The First Two Weeks Part ONE

Things are settling down, now that Jett is home and healthy and the holidays and craze that come with them have come and gone. Finally, I am getting around to writing about our INSANE experience!

How it all began

As you know, my pregnancy was high risk with the membrane and all, and so from July-August I saw the Perinatologist every two weeks, and then every week around September. Our stress and worry had eased quite a bit with each visit being uneventful (meaning no further complications with the baby). And we were begining to make preparations for scheduling a c-section.

- as a side note, I had a lot of anxiety over whether a c-section was really necessary, and seriously did not want to have one. There was a lot of medical curiosity involved (from doctor's perspectives) and I wondered if they were pushing the c-section so they could have the thrill of seeing the membrane and have a better "view". I talked to the doctor's about it a lot, and the perinatologist explained things really well, and told me I had the option not to do a c-section, that it very well may not be necessary, but that we wouldn't know until after delivery. Anyways, I never would have been able to forgive myself if I chose not to do the c-section and something happened... like strangulation by the membrane. Not.worth.it. even though c-sections really do suck)

The Appointment

So October 29th comes and I go to my 37week appointment at 1:30pm. The tech starts scanning and what do you know.... No fluid! Dr. Kramer (Perinatologist) comes in and says in his awesomest South African accent "Ashley, I know when you're having that baby! Today! It's over. This has been the longest pregnancy ever! I can't believe it, congratulations. Go to the hospital." I asked if I could go home first, and he said absolutely not. So.... I went home. (HELLO! I was not about to have a baby without my camera! Plus Mason was in the middle of a medical test that he needed a final dose of Activated Charcoal in an hour and there was no way I was going to repeat that test... have you ever tried to give a 20month old activated charcoal? It is not fun. Or pretty. It's a mess. We strip him down to his diap. And he gets covered in it's black nastiness. And so do I. And so does Kevin. And so does the kitchen. And don't get me started about the bucket of poo we'd been collecting...)

I met Kevin at home, and grabbed a few things for the hospital, plus the kid's Halloween costumes for the Trunk-or Treat party that night, and went to our friend's house to tell the kids their brother was coming that night! Yay!

Delivery

Okay, fast forward to the hospital (I can't believe I've written this much and still haven't gotten to his birth! Have I said this will be long? Cause this will be long!) I had an awesome nurse who we told our hesitations of naming our baby Jett. She said she named her kids all plain Jane names until her last one. They named him Bucky.




The OR experience was so strange. Being on the table, tube in nose, cap on head... can't feel a thing, except you can (you know what I mean fellow c-sectioners). And then the Anestisologist tells Kevin to start shooting pictures, and next thing I know I hear the cry of my precious child! A HUGE sense of relief comes over me, as they declare him as "perfect." He had escaped the dangers of the membrane, and had all his fingers and toes. I caught a few glimpses of him, but it felt like forever before they finally wrapped him up and brought him around were I could see him better. And then they took him to the nursery... and everything became a blur for the next 24 hours ish.

After Delivery

I was loopy. It took over 3 hours before I could wiggle my toes (they told me one hour!) and I was throwing up every 10 minutes, which also happened to be how often they would come push on my stomach. And they asked if I wanted to try to nurse my baby... I said no. Kevin gave him a bottle in the nursery. Let me tell you, that's how miserable I was. If you'd asked me before I would have said "I will most definitely nurse my baby. There is NO WAY he will have a bottle. I will nurse. It doesn't matter how terrrible I feel, I will suck it up and I WILL NURSE HIM!" But I didn't say that. I didn't even hesitate to say "no." I knew I couldn't do it, and I didn't want my baby to be hungry, so I let him have a bottle.

At some point I was moved to my room. And nurses talked to me. And doctors talked. And I fell asleep. And the nurse brought the baby (remember, he still doesn't have a name) in. And told me he was having a tough time keeping his temperature. And I tried to nurse him. He wouldn't latch. And so I just held him. For a few minutes. And I fell asleep again. And the nurse took him back to the nursery. And I snoozed on.

