Friday, December 3, 2010

Eli's Update



We are long over due for an update on Eli. Eli is doing really well, but I will back up a little. Eli had his second open heart surgery (Glenn) at the end of October. His recovery at the hospital was very quick. We were home 6 days after surgery, which is really good. He came home on a ng tube (feeding tube that is placed into his nose) and was prescribe many medications. The first two weeks at home were incredibly hard. I have to say, we were not prepared for it. All I heard and read on life after this second surgery is that Eli would do so much better. That was not the case. Eli would not eat and when he finally did, he would vomit the whole thing up. This lasted for a few days. He would pull out his ng tube, which meant that either Israel or I would have to insert it ourselves. I remember one time we were trying to put his tube in, Eli was crying we were crying, it was so hard. But the hardest thing was Eli's headaches and withdrawal from his pain meds. This lasted for about 7 days. I can't begin to describe what is was like. Because of this second sugery it effects the pressures in their head. This would cause extremly painful headaches. Eli would cry and the best way I can describe it is that he would thrash around for at least an hour. He wasn't consolible. We would just hold him and pace around the house for an hour or so until he would finally calm down. We would do this several times a day for a week. Eli needed to be held all the time. We were so discouraged. Many times we thought maybe this is how life would be for Eli.

Its so hard when a heart baby has hard days. Not only because Eli was in so much pain, but it's hard when you don't know the "whys". Why isn't he eating? Why is he vomiting? Why is he crying so hard? Could it be his heart? headaches? gas pains? teething? Those days were very discouraging and heart breaking. Eli's np, Laura supported us so much during this time. Now that we are now on the road to recovery, life is beginning to become "normal" again. We can take a deep breath, relax a bit and look back at all that Eli and our family and friends have been through and feel a sense of deep thankfulness and peace. Our journey is hard but our son is strong and in the midst of the storm we feel God carry us. We look forward to the days of playing at the park with friends, long days of swimming and all the fun things that boys like to do.

Monday, October 25, 2010

The heart hurts...





First Eli's surgery went well. They have had some issues with trying to level out his blood pressure but everything so far has been going well. All of the machines doing the things that they are supposed to do. All of the people doing the things that they are supposed to do. I am forever thankful and in awe by the things that they can do.
With that being said, I have to admit I don't think I prepared myself to see him this time when he came back from surgery.Perhaps it is because he is older, perhaps it is because of the time that I have spent with him over the past three months. Honestly, it doesn't really matter the reason if you have kids or someone you love for that matter it sucks to see them go through something painful. Regardless of what it is. To tell you the truth I would trade with Eli in a heartbeat, I just don't think I am as strong as he is. My heart is fine and yet it hurts.
I am filled with hope now that the surgery is past. Hope for dreams that my son will have. Hope for things that we will do together. Hope for a healed heart for both him and me.

Sunday, October 24, 2010

Quick Update

Time has really gotten away from us these last few months. All of our focus has been on Eli and Maggie. Eli has reached the point were it is time for his second surgery. This last month has been filled with more doctors appointments then I can count. And the last few weeks we have noticed a change in Eli. The first surgery that he had was only a temporary fix. Eventually the shunt that is in his heart reaches a point that it will no longer meet his needs. We knew this surgery was coming, however it wasn't expected this soon. These last 3 weeks Eli has shown that now is the time. It has been very difficult to see him grow more weary and require oxygen to maintain decent saturation's. We've experienced many days and nights watching him and closely monitoring him at home. We are relieved and also very anxious that the second surgery is here. The surgery is tomorrow at 7:30am and should last 4-5 hours. Please pray for our son, the doctors and nurses. We could use your prayers too. We can't describe what it is like to see your child after a surgery like this.

Our son is so strong. We are so proud to call him ours. These last few months have been hard but it is such an honor to serve our son.

Saturday, August 14, 2010

Two steps forward and now one back


Eli has been doing so well at home. We have been able to adjust to life and now this. We are back in the hospital. Last night we were getting ready to head out for Friday night out with the family. As Maggie says, "I want to do something fun!". So I went to give Eli a bath and upon taking his shirt off discovered what looked like a large purple marble under his scar in his chest.  We instantly called our nurse as well as sent her pictures. She then called back and said pack a bag that we were coming back to the hospital. Sorry Maggie, no fun for us tonight. 




