We're Home

We're home. :) My daughter's birthday was today so it was immediatly to work on that. whew...it was easier on me to be in the hsopital!
Too tired to write tonight, but we are here and he is so wonderfully normal it amazes me. :) I feel so blessed. I feel so proud of him.

Car Seat Test

Better with his blanket. Not crying for the past 25 min...

Here's a funny pic from a few days ago... just a little less stressful to view.

He does NOT fit!

He has to sit in it for an hour and a half to make sure his little airway doesn't close. His oxygen stats have to stay above 86. We are staring nervously at the monitor non-stop...Not that you'd want to bring him home if he can't even sit propped without his airway shutting...but still you just don't want your child to fail any test! And this am I let my hopes get up that he's well and coming home and now I am FREAKING. SO ANXIOUS. It's going to be a long day...

At 3 I take an infant CPR class. That should be the last thing before we leave.

Well, actually, the doc came in and said they need more labs because his second platelet count was a little low - and since he was exposed to parvo a while back they need to make sure it's not attacking his blood cells. I hope it comes back ok. Even if it doesn't they will let him go hoe, but he'll need more tests to see if it begins to raise on its own. If not he'll need a transfusion. 

But hey, he's alive! And that's way easier still than the other way. I am not complaining. Just nervous!!! 

Going Home

13 days old, or 35wks, 1day

Guess who's going home today? We are! If Trey passes his car seat test, that is. As long as he can sit in a car seat for an hour and a half and not lose his open airway, we are outta here!
They have been absolutely wonderful. I feel like he's totally safe here. So I will miss that. But my kids REALLY need me to come home and live a normal life. My daughter especially.
My son is less upset over my two weeks here. He told me last night that, "having a baby rocks!" I asked why. He said, "Because not only do you get a new brother or sister, but you get to go to a bunch of people's houses!"
And while I am in a laughing mood - the other night my milk makers were really engorged. I told my husband, "Look at this. Some people pay like $6,000 for this."
He quickly replied, "Yeah, and we paid $40,000!" (Our insurance isn't that great unless we go to one of my husband's hospitals.) He's funny even sleep deprived.
My mom even cracked some funny jokes here (which is not nice since my abs have been spliced open), but they are a little too not nice to share! Silly mom.
PS - Trey's 4lbs 5oz now, and he has a little double chin. When did that pop up? I've been here the whole time and it grew before my eyes.

Day 10, Sunday July 25, 2010

Another quick turn around. Trey perked right up -- took all his feedings by mouth, beginning last night and going throughout Sunday. :) When I say took, I mean, guzzled the whole bottle in 5 minutes or less. The nurse just told me she's never seen a baby do such a quick turn around. She just loves him! She kept asking me all night long did I want her to feed him so I could rest. But I don't think she was so much wanting to help me out as she was wanting to hold and feed him. Finally, at the 6am feeding, I layed down long enough for her to set up to feed him. I wanted to do it, but then I imagined maybe it fills her up to take care of these precious NICU babies... so I got up after he'd begun to suck the bottle and sat next to her, just watching. That was hard! I wanted to cuddle him! I just waited til she was done and gone, then took him and had a nice long chat with him. He was wide awake and interested in everything.

He's now 4lbs 3oz!

The doc okayed him to nurse twice a day now. They worry he won't get as much food nursing...but they don't know the relationship between him and my milk maker. He gets more milk in less time. He couldn't finish the bottle after he nursed yesterday because he still had milk in his tummy from nursing (gross, but they check this stuff with the NG tube). 

So, he's doing great and I am grateful. If he doesn't piddle out again, but keeps this up today, his tube will come out. Then it's just a matter of them documenting that he's maintaining this positive growth, as well as him staying warm without help. He hasn't been in the closed incubator for 2 days. He will drop temp a bit, so we give him a warmed blanket. That rallies him and he then maintains a higher temp for hours. This staying warm business is a challenge for his long skinny frame.

I find myself constantly torn: am I happy or sad? Emotionally, happiness and more so, peace, fills the aching parts inside. It's been wonderful. But just as I am about to burst looking at his cute face, suddenly I see Claire. Then I flash to her losing fight and feel so sad that it's not her warm body I am holding and helping grow. 

Blue and I are so grateful to realize that Claire looked like Trey! She was so swollen it was impossible to really see her. But now that we have another baby about her size and with her facial structure, wow! Who knew - she didn't have Trey's nose, but otherwise she looked just like him. Even down to the ears they are the same. So, little Claire was her daddy with mommy's nose and ears. I never considered a girl looking like Blue. But how cute! My heart is broken thinking Caidgen would have a sister look like him, that we'd have three look-alike kids and two very unique kids - a red head and a dark haired boy. 