Jett Goes to the NICU
(click images to see in larger size)





It was the middle of the night by now, and the nurse came in several times to check on me and tell me I wasn't breathing very well (I did not remember this detail until a few nights later when she reminded me of it.) Apparently she was hovering over me, wondering if I was going to take another breath. I was only taking about 7 or 8 every minute. She concluded I was okay, since I would carry on a conversation with her if she talked to me. I don't know what we talked about! Then she came in again, and told me the doctor would be in to talk to us, but that she wanted me to know our baby was in the NICU because he wasn't keeping his temperature and his left leg was a little swollen.

Next thing I know, the lights in our room are on (SOOOO BRIGHT for drugged up eyes!) and the Neonatologist is in there telling us something about our baby... in the NICU... swollen... cold... skin... I honestly can't remember most of what she said. I just caught the jist that he was "okay" and I kep thinking "I have to close my eyes. I hope she doesn't think I'm a bad mom, or that I don't care about my baby because I have my eyes closed. I know it looks like I'm sleeping, but I'm not. I'm just...my eyes are just closed."

Kevin went the next morning to the NICU by himself. He cried.

It wasn't until after 10am that I finally made it to the NICU. Kevin wheeled me there, and I closed my eyes. And asked for a bin. And stood by my baby for about 2 minutes. And sat back down. The Neonatologist (a different one) Dr. Miller, came to talk to us. She pointed out our baby's skin. The redness, the peeling, the cracks. And diagnosed him with Ichthyosis. And the nurse handed me a box of tissues. And I cried. And I felt sick again. And then we left. And I puked on the ride back to my room.

I made it up to the NICU several more times that day, and tried unsuccessfully to nurse him. He would take a bottle though. His stomach started to become distended, but x-rays showed nothing. Just air. By now he had a tube in is nose, and the nurses would periodically suck air out of his belly.

Tage and Mason came to meet their new brother, I didn't go with them, but Kevin took them in individually to see him. Mason kept pointing to his tube and said "Bebe...owie..."


When Sunday came, I had a melt down. I bawled my eyes out to Kevin that our baby was in the NICU and I couldn't nurse him, he wasn't sleeping next to me, we weren't going to be taking him home on Monday, and I didn't even know what to call him. He STILL didn't have a name! And that's when we decided on Jett Thomas.


Sunday and Monday were pretty much the same health wise for Jett. He was lubed every few hours with globs of Aquaphor, the doctors were still concerned about his risk of infection from his skin being so raw, he wasn't nursing, and he wasn't super interested in a bottle but he could be convinced to take it. His belly was still distended but it was still believed he was just swallowing a lot of air. Monday he wasn't pooping very well, so he was given a suppository, and that worked like a charm.


Jett's Health Becomes Critical



And then Tuesday came. Oh, Tuesday. Kevin went to do a delivery in the morning for the courier he works for. He would be back at 11:30am. I was going to be discharged that day. Jett was not. I was struggling with that. I didn't want to go home without him. I walked over to the NICU for his 9am feeding. Once again, he wouldn't latch. I tried to give him a bottle. He wouldn't take it. So, we fed it through his tube. I went back to my room, pumped, and then returned again at 11am, to try to nurse him yet again.


When I walked in, Dr. Miller came to talk to me immediately. Little did I know she was about to hit me with a ton of bricks. Jett had not pooped in over 12 hours. He'd had 2 suppositories. Neither of them had come out. His stomach was extremely distended. Dr. Miller suspected Jett had Hirschsprung's Disease, but the only way it can be definitevly diagnosed is by a rectal biopsy, which must be done by Pediatric Surgeons. The hospital we were at doesn't have Ped. Surges. They were calling an Emergency Transport Team to take Jett to the University of Maryland Med Center in Baltimore.


I was trying to understand it all, and take it all in, and I started to cry. Then the nurse handed me a box of tissues. And then I really cried. They needed to change Jett's tube to a bigger size and do a few other things to prep him for his departure, and told me to they would phone my room when they were finished. I went back and called Kevin... he was in the parking lot of the hospital. I told him. He came into my room and we both cried. Hard.


Jett Takes a Trip

When we were told we could come back to be by Jett, we did. His new, bigger tube was used to suction anything and everything out of his stomach. His stomach was so distended, he was at risk of rupturing his colon. We sat next to him for about an hour, he moaned a lot and looked extremely uncomfortable. We wanted the team to be there immediately, so that Jett could get the help he needed.


