Landon Update

Today Landon is 16 days old or 33 weeks gestation.

My Aunt Shelly called him Mr. Miracle. One of his nurses calls him Rock Star. He continues to impress all who are involved in his care. He is doing very well. We have reached a point where we have relaxed a bit. We can actually realistically look forward to the day we get to bring our baby boy home.

- On Monday (10 days old) he went off the oscillator and onto a more traditional vent. He was only on the ventilator for a couple days. On Thursday (13 days old) they took him completely off the ventilator. He now has a nasal cannula that delivers oxygen to him. He is doing well breathing without the machine. His poor little throat has been really sore due to having that tube in it for 2 weeks. He is able to cry now. His cry sounds hoarse because his throat is so sore. It is wonderful to hear him make noise! It was so terrible before when he had his tube in to watch him get upset and cry but no noise would come out.

- He is completely off all pain medication.

- He is receiving breast milk through a feeding tube (the tube goes into his belly through his mouth). Today they bumped up the feedings to 3 ml every 3 hours. He was receiving these feedings a few days ago but they had to stop them for a couple days because he was producing green bile which told the doctors his intestines were not quite ready for the milk. He seems to be handling it great now. Getting his system used to my milk is the first step in him learning to feed. I am looking forward to begin breast feeding him! This could happen in the next few days! The nurses are so great and allow Addi to actually feed him! She loves it and it makes her feel very special! He has pulled out his feeding tube, once that I know of! He is sucking on a binky regularly. He is a Powell and I think learning how to eat will be no problem for him!

- His umbilical IVs were removed and he now has a PIC line, an IV they can leave in for up to 3 months if they need to. This IV starts in his leg and the end of the catheter rests right above his heart. The only thing he receives through this IV is his nutrient and fat mixture. He continue to receive nutrients this way until he has mastered feeding. This is the only catheter he has! The other tubes and wires you see in pictures are just monitors, monitoring his heart rate and oxygen level.

- Today he weighed 4 lbs. 4 oz. He is now just a smidgen over 17 inches long.

- He graduated from living on a flat warmer to a isolete, or a more traditional incubator.

- Now that all of that fluid is gone is has a bunch of loose skin on his belly and under his chin!

- We've been having very boring days with very little updates. We love these days! No excitement in the NICU is wonderful.

- Dylan and I are able to hold him pretty much as often as we like. He is more portable without his breathing tube. He enjoys being held as much as we enjoy holding him. Last night he was wide, wide awake while Dylan was holding him. He was looking all around with big wide eyes! Of course this is the time we don't bring a camera!

Dylan holding his son for the first time. 7/29/11 - 14 days old

Landon trying to look up at his daddy.

I told Dylan, that when Landon heard the nurses talk about "Kangaroo Care" (holding baby skin to skin, to promote bonding etc.) he didn't think he would actually be held by a kangaroo! At least I think I am hilarious!!

The second time cuddling with Landon. 7/26/11 - 11 days old
Breathing Tube Free! 7/29/11 - 14 days old
7/29/11 - 2 weeks old
Addi saying goodnight to her "sweet baby brother."

Proud big sister helping Landon with his binky. 7/29/11

It is nearly impossible to take my eyes off of him. 7/29/11 - 2 weeks old
All cozy in his new incubator.

A Mamma's Prayer Answered

For several, several weeks we wondered if our baby would be born alive. When we rushed to Missoula to deliver him we wondered if he would survive delivery. After delivery we were told that his condition was so severe he had very little chance of surviving, period.

Last night when I held my son for the first time I was finally able to exhale. For so long I had been holding my breath waiting for the moment that I could breath again. For the longest time I wasn't sure I would ever get to have that moment.

It was amazing. He is so beautiful. Laying on his bed he looks and feels so fragile. In my arms he felt warm and well -- he felt like a baby, not a sick, premature baby. He snuggled right in against my chest. His tiny hands curled around my fingers. When a loud noise startled him he would grab onto my fingers tighter and clench my hand closer to his body. He was in a deep sleep for most of the two hours that I held him. A few times he would blink open his eyes. I was able to tell him that, "Mamma has you." And then he would close his eyes again. Landon seemed to enjoy it. His monitors told us he tolerated it very well. Never did his heart rate go up or his oxygen levels drop. He never flailed his arms or cried. It took two nurses to move him and all his wires into my arms and when they put him back into his bed he remained relaxed and soon went back to sleep.

