Recently I was detailing to some friends the current state of my hair and the controversies between Jim and I in regards to “washin’ my grey away”. I am for it – he is against it. Ty Joran has received the blame for the population explosion of the white hairs. My friend Ryan pointed out to me that I am not likely to grey in the classy fashion that my mother has. While Ryan’s wife was a bit horrified by that comment (LOL), I had to concede the point. Ryan is oh so correct. My mother has hair like a soap queen. It is perfect and the mix of salt and pepper give her quite the “class act” appearance. This is not a problem that will be solved for me tonight, but I do want to share a few trials of the last couple of weeks that I KNOW have added to my unsightly collection of grey! There seem to be 5 contributing factors (okay fine…six if you count age but I would rather blame this nuisance on something better than THAT). Issue Number 1: Apnea Events Issue Number 2. Choking events Issue Number 3: Unexplained Behavior Issue Number 4: Breath Holding Events Issue Number 5. MY sleep apnea.

Apnea Events

While Ty never wakes during the night gasping for air, he still does this fairly often in his swing. It is almost always in the evening that it happens. He jolts awake gasping for air and scares me every time. I still have no idea if it is reflux or more of a central type apnea though I suspect reflux because it seems to get worse when I try to wean Ty off Reglan. This has continued to be worrisome and frustrating to me. Several times over the last couple weeks I have had to get him out of the swing and help him catch his breath he is choking so severely (on nothing). The swing must serve as a trigger but I don’t know why. It doesn’t look like his head is forward but maybe it is more than I think. I could just lay him in bed but I HATE Ty sleeping in a room I am not in. For this reason, I let him fall asleep in the room I am in and then carry him in to bed when I go. I may have to abandon the swing and use the playpen (but sadly, he loves the swing).

Choking Events

As Ty still has some level of oral motor immaturity, he is VERY likely to choke on even the smallest of particles. His choking has become so common that I rarely give him any solid food short of shruit poppets (Tanner’s word for Fruit Puffs). He has not been eating baby food real well either – not because he can’t – because he won’t. If I give him tiny bites of solid food he either (a) doesn’t want it (b) chokes or (c) thrusts it out with his tongue than puts it back in his mouth than thrusts it out over and over. I can’t tell if this is a lack of control that is a OMI issue or if he simply doesn’t want it.

Anyhow, a couple of weeks ago we went to Jim’s Aunt’s house for the afternoon. Aunt Barb was feeding Ty some cantaloupe. He bit off a piece that was bigger than he could handle and he started choking. The good news is, Aunt Barb and her best friend Barb (also present) are both nurses. They did not panic and later told me that they could tell he was getting at least some air past the particle. Ultimately, the cantaloupe was dislodged and Ty was fine but it was one of those scarier episodes that lasted longer than you would think/hope. Let’s put it this way, I had enough time to start crying and leave the room because I couldn’t watch them trying to help him. Been there done that tooooooo many times and these situations cause such a real sense of post traumatic stress for me. In moments of crisis, I flashback to all our “near death” episodes and I feel like at any moment I will break into hysterics. I feel so DONE with crisis and trauma. This event gave me nightmares (I’ll talk about that in a minute). It didn’t help that Jim chose that afternoon to tell me that Ty had choked and turned blue earlier in the week while I was gone. He had (for unknown reasons) not disclosed that info earlier. Still guessing as to why he didn’t share that.

Unexplained Behavior

One day last week I felt like something was “off” from the moment Ty woke up. He just looked….wrong. His eyes were not tracking the way they should have been. It was subtle enough that most people would not have noticed. As the day progressed, other things seemed wrong as well. I noticed his eyes would start to cross if he was looking across a distance at me. If he was sitting and playing with a small toy he seemed fine. If he played with a bit larger toy he would loose his equilibrium. I kept noticing throughout the day that he seemed to struggle with his balance. By 5:00 that night he was crying and crying. Not typical behavior for Ty. He cried off and on for about 3 hours and neither Jim nor I could figure what was wrong. I gave him some baby Tylenol and by the next morning he seemed back to his normal self. I had nightmares again. It probably didn’t help that I have been told by more than one person that seizures for children with Ty’s history (bleeds and micro prematurity), often (by my observation) start around the 14 month mark. This has made me a bit paranoid as Ty is now 15 months. Thank you Lord we are still seizure free though.