It was interesting... being there. In the NICU, next to Jett. Up until then, Jett seemed very healthy, other than his skin and his distended belly they wanted to keep an eye on. The other babies in the NICU were so tiny, so fragile. Jett was the biggest baby there, weighing in at 7lbs 13oz! I had felt like we were in a better position than other parents there. And then, suddenly, we were the center of attention. Jett had the most critical needs at that moment. Other parents were looking at us with sorry eyes, glad they weren't in our shoes.


And then, I heard the transport team come in and I cried...a lot. They put Jett in a little isolette, talked to the doctor, talked to us, got his medical records, and then left. We walked behind them as we paraded through down the halls, through the MAIN LOBBY, and down past the ER and then outside to where the ambulance was waiting. And it was awful. I could feel everyone watching. I could hear people talk, say "ohhh" and " (gasp) look at that little baby" a few nurses gently touched my shoulder as we walked by and said "good luck". I know everyone genuinely felt sorry for us, but it was really a weird feeling to have such a private and emotional moment be so public and open for all to see.


Just before the EMT closed the doors to the ambulance, one of them stuck his head out and reassuringly said "we'll see you there." and then Kevin and I watched them drive away, takin our hearts with them. And we bawled. And Kevin held me. We then walked back into the hospital, back through the main lobby... this time without a baby. It was awful.



To be continued....

My Little One

Welcome Home Jett!

We are THRILLED that we were able to bring Jett home Friday night. Such a blessing to have our family all together! Jett is doing wonderfully, he is such a strong little boy!

Newest Addition!

Born October 29th, 2010 at 7pm! 7lbs. 13oz. After a few days, much turmoil and agony on the parents part, we finally decided to name him Jett Thomas Harrison. I have liked the name Jett for quite a long time now, but hesitated because ONE: a good friend recently named her baby Jett and as it is an uncommon name I wasn't sure if I should do it as well, although the two boys are very likely to never even meet. When I was early in my pregnancy and didn't know the gender yet, this friend had her baby and when I saw she named him Jett, I actually kind of hoped that our baby would be a girl so I wouldn't have this dilemma :) Reason number TWO: a lot of people had really negative reactions when we told them Jett was on our list of names. Funny though, ever since we officially named him Jett, everyone LOVES his name!

We feel so blessed to have Jett, and can not wait to bring him home. He has been in the NICU, and on Tuesday, Nov. 2nd, he was transported by and emergency transport team to Baltimore to the University of Maryland Med Center. He has Hirschsprung Disease, as well as Ichthyosis. The Ichthyosis is more towards the milder version, and has improved since birth, as he has been slathered every few hours with Aquaphor to keep his skin hydrated. It seems we will be able to control this aspect of his health quite well.

Hirschsprung Disease, on the other hand will ultimately be okay, but he requires surgery which will take place on Monday. Part of his colon will be removed and the good part will be reattached. Last Tuesday when he was transported to Baltimore his belly was so huge from not being able to pass stool (or two suppositories) that he was at risk or rupturing his colon. He was very fussy and looked so uncomfortable. Since then, the doctors have been cleaning out his colon and his belly has gone down more than 5cm in girth.

A long time ago this diagnosis was lethal. We feel very blessed that there is a procedure now to fix this and that he is expected to live a normal, healthy life. We thank our Heavenly Father for the opportunity to live at this time when there is so much medical knowledge. All of the nurses and doctors have been absolutely fabulous!

Every night when we leave the hospital, I feel like I am forgetting something, and I look around at what we are carrying, and know we have all our bags, jackets, etc. and then realize the feeling must be that we don't have our baby. We are expecting to be able to bring him home next weekend. We.Can't.Wait. Please keep him in your prayers tomorrow!

P.S. In the picture, we have crafted his hair into a faux hawk. It is always so greasy from the ointment, we like to style it :) Also, he doesn't have the tube in his nose anymore... it is now in his mouth, going down to his belly, to suck out anything and everything in his belly (mostly just gastric juices now, he hasn't eaten since Tuesday morning and is on IV's.) The bandage on his hand is for his IV.

Last Friday

See the membrane? It covers the baby like saran wrap.

