well the NICU doctor was right. That apea monitor went off ALL the time! It was living nightmare. Camden would wake, we would feed him and finally get him back to sleep only for the monitor to go off 30 min after we all fell asleep for the vicious cycle to start all over again. Many early mornings after it had gone off multiple times, we would unplug him, put him on one of our chests and the other person would go back to sleep. The leads that had to be placed under his little arm pits would blister horribly. We were constantly trying to move the leads in a different spot on his chest, but it would just cause more false alarms. I could NEVER pull them off and always made Ant take them off and replace them. Ant and Admen were both troopers through the whole thing! In the end Camden did have 2 real apnea spells at home both being before his due date and was discharged at 3 months from it.
Everything started to come together when my brother, Zack, brought my beautiful niece to meet us for the first time. I remember precisely when Tiffany was holding Camden and I was holding Ryleigh that I began to notice Ryleigh didn't make the same noises Camden made. Ryleigh's little chest wasn't rising and falling as hard as Camden's was, her neck wasn't sucking in like Camden's was. I brushed it off as he was "worked up" because he was overtired and ready for his nap. After they left I swaddled him, laid him down and after he fell asleep the sound became even louder! I goggled "respiratory distress" in infants and Camden's was showing a lot of the signs. I think Ant and I were both in denial and agreed that he had always made a lot of noise while he slept. I did record the noise on my phone just to have proof if we ended up of the docs. The next day I explained the whole situation to me one of my best friends, Alli, because Camden seemed even louder than the day before. I let her listen to the to the sounds I kept hearing and she immediately told me that it wasn't normal. I broke down realizing that I should have probably taken him to the doctor in the beginning and she immediately rushed over for me to take him in.
It was too late in the afternoon for us to see our doc so we saw the nurse practitioner. She came in and didn't like the sound he was making. She noted his chest was retracting a little and his neck was sucking in. She decided something wasn't right but didn't think he was in respiratory distress because he "wasn't blue." She wanted to get his O2 stats so they tried to get a true reading and couldn't get one that she liked. She then decided to give him oxygen to see if his level rised, well they did. She then sent us over to the ER. The wonderful Chippenham ER took us immediately back and accessed Camden. They hooked him up to monitor him and his stats never dropped once. They made me feed him to monitor his O2 stats that never dropped. The nurses were totally confused why he "looked like he had respiratory distress symptoms but didn't seem to be in respiratory distress?" The ER doc shortly came in, accessed Camden, and immediately told us he thought it was tracheomalacia, there was really nothing they could do for us and to push for acid reflux meds. The nurse went and printed off info about it for us, told us to pursue an ENT, monitored him a little while longer, then sent us on our way.
The next day we were off to see our doc to push for acid reflux meds which she prescribes and told us she thought Camden has laryngomalacia. Shortly after we were in with the ENT who scoped Camden by making me hold him down, sticking a tube down his nose into the back of his throat. The ENT said he definitely has moderate laryngomalacia and he wanted to see us every 4-6 weeks. We went back at 3 months when Camden's noise seemed to be at its worst. You could literally hear him breathing in our bedroom upstairs all the way downstairs in the bathroom with BOTH doors shut. I remember the ENT coming in with eyes as big as quarters concerned at how loud Camden was. He scoped again to tell us there was no change and he was thinking of putting Camden to sleep to get a "good look." I remember instantly feeling sick to my stomach. He told us he was going to consult a specialist down at MCV and get back to us. In the mean time I contacted our doc who agreed with me that she thought it was totally unnecessary procedure at this point. I was sick for weeks until the ENT called me back and told me that MCV specialist doesn't perform these procedures unless the baby was one years old, turning blue or failing to thrive, and Camden was none of these. Praise the Lord! We decided to give Camden some time to HOPEFULLY outgrow some of his LM symptoms before we would allow the ENT to scope him again.
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| Alexander meeting Camden for the first time. |
So here we are at 7 months today. Camden is doing much better. Most people have never heard of LM. We also recently found out that LM is not something you outgrow like most websites say. Yes, most babies outgrow the symptoms, but it is a defect that is always there. We are also still healing emotionally. The pain of the NICU stay, not being able to hold my helpless baby who had needles in his head, not being able to put him on my chest skin to skin, not being able to comfort him when he cried...all the the pain is still so fresh in our hearts and minds. All the horrific days and nights of apnea alarms going off are still so fresh in our thoughts. To this day Ant and I both jump at a loud beep when we are out in public. It's just recently that we can laugh about it when it happens. I have talked to people whose babies have outgrown their LM symptoms at 9 months, 18 months and 2.5 years old. It seems as though every baby's experience is a little different and they heal in God's perfect timing for them. So here we are waiting for Camden's perfect timing.
Lastly, I wanted to share about how wonderful our Lord and Savior is. Night after night I found myself crying out asking why. Wasn't my pregnancy hard enough? Wasn't the NICU stay hard enough? Wasn't the apnea monitor hard enough? Now laryngomalacia? But oh the joy that filled my soul every time I put my trust in Him. He has give us strength that is unimaginable. He has brought me to my knees countless times and through it all has drawn me nearer to him. I never knew what is was like to be at the end of myself, to be heart broken, numb and simply done with life until Camden Thomas. Yet, through all the struggles, all the tears, all the heart ache, he has made me who I am today. When it felt like no one else was there in the NICU to comfort me He was, when Ant and I would lose it at night after we put Alexander down for bed He was there, when I would collapse into bed at night not wanting to go on I would plead with him and He was there....all along . He was there lifting me up, giving me strength and drying my tears. He gave my heart peace knowing that no matter what the circumstances He was in control. I remember a conversation I had with my older brother Jon when I wasn't sleeping at night worried Camden was going to stop breathing. "Sarah," he said. "You know our God is in control. You know he has his hand on Camden. He gives Camden EVERY breath he takes. You simply have to trust in him." I could never repay Jon of those words. Every night to this day I still crawl into bed asking the Lord to have his hand on Camden. I close my eyes at night and sleep knowing that MY GOD is in control. Praise the Lord that his grace is sufficient for me!
Camden is definitely improving and sometimes I blissfully forget he has LM. His stridor returns with a vengeance every time he goes to cut another tooth. Right now he has 5! We were also told that his stridor would become pretty severe when he got sick. Our prayer is that he will outgrow all the symptoms by 1 year. Our sweet Camden brings us joy on a daily basis. Although life has been hard these past 7 months I simply couldn't imagine life without Camden. He is such a gift, a blessing, a MIRACLE.
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| Camden Thomas 7 months old |
Here is website explaining Camden's condition:
http://emedicine.medscape.com/article/1002527-overview