Jackson was all his own little man. I contrast his big size to Trey's little size. I can't describe the yearning to hold him again. I miss him so badly, as if I had him all my life and now he's gone... I asked Trey about him. I feel strongly that Jackson sent him down to us with specific instructions to love on us and do things for us that he can't do not being here physically. I feel jealous of Trey being so recently with our family. I feel sad that we don't all get to be together here, now, laughing at each other, learning from each other. 

I guess as my heart grows for Trey the hole that's there for my others also grows. It's just how the heart is. We are left with nothing to do but be patient with our wants, and steady with our needs, which are to try to find and execute the purpose that will make this trial all worth it in the end. 

JK --- I went to shower after writing this post (trust me- MUCH needed, with all those hormonal night sweats). I got back at 9:15. His new nurse was SHOCKED at him! He was done with his bottle in 7 minutes - she couldn't believe it. She said she's never seen such a little guy eat so fiercely! Are these nurses for real, or are they taught to be super positive? Anyway, I didn't want to tell her that 7 minutes is actually a little slow for him lately! Anyway, she said, "he's got quite a voice. Wakes up and is ready to go! I couldn't get the bottle warmed fast enough for him."

Then I saw that the NG tube is out! Yikes! I was gone for 25 minutes and she did her assessment, his feeding, the doc came by and said take it out, and she took it out! I missed all the action... wow.

Tired Cankles

Do you want to know how to wholly love your mediocre self? Take a feature that is not that great, like my feet for example, and then view them for a week after you've been pumped full of IV fluids. They will be so puffy, so cankled out, that when the fluids finally ease out, you'll see what you once saw as mediocre and love it! I am so happy to look out at my feet when pumping and actually see some bone, some variation in size and not just two big marshmallows. I have never felt so happy with just me. :)

But for the important stuff. Trey gained another ounce - he's 4lbs 1oz now. But he's petering out on energy. His NG tube (nasal gastro feeding tube) has come in handy as he has gotten too worn out to eat much. Yesterday he was awake so much of the morning - just wide awake checking things out. He nursed twice and got his first bath. That took a lot of energy. The rest of the day we couldn't wake him enough to eat anything. So he had most of his food pushed through the tube.

The doc says that is common for preemies -- it takes a tremendous amount of energy to do anything at all and they start out great, then fizzle off as they fatigue. So last night we alternated waking him to bottle feed with just "gavaging" (pushing food through the tube) him. The rest seems to have done him good - he's had two full feedings since. But we see that this is a two steps forward one step back process. Until he gets and keeps enough energy up, we can't even consider taking him home.

I'm okay with it. My fear is the whole "failure to thrive" issue that some babies get. I don't want to exhaust him too much. So it looks like we're here for awhile.

Aunt and Uncle visiting - they had 6 plus pound twins: that's FOUR of my little Trey's at once inside her! Go girl.

Hard to tell, but Trey's IN WATER here. All soaked up in warm water as we gave him his 1st bath. I'll save the nude pics - just imagine a frog - cause that is what he looked like: A huge tummy with skinny legs splashing in the water. So sweet. He didn't cry at all.

My Kids

My daughter with her grandpa, who's been watching the kids all week

First hold

 

I feel like I just had my baby yesterday. Literally. It's been like one long day of caring for him. My husband says it feels like weeks and weeks ago.

Do you know where my kids are right now? At their regular summer movie fun movie that we go to every Friday. My sweet sister in law picked them up and took them. I am so thrilled that they're doing something they normally do.

I was discharged the Sunday after we had Trey but haven't been home yet. He's got his own room and I stay in there with him. I don't plan on going home till he goes with me. The doctor just checked on him (all's normal) and he told me to go home... I don't think he knows what it's like to go home without your baby, I''ve been through that hell twice. Knowing they were still at the hospital - in a fridgerated morgue. Even though this is different, I cannot bring myself to go home without him. I refuse to make another memory even remotely close to those terrible ones.

Not too mention that we live over an hour from Phoenix Children's.

My kids have been staying with their grandparents, and loving it. I'm SO thankful that has worked out.  They've done a great job at keeping them occupied and filling in for me! I don't know if they will want to come home with me when the time comes!

The kids loved getting to hold Trey a few days ago. It was just for a minute, but it did a world of good for them. They had not been allowed to see him for the first 4 days he was born. My son had a runny nose so they were banned from the NICU. When they saw him first, looking into his isolet, my son was in awe. My daughter, not as much. She seemed really guarded. I think she thought we were keeping some secret from her about him being sick. Or maybe she was just waiting for him to die...Anyway, it was a little sad for me. I felt for her. I know this must all be stressful and bring back a lot of bad memories. 