Once at the hospital and settled into our room they took some blood and said now we wait. And wait and sleep(some) and wait. 

Well as it turns out, Eli has an infection in his blood. They will continue to monitor him as well as give him antibiotics. They are concerned with it spreading and so are taking precautions to prevent that. Best case scenario is that his body reacts well to the medicine and a couple of days from now we go home. Worst case scenario is that they have to open him up again and clean the infection out as well as keep him here at the hospital for awhile. 
Obviously we are hoping for the best. In the meantime we continue to wait. 

Friday, August 6, 2010

Eli's Due Date...





(Ok so first I want to apologize for not updating the blog. I have heard from so many of you and really appreciate the desire to keep up with anything that is going on with Eli and us for that matter. Again all of you have been amazing with your love, encouraging words and prayers. Know that I will try harder.)

So yesterday was Eli's official due date. It seems crazy to think that he has gone through so much before the day he was actually supposed to be born. He was born 3 weeks early, had surgery 8 days later, went home 8 days later and has been doing awesome at home. It has been amazing to be at home with him. (don't get me wrong hospital food is the best, ha!)There is one thing that I do miss and that is nurses feeding and changing him in the middle of the night so mom and dad can sleep. Honestly, I forgot about that part. Ok and honestly it is Kati who is up 90% of the time in the middle of the night.

We are slowly transitioning to try and live life as normal as you can with a newborn. We have ventured out of the house a couple of times and usually meet people with questions everywhere we go. "He's so small. Why the feeding tube? How much does he weigh? He is really cute." I usually answer, "Yes he is smaller, he had open heart surgery less than two weeks ago, he is almost 6 lbs and honestly of course he is cute, look at me."

Where do we go from here? - So right now the goal is to get Eli eating more (which he is doing really well on) so he can gain weight and strength and then sometime before the end of the year he will have his second surgery.
Until then I will try and do better about updating his blog with at least pictures.

Thursday, July 22, 2010

The road to recovery

So surgery went really well yesterday. The surgeon said everything went great and they were really happy with the outcome. Then the time came for us to see him and as much as they prepare you and as much as you prepare yourself you are never quite ready. All of the wires and tubes and machines still gave us a gut check.
His progress though has been really good. He had some issues initially with his blood pressure but has done well. They have told us that everyday there will be a goal towards chipping away to the ultimate goal of going home. The goal for today is to start weening him off of the breathing machine. He has done great so far. So we continue to wait and chip and cheer at small victories.
Again we are overwhelmed by the love and support that we have gotten from family and friends. You guys are the best and we love you all.

Wednesday, July 21, 2010

The feeling of helplessness

This morning at 6 I woke up and went to the bathroom in our hospital room. Afterwards I went to check on Eli who was sleeping peacefully in his little bed. I stood there for a minute debating wether to disturb him from his contentment just so I can hold him in the quiet morning. I finally decided that I would sleep until 8 and then get up and still have dad and son time before his surgery.
At 7:40 Kati and I were abruptly woken up by Eli's nurse saying everything was fine but they were moving up Eli's surgery to 8. Sorry buddy no time for us now. We will have to reschedule. 
As Kati and I franticly run around the room trying to get dressed and spend the few minutes that we have with Eli it starts to settle in.
Before Eli was born I struggled with connecting with him. When Kati was pregnant with Maggie I would talk to her belly, sing to her, pray for her and so on. With Eli I barely did any of that. I talked to a close friend about it who understood. He had told me that it is a natural feeling to guard myself from connecting and loving because of wanting to avoid any pain it may bring in the future but at some point I will be so overwhelmed with love for him that I won't be able to deny Eli of it. Man he was right. From the moment that I saw him I have been like that proud dad dreaming about baseball games together, learning how to surf and teaching him how to snowboard (or him teaching his old man) and of course teaching him the ways of a musician. 
Ever since he was born I have been in a state of something. Several have said it was faith, I seem to believe it is denial. He has looked so perfect and done so well. There is a bible verse that says, "man looks at the outward appearance but God looks at the heart." I had fallen for it. I looked at the outside and have believed he was perfect but inside he was broken. And so am I.
Reality hit me this morning. As they wheeled him away and Kati and I stood there I had this sense of helplessness. Not the helplessness that you feel when passing a homeless person on the street but the helplessness that you feel when you have held and touched and kissed someone and then have to let them go. My sense of hope is that he is in amazing and capable hands. His surgeons, doctors and nurses have been amazing with Kati and I and so we are grateful for that.
In the meantime we wait and pray and pace and pray that all goes well and that one day Eli and I will be hitting the slopes together. 