Breath Holding Events

On Sunday night I was talking on the phone with Brooke. Our sofa was made out into a bed and Ty was holding on the metal frame walking along the bed. He fell and crashed down on the frame. You know that piece of gum that attaches to your top lip and gum line? Ty ripped that. He started a scream but no sound came out. He couldn’t breathe. Most people would classify this as “breath holding” but that insinuates that it is purposeful. It isn’t. It is a neurological thing and he can’t take in a breath when he gets really upset. I know full termers sometimes have this problem but I am wondering if preemies are much more susceptible to this? From conversations with others, it seems that way to me. Anyhow, Ty is notorious for this when he is mad or hurt and I have learned to blow in his face and than he catches his breath. My brother pointed out the irony in that because typically kids hold their breath if you blow in their face. For reasons I can’t explain, blowing in the face usually reverses the breath holding trend. Notice I said usually. This time it didn’t work. I tried it probably 7 or 8 times and still no go. Initially, it was everyday stuff but as the time dragged on I was getting scared. I didn’t know what to try next. I have been told that typically, if this goes on too long the child will roll their eyes back, pass out, sometimes have a mild seizure and than catch their breath. Doesn’t that sound neat? While parents of breath holders may get used to this, a child going unconscious for lack of oxygen is NOT a good thing…especially not combined with a seizure.

Sometime during this episode I threw the phone down. Brooke was on the other line listening to me say “TY BREATHE!” over and over. Pretty miserable for her as well to have to listen to it without being able to “do” anything. She felt very helpless. Ultimately, I ran Ty into the bedroom and put him on the bed. By this time his lips were blue. I started yelling for Jim to help me. By the time Jim got to me, Ty’s whole face was blue and I was in full panic mode. At that moment, Ty finally caught his breath. I don’t know how long it takes for a child to go unconscious but based on his color I would say we were seconds away from it. Brooke heard his cry and stopped her counting. She told me she had counted to approximately one minute from the time she heard me telling him to breathe to the point that she heard him cry. One minute doesn’t seem like much unless you are waiting for child to breathe and then you would believe a whole eternity had passed.

Anne Marie – If you happen to see this before I call you, know that I need to have another conversation about this!

Later I discussed this episode with “the Barb’s”. Both told me that I should have started giving him oxygen at about the 30 second mark. They advised that I do whatever I could do prevent an unconscious/seizure episode. My plan of action for the next occurrence is (a) blow in the face and try to comfort (b) pain stimulation – the “Barb’s” told me to take my knuckles and rub them across his sternum to cause just enough pain to reverse the cycle of breath holding. Again, that seemed an ironic course of action since pain caused the event in the first place but I conceded the point as blowing in the face also would seem to be counter productive yet it isn’t. (c) I could try ice on the face or put him under a faucet to startle him (if I had time). (e) If I get to the 30 second or 40 second mark and none of these things work, than I will lay him down, plug his nose, and start giving him gentle mouth to mouth without compressions (unless his heart had stopped which is unlikely in this case).

I am scared to death for this to happen again yet I know that I have to be prepared because I have a feeling that it will take a long time for him to outgrow this behavior and I need to be prepared. It is also going to be hard for me to leave Ty with anyone in my absence because I will have to be sure they know what to do. I left Ty for a couple of hours today with my aunt (went to Dr. with Jim…he REALLY needs allergy testing) and I was giving her instructions while going out the door. Felt a bit surreal to be explaining how to get my child to breathe should this crisis occur. Interesting life we have:)….

