Tuesday, January 31, 2006

Guestbook entries for 1/31/06

Below are all the guestbook entries recorded on Alex's Caringbridge site on January 31, 2006

Continually thinking, and praying for you Lex. Stay strong and keep fighting sweet baby.

LoveJamie Russell

Dear Little Alexander,
I just want to let you know that we are praying for you while you go through surgery and recovery (and everything else you are going through right now). You have already proven yourself to be quite a strong little boy, so keep it up! We are praying for your Mommy and Daddy too. Hang in there and show 'em what you've got!

Lots of Love,
Beth P. and Family

I pray for you every day little one, every day I pray for you.
Some day you will have a big story to tell in show and tell, I cant wait for the day mommy and daddy get the chance to take you home and just let the sunshine hit your sweet little face.
Ethan wants you to know that you are going to get big and strong just like him. He wants you to know beating the odds is fun cause then all the nurses and doctors talk about you. Starting out little isnt as bad as it seems, people think your cute even when you pee on them.
Kat and Craig, please know that Nathan, Emma, Ethan and I have been praying for you all. It is our turn to return the favor to you. We can't wait until your home lex, be safe in the hands of God.

Love, Trista, Nathan, Emma and Ethan

Sweet Kat, Dearest Craig and Family...
Nothing has been more on my mind this week than the well being of your little Lex and family. I know he'll be ok...it would be impossible for all these prayers and love to fail. You are the first thing on my mind when I wake and the last thing before I finish my prayers and go to sleep at night. Circle your family around him...touch him and love him and talk to him and when he knows all of you are there and loving him, that will get him through.
Don't forget to take care of yourself, too miss Kathleen...after all you DID just have a baby! Have your weak moments, your strong moments, and try to get your rest. And know you have a hundred virtual shoulders out here for you to lean on, cry on...anytime.

All my love and prayers,

Wow Lex! A plane ride at 2 days old! God has an exciting life planned for you little man! I'm sure you already have the nurses falling in love with you! Give Mommy some butterfly kisses and a big ole southern hug for me. Stay strong, Lex, and stay healthy, you've got women all over the world waiting to meet you.
Kat - as much as your world seems to be spinning right now... know that my family is all praying... and know that your strength is an inspiration.
Stay ever strong Mama.

With Love, Hugs, & Prayer - Ape and her Monkeys

Dear Kat, Craig and Kids....
May God be watching over you and little Lex. It's ok to cry and just let little Lex you love him and want him to get better soon. All the prayers and good thoughts in the world for you guys now...We are thinking about each and everyone of you. Not one day goes by when someones doesn't ask " Hows Lex?" or " hows Kat and her baby ??" ... you are obviously cared and loved by many. Get well Lex !!

Cindy Gillmore

Day 3

It's been a long 3 days. It's sometimes hard to imagine he is only 3 days old because it has been a lifetime it seems.

Alex has continued to be stable. He is on the ventilator but has always done all of his breathing on his own. His PDA is being kept open by a medicine called prostaglandin, PGE1, until they can fix his heart.

Today he had a procedure done where they put a catheter up the artery in his leg into his heart. This test let the doctors see exactly how his blood flows through his heart so that there are no surprises during surgery. They gave us some pictures and tried to explain what they meant but unless you do this for a living it's all pretty much japanese to us. We do know that there was significant narrowing in his left pulmonary artery.

So far we are told Thursday is the day he will have his first surgery. They will do a shunt procedure in his heart to allow the PDA to close as it should and let blood flow to his lungs, he will have his pulmonary conduit placed. From there we are told they will let him heal, get him home to grow and plan the big surgery when he is big enough to withstand actual open heart surgery.

Monday, January 30, 2006

The first days

The drive to Marshfield seemed to take a year. On the way we called everyone we knew and asked for prayers and told them the news, Alex probably wouldn't make it to Marshfield.

We spent the drive in silence. The radio was on but the only song I heard was "Jesus take the wheel" since it was repeating over and over in my head. I kept using it to push out the thoughts that were trying to invade, the thoughts of my baby being dead. How was I going to do this?!

About 30 minutes outside of Marshfield Craig's phone rang. I looked at the number and didn't recognize it. I knew what that meant, it was the hospital. Frozen with fear I handed the phone to Craig. I don't think I took a breath until he hung up and told me the news. Alex was at the hospital,. intubated and doing FINE! I again called everyone to let them know the good news! Hope started to creep in again and I don't think I stopped grinning and talking Craig's ear off the rest of the trip.

We arrived at the hospital and found our way to the NICU. We were greeted there by a very tall doctor who introduced him as the neonatologist caring for Alex tonight, he told us that he had gotten him intubated with no problems and started a medication to help his heart. The cardiologist was in with him now doing an echocardiogram on his heart and would see us in the waiting room as soon as she was done.

We went to the waiting room and spent 30 nervewracking minutes waiting to hear for the first time, what was really wrong with our son. Again time seemed to stand still.

Finally she came in and drew us a picture of what was wrong with Alex's heart. She told us our options and we made arrangements to transport him to the U of MN since this hospital he was at didn't preform pediatric cardiac surgery any longer. We were led into Alex's room that he shared with 3 other babies, at 4 lbs 14 oz he was the biggest baby in the room and the only one in an open bed. Aside from the ventilator he looked actually out of place there. His color was much better, the medicine they had given him opened his ductus arteriosis which allowed him to get the oxygen to his blood that he needed. My brother arrived and we spent some time with him before getting some sleep, the hospital was nice enough to supply us a room in the maternity ward just down the hall for the night.
The next day my mother arrived with the children so they could see thier brother again before we headed to Minnesota the next morning. It was probably the least stressfull day of the whole adventure since they didn't do anything to Alex, only let him rest and spend time with us. We got a room at the Ronald McDonald House that night and were urged to take advantage of what would be our last night of decent sleep in what turned out to be a very long time.