My son though, was ready to embrace him. He insists that he looks like his cousin Tylie. I said, "son, he looks like YOU did as a baby." He thought about it a minute and said, "Well then, I guess I look like Tylie." I don't think her parents would agree, but he's sticking to his story.

The second time the kids saw Trey is when they held him. As my step dad said, "It all changes when they come out of the box." It was so wonderful to give that to them. SO different than in the past. So different. 

Blue went home once with the kids, so they could sleep in their own beds and give their grandparents a little break. He packed up some stuff to bring me. My daughter helped him. He told her to pick out a light jacket for me. She said, "Daddy! Why would Mommy need a life jacket in the hospital?" I loved it.

She also found me a scrunchy. Blue was not sure if that's what it really was ( I love that he's still cluelessly male after being together over 10 years). My daughter insisted, "Dad, I know what a scrunchy is. I have lots of them." She got me exactly what I wanted.

BTW, yesterday (Thursday the 22) Trey broke into the 4lbs mark! He was exactly 4 lbs.

Do I Dare Share....

The 6am feeding was the last one with this nurse we didn't like. She was off at 7:30. So, instead of fight with her about it, I decided to just wait and talk with the doctor when she "rounded." SO... I "fed" Trey the massive amount that I was supposed to, and by "fed" I mean I squeezed out 80% of the food onto his burp clothe when she wasn't looking! Even the little bit he got, he acted really full and spit up-ish. I left about 4mls in the bottle and told the nurse he was too full for it. She quickly pushed it through his tube. I was laughing inside... feeling like such a cheat! But I'm glad I did it.
Why? His 9a.m. feeding: he ate about 33mls, and promptly spit up a lot afterwards. I asked the new nurse to note it in his chart. She said, "Has he been consistently spitting up since he went over 30mls?"
"Yes, he has actually," I said, thrilled that she was seeing the same pattern I was.
"It may be just a little too much for him right now," she said. "I'll tell the doctor."
Hurrah.
I'd told the resident doctor just as much right before the feeding. I also said I was not happy that the plan was changed so fast without any solid indication that he needed to be pushed with more food.
She actually said she had high "expectations" for him since he has done so well and was hoping he'd gain weight fast because he's done everything else so fast.  She said they don't technically have expectations for the babys, but she had them for him anyway. She said we could watch his natural feeding patterns a little bit more today and just see how it goes. She really wants him to gain weight.
I didn't dare tell her I cheated his 38ml feed! Just said he spit up a lot of it!
I'm so going to hell.

Angry

Big Day! He's officially 34 weeks today.

This is just after I fed him. I wanted to remember his size, in comparison to me.

He looks happy. :) He eats really well: very peacefully. A nurse showed me how to feed a preemie in a way that cuts down on swallowing air and choking.  It's going really well.

AND, today he nursed! He just did it. I have ZERO confidence that I can do it without a lactation specialist there to help me, but at least we have one success. I am SHOCKED that he did it! He's gifted.

He's on the edge of being jaundiced so they decided to just light him up today (billruben was 11.6 and 12 needs a light). Said it'd be hard on him because he couldn't be swaddled, he had to wear glasses. Babys hate it. But, to my relief, he's been completely fine. Watching him actually makes me laugh. He's such an AZ kid - already getting in the tanning bed! So cute!

Look how little he is...

This is how he looked when Blue got back. He looks like he's just chillin.

Notice NO IV in his head! That came out today as well. He gripped my hand and sucked a pacifier as the nurse did the dirty deed. He definitely felt pain a bit, but I am happy that he can be soothed. 

  So he's all bottle or nurse fed now.

Another big milestone- his oxygen monitor, the "pulse oximeter" came off today! That one we didn't want to come off: We like looking at a monitor and seeing his oxygen at 100% or close to it. I told the nurse she really didn't need to take it off, but she insisted he's doing so well he doesn't need it. I told her i feel like he's a gifted child every time I look at it and see him at 100%, well above what was expected of him. It helps me not be nervous about him. She just took it off anyway. :)

So, many many milestones today.

I should add that the lactation specialist wanted to know about his birth because she couldn't believe he eats so well. We said his cord was wrapped around his neck 6 times. She gasped, "So he's the one! He's the one..." She'd heard about him. She told us, like everyone did, that she couldn't believe he's alive. She said she thought her son had the record - 5. Same story - she insisted something was wrong and everyone told her no, he was fine... anyway, that's another story. But she said she's been in the NICU a long time and we should know that we are very lucky. As we still ache for our other baby's, we looked at each other and knew that no one needs to tell us we're lucky. We know exactly how different things could be right now and we are sooo thankful for a repose. So thankful for our little man who's a fighter, who's here and happy, who's healing dark places inside.