Part of me feel like my little one has mamma over a barrel. There is such a temptation to keep him safe and pacified at all times so that these situations never occur again. I am the mother of boy’s though and I know that is a futile notion to even consider. Grandma was brainstorming with me and wondered if I could relocate furniture items for awhile (like the coffee table). I had to laugh because it would be impossible to remove all items of temptation from our house. Unless we emptied the house of EVERYTHING, this munchkin would still find mischief and plenty of it.

I realize that for mother’s of full termers that are breath holders, this may not seem as “scary” as it sounds because you are accustomed to it. For a preemie mother though the issue is multi dimensional. It isn’t just a matter of crisis in the moment, it is a trigger for severe post traumatic stress for all the “blue” spells of the past. For a preemie child with brain hemorrhages, seizures are one of your worst fears and the last thing that you want to do is trigger them. I make this defense because I have heard a lot of “it’s okay – they’ll breath eventually after they pass out”. While that may be true, it also may not. Ty’s little brain has had to get through quite a bit and it is petrifying to see him in a vulnerable position. If you have any suggestions for me of things that worked for you (or did not work), please comment. I am gathering input on this issue and I know there are several people that have experienced this for varying reasons.

My Sleep Apnea

Going back to the nightmare subject….

Because of the issues listed above, I am having trouble sleeping. I dream and dream of my little Ty boy with a blue face. I dream I touch him in the night and he is stiff and cold. I wake in a panic. Over the many months I have learned to sleep to the rhythm of his breathing. When he breaks his pattern, I often wake up in panic…I noticed. If Jim breathes (or snores too loudly) I wake him up because he is interrupting my ability to hear Ty’s breathing and I can’t sleep. The evening of the choking incident I had been working all day and my muscles were sore and I was also emotionally spent. I decided for the first time in about 18 months to try a couple of Tylenol PM’s to help me rest better. I have been ultra paranoid to do this because I want to hear every noise Ty makes but I also realized that I was in need of sleep. I woke during the night in a panic. I had dreamed that a Tsunami had overtaken our home and I was under water and my lungs were filling. When I woke, I knew that I had not been breathing. I think I have a genetic predisposition to sleep apnea. My grandfather and aunt both have/had issues with this. I talked to Brooke about it and she called me the next day and told me that she watched a news special about sleep apnea and the special mentioned that a warning sign of apnea is dreaming of drowning. They also mentioned, slow metabolism (which I have), being tired a lot and requiring a lot of sleep (which I am and do), and waking gasping for air (I don’t…Ty does though). I am a light weight anyhow. Jim had to insist that nurses not give me any IV medication after my c-section and gall bladder surgery because I quit breathing too much (IM shots only). I figured that the Tylenol probably triggered the issue. Several nights later though, after Ty’s dizzy day, I had nightmares of him not breathing and I woke up a few times with my lungs burning. Don’t you think that if I woke with my lungs breathing that I was probably holding my breath again? What is causing this? Stress? Am I dreaming about not breathing so then I don’t breathe or am I not breathing and than I dream about it to explain it? I know that I have been sleeping ridiculously light this year and the tiniest little change in Ty’s sleeping behavior will wake me immediately so maybe when I do get tired enough to sleep a bit deeper I tend to breathe more shallow????? I don’t know. Wondering if I should see the Dr. about this or if I am simply being paranoid about something else? Stress over the baby definitely highlights my symptoms so if Ty would just knock all this stuff off I would probably be fine!!!!

I had to giggle at Jodi this week. Her first night at home she was exhausted and sleeping with Karsyn in her arms. She finally drifted into an oblivious sleep. Darin’s cell phone chirped during the night and she startled awake in a panic realizing “Oh my gosh! I have a baby in my arms and I wasn’t aware of her!!!” Typical new mommy panics:). The funny thing about this incident was, when she woke up her first thought was that Karsyn’s apnea monitor was going off. LOL. We then had to discuss how babies do not have built in monitors and that Karsyn is a healthy baby without a monitor so she should not be expecting something non existent to alarm:). As you can see, Ty has given at least some amounts of post traumatic stress to his aunties as well.

