Back to Work

Today was my first day back in the office since October 28. Not to say I haven't been working but being in the office is different. It makes me feel disconnected from what is going on at home and in the hospital.

I spoke with the doctor this morning and she said that Brayden had a really good night and even though part of his left lung is still collapsed his blood gases keep coming back really good. She said she was going to leave him in the oxygen hood and that she was not going to do anything to him unless he made her do it.

I met Miranda at Baby's R Us after work and we went straight to the hospital. When I met Miranda, Payton and Doa at the store Payton told Miranda to be sure and not drop Brayden. We both got a good laugh out of it. When we got to the hospital the nurse told us that Brayden had pulled his feeding tube out of his mouth twice. It's not a big deal to pull out the feeding tube, but it does still have to go back in. It was great sitting there holding him without having to worry about pulling something out of his chest or nose. To just sit there and hold my son and feel his little movements and whimpers. While I was holding him he also got the hiccups, it was the funniest thing to hear, he sounded like a little puppy whimpering. After about an hour he started getting hungry so we put him back in his bed and the nurse began his feeding. Here is a video of Brayden laying in his bubble sucking on his Binky while getting fed. Watch how mad he gets when he looses his Binky. That boy loves to eat and by george he will let you know it is feeding time. In that respect he is the complete opposite of Payton. We can't make Payton eat and I have a feeling that Brayden is going to eat us out of house and home.

The road has another bump

This morning I called the nurse and she said that Brayden was doing ok, he was still on about the same amount of oxygen and the air in his chest was still there. It was some what good news that he had not gotten worse but a little disheartening that he had not gotten any better. Later the doctor called and said pretty much the same thing but she was optimistic about his xray saying that she thought it looked better. After hearing that news we decided not to go into the hospital till later.

45 minutes later the doctor called back and told me that our extremely feisty child had decided to pull the tube out of his chest. She also told us that she had decided to pull him off the CPAP and place him in a Oxygen hood. An Oxygen hood is pretty much what it sounds like, it is a plastic bubble that lays over his head and has Oxygen pumped into it. She said his xray showed he still had a small amount of air in his chest and the bottom part of his left lung was still collapsed but he seemed to be so much more comfortable she didn't want to mess with him. She is hoping that leaving him off the CPAP will help his lungs heal. Our hope is that he won't have to go back on the CPAP at all. Here is a pic of Brayden and his bubble.

The doctor came and spoke with us while we were visiting and gave us some really good news. She was able to switch with another doctor and will remain Brayden's primary doctor during the rest of his stay in the NICU. Miranda almost started crying she was so happy and told the doctor she would hug here but she was afraid she would get her all germy. Here is a pic of Brayden and his doctor.

With him being in the bubble we weren't sure if we would be able to hold him, but Dr. Nesslein is very adamant about us holding him every chance we get. without the CPAP hood and all the wires it was a much more enjoyable experience. We didn't have to worry about something popping loose and causing him discomfort. All they did was put a tube with oxygen in front of his face and let him breath it. I can't wait till I can hold him tomorrow.

Payton's Christmas Pic

After the drama of this morning, Payton asked if he could go see Santa. We were shocked because every year in the past Payton has asked to go see Santa but as soon as we get there he backs out. He told us he was BRAVE and that he wanted to tell Santa what he wanted for Christmas...For those wondering, He wants a Thomas the Tank Engine Lionel Train. Here is Payton and Santa.

After seeing Santa and spending some time at Bass Pro Shop with Payton, Miranda and I went back to the hospital. It is so hard trying to choose which child to spend time with. Brayden needs us there with him to give him support but then again Payton has been left with Doa for the better part of a month. We talk to him on the phone often but he always tells us he misses us. I think he knows there is something going on with Brayden, he is a very intuitive little boy. This morning he asked me, out of no where and before I had told Doa about Brayden's pneumo, if Brayden was doing ok. I think he knows Brayden is struggling. It breaks my heart to have to leave him behind and not include him in what is going on with is little brother. He love shim so much and wants nothing more than for him to come home. Payton asked me today if he could come to the hospital with us so he could spend time with us. I love that little boy. He is going to be a great big brother.