Tuesday, July 20, 2010

Surgery

For those who just want the basics - surgery is scheduled for tomorrow at noon. It should take about 3 hours. It will be performed by a real surgeon and not the one in this picture.


 

Because the penthouse is how I roll

Well it has been an eventful week for sure. A week ago I was cozy and warm, swimming around in my own private swimming pool. It was dark with no lights at all and then all of the sudden....BAM! What the heck was that. I feel like I am being pushed off a cliff or out a tunn.... Lights! Holy cow lights. It took a minute to adjust to the lights and people grabbing me and poking and what is this place, I want to go home. STOP (wah!)

After all that drama they finally put me in my moms arms. That was nice but only lasted a couple of minutes and then off to be handled by more hands and machines and constant beeping. It can get a little old (I really don't even know what that means) after a while.

After two days of sharing space with 4 others it was nice to get recognized for the rockstar that I am and moved up to a single room penthouse. No offense Tre, little girl with the wagon that my sister liked more than me or Jesus (not the God who made me but the kid next to me) I just had to get out of there. 

So up to the good life I went, with flat screen tvs and fake hard wood flooring. The best has been the constant attention of mom, dad, visitors and nurses. I love all of it except the diaper changes.

Since then not a lot has happened. I just lay around and eat and sleep. And then the occasional dreaded diaper change. I even had them take blood from my foot and it didn't even phase me just please don't change my diaper.

So I guess the last thing to share before I take my 3rd nap of the afternoon is I overheard the doctor telling my mom and dad that my surgery will be tomorrow at noon. It should last about 3 hours total and then they will bring me back to the same room. I am not sure what that means or what to expect but I will be really happy once I can leave here and go yo my new home. Dad says there are so many people who would love to meet me and so I can't wait to meet you all.

Monday, July 19, 2010

Waiting, waiting, and more waiting...




We are constantly waiting. Waiting for Eli to be born and now waiting for doctors and surgeons to figure out when to do his surgery. I'm sorry that we haven't updated the blog but we really haven't had anything to say. Eli is doing awesome. He is eating and breathing on his own which is great. As of right now he is scheduled for surgery on Wednesday. We meet with doctors tomorrow to go over everything and will update again after that. Thanks again for your constant love, support, and prayers.

Thursday, July 15, 2010

Wednesday, July 14, 2010

Big Sister

video

HE IS HERE!!!

Well it started off slow. Kati was pretty popular having so many doctors and nurses coming in to see her. So many names and faces. "Hello I am so and so and I do this. I am Dr (enter name here) and I will be doing (enter some medical term here) once Eli is born. I can't tell you what they all do or did but I am forever grateful for this amazing group of people!

Kati was progressing pretty well, considering her last delivery took 3 and a half days. Her doctor was pleased with her progress and really wanted to deliver Eli himself but seemed to think it would be later in the evening. Then it happened.
4:50PM - a nurse checked Kati with her Dr in the room and said well you are at a 6. Wow a six that's awesome. We were told that probably means delivery by 7 or so. I went to find Kati's mom to update her
5:03PM - I'm on the phone with Kati's sister Drea trying to work out dinner plans for me (think what you want but an expecting father has to eat)
5:06PM - I walk back into the room to see Kati in some considerable amount of pain despite having an epidural. She looks at me with the look I understand as GET OVER HERE! and then politely says to me where have you been? I pull up a chair next to her and say, I'm sorry I was taking care of getting food. (poor choice of words) She begins to squeeze my hand which I know means here comes another contraction and with my other hand I text family and friends letting them know she is at a 6.
5:16PM - A doctor comes into the room to give Kati some pain medication and once he has done that the nurse decides to check her.
Nurse - Ok let's see what we have here. Are you feeling a lot of pressure?
Kati - Yeah I think so.
Nurse - Oh wow I feel the head.
Kati - What I'm at a ten?! (for us guys that don't understand, ten is that magic number where Europe's song The Final Countdown starts playing and people start to get in the catch position because it is on like donkey kong)
Nurse - Ok don't do anything I need to call some people.