Tender Feelings of a Father

The words that follow are deeply personal. My nature has always been to keep many of my personal feelings to myself. My wife can attest to that. But, I feel compelled to say a few things about the events of the past few days. First, the gratitude in my heart for Trey and his life is quite literally unspeakable. As I have knelt in prayer to express that gratitude the past several days my words have been rendered inadequate. I have simply had to rely on my belief that a living God, who is my Father, comprehends my feelings and received the profound thanks that I have conveyed. Tears flowed tonight as I attempted to thank Him for His hand in Trey's birth.

There have been two times in my life where I was given something that came unquestionably and mysteriously from a source outside my own control - so much so that I would have to deny my own existence as to deny it. I have been in many situations in life where emotions and feelings seem to come out of nowhere to effect my actions. I have an athletic background and I have felt the sudden rush of adrenaline that feels like an injection of power, or stamina, or strength to do things that I didn't know I could do. I have been in life saving situations in my profession where a sense of action and knowledge has spurred me to make crucial and seemingly above-my-ability judgements. I have had promptings as a parent to check on a child in distress or felt impressed to discuss something with my son or daughter that I couldn't quantify, but nonetheless needed to do or say to them that was above my ability to know. Many of these instances can be explained by spiritual or even scientific reasons. What I felt shortly before Trey's birth was not one of these things. It was something heavenly. It was something profoundly spiritual. It was something Godly. It was, above all, something impossible to summon from my own mortal being. Trey's situation before birth was so eerily similar to Claire's. Anemia, sinusoidal heart rate, prematurity, transfusions, highest level neonatal care, hydrops . . .  all the same words and phrases. My reactions to both situations were identical. Pleading, praying, worrying, discouragement, despair, bargaining, promising, begging, crying, feeling helpless, powerless, inadequate and unable to do anything! I wanted Trey to get better. He got worse. I wanted to leave him in the womb. They wanted to take him out. I wanted time. They told me there was none. This ALL happened before with Claire. I had faith with Claire that she could be healed. I didn't doubt that her situation could be reversed. I believed she was going to live. I prayed and said as much. With Trey, it was the same, only this time I had more reason to doubt because of what happened to Claire. If you think I was able to muster more faith or hope for Trey you would be mistaken. It took everything I had to believe that he could be ok. The situation at the time seemed to dictate that he too would suffer and possibly die. My prayers were the same. My faith, probably less. I attempted to trust and found myself inwardly falling into despair. I read scriptures and tried to remember that I felt long ago he would live. Nothing. More worry. Despair. The doctor came in and said it was time for delivery. I was sullen. I asked one last time for help. What happened over the course of the next few minutes I won't be able to describe properly. A wave or something closer to a blast of peace and assurance came over me. My fear and sadness were INSTANTLY replaced with what felt as close to knowledge as anything I've ever experienced. The knowledge was simply this - that Trey would live. That he would be ok. That there was a purpose to his life. I felt like there was a chorus in my head that sang words that only my heart understood. I was at that moment, somehow, miraculously happy. I told Kelly "everything is going to be ok." As I sat outside the operating room before the delivery I saw the doctor who would be delivering Trey. A voice in my head said, "tell him what you know." I said to the doctor, "I just want you to know that I believe he will be just fine and that everything will be ok." He paused for a brief second and said "I believe that too."
To truly understand the impossibility of what happened to me inwardly at the level I experienced it - the change from true despair to perfect happiness - is probably too difficult . But as I said, I feel compelled to share it with the world, or anyone who will listen.
 - Blue

Miracle Baby

Early this a.m. the soft spoken nurse told me, "Your baby will live. I know he will live because he is a miracle baby. I have never seen a baby with 6 nuchal cords live. He is a miracle so he is meant to live."
That was a beautiful moment for me.

Later this a.m. the next nurse marvelled at his eating. It is now 15mls, which looks like about a 1/2oz. She said baby's his age just don't eat like he's doing...

For now I am profoundly grateful.

Food Updates

Just want to share that the doctors have decided Trey is doing well enough to increase his feedings. He eats every three hours - my breast milk in a tiny bottle. He started with 3ml every three hours. Then it was up to 5ml. This a.m. it was increased to 6ml, and now it's even more! We are to add another 3mls every 6 hours - a pretty quick increase I think. That's a great sign. They are happy with him. So far he's digesting perfectly. So we will see.

 Today he burped a few times. He sneezed. He pooped. He even did the quintessential, pee while mom's changing his diaper - he peed 3 times while I was trying to change him! So we used up 4 diapers in like one minute. It was such a normal parenting experience, though I was leaning over a plastic "Cadillac expensive" incubator while changing him. It was a cool thing for me. It's been a REALLY LONG time since I got to do anything normal with my own baby.