A bump in the night

This morning when I woke up I called the NICU to check on Brayden like I always do, when I got the nurse she said Brayden had a relatively quiet night but was up on his oxygen a little bit. I asked her if he would be okay with us holding him for about an hour and she said an hour would be fine. Then she told me to hold on the doctor was standing there and she wanted to talk to me. Thinking it was just her morning update I gladly said ok.

the doctor began as she always does in her nice chipper voice by saying good morning. Then she dropped the hammer! She told me that when she was examining Brayden this morning he just seemed more agitated than normal and didn't look himself so she took a blood gas and an xray. She said the blood gas came back,"Stone cold normal" but when she saw his xray, she told me she said a bad curse word in her head. Her next words made my heart drop..."Brayden has another hole in his left lung and we need to put in another chest tube".

I dreaded having to tell Miranda about it but i had no choice. the only bright spot about it was that Dr. Nesslein was there and she is a great comfort to Miranda. She is a very caring and compassionate person who takes the time to listen to us and explain everything to us as well as listen to our stories about Payton. Dr. Nesslein told me that while she did want to put in a chest tube to relieve the pressure around his lungs, she told me that she was going to do it with an IV catheter rather than a full blown sewn in chest tube like he had before. We were told by another doctor that Nesslein is the lung expert of the group, apparently she spent 6 years doing her fellowship and working at some sort of a respiratory institute. With Brayden having so many lung issues, it is a huge comfort to us to know she is so knowledgeable.

We had planned on going to the hospital early today but after hearing the update about Brayden we rushed to get ready and leave. We wanted to get there as soon as possible to be with him and talk to the doctor face to face. It was hard to see him laying there with another tube in his chest. We were sure we had gotten past this point after he came off the JET. While speaking with the doctor she told us that while having a pneumo in the second week of life is rare, it is not uncommon in preemies like Brayden who have lung disease. She spoke with us for a while and told us that she is still not overly concerned about Brayden's status and that he should only have the chest tube in for a couple of days. However while we were standing there talking to her Brayden stopped breathing for a minute or two, it felt like an eternity. I was looking at him through his isollette when he had his episode and I saw him stop moving. My heart began to sink all I could do was stare at him and will him to breathe again. His O2 saturation and his heart rate began to drop. Dr. Nesslein immediately reached in and began to try and stimulate him to make him breathe. After a few minutes his heart rate and saturation came back up. If there had not been a chair right there, I think I would have had to pick Miranda up off the floor. We both would have freaked if the doctor had not been standing there.

After sitting there with him for a while after the episode, Miranda and I had to leave because they had another baby coming into the POD. After some sighs and a long good bye we left to come home but planned to return later to check on him again later this evening.

Day after Turkey

Sorry for the late update but with yesterday being Black Friday we were busy as I'm sure many of you were. We did not partake in the shopping madness but we opted to spend some quiet time with Brayden. As Thanksgiving was my day to hold Brayden today was Miranda's however, Brayden was being a little fussy and we decided not to upset him more by pulling him out of the incubator. There was also a new admission into the NICU in the same POD as Brayden so our time with him was cut short. He was a little agitated and was requiring more O2 than usual. Miranda was worried about him as any mother would be. All in all a quiet day.

Pics from the NICU

Daddy's Big Boy

After a nice Thanksgiving lunch at Doa's house, Miranda and I headed to the NICU to spend some time with Brayden. Since Miranda got to hold him yesterday, it was my turn today. When we got there, the nurse had him all bundled up so all you could see was a head. She told us that he was doing great but was quite feisty when she tried to change his diaper. They all keep telling us that! (I think we are going to have our hands full with this one).

When I got to hold him it was scary. He is so tiny, the pictures do not do him justice, and it feels like if you squeeze to hard he will break. But the feeling of holding your child for the first time is something that just can't be beat. For those who have kids you know what I mean. In the case of holding both Payton and Brayden, imagine picking up a little cornish game hen and trying to hold it close to you.

My time holding him was cut short because he managed to get the CPAP machine off his nose and he started to de saturate, which means his blood oxygen level began to drop to a dangerous level. For the most part they want his O2 levels to be between 85% and 95%, most of us stay above 97%. While trying to get him back on the bed and hooked back up his O2 levels dropped to the 60's which with prolonged oxygen deprivation can lead to brain damage and other complications. Here is a video of how feisty he is. I took this while the nurse was trying to get his CPAP machine back on his nose. Look how mad he is.