Within minutes the room is filled with 10 to 12 doctors and nurses all ready to do what they promised us. I was trying to distract Kati and have her focus on me so she would not get overwhelmed. At the same time texting Drea - forget the food it is happening now!
5:32PM - Eli Brooks Whittemore is born weighing 5 lbs 5 oz.
Kati did amazing. She was taken to the operating room after to have a DNC done (procedure to help get all the placenta remnants out) She lost double the amount of blood but is doing ok today.
Eli is doing awesome. Able to breathe on his own and everything. He has already hit on a few of the nurses which makes things a little awkward but boys will be boys. I will try and have pictures as soon as I can get some posted. I will try and update later today what and when his heart surgery will be.
Thanks again to all of our amazing family and friends. Your messages of love and encouragement, hope and prayers always seem to come at the right time.

Monday, July 12, 2010

Houston we've been cleared for liftoff!

So we just got the results from the testing and eli's lungs are good so they are going to start inducing Kati tonight so the wait is on. We are excited. Kati followed up the news by ordering room service with cheesecake for desert. Ha and you ladies say that delivery is hard.

The plan....

As with my first pregnancy, I have developed a complication with my liver. This complication requires the baby to be delivered early. Delivery needs to be between 36-37 weeks then (instead of the normal 40). I will be 37 weeks on Wednesday.

So the plan is, I will be admitted to the hospital today for an amniocentesis to check to see if Eli's lungs are developed. If they're not ready, I will be sent home. If they are, we will start the induction process later tonight. My doctors' hope is that Eli will be delivered tomorrow.

Israel and I want to thank you all for the outpuring of love to us. Your friendships mean so much to us.

Thursday, July 8, 2010

Tricuspid Atresia






Tricuspid atresia is an uncommon form of congenital heart disease that affects about 5 in every 100,000 live births. Twenty percent of patients with this condition will also have have other heart problems.

Normally, blood flows from the body into the right atrium, then through the tricuspid valve to the right ventricle and on to the lungs. If the tricuspid valve does not open, the blood cannot flow from the right atrium to the right ventricle. Blood ultimately cannot enter the lungs, where it must go to pick up oxygen (become oxygenated).

Treatment

Once the diagnosis is made, the baby will be admitted to the neonatal intensive care unit (NICU). A breathing machine (ventilator) may be needed to help the baby breathe. A medicine called prostaglandin E1 is used to maintain circulation of blood to the lungs.

The condition always requires surgery. If the heart is unable to pump enough blood out to the lungs and rest of the body, the first surgery usually occurs within the first few days of life. In this procedure, an artificial shunt is inserted to maintain blood flow to the lungs. In some cases, this first surgery is not necessary.

Afterwards, the baby usually goes home. The child will need to take one or more daily medicines and be closely followed by a pediatric cardiologist, who will determine when the second stage of surgery should be done.

Stage II of the operation is called the Glenn shunt or Hemifontan procedure. This procedure connects half of the veins carrying blue blood from the upper half of the body directly to the pulmonary artery. The surgery is usually done when the child is between 4 - 6 months of age.

During stage I and II, the child may still appear somewhat blue (cyanotic).

Stage III, the final step, is called the Fontan procedure. The remainder of the veins carrying blue blood from the body is connected directly to the pulmonary artery leading to the lungs, and the left ventricle now only has to pump to the body and no longer the lungs. This surgery is usually performed between the ages of 18 months and 3 years of age. After this final step, the baby is no longer blue (cyanotic).

Wednesday, July 7, 2010

I'm here to give you hope.

