Another TTTS Angel

I got word yesterday morning that two TTTS survivor and angels were born as another TTTS survivor died. I did not really know the mother of the survivor who lost her fight with TTTS, she was a member of my support group. She had lost one of girls in utero and gave birth to her survivor 6 weeks ago, at 28 weeks gestation (one week more than my boys). Her little fighter survived heart surgery, breathing problems, collapsed lung and finally pneumonia ended her life. She never left the NICU. My heart breaks for her family in dealing with the death of both of their babies. Blessings out to all of them.

Nolan had another follow up appt with the surgeon who did his skull surgery. As always, Dr S was thrilled with how Nolan's skull has shaped up but more importantly, he is a doctor of neurology and so when he mentions how impressed and amazed with how Nolan is developing it makes me happy. Of course I know that he has his brother to support him, help him and love him from the other side. Nolan is just over the 50% mark in growth for babies who really are 9 months old. He is off the charts for a baby born at 6 months (his adjusted age). Dr S just laughed and smiled with Nolan and said how wonderful it was to see such a healthy happy baby. Since Nolan is on state insurance he has to go to CRS to see Dr S. CRS stands for Children's Rehabilitative Services. It is a clinic set up to see children who are facing very serious health challenges. Doctors from around the city come in to see their state insurance patients. It definitely is not like a pediatrician's office where the majority of the babies are healthy. CRS is a clinic for very sick children. Whenever I see a child with health challenges I try to catch their eye to connect with them. I see the light that they truly are and somehow I want them to know that I see them, the real them, not just the body they are in.

I just wanted to mention that I did not join the mama and me yoga class. As it worked out Nolan had a doctor's appt at the exact time of the yoga class for the past three weeks. There is another option out there, I know it.

For those of you who do not know. I am 11 days into my 30 Day Muchness Challenge. A lot of my daily experiences are being posted there. Please check it out. :)

http://www.findingmymuchness.com/2011/06/piperlynes-30-days-of-muchness-day-11/

That's Where It Is

"In the circles I've been running,
I've covered many miles,
And I could search forever for what's right before my eyes,
Just when I thought I'd found it,
It was nothing like I'd planned,
When I got my heart around it, it slipped right through my hands,
Here with you I feel it,
I close my eyes and see it,"

"When I'm crashing through the madness,
Not sure who I'm supposed to be,
When I'm caught up in the darkness,
It's your hand that's leading me,
You bring me back to solid ground,
You lift me up right here, right now"

Even before I was pregnant, this song would bring tears to my eyes. After Eli's death I would play it over and over and over again, specifically listening to this part

In the circles I've been running,
I've covered many miles,
And I could search forever for what's right before my eyes,
Just when I thought I'd found it,
It was nothing like I'd planned,
When I got my heart around it, it slipped right through my hands.

It perfectly expresses how I feel about finally becoming a mother and then having twins and losing Eli. I still cry when I hear or read it. - My identical twin boys, my Eli slipped right through my hands. Eli left us 8 months ago today.

My previous post was on my special day for being Eli's mommy. Last Sunday was my special day for being Nolan's mommy. Nolan got his first tooth on Mother's Day to celebrate. What a perfect gift for me, seeing my earth baby growing and developing. There were some wonderful Mother's day cards. One hand written note touched me and brought tears - "Motherhood was a hard fought battle for you filled with glorious joy and heartbreaking sadness. A battle you faced with courage, dignity and grace..." Yes it was and I hope I do....

It has been a busy couple of weeks. I have been teaching on line, which I love! And with Nolan teething he has been much more demanding and fussy. He wants to be held and just will not let himself nap for much longer than 20 minutes at a time. When he wakes up from his naps he wakes up with a scream. It is not a scream of anger, it sounds like a scream of fear. When he wakes up he wakes up alone. He does not like to be alone. I truly believe he is missing his brother.

Nolan has gotten another helmet to help his skull to continue to form correctly. He will wear it until he grows out of it, probably for about 8 weeks. It's plain white right now. So, now I just need to decorate it as wonderfully as I did his first one. :) He is still on thickened formula, taking medication for his reflux and still on the apnea monitor. We have appointments with all three doctors so we will see if anything will be changing soon for him. He is really interested in food and starting to sit up on his own really well. I think it is time to start baby food if the gastroenterologist gives the ok.