Kangaroo Care

Well last night Brayden was in a bit of a mood and we didn't want to stress him out too much so we didn't hold him but we did spend a couple of hours touching him and playing with his little hands.

Today when we went to the NICU early so we could hold him and speak to the doctor directly. When we got there, the nurses were busy and we couldn't hold him right away so they asked us if we would change his diaper and take his temp. It was kind of weird changing his diaper with all the wires and stuff still attached but I did it. Here is what he looks like now back on the CPAP and without all of the arterial lines.


Miranda was the first to hold him today. It was great seeing him nuzzled up close to her. I took some video of her holding him.

The doctor spent about 20 minutes or more sitting there talking to us while Miranda was holding Brayden. She was telling us how proud she was of him as well as how moody he is. Apparently he likes to take swings at people who mess with him when he is trying to sleep. She told us that his x-rays and blood gases have looked so good that they are not going to do any more unless he gives them a reason to think he is under duress. The most heart braking news she gave us is that she is being moved over to Cook Children's on December 1st and that she will no longer be his primary doctor. This shocked both of us but Miranda took it hard. She really likes Dr. Nesslein because she not only cares about Brayden but she has a great calming presence about her. We will definitely miss her.

Everything went great when Miranda was holding Brayden until he got hungry. It was funny watching him sit there and make sucking motions when she held him up to her chest. The comfort and smell of being near Miranda's chest really kicked in those nursing instinct and he just kept on making sucking noises. The doctor told us it will be a few weeks before she can try and breastfeed him, he has to be off the CPAP machine and holding his own temperature.

Tomorrow is my turn to hold him. Check back for pictures of that.

A breath of fresh air

Just got off the phone with the doctor and she says they have pulled the breathing tube out and he is on CPAP and doing great!!!! They have already pulled one of the arterial lines out of his stomach and will pull the other one out this evening around 5. She told us that if we go up to the NICU after 7:30 then we will be able to hold him for the first time. I am so excited, I can't wait. Of course I will let Miranda hold him first. Stay tuned for pictures of our first Kangaroo Care session.

Most Importantly, I can't believe I forgot, the Ultrasound on his head to see if he had any bleeding on his brain came back clear. They said his head is perfect!!!

The tubes come out

Yesterday was a really good day for Brayden, his x-rays and blood gases came back so good that they were able to pull the chest tube out of his left side. They upped his feeds to over 11mls every three hours to try and get him growing.

Before we went to the NICU Miranda had to go to a her doctor for a check up. Not knowing it was going to take 3 hours she told me to go ahead and go see Brayden, so I left her and Payton siting there. I hated leaving them there but I was bale to spend a good couple of hours holding Brayden's hand and caressing his little head. While I was in there I spoke with the doctor on call and she told me that because he has been doing so good, they were going to take him from the JET to the conventional Ventilator. This raised some fears in our minds because this was how Payton's lungs collapsed. After talking it over with the Doctor, they convinced us that this was the next step down to completely being off the ventilator and going back on the CPAP machine. They do this step down because they need to see if the baby is going to be able to breathe on its own and if not how much support does it need. If the baby is not able to breathe on it's own and they went straight from the JET to CPAP then it would be more traumatic to reintibate the baby.

When we called back last night the nurse said he was doing great and that they had taken a couple of x-rays to make sure there was no more air collecting in his chest. This is a great step forward in his getting better. They said that if he did good on the vent over night, that they would put him on CPAP and start to remove the arterial lines in his tummy. Once they pull these lines out we will be able to hold him.

Brayden's Eating Again

Yesterday we went and spent a few hours sitting with Brayden and holding his little hands. He is doing great. His blood gases have been coming back so good that they have weened him down on the JET to its lowest settings. He is still on the JET and will probably remain on it for several more days but sitting there watching him, you can see him breathing on his own over the machine.

His xrays have been coming back better and better so they put the chest tube on his left side on what they call water seal. Which means it is still in his chest but it is not actively sucking out air. This is the stage they put the chest tubes when they are getting ready to pull it out. Last night when the nurse was telling us about the xray she said that the pnuemo on the left was still there and getting better but she said that if he did not have a chest tube in right now, they would not put one in for a pneumo of this size. That really made Miranda feel at ease.