Quick Thoughts

Don't think I've been this happy in a long time...

The tiny little source of my heart burn. :)

My son and husband rolled into one little being.

Thought today of the events that saved this little guy's life... an integral part of it has to do with me FINALLY getting contractions. People who know my history know I don't get them - ever. My son was a week overdue and I still didn't know what a contraction felt like until pitocin was running though my iv (then I wanted to die, but threw up instead).

Same with my second.

I began contracting with Jackson but not until he died. I think my body knew it was over and so began contracting.

Nothing with Claire.

So think how EXCITED we were that I began having contractions about 2 weeks ago! So happy! I was finally doing it! And maybe I would be able to go into labor on my own with this little man.

That was not the reason for the contractions.

It was because without them constricting the cord that was around his neck - medical records are saying now 6 times, around his body 2 times, he would not have failed non stress tests. He still would have languished and lost his activeness, as he did the last 2 days. But he'd pass an NST because the only time his heart rate wasn't up to par was when I was contracting. He still moved, just more weakly.

I feel like, therefore, this was part of the plan to cue docs to pay attention. As my new dear Colorado friend knows, who lost her full term daughter just 2 mths ago to a cord accident, docs don't think of -DON'T LOOK FOR CORD PROBS. If your baby has a heart beat and moves at all they send you home with a piece of candy and tell you to come back in a few days.

My husband saw poor Trey's situation as he was pulled out and shivers- he would have been dead SOON. You couldn't see his neck at all. It was not like one little cord layed out like a necklace around him. It was so think in its twists that it was flush with his chin. As he grew it tightened.

 I have a 4D US pic that was taken just a few hours before he was born. Ironically, you can see the cord RIGHT UNDER HIS CHIN! Can't wait to post it, but don't have a scanner here at the hospital. But right here, with the best of the best, a doc looked me in the eye when I asked him to look over the cord on an US before we delivered, and he said, "the cord is a non-issue. What your son is doing," he pointed to the monitor showing the decells, "that has nothing to do with the cord." He's a good doc. But he was way off, as 9:19 PM proved.

I feel like Trey's cord was wrapped around his neck and arm for a long time. I have seen it in US pics since he was like 22 wks. I think he lived with it as long as he could. I feel vastly grateful that he was able to make it to a sustainable age, and a good one at that (33 wks) before God knew it was that precarious time that he had to be born or die.

 I'm grateful for Jackson's life and death teaching me that even when the best experts tell you there's no pattern with cord accidents, they are wrong and I needed to find the patterns myself.

I'm grateful for Claire's sufferings - which were great, because without her tragic life and loss, the docs wouldn't even have taken this seriously. Only because of her mysterious death and heavy anemia/hydrops diagnosis did they think they better error on caution's side when deciding whether or not to test Trey more. While they were trying only to prevent another Claire type loss, they "accidentally" prevented a Jackson type loss. They thought they were racing against anemia to save him, but they were racing against a cord.

I'm thankful to you who couldn't sleep with me as I couldn't sleep...I have not been able to communicate until now, but it meant a lot to me that while i was panicking in the hosp and the nights before I got there, so were a few others. It meant a lot that you knew how much this meant to us, how tragic the last 3 years have been and how closely linked these days were to them. Thank you for worrying with us. It means the world to me. I think it means a lot to my babies too.

And want some TMI? Like I am good at? I really keep feeling like my two kids are here and just STARING at me and Blue! I feel like they are thrilled to be a part of this experience that gives their family such joy that we haven't had in SOOO long. They are truly happy for us. And I feel bad - I want to tell them I wanted to oogle over them instead of weep over them. I wanted them just as much. I still do. Not even Trey can replace them. I still miss them. I don't want them to feel "moved on" from. But I can't believe the pure love that must exist on the other side because I only sense that they are most happy for us and wanting to bless us more. They do all that they can. They are not jealous.

BTW, hope Blue doesn't mind, this morning he took me to a room and showed me what he saw - first thing this a.m. He entered a room, alone, and on the wall were two wall hangings. One of a butterfly and one of a dragonfly. I was so moved. I want him to take a pic and if he does I will post it.

Trey's story so far . . .

Kelly is recovering from an unexpected c-section so I (Blue) wanted to give an update on how things are going and what took place. I'll leave some details for Kelly to write about, especially the info on the umbilical cord.