Once I had him in my arms it was hard giving him back to the care of his nurse and even harder saying goodnight to him and leaving him there. One small Landon baby step closer to the day we take him home.

Its been 11 days. In the world 11 days in nothing. In NICU time 11 days is an eternity. It feels less like 11 individual days and more like one long day that will never end. Time stands still in the NICU. With Landon in my arms 2 hours flew by!

It was a huge moment. A moment I will never forget. I will never forget how thankful I felt, how much love I felt, and how the achy feeling in my body, for a little while, wasn't there.

Landon, 11 days old

Landon In Pictures

8 days old

4 days old

5 days old

Under the blue billi-lights, 7 days old

Landon - 5 days old

Five whole days have passed since our sweet boy Landon was born. It has been impossible at times, but the improvements our little man has made have been incredible. We can say that he is doing well. Every day he gets a little better and a little less swollen.

- Today they removed his chest drain that was draining fluid from the chest cavity. This afternoon his chest x-ray was clear and looked great.

- Yesterday they removed his urine catheter. He is creating a high volume of pee-pee and has starting pooping. This is so wonderful as his body is working to extract all that fluid on its own. I get to change his diapers when I am there. I was so touched to be able to do this. Simple mommy instincts have had to be suppressed and being able to provide this simple thing for my son was incredible. I broke down and cried the first time.

-We are swabbing his mouth with my breast milk to slowly introduce it to his system. We use a milk soak Q-tip and he has starting sucking on it like a lollipop. He seems to enjoy it and it will calm him down if he is agitated.

-His ductus in his heart closed naturally, as it does eventually in most newborns. There was some confusion and people were getting information that he was needing heart surgery to close a hole in his heart. This was never the case. His heart is doing very well and functioning normally.

-Last night we saw a drop in his billirubin levels. They put two more billi-lights on him to help bring the levels down. This afternoon the level did go down a tiny amount. If we don't see an improvement he may need an exchange transfusion to get those broken down cells out of his system.

-He has been weaned off all of his blood pressure meds. His pain meds have been significantly decreased. This has made him more active, responsive and awake. He often stretches out his arms and legs and will stay awake for longer periods of time.

-Almost everyday they wean him a little bit more off the ventilator. I don't fully understand this but they turn something down often! He tries to grasp his breathing tubes. The nurse said at his age they are aware of the tube and will fight it at times. Our Landon just tries to take his out!

-He has been taking breaths on his own. So much so that they made an adjustment to allow him to relax a bit and let the machine do the work for him.

-He looks so much different than 5 short days ago. He had so much swelling in his head we couldn't tell where the swelling ended and where Landon began. Now he is able to open both eyes. He will follow voices when we talk to him. We can see his chin, cheeks, neck and eyebrows. We can even see his teeny tiny eyelashes and folds in his eyelids. His facial features are becoming much more defined and match his little nose and lips. His arms are no longer swollen and they match his legs now, long and skinny. His has his mammas long fingers and toes. His covered in white fuzzy hair. His chest and abdomen have lost a lot of fluid as well. He actually has some loose skin under his armpits. He gets more and more proportional every day. He looks different everyday.

-They estimate without the fluid he weighs about 3 lbs, 12 oz or so.

-He gets less agitated when his nurses move, touch or change things on him. He tolerates touch, light and noise a little better. It used to skyrocket his heart rate and he would flail his arms and legs. This happens less often now.

Our little glow worm, under the billi-lights

Landon, 4 days old

Dylan, Addi and I are doing ok. It has not been easy. But we are taking it one day at a time. The NICU nurses and doctors are amazing. We have full faith that he is the best hands possible. They can't believe how well he is doing. We appreciate the continued support, thoughts, prayers and messages.