If his morning xray comes back good then they will probably pull his chest tube out today. He is such a strong little man. They have also upped his feedings to almost 1/4 of an oz every three hours. They weighed him two days ago and he was 2.9 lbs but when they weighed him yesterday he was 2.7lbs. The 2.7 is probably more realistic, all the tubes and IV add some extra weight. Here are some pics I took of us visiting last night. Enjoy.

Look at him staring up at mommy.

Look at those cute little fingers.

Party Thanks

We would like to send out a very heartfelt thank you to everyone for the gifts we received but more for the support you have shown us. It means a lot to us to have such great friends and family to lean on.

Just to let everyone know, after the party Miranda and I went to spend a little time with Brayden in the NICU. As we were walking towards the NICU my phone rang. Immediately Miranda got tense. I got nervous when I saw the number was from the Baylor NICU. When I answered the phone, the doctor told me he was calling to give us an update. I told him we were on our way in and he said he would speak with us then.

He told us that Brayden's morning xray looked really good and that the pneumo on the right side was gone and he was going to pull the chest tube out of his right side. He also told us that his blood gases had been coming back so good that they were able to ween him down on the JET. HE is still on the vent and will be so for a couple of weeks but he is doing so much better.

It was great to see all of you at the shower and I really appreciate everyone taking the time to drive such great distances to be with us, even if it was for only a few short hours. Thank you all and keep watching the blog for more updates and pictures.

Look at those Beautiful eyes.

A Handsome little boy

Baby Shower Update

Ok event hought Miranda has been discharged, the Baby shower will be held tomorrow at 1:00 at Baylor All Saint Hospital.

The address is 1400 8th Ave.
Ft. Worth, Tx 76104
It will be in the Antepartum Day Room.

For those who are attending please call for directions or assistance when you get to the hospital. It is a pretty big and confusing place. Thanks and I hope to see you tomorrow.

Brayden Update 11-20-2009

We went and saw Brayden this morning after speaking with the doctor on the phone. She told us that Brayden had a very uneventful and boring night. Which for us is a great relief. He is still on the JET but is close to breathing room air, not using oxygen. She told us that she stopped his Dopamine, which is his Blood pressure medicine, because he was staying pretty stable. They have him on a slow morphine drip to keep him sedated so the JET can do it's job.

When we went to see him, the Doctor smiled at us from across the room and said that she had a talk with him last night and told him that he needed to behave. Last night when we spoke to her she told us that she had a long talk with him and told him he could be her boyfriend and live in the lap of luxury if he would lay still and not cause any more excitement. We had a good laugh about it. We told her that he had been hearing all the stories about Payton and decided that he couldn't be out done by his older brother. One of Miranda's nurses told us before Brayden was born that Payton was our miracle child and Brayden was going to be the normal one. I guess the battle over who is more special has now Begun!!!

Our visit with him this morning was short due to Miranda's still high blood pressure but it was very enjoyable. I love to sit and just stare at him. People always ask me if i want a chair to sit in, but for me all I want is to be as close to him as possible. Since he is too unstable to touch, I cross my arms and place my head on the glass and just stare at him. He is so perfect!! Just for size reference, here is a pic from a couple of days ago with my finger next to his foot. Enjoy!!

Miranda's Going Home

HOOOOORAAYYYYY!!!!

The Doctor came in and said he is releasing Miranda to go home. Not sure what time we are leaving today but we will not be going all the way back to Denton to stay. A social Worker here at the hospital told us about the Ronald McDonald Hose over by Cook Children's and has set us up with a room.

According to the Social Worker we can stay there for 30 - 45 days so we can be close to Brayden. Payton will also be able to stay with us which is great. We have missed being with him the past few weeks.

With us being discharged, I will keep you up to date on the baby shower. We may be able to have it over at the Ronald McDonald house. Stay tuned for more information.