I have been to the doctor a couple of times myself. There is a concern with my thyroid. The ultra sounds have shown a couple of nodules (which is not a problem) one of them is showing microcalcifications (one of the indicators of cancer). I was scheduled to get a biopsy last week but as it turned out they seemed to have shrunk so were too small to biopsy. I now have to wait until August and go through it again. I have very mixed feelings about this. I am working on seeing it as good news, that my body is healing itself. But I have to be honest and say that my biggest experience about this challenge is that it brings back the trauma of my pregnancy last year and all the fear and waiting that went along with our diagnosis of TTTS. I fell into overwhelm VERY quickly, that moment in the doctor's office I think.... Sometimes I just cry everyday again. I am working myself through it and have started a new way of eating and supporting my body through food, vitamins and supplements. It seems as though both my thyroid and adrenals have crashed due to the stress of last year.

Finally - I started the project that I was talking about back in March. Rediscovering Your Light. The facebook page is up and running. The web site is in processes. I am excited about it and am looking forward to doing more with it. All of it because of my boys.

Nolan Updates

Nolan is almost 7 months and growing wonderfully. As of today he is 26.5 inches long and 17lb 11oz. He is at the 50 percentile for 7 months. That is amazing since he was 3 months early and is only expected to be at 4 months developmentally!

We had an appt with the pulmonologist today to check his apnea monitor. He did have one very small episode where his heart rate dropped on Sunday but other than that it looks good. :) The doctors believe it is still because of his reflux. But that is improving also. He will be tested again in another 2 months and we will be keeping him on the monitor for another couple of months as I start to wean MYSELF off the safety of it.

His surgeon is so happy with how he is healing from the surgery. He is going to start doing less evasive surgeries like Nolan's when he can since Nolan has done so well. My little guy has about another 3-4 weeks in this helmet before he outgrows it. The therapist working with him is so impressed with how good the shape of his head is. We are hoping he will not need to be fitted in to another one. It'll be tough on him during the summer here in Phoenix .

Last but not least, Nolan is a charmer, he charms everyone, men and women alike. People stop and say "Hi, Nolan" smile and tell me how adorable, cute, wonderful he is. We had a family in the elevator with us when we were leaving the hospital today, a mom, dad and two boys. The dad asked why he had a helmet on. I explained and he asked how he was doing. I said great, he is healing well. The dad reached down to Nolan and fist bumped him saying "Good job!"

Loving my Nolan and missing my Eli.

So Many Things

Wednesday after the surgery

Nolan is out of the hospital and doing amazing. He was kept an extra day just because of the problems caused by the double intubation and the trauma done to his trachea. They gave him a couple shots of steroids to help with the swelling. Those sent his blood pressure up so they stopped them and kept him another night for observation. We were released Saturday morning. What an amazing little boy. He is such a good healer. So now he is getting tylenol a couple of times a day, is a little fussy and sleeping a little more but is doing amazing for having surgery on his skull just a week ago! He gets measured for his helmet/band this Thursday and should be wearing it by next Thursday. It was a sleeping day today. He slept well this afternoon and mom got a great nap in too. Trying to catch up from 3 days of living and not sleeping in the hospital again. The stress is slowly fading now that I have Nolan at home and my arms again.

I have the ability to see colors around people. I don't physically see them with my eyes (that would be wonderful if I could!) more like a sense of it or maybe like how you would remember a color after seeing it. Anyway - I have been seeing Nolan in a circle of pink light for months, which always made me happy. Pink light meaning wrapped and held in love. On the morning of the surgery I noticed that the color around him changed to a beautiful, brilliant white. The white of Divine love and protection. It was a good thing to see. I know he was surrounded by his angels, my angels and our angel Eli.

Today is the five month anniversary of Eli's death. I slept with Eli's teddy bear last night. Every time I moved in my sleep I was very aware of where the little bear was so that I could continue to hold it tightly in my arms. Cried myself to sleep and a couple of times today. I heard something in the movie "Eat Pray Love" last night that made me think about my grief. They were talking about still loving and missing someone after a break up. The response was - "Every time you think of me, send me love and light and let it go." The sending of light and love is no problem, I was doing that with both of the boys before they were born. My challenge is to "let it go". I realized that my grief has to do with my unwillingness/inability to let it go. I want to hold Eli to my heart again, kiss his little nose that was exactly like Nolan's - not let him go. Of course I know that I will never hold him to my physical body again. It is impossible in this lifetime but at five months I am unwilling/unable to let go of the desire to do so. The space between what is true and what I desire is where my grief exists. My son Eli is no longer on this earth and no amount of anything will change this. I can fight what is true or accept it and let it go. - When I am ready - I am not quite ready yet. I can only do what I can do. Being compassionate and kind with myself is what I can do right now.