We were admitted to Good Sam after a concerning MCA doppler test. This test showed probable anemia. Anemia is a scary word around our house since it was the first problem that we were told Claire had. The doctor wanted to do a PUBS procedure, which is essentially a blood transfusion for the baby in utero. As the hours went by another concerning thing appeared and that was the baby's heart rate decelerations with every contraction. The doctor on call still wanted to schedule the PUBS for the next morning. We felt ok about it since he is considered one of the best at this procedure. Another doctor, Dr. Cook, who has been our favorite since our first meeting with the high risk docs, startled us by saying he was leaning towards delivery soon. He didn't like the heart rate decels. This was scary because Trey would be 7 weeks premature and have a whole other list of possible complications with his suspected anemia. I, honestly, didn't like the idea of delivery. Kelly and I prayed for guidance. Immediately after Kelly started contracting more and the baby had more decels. Dr Cook told us that he wanted to go to delivery now. They delivered him at 9:19pm and to everyone's astonishment Trey's cord was wrapped tightly 5 times around his neck and twice around his body. Two of the doctor's present later said they had never seen a cord wrapped that many times and so tightly and that his cord was the longest they've ever seen in their practice. Trey immediately cried, to my huge relief, and started breathing on his own and turning pink. They rushed me and Trey to the newborn ICU (Phoenix Children's Hospital wing) while Kelly recovered. They hooked him up to monitors. His heart rate? Perfect. His breathing rate? Perfect. His oxygen saturation? Perfect, 100% with no oxygen. In fact, he hasn't needed even a puff of oxygen to this minute. He is skinny and small, but very active. I was able to hold him for a couple hours until Kelly arrived. She, like I, was anticipating tubes, drains, oxygen, and discouraging news. Imagine her surprise when she was wheeled in to the NICU to see me holding him, no tubes, and baby Trey sucking on a pacifier. He has since maintained this extraordinary condition and hasn't even hinted at anything concerning. He has even ate at all 4 feedings, something they definitely didn't think he would be able to do at such a premature age. By the way, he is not anemic at all!
I am thrilled with what has happened thus far. I feel profoundly grateful! I have felt everyone's prayers in our behalf. Thank you everyone for what you have done!

I wish we could be sure that everything will continue to progress like this, but Trey has a very long road ahead of him. They like most preemies to stay in the hospital until around their due date so he has some big milestones to achieve before Kelly and I will feel relief. As they say here, anything can change at any moment and take a turn for the worse. He has to gain weight, learn how to coordinate eating and breathing simultaneously, regulate his body temp, show signs of good digestion, and many, many more things. I'm most worried about infection. His immune system is so immature that any sort of virus that affects his lungs would be very worrisome.

That's the gist of things for now. There is a lot more to the story. Personally, I feel that God has a purpose on earth for Trey and that he influenced and oversaw the events and actions over the past few days.  Please continue to pray for him!

- Blue

A Miracle

Trey Samuel was born at 9:19 pm. 3lbs 12oz 17.5 inches long. Doing good so far! - Blue

Update Again

The doctor said he wants to deliver the baby now since he is past 32 weeks and has been given steroids. Kelly is going to deliver tonight. The doctor felt there was no reason to add more stress to the baby.


- Posted using BlogPress from my iPhone

Update on Kelly and Trey

I was asked to update the blog so that everyone can be informed of what is going on.

Kelly and Blue are at the hospital after they and the doctor discovered the blood levels in Trey's brain to be high. They have been running tests and also have found that Trey's heart rate is decelerating now every hour and a half, due to contractions. There will be a blood transfusion tomorrow (PUBS), where they will draw a blood sample from the cord. If they find Trey to be anemic they will begin transfusing him with blood. The doctor believes he is only moderately anemic, due to the elevated blood in his brain.

It seems that these complications are caused most likely from Parvo, though not connected to their son's case who has just recently had the same thing.

It sounds as though after tomorrow's procedure Blue and Kelly and the doctors will have a better idea of where to go from there.

Please keep Kelly, Blue, Trey and their family in your prayers.

-Natasha

Headed to the Hospital

I went to my regular NST appt yest - they had mixed up scheduling so I didn't get an NST, but an ultrasound instead. It was a bio-physical profile. That's a test to check babies movement, practice breathing, etc. He gets 30 min to pass and what you want is a score of 8. It took her quite a while to get him to move and practice breathing, but apparently she was happy with the test.
I was not. He's ALWAYS moved a lot in ultrasounds. The night before also he seemed less active. I asked why they didn't do an MCA test, since I am due for one. They thought I didn't need one anymore -- I asked for one more just for peace of mind. They were fine with that and scheduled it for Friday.