Baby Shower

To: Friends and Family
Come help us celebrate the arrival of Brayden Riley Leija. For those wondering what to get him, he loves monkeys, lions, giraffes or anything with a jungle theme. His favorite colors are browns, sage and nuetrals.Brayden has registered at Baby's R US, Target and Burlington's Baby Depot and he loves Gift Cards.His party will be heldSaturday November 21st @ 1:00 p.m.at the Baylor All Saints Hospital on 8th Ave in Ft. Worth, Texas Rm W326 (Please call for directions and location of Room)

The Dr's calming words

After the phone call last night we were expecting more changes when we got to the NICU this morning. Miranda is still batteling blood pressure issues as well as struggling with the battle Brayden is undergoing. When I got to the NICU we ran into a very familiar face. The receptionist at the front desk, Linda, was the receptionist at Harris when Payton was born. As soon as I walked in she says hey I recognize you. To me it is comforting to have a familiar face in such a stressful place. I went and dropped off the breastmilk form last night and visited Brayden while Miranda was still trying to wake up and get her blood pressure under control. The Dr. spoke with me and told me they were still having issues with his blood pressure. There is an Artery in the heart called a PDA that connects to the umbilical cord while the child is in utero. This artery takes the blood from the mother and bypasses the lungs and the right side of the heart and goes directly to the fetus's body. After birth the PDA is supposed to close off and start shunting blood to the Lungs and the left side of the heart. The doctor explained to me that in Brayden's case, the artery has not completely shut off and he is shunting blood to the wrong part of the heart and lungs. She also explained that his kidneys are not filtering quite like they should and he is having an excess buildup of acid in his blood, which they are treating with medication. As well as the PDA and the kidneys he is also having problems with his liver which is causing him to have to undergo light therapy. Here is a picture I took this morning.

While visiting with the Dr and Brayden Miranda texted me and told me her BP was 176/108. I ran back to the room to try and be with her and to help her get ready to visit Brayden.

When we walked into Pd 2 the nurse greeted us and began a rundown of all the changes that had taken place last night. We got Miranda a chair so she could sit down and rest while visiting Brayden. While dealing with all of the stress from the NICU is tough, Miranda is still struggeling with her own medical issues. Dr. Neissline is Brayden's primary and she is a blessing. She is very calming and very friendly. She sat and talked with us for almost 30 minutes explaining to us how he was doing, what she was going to do. This conversation helped calm Miranda down and give her the piece of mind that he is in good hands. And he is!!!

Here is a pic of Mom and Baby Brayden.

Last night

Last night after everything that went on we thought we were through the rough spot but while I was in the gift shop trying to get some things for Miranda and Brayden, Miranda called me and asked if I had spoken to the doctor. I told her no and she began crying. I ran up to the room and she told me the on call Doctor had called and said that his blood gasses looked bad and the chest tube weren't working. He told her that he was going to replace the one on the left side and see if it made things better. After about an hour and a half he called and said they were done and waiting on another chest xray to confirm the lung had opened back up.



An hour later he said it was working good and that they were going to redo the other chest tube as well. I sat on the bed holding Miranda, trying to reasure her that he was strong and that he was going to be ok. We spoke to Miranda's nurse and asked if she was stable enough to go and see him. She gave us a wheel chair so I could take Miranda down to the NICU to see Brayden for the first time. When we got there and she saw him for the first time, the memories of everything that we went through with Payton came flooding back. Seeing Brayden laying there on the ventilator was more than she could handle. She began sobbing and I grabbed her and held her trying to tell her he was going to be ok. Together we stood there and looked at our little peanut laying there helpless. Wanting to do something to make it all better but having no power to do anything but stand and watch. We spoke to the doctor and he told us everything was working like it was supposed to and that he was hoping for a very non eventful night. While speaking to him Miranda told him that he was one of the doctors that took care of Payton and that he was the one who put the chest tube in Payton when his lungs collapsed. Wee all kind of sat and talked about Payton and shared some of the stories from our first visit to the NICU.

We went back to the room and tried to get some sleep. At 1:00 this morning the phone in the room rang, never a good sign. The doctor told us that the chest xrays were still not very good so they put Brayden on the JET. A type of ventilator that takes one breath and chop it up into a number of short burst of air. This machine is supposed to be easier on the lungs. As soon as I answered the phone, Miranda began to cry, knowing it wasn't good news. i told her what the doctor told me and that it was for Brayden's benefit. It wasn't because he was doing worse but a preemptive tactic to try and help him recover quicker.