So suffice to say it has been a rough couple of weeks for me. I know this stuff is not critical and that we are getting through it but my body has been responding to stress for a long time now and I just feel really really tired…thus the late postings. Could use some prayer in regards to this I think.

Tackle Box Attack

My mother taught me as a youngun’ that beauty is an art:). The two of us have spent countless hours in front of mirrors discussing the virtues of MAC versus Merle Norman, Estee Lauder etc. She discovered as a new bride that Dad’s tackle box would be awesome for makeup so he bought her one. I, continuing with family tradition, have my very own tackle box as well. This morning I almost lost millions down the drain. (Ok…not exactly millions but MAC makeup is NOT cheap). Ty was in the bathtub and I was getting ready at the sink. Small bathroom so I can grab him at a moment’s notice and I don’t fill the tub much:). The tackle box was sitting on the toilet for easy access. Easy access for me. Also easy access for Ty who decided it should come swimming with him! He stood up in the bath and tried desperately to pull the entire box in with him. My boys have each acquired portions of Daddy’s personality. I have named Tanner’s “Jim traits” several times but Ty is also showing some “Jim traits”. (1) Absolute determination and (2) Always a plan. The tackle box is safe for today. I too will have to put more time into planning to keep ahead of the mischief that is running unleashed in his little brain.

RSV Update

So I called the Ped last week to discuss our free card out of jail date. I assumed it would be the 15th as the hospitals declared the season over on this day. The Ped said “Nope”. He had a bad case of RSV last week and decided he would rather us wait for a couple more weeks. So it continues.

Blue Feet Chronicles

The Ped is not worried about the feet issue at the moment but he wants to keep an eye on it. He said that because there is no swelling and no localization, it is likely an immaturity issue. Hmmmmm….hope he is right.

Crawling

I am not sure if Ty will ever truly crawl as army crawling is so effective but we have been observing that he DOES have the ability too. When he is heading for something he has to climb up to (ie. coffee table), he will get into a real crawl position about 18 inches back and crawl on all 4’s for that short distance. I also noticed that Ty can go from an army crawl to sitting now. When did this happen? I thought I noticed for the first time on the 14th but Jim said that he has been doing it for awhile and I didn’t notice. Sometimes he just say’s that to bug me though:). Not sure. Before, to get to a sitting position, he would climb up on something and fall back on his bottom but he wasn’t purposefully trying to sit. Doing it great now though.

Climbing

Ty may not walk yet but he does like to climb. He wanted a coke that Jim had put (strategically) on the opposite side of the coffee table. Ty kept trying to get to it so Jim took a play table (slightly shorten than the coffee table) attempting to block his access. Ty isn’t quite big enough to crawl atop the coffee table but he did figure out how to crawl on top of the play table and THEN get on top of the coffee table. Jim was amazed at his ingenuity. He just never gives up. Where there is a will there is a way and someone I know sure has a healthy dose of willpower!!!

Friends

When Ty was born, some friends posted prayer requests for him on IVillage and BabyCenter May baby boards. I have met so many precious ladies through these boards as a result. (I have not actually ever been on the boards…just have gotten to know the ladies via this site and email/weight loss group…). Anyhow, one of these mother’s (Sarah) happened to live in Chandler and ultimately we established an online friendship and then met. Her little one, Brayden was born on May 9th. Brayden and Ty were only a week apart gestationally. Ty and Braden finally got to meet this week. Brayden is a little heavier and Ty is a little taller:). They had a good time together but Ty wasn’t real big on sharing and gave Brayden a piece of his mind in a very loud fashion several times. Brayden’s gross motor and fine motor skills seem more advanced than Ty’s but overall, I did not have a panic attack seeing another baby Ty’s true age (which was a relief). Here are a couple of pictures (posted with permission:).

P.S.

When Ty had his last RSV shot in April, he weighed 21.3 pounds and was 31.5 inches long!