Jun 12, 2010

Tessa Kaytlyn Plumb - our little miracle


It's been a wild ride this week. I think I'll just start from the beginning because I've experienced my own little miracle this week in my daughter, Tessa Kaytlyn, who was born Tuesday morning at 11:17 am. We named her Tessa because I just simply love that name. Classy, not too cutesy for a grown up, not too common, and beautiful. I also thought it fit my other two children's names which are English/Scottish too. Kaytlyn is after our sisters. Shari KAY, KATIE Marcia, and Krista LYNN. We just combined parts of their names, which is why we spell it the way we do also.
Here I am on Ainsley's birthday with only two days to go! I am so excited and ready and apprehensive.... The first blessing is that both sets of Grandparents were able to be here this week to take care of the kids and switch off being with us in the hospital. My kids have had a wonderful time with them, my house has been cleaned spotless, and I don't have to worry about details at home in such a stressful week for me.

I've never felt so excited or so apprehensive when having my children. I arrived at the Community hospital as scheduled on Tuesday morning, and really had my nerves under control until they wheeled me into the OR and were prepping me for surgery. All of a sudden, I just felt so nervous, but the hospital staff and OR team was probably the kindest and nicest team I have ever experienced. In fact, I didn't meet a doctor, nurse, or staff member at the hospital who wasn't completely wonderful, kind and attentive - the whole week! It was definately the best birth experience at a hospital out of the three. All of them made me feel so at ease - even when I started barfing on the OR table from the anethesia. Luckily, they were able to get that under control. They had already started the surgery a few seconds before they let Tone in, and within 10 minutes, we heard a little cry. They stopped for a minute to unwrap the cord, then we heard a larger cry and some choking while they suctioned out her mouth. I got a brief glimpse of something pink, but they didn't stop to show her to us. They wisked her out as fast as they could with a whole team of specialists following behind. Finally, they beckoned through the window for Tone to come, and I waited and wondered. Within ten minutes they were back with her to show her to me all wrapped up. They let me see her and touch her face for a second and assured me she was doing great and the tumor was small. Then they left again with her to check her out further. I said goodbye to her and was wheeled into recovery for an hour to wait and wonder some more.
Tessa was looked at by a whole team and they discovered that she was doing wonderful, the tumor wasn't harming her in any way, and they let the family into the NICU to check her out. The kids and all the grandparents got to meet her and they let them stay with her while she was awake for about an hour and a half. Tessa weighed 7 lbs 4 oz, with the tumor, and was 17 inches long. A little peanut for only being a week early.I heard reports from family the whole day who got to see her, but I didn't get to meet her until about 10 am the next day because I had to be off my IV first and able to get up. This is a picture of me meeting her for the first time and holding her. I have never been so delighted in my life!The neonatologist told me to treat her like any other baby. I couldn't hurt the tumor and I could hold her and change her and nurse her as normal. He also said that we were incredibly lucky. Tessa got an MRI, ultrasound and CAT scan on it, and they discovered it was completely fluid filled, not attached to any organs or muscle, and very small - like a small water balloon about 2.5 inches across. This is not the case most of the time with these tumors, and it's usually a much more serious case. He said usually it grows to be about the size of the baby's head and has veins and solid components in it, and can affect the baby internally. With so many people praying for her in the last few weeks, we don't believe it was luck. We believe we experienced our own little miracle. It really didn't grow from the time it was discovered at 19 weeks gestation to the time she was born. It just stopped. A miracle I believe.
After monitoring her for a whole day, they decided that Tessa was doing so well, that she could get out of the NICU and room with me. That was a wonderful day. I held her all afternoon long, and she was doing great nursing. That night though, I had a really scary episode with her in my room all by myself. The drugs they put me on were too strong and they actually caused me to hallucinate. I was off the morphine drip and was on Oxicodon, and it really messed with me. Tessa was not sleeping well in her bassinet, and I hadn't had a good night's sleep in a few days. On the drug, I thought nurses were in the room who weren't there, and people were going in and out and doing strange scary things and I know now they weren't actually there. I couldn't wake up or talk to them, and I couldn't tell what was real and what wasn't. I finally roused myself, and I was so afraid to fall back asleep. I put Tessa on my stomach to calm her down, and everytime I started to fall asleep I would pull myself out of it in sheer panic. She quickly calmed down on my chest and eventually I felt the drug loosen it's hold and I finally fell asleep too. During the night though, she started having some choking on mucus episodes. She would have to be suctioned out to start breathing again. It happened twice luckily with the nurses present when they changed her diaper. I am so glad it didn't happen while I was hallucinating and having trouble telling reality from dreams. God took care of us, since for most of that scary time she was on her back in the bassinet, and being on her back was what was causing the choking. The next day, we spent a lot of time holding her in my room and the kids took turns holding her and it was a great day. There was even some talk of sending her home for a day before her surgery. That day was short lived.Her choking problems started to be more frequent and scary. It happened any time you laid her on her back (which she hated). The descision was made for her to stay in the nursery where I could go feed her, but she would be on an oxygen monitor. It was hard to let her go back, but her choking freaked me out! The doctor believed it was related to reflux when I started feeding her and that she needed more maturity.