Physically, I am doing pretty great. I had my incision staples out yesterday. I never had to be on any prescribed narcotics or other pain meds. Ibuprofen and Tylenol worked great knocking out the pain. I feel like I am healing pretty quickly. Emotionally, I ache. I never knew these feelings were possible. I don't think I can even begin to explain it. I physically hurt for him. I hurt when I am with him and hurt differently when I am not...

We are still trying to figure out logistics as far as our sweet boy being in Missoula and the rest of our life being in Helena. Dylan had to return to Helena a couple days this week for work. He gets back to Missoula tomorrow. I can't imagine how hard it has been on him not being here. Of course he just does it, that is Dylan. Doing what has to be done to take care of his family. I am not sure what will happen with my job and insurance. It will all come together. There is just so much to think about.

Landon Wayne is Born

Thursday July 14th - Made the decision to deliver.

Dylan, Addi and I went to Great Falls for our weekly checkup on Landon. The ultrasound revealed that he was no longer improving but getting worse. We found new fluid in his chest cavity, the level of amniotic fluid increased a lot and we saw right-side heart failure. With these new findings Dr. Key made the call that we needed to deliver within the next couple days. We decided to come to Missoula to give birth. With a long stay in the NICU in his future likely, we wanted to be in Missoula surrounded by our family and friends.

Dr. Key called Dr. Utter, a perinatologist in Missoula and they talked for a long time. Ronnie got our medical records together and we headed to Helena. We packed quickly and headed for Missoula. We went straight to Community Hospital. Papa met us there and picked up Addi. Within 15 minutes of being in the hospital Dr. Utter was doing an ultrasound. He came to the same conclusions as Dr. Key and agreed that delivery of our little man was the best decision.

I was admitted to the hospital and throughout the night they monitored Landon's heart rate. They gave me more steroids to boost Landon's lung development.

Friday July 15th - Landon's Birth Day

First thing in the morning my wonderful nurse, Laurie, started prepping me for c-section. By 9 am I hugged and kissed Dylan, Emily, Jeff, Deaette, Mom and Jaci and walked into the OR. It was the most terrifying place I had ever been. I was so scared. Dylan had to wait to come until after I received the spinal block and was all hooked up on the operating table. There were 8 or 9 people buzzing around getting me ready and getting ready for Landon. It felt like I was abducted by aliens. All the bright lights, all the probing. Strangers doing things to all parts of my body. Once the spinal block kicked in, they draped the sheet and cut me open. Within 5 minutes Landon was out. He was born at 9:48 am. They laid him on my legs and drained some fluid from his abdomen. With some of the fluid gone they weighed him, 5 lbs. 6 oz and 17 inches long. He tried to cry after they removed the fluid. He made 4 or 5 little squeaks. Then the intibated him, worked on him for a bit in the OR. They wheeled him past me and I got a slight glimpse of him. I saw his little hand moving. He didn't look as fragile as I was expecting. His head was grotesquely swollen as they said it would be. Then he was gone and we had no idea what was happening to him or how he was doing.

They finished stitching me up and took me to recovery. I saw a friendly face waiting for me, Aleta Miller. She came in to take care of me. I was able to relax a bit having her there.

Dylan went to be with Landon. He was away for a while and came back in tears. It was really hard seeing Landon so vulnerable and covered in tubing. It is unbearable to wrap our minds around what he has to go through in order to survive. It gets very overwhelming very quickly.

Around noon they were able to finally stabilize Landon. Dylan checked on him regularly and got updates. He initially was having issues with his blood. Something about his O2 and CO2 levels and the amount of acid in his blood. His heart was working at only 20 %. He has a machine breathing for him. They put in a chest tube to continually drain fluid from chest cavity.

At around 3:30 pm I got to see him. It was really hard seeing him so fragile. I felt so helpless.

All I could do was hold his little hand and hope that he could sense that I was near. He was heavily sedated and was not moving or responding, although he did grasp my finger.

He made it through his first 24 hours. Throughout the night, Dr. Chaundry and Landon's nurses were constantly making tiny little changes in his fluids, meds ect to get everything right where he was most comfortable.