The story continues

After all the drama from the night before, I went to the NICU to check on Brayden and see how things had changed through the night. When I got there, I met the doctor who had spoken to us the night before. She told me that during the night while they were taking xrays of Brayden's chest they found another hole in his right lung and they had to put a chest tube in his right side. The pnuemo on the right wasn't very big but they went ahead and put in the chest tube as a precaution. She also informed me that he was having some blood pressure issues and that they were goin to sedate him and make him lay still so the ventialtor would do the work for him. He is such a fighter, that he was breathing over the machine and trying to do it all on his own. Here is a picture of what he looked like yesterday morning.

Brayden's Status

Many of you may not know what happened to Brayden on tuesday. After his first night, we thought everything was going smoothly and that his time in the NICU would be uneventful. Tuesday they were moving Miranda from Antepartum to Postpartum when I realized I left the breast milk in the fridge in the old room. When I went back and got it, I decided to drop it off in the NICU for Brayden. As i walked in the door i heard the receptionist saying they need a chest ex ray in Pod 2 STAT. That just so happens to be the unit Brayden is in. I calmly said to the receptionist I know you can't tell me what is going on but can you please tell me if it is my child or not. She told me she couldn't tell me and that I could not go back there because they were doing a procedure on one of the babies. She said I would have to go outside the NICU and call back in.

So I did. She answered the phone and said I can;t put you through because they are working on a baby and all the nurses are busy. I made my way back into the room and tried not to let on that something might be wrong. A short while later, the charge nurse from postpartum came in and said, "I heard you guys were worried about something that you heard called over the PA and I called the NICU and they said they would have someone call you and let you know the status of your baby."

At that point Miranda knew something wasn't right. I tried to keep her calm by telling her that I was sure it wasn't Brayden, that the baby next to him had been having trouble all day, which he had. Everytime I was in the NICU visiing Brayden that baby's monitors kept going off. About an hour later there was a knock on the door and the NICU doctor came in and the first words out of her mouth were, "Your baby is stable now and I wanted to come fill you in on what happened." At that point Miranda began weeping and i was doing all I could to hold myself together. She told us that he had developed a pnuemothorax on his left side. A pnuemothorax is a hole in the lungs in which air escapes the lobe of the lung, fills the chest cavity and causes the lung to collapse. The doctor continued to fillus in and said that they were able to get a chest tube in to suck out the air but they had to put him n the Ventilator because he was unable o breathe on his own. At that point she asked what the baby's name was and when I tried to respond, nothing came out. We cried and held each other. It was all happening again. The same nightmares we lived throgh with Payton were coming back to life.

It was several hours before they let me go and see him. Miranda was still bed ridden because her blood pressure was to high for her to even sit up straight. I ran to the NICU to see him and give Miranda a report. When I returned to the room, Miranda was still in tears. I sat down beside her and tried to reassure her that he was doing good. After a couple more visits we finally went to bed.

Brayden's first 24 hrs

After the c-section he was wheeled up to the NICU where he was assessed and stabalized. Miranda was in the recovery area of labor and delivery where the nurses were struggling to get her blood pressure back to normal. Her once high blood pressure had plummeted to a dangerous 90/50 and her heart rate had dropped to less than 50 beats per minute. After receiving a couple doses of Epinephrin to speed up her heart, she was wheeled up to the NICU so she could see Brayden before being placed in a personal room.

Once we got settled in the room, and I made sure Miranda was doing ok, I went to see Brayden for the firs time. Walking in to the NICU was like stepping back 9 years. I even had to stop my self from saying I'm here to see Payton. Here is a little clip of Brayden in his Isolette.

Brayden was doing well, he was on minimal amounts of Oxygen and very little meds for anything. Everything was going well. I continued to go back and forth between visiting Brayden and helping Miranda.

A few pics of Brayden

Brayden's Birth

Please help me welcome Brayden Riley Leija to the world. He was born Nov. 16, 2009 at 4:25 pm. He weighed 2 lbs. 6 oz. and measured 15 1/4" long. Here is his first photo, taken just minutes after his birth. Here you can see the nurses and doctors trying to get him set up with the CPAP machine to help him breathe.