Also, our insurance, Kaiser, decided to put off her surgery and they didn't schedule the surgery for Friday as initially planned. Tessa was supposed to be transported to Children's Hospital on Thursday for a surgery on Friday. We had so many conflicting pieces of news from different nurses, doctors and liasons about when it was going to be. When Kaiser said they were putting it off for two weeks, we got extremely angry and Tone started getting really firm and saying that was unacceptable and calling anyone he thought could help. We had a wonderful liason in the hospital named Abby and another one named Faith who were able to get Kaiser to schedule the surgery as planned for Friday morning and a transport team to take her there in an amublance. Kaiser wanted us to take her home and then take her ourselves (cheaper for them of course), but we were too scared to take her home because of her choking. That was a stressful afternoon with all the phone calls being made and conflicting information about when the surgery was going to happen. No one seemed to know or have an answer.

The night before Tessa's surgery, I went down and gave her a feeding at around 12am and sang to her a long time. I knew the transport team was coming for her at 7am, and I wasn't going to be able to nurse her again for a few days because of her surgery. I walked back to my room and for the first time I fell apart sobbing. I had been doing well until then, but I fell asleep completely exhausted and emotionally spent. I woke up around 3:30am to go give her a last feeding, and she wasn't there in the nursery when I went to check on her. I was told she had been moved back to the NICU from the nursery because she had had a bad choking episode in front of the head doctor, had turned blue and was immediately whisked back to the NICU under her direction. So I went up to the NICU to visit her, and it was hard to keep from sobbing again. I think lack of sleep and hormones were definately kicking in at this point. I vaguely remember someone waking me up at 1am, saying that because of her choking, she may not get transported the next day, but I thought it was just another nurse who had been giving me wrong information all day. Turns out, that was the head doctor. So again I panicked wondering if we were again losing her transport and that her surgery wouldn't get done like it was supposed to that morning. Luckily, with no more feedings during the night, she didn't choke again, and they let her go in the morning as planned. We found out as we were signing the discharge papers for her to go that we had come very close to losing the transport due to other reasons as well. We thank God for that transport that happened on time though everything seemed to be conspiring against it. We watched the transport team load her up, and then I was immediately discharged as well.

Hunter had his kindgarten graduation that morning and we were told to not follow the ambulance because we wouldn't be allowed to see her for a couple hours anyways while they settled her into the NICU and prepped her for surgery. So we went straight to see Hunter get his award at school and "graduate" kindergarten. He was so excited that I was there and I am so happy that I made it! I'm proud of my little guy and his Presidents Award for a perfect report card. From his school, we went straight back to Children's Hospital where we found her in a beautiful, state-of-the-art NICU with her own round-the-clock nurse. She was sleeping, prepped and happy.