He has had several chest x-rays and blood drawn. His lungs are very small. Due to all the fluid in his abdomen there wasn't much room for his lungs to grow. His liver on the other hand is huge. His liver was having to work overtime filtering all that extra fluid.

Papa took care of Addison this whole time. I talked to her before bed and she was very upset. Papa knew something was bothering her but he couldn't get it out of her. She broke down on the phone and we learned why she was so upset. She said, "How is Landon feeling? Does he get to come home tomorrow?" When I told her no she broke down. She said, "I am not his big sister." She was very upset that he has to stay in the hospital. She was feeling like she wasn't his big sister unless he was home. Papa had the brilliant idea of letting Addi pick out something special for Addi to give Landon to keep in his bed. Brilliant Papa! Addi came back on Saturday and proudly gave her little brother a little pink bunny to keep near him. It made her feel a lot better. We told her that when Landon sees his little pink bunny he will know that his big sister loves him. Addi also got to see Landon open his eye and she held his hand.

Saturday July 16th - Day One

We had many visitors. It is wonderful having our family and friends here. I am so glad we decided to come to Missoula to have him. It was hard leaving Dr. Key, but I feel it was a good decision. Landon is in wonderful hands in the NICU.

Sara and Ellie got here late Saturday night. Papa, Sara and I went in to see Landon. We were just watching him, talking quietly. He opened one eye. We got a little excited and started talking to him. He was responding to our voices, but we were over stimulating him. When I would talk his little eye would move to my direction and when Papa talked from the other side of the bed his eye moved to Papa's direction. He is very sensitive to noise and we really upset him. He heart rate increased and he starting flailing his arms and legs. The nurse had to pin him down to calm him down. It broke my heart. I couldn't comfort him and talking to him upset him.

Sunday July 17th - Day Two

Landon had an uneventful night. BJ, Landon's day nurse said it was uneventful, not boring, but eventful. Not entirely sure what that means. But he did not get worse. That is all I wait to hear. I let Dylan listen to all the medical jargon and translate to me.

By moving Landon into different positions they are able to use gravity to move the fluid. Some of the fluid had moved off of his forehead and he was able to get both of his eyes open. He even had a neck for a bit! He was a lot more calm this time. He does follow with his eyes. It is very sweet.

He had another echocardiogram this afternoon and his lung function took a huge, positive jump, from 35% to 70%! His lungs also expanded a little.

I was able to give Landon his first taste of breast milk. Using a Q-Tip I swabbed his mouth with breast milk. They will slowly introduce teeny tiny amounts of milk to get his system used to it.

I checked out of the hospital today. I am able to control the pain with Ibuprofen. I am actually feeling quite good. I can't help but feeling guilty. My poor little man is lying on a table, likely in some pain, being probed and poked and scanned and bothered. I would give anything to take his place.

Saying goodbye to Landon and walking out of the hospital without him was the hardest thing I've ever done. I know he is receiving the best care possible. I just wish there was more I could do for him.

Eventually, his body will be start to regulate the fluid. Once his vessels are able to maintain the fluid and keep the fluid inside his vessels he will begin to pull all this extra fluid back into his vessels and pee it out.

Addison Lately - 3 years, 7 months

"Mom, I love you. And I love your heart. And I love the diamond in your eye. All people have diamonds in their eyes, you know!" - Addison 07/11/11

Addi and I were reading a book about frogs. It was explaing that frogs eat insects. I asked Addi if she knew another word that means the same thing as insect. She looked at one of the pictures in the book, counted it's legs, and said, "Well, that's not an insect it only has 3 legs." She just amazes me every day. Duh, she knows an insect is a bug and she also knows that insects have 6 legs and spiders have 8 legs! Mamma was so proud of her!!!

I was saying goodnight to Addi. She said, "Mom, I didn't give the baby a hug and kiss." She kissed and hugged the belly and told the baby goodnight. I said, "You sure are a great big sister." She distorted her face into her disgusted look and said, "But when the baby comes out and he is all bloody I do not want to kiss him!" She loves to look at her baby scrapbook of the pictures when she was seconds old. I assured her that when she sees him he will be all clean and kissable!