We went last week to the Perinatologist again, and it was an encouraging visit. The baby still has no abnormalities and is growing good. We feel like we understand a little better what is going on. We are still nervous and can.not.wait. until our next appointment, but feel a little less stressed. We are confident that we will be bringing our baby home, and that he will be in overall good health. We do feel very blessed that our situation is not worse, and that the outcome looks very good. Thanks for everyone's prayers! We love you all!

Mom Wins!

Tage said a few things today that surprised me. First, (my favorite) when she came in the kitchen for lunch, she was holding a Book of Mormon, she handed it to me and said "Mom, we haven't read the Book of Mormon yet today. Will you read it to me?" And when I read it, she would even make comments about certain words and go off into tangents about that word in a separate gospel-oriented topics, such as baptism. It was great lunch conversation. She seemed so focused!

Then at dinner, she was done eating, and I made myself a salad and was about to start eating it. She pulled a chair up to me, and said "Mom, I want to sit next to you, and will you share your lettuce with me?" I began sharing it, and then decided to give her a plate of her own. She ate it all, and then said "Mom, will you please get me some more lettuce?" I was SHOCKED! She'll usually eat one or two pieces of lettuce, just so she can make horse noises, but never a plate full, and never asking for more! Yay!

Besides those two incidents that really stuck out, the day was really great with the kids. They were both so fun today and got along great with each other. It was a great fun-filled day for all! (Except Kevin, who has been at class all day, and won't be home until 10:30 tonight. Poor guy!)

P.S. Thanks everyone for your kind words and prayers for our family and baby!

Because I Can't Tell Anyone Else....

What I write here today is only because I know no one that I see on a regular, weekly basis reads our blog. I am not ready for people here to know, I don't want to see them at church or other social functions and get the "pity" look, or answer questions, or comments. But I need to get it out. My friend left me a voicemail last week, after my ultrasound, to see what we are having (IT'S A BOY!!!) and also, asked if it had all it's fingers and toes. I have avoided calling her back.

Rewind. Last week at my ultrasound the tech found an unusual membrane lying on top of the baby. I was referred to a Perinatologist, who wanted to see me immediately, despite the fact that their schedule was already booked, double booked, and even triple booked. We waited a long time, but were not very nervous about the appointment. When the doctor saw us, he did another ultrasound and told us that the membrane was from the amniotic sac, which has partially ruptured. He said it is very serious, and that I am considered extremely high risk. Actually not me, but the baby.

The baby is currently OKAY, with no known complications. But that can all change. The risk is that the membrane will tear more, causing "bands" or "rings" that can wrap around the baby's limbs, cutting off circulation and causing self amputation, or limbs may need to be amputated after birth. These bands can also restrict growth, wrap around the umbilical cord (obviously NOT good), restrict growth of other organs, and cause facial deformaties which can restrict growth of the brain and cause mental disabilities.

The doctor told us he this the outlook is good facially and mentally, because he did not see any current deformation, and the brain looked normal, and the skull has already formed, providing more protection. And again, there are no current (as of Friday, July 2nd) visible deformaties or loss of limb. But there is no guarentee that it will stay that way. We can only hope and pray that all will continue to go well with the baby's growth and development. Apparently my condition is pretty rare, and the specialist doctor has only seen 4 or 5 cases in his career thus far. It's really a weird feeling being "high risk" and "rare." There is nothing we can do to prevent it, and there is nothing we did that brought this condition on. It just "happened."

Kevin and his Dad gave me a priesthood blessing, and Kevin's Dad also gave him one. Our families also fasted for us this past Sunday. We feel strengthened, and trust in the Lord, but are obviously very nervous. It is going to be a loooonnnngggg 20weeks. That is if I make it that far. We have absolutely no idea what to expect as far as delivery goes, although I doubt I'll carry until 40 weeks and be allowed to go into labor on my own. The doctor wants a team of specialists present for delivery, to cover every scope of what might possibly happen. One of his examples was an ENT (ear, nose and throat) doctor incase the baby swallows some of the membrane and cannot breathe. We have so many questions for our next visit, although we know we won't get any real, concrete answers because of the unpredictability of our situation. Really, we have no idea what to expect in these upcoming weeks. Please pray for us!

You can see in the picture below the membrane, lying over top of the baby, kind of enveloping it.