Dr. Hodge, her surgeon, met with us briefly, along with her anesthesiologist. They didn't forsee any problems and thought that it would be an easy surgery. He thought that there was enough extra skin to close the gap, and that it wouldn't affect anything internally, though he wasn't sure about the muscle on the left side. Dr. Hodge is one of the central valley's top neonatal surgeons, who had operated on these tumors before. Being that they are extremely rare, this gave us a lot of confidence. I had been reassured by everyone in the medical field I came across, that if he was doing the surgery, then there would be no problems. Dr. Hodge had said it "would be pretty routine for him", and the neonatologist at Community Hospital, where she was born, remarked that only Dr. Hodge could say that.

She went into surgery around 3:30 and came out around 5pm. Only an hour and a half. It was a success! No muscles, organs, or nerves were compromised. We checked out her scar and were very impressed. Dr. Hodge gave her a very straight, neat booty crack where there had been only a tumor before. In fact, her booty is going to look quite normal because of the exceptional job he did. Again, God took care of our little girl in providing an exceptional surgeon for her.

This morning I went to Hunter's last t-ball game before going over to the hospital. It's hard to be a split parent. Feeling that by supporting one child, you are neglecting the other. I was afraid that I wasn't going to be there early enough to pump and give her my milk, but I also didn't want to miss Hunter's last game and desert him. I realize that if they fed her formula that wouldn't have made me a bad mother, but that didn't stop me from feeling a bit guilty.

Today, Tessa is doing quite well, taking a bottle very well, pooping (I know, but they have to do it before leaving the NICU), and seems to be undisturbed from the surgery. She's slept a lot, but hasn't cried or complained at all. She's just a happy, peaceful little girl. We have to prop her up over her surgery scar, so she's not resting on it, to feed her and she eats just fine this way.

Most of the time she just sleeps and looks beautiful. She loves having her head stroked and being on her side or tummy. If you talk to her, she quits wiggling and gets really peaceful. She loves that. She is really ticklish, so she cries loudly when the stickers from the probes (which don't hurt her at all) get removed. The funny thing is, she tolerates getting poked from the IV and pricks to the heal. She just doesn't like being tickled! More updates to follow soon I am sure. I hope to report that Tessa will be home and happy in a couple of days. She appears to be doing really well and healing nicely. Here we are smiling for you in our own little miracle story. God has been wonderful in watching out for Tessa every step of the way and letting her thrive!
Thank you all so much for your prayers. I know this has been a long post, but I wanted to let you in on all the details that has shown that God has been in every little tiny part and has been watching out for our little girl in an amazing way! She's amazing and we thank God for our precious daughter He has blessed us with!

7 comments:

  1. What a beautiful gift you have!! Can't wait to meet her!!!

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  2. She is such a beautiful miracle baby & love her name. This story breaks my heart & all you had to endure. Praying that the choking spells have subsided. My daughter had really bad reflux and ended up sleeping in a swing for 8 weeks. She actually loved her swing.
    Can't wait to see more pictures of her at home.

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  3. Congratulations and God bless. You have certainly been on a journey. I pray that she continues to do beautifully and that the transition from a 4 person family to a 5 person family is a smooth and happy one.

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  4. Praise the Lord! Thanks for sharing the whole amazing story! Can't wait to meet her someday...

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  5. Thank you for sharing your story, little Tessa truly is a miracle baby.

    Mary, Mom to Maggie, 5 year old SCT survivor adopted from China.

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  6. I am SO glad that all has ended so well for all of you!! Though how do we ever doubt such an amazing God? :) I love you each SOOOO much and will always hold you in my heart and prayers. Thanks for the whole story.. I'm now a sobbing mess. You are so strong Jenny and an amazing example of faith.
    All My Love,
    Kailyn

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  7. Congratulations! She is a beautiful girl and I'm so glad to hear that everything ended up working out well. We'll continue to pray for you guys and that her choking subsides.

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