SO - today I went in again for an NST. Baby was moving, but not much and not strong like normal. I was going nuts - am I crazy? They all think I am crazy... but in the past when baby stopped moving something was wrong. Well, he did not produce a normal NST. He got the ultrasound test - 6 of 8. Refused to practice breathing. A 2 or 4 is "baby in distress." A 6 is like, limbo - not a healthy 8 but not rushing you to the hospital.
So they did the MCS dopler to check the blood in his brain - it had jumped up. He's on average about 1.2 and today was 1.7. Big change for him, though it's not a deadly reading. So the doc was like, he's not totally healthy, but we don't need to rush you to delivery either. We'll check it tomorrow and see if he gets worse. If not, he can stay this way until you're term.
But after conversing with the rest of the high risk team, who were split 50/50, they decided we should go to the hospital for more testing. So, as soon as my husband gets here (my mom's) we are headed to Good Sam.
Pray for my SANITY. I am NOT happy about the hosp, though it's good for the baby. It brings back BAD memories and I know I will panic a bit!
Poor baby... so mysterious. We need your prayer for him and for us to keep faith.

Claire's First Birthday

Wow! Is my husband good or what? This was waiting for me when I woke up. A beautiful memory box for Claire. The frame is one I wanted throughout my pregnancy with her. Every time I went to Hobby Lobby to get it, they were out. It holds an ultrasound pic. A year after she left us, I finally got it. :) He also found a glass dragonfly, the symbol we occasionally see to let us know she's around. The blanket is the one she used in the hospital. The pic was of her. The bear is new - he said for me to hold when I am missing her most. And the card - what a way with words my husband has. I am thankful to have him to go through this trial with.

This is special. My husband said he felt a strong impression that Claire wanted me to have something. He was led to this cross - which has the scripture that I have up on my fridge, actually. It's how we chose Trey's middle name - Samuel. An Old Testament story talks of a Hannah, who couldn't have babies. She went to the temple, poured out her heart to God for a "man child." A priest told her, without hearing what her specific prayer was, that God heard and would honor her prayer. She got pregnant and had Samuel, calling him that because "for this child I have prayed." We identify with Hannah - have been praying for a child since 2006! Claire wanted to tell us that we will have this baby. She wanted to give us comfort of this on her birth and death day.

My brother and sister in law gave us flowers and a card! That was so thoughtful of them. We were relieved, honestly, that people remembered her birthday, and that people were so kind about it. It made me feel so good to have the calls and texts and of course these flowers!

My genius friend Jeni gave us a gift card to Build A Bear after Jackson died. She thought it might be really good for the kids to go and make something to remember him by. Well, Blue took Caidgen, but forgot the card! We thought this was a perfect time. My daughter named her pony Claire. My son named his bear Trey. They LOVED this! They asked if we could do it again on Jackson's birthday.

My son rubbing the bear's heart on his muscle so his bear would be strong.

Though it did not rain, there was a rainbow in the sky as we drove home. There was a rainbow on Claire's funeral day as well. This was not the only similarity. The weather was the same temp - 111. Yucky, but cool nonetheless. It was a hot day, then clouded over and got stormy looking in the evening, as it did towards the end of her funeral.

Also, this same "hole broke through the clouds," as it was on her funeral day. There were 2 clouds like this. The kids shouted - one for Claire and Jackson to look through to see us and one for Grandma Haught to look through!

My husband wanted to read what he wrote on her birthday. He got on the computer - it said 7:04 am, the exact time she was born. Stuff like that happened through the day, and we felt like there was a connection with her. Is that too much information? It means so much to me I just want to share with others who care!

Our balloon release with notes for Claire. My sweet mom and step dad also did this - at sunset. We of course, missed the exact sunset! We're like that... but we were there shortly after. So miles away, two families were releasing balloons for Claire. :)

SOO sad this is blurry - my son took it! I was SOOO glad my husband's work insisted he take the day off. That was more than they needed to do, and more than I expected. But it was awesome.

This is Claire's first service project --- my husband's idea. My sister in law made me a similar pillow when Jackson died, and I LOVE it. I have never made a pillow or cross stitched. But our friend just lost her little baby girl so we thought we would try this out. We went to a few stores to get the stuff. I did the deed, my husband advised and helped me with misspellings (I am so bad) and my kids stuffed it. I think Claire must have helped me because I NEVER get something right the first time when it comes to sewing. But I love this! I want to make one for Claire too (can't believe I need two...a blue and a pink).

It was a much better day than we anticipated. People specifically told me they were praying for us to have peace. I think it's amazing, because we did. I thought it would be terrible. The memories are terrible. I am so glad not to be in the hospital losing her this year.

There is nothing to compare this situation to. I can't express what we felt, thought, carried with us in that time. We looked at all the pics as a family. My daughter was a little upset at the computer because "it's just trying to make us cry."