Addi and I were visiting Grandma and Grandpa Powell. Addi was in a mood. Her Addi-tude was raging and she was having a difficult time listening. I said something to Deaette about how difficult she can be sometimes. Deaette had her in her arms holding her like a baby and Addi finished my sentence, "Because I have a giant attitude!" Yes, Addi, that is exactly why!!

Update on Little Man - 29 weeks

We had our weekly appointment in Great Falls last Friday.

Little man is holding strong! There was no change in the abdominal fluid, but his heart again, improved. His right-sided tricuspid regurgitation was barley visible....in English...his heart is doing much better!!! My doctor had an emergency at the hospital so he didn't spend much time with me, but he was thrilled with what he saw.

Little man is still very, very active. He gets violent hiccups at least twice per day. When he moves his little head it feels like someone is stabbing my lower spinal cord!

Dr. Key said, " I wish I could say that I don't need to see you every week, but I just like your baby too much!"

We go back to Great Falls this Thursday.

Our Independence Day

I love the Fourth of July. There is something about seeing fighter jets over head, American flags hanging off of fence posts and huge fireworks shows that makes me feel proud. Proud of our freedom and proud of what America is.

We had a nice Fourth of July weekend. We spent Saturday at home and then headed to the Placid Lake Cabin on Sunday morning. It was packed full of family, kids and dogs! Sunday and Monday we were soaking up all the lakeside fun! It was relaxing. I even got some sleep Sunday night!

The belly. 29 weeks.
Great-Grandpa Dave
Addison loves fireworks - from a far distance! The noise from the fireworks at the end of the dock really scared her. She cried when they went off and made daddy cover her ears the entire time.
On the way home we stopped at Trixi's in Ovando for a burger. We pulled into Helena around 10 pm. As we drove from Helena to East Helena we watched a huge firework show. We pulled to the side of the road once in East Helena and watched an amazing finale. Great timing! The rest of the night our little community of East Helena was exploding with fireworks. We were so amazed at the amount of fireworks in this teeny, tiny community.

Update on Little Man - 28 weeks

We had our weekly Great Falls doctor appointment last Friday. We did not see any changes in the amount of fluid in his abdomen, but his heart seems to be doing a little better! The doctor looked at cerebral vessels, umbilical vessels and other seemingly random parts of baby. All seem normal. There is no evidence of anemia in baby, which is important. My cervix, placenta, uterus and amniotic fluid are remaining normal. It is common with babies with non- immune hydrops to see problems in these mommy areas - inflammations, edema, too much fluid etc. There is still edema in his skin around his skull. Dr. Key does not seem concerned with this swelling at this point.

We talked in great depth about birth and what may or may not happen when he is born. I will be having a cesarean section. Little man is under enough stress without adding the stress of vaginal birth. I figured this would happen. I had already prepared for this. I am so sad though. Addi's birth was literally magical and I was looking forward to going through labor and birth again. I am up for whatever gets my little man here - safely.

We are at 29 weeks now. Every week he is able to remain inside of me is a huge blessing. Dr. Key is very optimistic about being at 29 weeks - it makes him smile! When he first saw us, he did not think he would make it this far. Little man will have enough to deal with when he is born, adding the challenges of prematurity only decreases his chances of survival. Every day, every week that his remains strong enough to stay inside of me is a HUGE accomplishment for him. Dr. Key said, "You are the very best incubator for your baby! He is safest right where he is."

Besides his huge, swollen belly, baby is growing normally. He measured right where he should be. We are praying that the fluid isn't limiting growth of his other internal organs - liver, kidneys, lungs. They seem to be "working" and developing normally. Blood flow is normal. We truly won't know until he is born. The ultrasound tech literally captured baby boy peeing! It was so hilarious! We have a picture of the little stream! It sure brought some light to the always stressful ultrasound session.

At this point it is important for me to closely monitor baby's movements. He is very, very active. This is a very good sign. Dr. Key keeps reminding us that sick babies or babies that are in pain will not move. It is also important to be aware of any pre-term labor signs.

We will continue to go to Great Falls every week.

It is so hard to believe that only 3 weeks have passed since we first learned how sick he is. I feel like we have been fighting this battle for months....