I can't say I remember much. I remember following a doctor to another doctor's office. I remember looking at Kati and seeing the pain and the unknown in her eyes. I remember feeling the same. I remember texting our parents and giving them the news. We are not sure what it is but something is wrong. I remember sitting in a room while a ultrasound technician takes the longest look again at the heart. I remember thinking what the heck is going on as another doctor came in and looked for what seemed like an eternity. I remember not wanting to make eye contact with Kati for fear I or her or both would lose it in front of these strangers. But what is strange is after all of this I think I remember the voice of Hope more than anything. In Psalms 23 David says it best, "even though I walk throught he valley of the shadow of death I will fear no evil for You are with me." In this moment of hopelessness, God granted us hope. It came in the form of our nurse, Beth. After meeting Beth and talking to her for about 30 seconds you understand, she was created for this job. After spending 30 minutes with her you start to realize this job was created for her. The first thing Beth says to us is, "I'm here to give you hope". Beth brought Kati and I understanding through pictures and charts. She comforted us with tissues and stories of other families who have walked our road. Most of all she gave us HOPE. Hope that even though this may be the hardest time in our life, we are in great and capable hands.
What seemed like days since we had first gotten our news was only 3 or 4 hours. We had gone from the highest high to the lowest low and now leveled out. We walked to our car talking, crying, questioning, hoping, praying, and wondering what was ahead. The one thing that we knew for sure was that we were having a girl. Oh wait that was wrong. Its a boy!

Hit by a train...

Like Kati said, I remember the day like it was yesterday. I couldn't wait. Kati said it was my choice to choose if we were going to find out the sex. Heck yes we are finding out.
"Boy or girl, what are you hoping for?", Kati asked.
"It really doesn't matter, happy and healthy is good enough for me!", I replied.
Little did I know that today would bring us news of the opposite.
I don't want to go into it (Kati covered everything) but I do want to talk about what I felt. Pain, loss, hopeless, fear, uncomforting, numb all at the same time. I can't remember feeling that way. When the nurse first told us she paged the doctor I tried so hard to act like it was probably no big deal. Stay positive for Kati, she needed me. But it couldn't be hidden, I was a mess inside. What did this mean for us? When the doctor came in I could instantly see it on his face as well. In his best way he tried to explain what he saw and what it meant. I could tell it wasn't why he decided to be a doctor. Who enjoys giving news like this? I tried really hard to pay attention to him because I knew I would be the one to explain it again to family and friends. When he left the room, hope seemed to leave with him. At least my room.

Monday, June 7, 2010

March 12, 2010 - 10:48 am

I remember this day as if it was yesterday. Israel and I in the waiting room, excited to find out whether we were having a boy or a girl. With my first pregnancy, I really wanted to be surprised at the sex of the baby. Israel on the other hand wanted to find out. I promised him that next time it would be totally up to him. As we are waiting, I turn to him and ask, What have you decided? He smiles at me and says, Oh we are definitely finding out.

We begin our ultrasound with much joy and excitement. She tells us we are having a girl. (It is later confirmed via amniocentesis we are having a boy.) As she was scanning his heart I was watching for the 4 chambers of his heart. It was difficult to see. I have a sick feeling that comes over me, I know something is wrong. The technician leaves the room, I turn to Israel and I say to him, something is wrong. The optimist that my husband is, says to me, everything is fine. The tech comes back in the room and says I paged the doctor to come back from the hospital to come meet with you. At that moment we both knew it. We waited for what seemed like an eternity for the doctor. When he comes in, he does his own scan, and then delivers the news. The baby has a severe heart defect. At that moment the room begins to spin. I remember looking at Israel and thinking this has to be a nightmare. The doctor begins to tell us all the other things that could also be wrong. Many times if a baby has a heart defect it normally is associated with a genetic/chromosomal disorder. He wants to run several tests to check. When the doctor leaves the room to prepare the tests, I turn to Israel and I see this look in his eyes, that even now thinking back to it, makes me cry. Even now I can't find the words to describe how those moments felt. Shock wouldn't even come close to describe how we felt. I look at my husband, I remember feeling my heart break to see him hurting so badly. The doctor comes in and does an amniocentesis, I never even felt the needle go in. He tells us we will need to meet with a Pediatric Cardiologist to discuss what this means for the baby.

In all honesty, I didn't think anything could be done to save our baby. I was preparing myself that the cardiologist would tell us there is nothing that could be done to save his little heart and that we need to end the pregnancy. My doctor walked us to the cardiologist, it was amazing that they were able to see us right away. Most people have to wait at least a few days if not weeks to get answers regarding their child. I remember Israel holding my hand and as he is leading me to the next doctor, I remember thinking, this isn't happening, hold it together, don't collapse. I've never felt so helpless and fearful in my life.

I had no hope.