I'm thankful my family is still together a year later. I am thankful that we love Claire and there are others in this world as well who love her. I am thankful we could do positive things in remembrance of her. I can't believe we have made it through a year without her, and without her brother. The unthinkable happened, and we are still pushing on. Thank you to everyone who was with us in thoughts and spirit on her birthday. You guys rock.

And btw - I LOVE the Cookies for Claire idea, Andrea! I think we should do that!

32 weeks

Yesterday began the twice weekly visits to the doc. They do non stress tests twice a week and an amniotic fluid level check once a week. That's combined with the anemia ultrasound checks every two weeks and growth ultrasounds every month. How about those high risk docs?!
Results from yesterday? They said he looked so normal that his results could be posted in a textbook.
I'm grateful that we have gotten this far with him. I remember Claire's docs offering me a lot of testing and monitoring once we got to 32 weeks. I was really unhappy with that - there are a lot of things that can happen BEFORE 32 weeks... And of course we didn't ever get to that wonderfully famous 32 weeks testing with her... It makes me sad. Like she was not looked after as well, and she suffered for it.

I was also reminded of her suffering last week when we realized my son had caught Fifth's Disease...a fairly common childhood virus that is not harmful to him, but can kill a baby in utero. Fifth's Disease was the first thing docs in the ER questioned me about when they saw how hydropic Claire was.... The effects of this virus can cause decrease in bone marrow, anemia, then fetal hydrops. I read about it and it was like reading about exactly what happened to Claire. Granted, the virus or bacteria that killed her was NOT the human parvo virus (Fifth's Disease). She was tested for it and results were negative. It was just ridiculously ironic that such a virus with such potential came into my home with this baby. My kids have never had Fifth's Disease.
I had blood drawn last Friday to see if I have been infected. The good news is that even if so, at 30 weeks, it's highly unlikely that it would hurt the baby that much. It's younger babies that are susceptible to it's deadly side effects.

Tomorrow is Claire's birth and death day. I want to do some type of service... I thought that if every year we do some service in her name, think of all the good her life will accomplish. Because she lived, others will benefit. But I have NO creativity in pregnancy... have no ideas what to do! Any thoughts?
Any other suggestions about what to do for her birthday? My daughter wants to write her a message and do a balloon release. I may make her a cake, though the thought of her not being able to make a mess with it makes me cry, so I may just skip that all together. My kids don't need to see me crying...
Any other ideas?

31 weeks

29 wks - I think! My daughter LOVES to love on Trey. She wasn't like that with the last two. So this is sweet. Sometimes she just walks up and pats the belly, "Trey, you better live! Do you hear me?" Mostly she calls him cute and whispers that everything is okay...

WHY do I avoid the blog these days? I don't know... It's certainly not because babies and losses are not on my mind. I don't know... I am still monitoring three times a day. And starting Tuesday I begin going to the doc twice a week for Non Stress Tests and Ultrasounds. It's just hard to talk about I guess.

I passed the gestational day that I lost Claire: 29wks 5 days. It was on Father's Day (I did not bring that up to my husband). But even though it made me so sad to be taken back to that painful and stressful time in the hospital, I was grateful that I knew without a doubt that Trey was healthier than his sis, that he was not suffering like she was at that point. He was kicking and moving a lot all day. She was maddeningly still even weeks prior.

When I hit 30 wks I felt a HUGE weight lifted off - one because I "beat" Claire's time and two because babys are just more viable after 30 wks. I knew that even if he got anemic now, he'd be better off than Claire was. She GOT anemic long before she was born.

Generally I feel better about everything - shocker!

Now I have only Jackson's demise to worry about, which unfortunately is a threat until the last day. I do believe 100% that my babies are more likely to have cord complications because I think a genetic style of cord is not a strong as others and I may make that one. But the twice weekly monitoring will help track Trey's cord performance.

I feel that I have to exercise faith now. If the Creator of life told me "he will live" I have to go with that. It helps calm me down when the baby's not moving at night, or like yesterday, when he was NOT moving at 1:00pm like usual. People think faith is a crutch - ha! Faith is HARD work! It's hard to believe something that goes against your logic! It's hard to trust and act on it. Certainly it tests me.

So this week two of my friends had healthy babys and two others lost babies. It's been hard. Lots of emotions going around. My poor husband doesn't want to hear any more about it. :)

Oh! And in the two ultrasound I've had since the last post - Trey's blood levels have hardly raised in his brain. Translation - he's still at the "high end of normal" and not anemic. My husband and I honestly are surprised! His levels have gone up by at least 10 every time. These last two times, no more than about 6. It's been a wonderful surprise that he's hangin on to the normal. :)