Finally, I am so grateful for all of the love and support sent to me and all the healing and love sent to Nolan while he was in the hospital. As a wise friend of mine pointed out to me. "Is it possible that all that you have received has brought about the miracle that his case was better than many and the surgery needed was less?" Why yes, yes it is possible.

ICU Again

As I write this I am sitting on the sleeping sofa in Nolan's room in the PICU (Pediatric Intensive Care Unit). The tv is on HGTV, something mindless and gentle. The room is dim and quiet for right now. And it is just Nolan and I. His nurse has a watchful eye looking directly in the window to the room. She checks the computer monitor every so often to watch Nolan's stats. I haven't asked but I think that Nolan is the only patient under her care tonight because she is in the door within 2 seconds of one of his monitor's warning bells going off.

It's 2am and I should be sleeping, but I can't. Nolan is on a ventilator that breathes for him when he "forgets" to. One of the challenges he still has from his premature birth and his NICU days - When his body gets under great stress he forgets to breathe, apnea. Nolan had surgery today to correct a growth problem in his skull, sagittal synostosis. Basically, a small portion of his skull was unable to grow correctly to accommodate the growth of his brain and it had to be corrected. The surgery went well. He was in for just under 3 hours. The anesthesiologist had to heavily sedate him because he started coming to during the surgery. Because he was anemic Nolan also needed a small transfusion of blood to keep him stable.

And so we sit now. Nolan resting decently, sometimes. And I pray as I type this that he will remember to breathe consistently enough while sleeping so they can extubate him - remove his breathing tube. Because as it is now, when he becomes aware of the tube down his throat, he gags and bares down, trying to force it out. He cannot make a sound so he cries silently. His heart rate shoots up past 200 beats per minute, his blood pressure rises, he thrashes around in his crib, even though his arms are gently tied down so he does not harm his IV's - But worst of all - he opens his eyes and looks at me in terror. He does not understand what is happening. I barely understand..... I place my hands on him so he can feel me, call upon Eli and his angels, keep eye contact so he can focus on me and talk to him to calm him. He quiets within a few minutes - during those minutes I am in hell. Having one of my babies die is hell. Watching one of my babies go through hell is...... is..... somewhere no one ever wants to be.

I am disgustingly tired, emotions stretched tightly, in a normal world I would be hungry or be sleeping but the only thing I can focus on is willing Nolan to breathe on his own so we can take out his tube and I can hold him close to me.

Going Inside Myself

As I do when I am dealing with anything that brings tremendous fear, I have been going inside myself, hiding. The date for Nolan's surgery has been set for February 9th and I am scared.

The surgery is to correct a growth pattern in his skull, sagittal synostosis. The surgeon has done about 100 of these corrective surgeries. Nolan's surgery is actually going to be a modified version of the more extensive surgery most infants need. Recovery should be 1-3 days in the hospital and he will need to wear a helmet for 2-6 months to help reshape his skull. The reasonable, rational part of me is happy to know that his surgery is going to be so much less than originally thought
AND
knowing that it is coming up is bringing back the trauma of the medical ordeals of my pregnancy and Eli's death. Experiences I am still in the process of healing. My fear is so overwhelming right now that it is hard for me to breathe. It's like the elephant in the room of my life. I find it difficult to talk about. I don't know what to say and talking about it makes it way too real for me right now. It is impossible for me to hold Nolan and not cry. I go back and forth from wanting to curl up on the floor of my closet to wanting to spend EVERY SINGLE moment with Nolan. I do neither. I keep doing what I need to do to take of what needs to be taken care of and try to find my balance. Nolan deserves a mother who is strong and steady as he goes through this - so that is what I will be.

I am praying and meditating - moving myself out of fear and in to a place of love - Asking for and accepting thoughts and prayers of strength, healing, love and light for Nolan.

Tonight, I held Nolan and danced him to sleep, with his head and body resting on my chest. I am grateful and filled with love.