Monday morning we arrived at the hospital at 7am to spend time with Alex before his scheduled 8am flight. Unfortunately the flight team arrived EARLY and we got nothing more than to say goodbye to him and stand back as they worked to prepare him for his flight. Equipment had to be changed over, sedation begun, reports read, checklists checked. They loaded him once again into an incubator and Alex left for the airport for a ride on his "private" jet.

Craig and I left to start our own journey. We drove to my moms to pick the kids up and bring them home to get clothes and belongings for what we figured would be a couple weeks' stay at grandmas house and Craig and I loaded up our clothes and stuff. We brought the kids back and hurried back out onto the road to go to Minneapolis. The trip was fine but we eneded up getting lost and ending up across the river from where we needed to be because everyone assumed that a newborn would be in the NICU, he wasn't he was in the PICU which was about a mile away in a complete different building! We finally arrived at the right place at I beleive 6-7pm. Unfortunately we had by then missed the doctor but another cardiologist offered to go over with us Alex's condition and the game plan for him. We learned more details about the extent of Alex's defects and were told that they would do a procedure called heart catheterization the following day to get an even better look and then surgery would be scheduled. Alex would be the one in charge of when surgery would be, they would follow his lead but the sooner the better.

The hospital made arrangements for us that night for a hotel room nearby and put us on the waiting list for the RMH, we were told that people sometimes wait WEEKS to get into RMH. We didn't really care, we'd sleep in the car if it came down to that. We just couldn't worry about anything aside from Alex's life at that point.

At this point in Alex's life I began his caringbridge journal.

Saturday, January 28, 2006

The beginning

Alexander was so special from the start. He truly was in every sense of the world a miracle. You see, Alex was a Vasectomy reversal baby. Reversals don't really carry a very high chance of success, but less than 6 months after, we conceived our sweet boy.

My pregnancy was very uneventful. It was almost TOO easy. I gained little weight, didn't have any complications.

At 5pm on January 27th, after a day of shopping my water broke almost 4 weeks early. Surprised and scared we got everything in motion to go to the hospital. My sister met us there to take the kids back home but before they left they hung out with us in the hospital room for a while. They left at 11pm to go home and get some sleep, knowing that when they returned in the morning there would be a new baby brother in the family.

Alex was born quickly at 2:32am. He was absolutely perfect having none of the preemie problems we had been forewarned about. He nursed right away, passed his initial newborn exam with flying colors. We spent a few hours with him and moved to the post partum room. They wanted Alex to be in the nursery while we slept because the nurse didn't trust him not to pull some funny business, premature babies can sometimes do ok at first and then start to spiral down after a few hours and have trouble. Fortunately Alex did not.

In the morning Alex was brought to us after the pediatrician gave him a throrough once over. She told us that he looked great and we would most likely be taking him home with us on Monday. We had a little birthday party for him with the kids, complete with cake and chocolate milks. For some reason I needed to make sure that every one of them got to hug and kiss him before they left to go to grandmas house.

After they left Craig went to do his tradition, shopping for the going home outfit. The nurse came in and said that Alex was a little chilly so I should hold him skin to skin to warm him up. I changed his diaper and snuggled him. Craig returned and the 3 of us hung out watching tv for a while.

After a while Craig looked over at Alex and commented that he was very pink. I looked down and thought that he looked purple, but figured it was the lighting in the room. To be sure I leaned him back to get a good look at him and when I did his eyes got wide, he gasped, let out a tiny sqeak of a cry and then his eyes rolled back and closed. By this time Craig was already running down the hall to get some help as I was too stunned to think to push the call button......

Two nurses ran into the room and I was still holding him like that, his head in my hands and I, in a state of almost shock said very calmly "I don't think he's breathing right" I think I fully expected to be told he was fine actually, the heart doesn't let the mind process things sometimes. The nurse instead said "oh no he's NOT!" and grabbed him from my arms. She instructed Craig to grab his IV pole (he was on antibiotics because he was early) and they all took off running down the hall. I sat there for a minute, not quite understanding what just happened and staring after them.

After a few minutes Craig came back and said 'they are giving hime some oxygen". I still couldn't even fathom that something might be seriousely wrong.

After a couple of minutes I knew I couldn't just sit there and wonder anymore and Craig and I ventured down the hall past the well baby nursery and to the window of the special care nursery. I was actually releived by what I saw, a nurse giving him blow-by oxygen. I figured if he was getting blow-by then he was actually breathing on his own and that was a very good thing. They let us in and the nurse said "he's just having a little trouble getting enough oxygen, respiratory therapy is bringing a hood and we'll see if that does the trick" Not wanting to be in the way and it seeming as if everything is well under control and not too scary, we went back to our room.

We sat there and cried for a while, both still quite unsure what was going on but terrified that our perfect world had just been turned on it's nose. I tried to stay optimistic because I know babies, especially early babies can struggle with thier breathing and need some help for a few days. Still the tears woulnd't stop coming.
The midwife came in and I think for the first time I really started to realize that something wasn't right at all. It seemed as if information and no information at the same time was just flying all around us. I remember hearing "we think it's his heart, these things can be fixed" and "we can't get him intubated". Then the priest came. When I saw him my heart sank and I literally sobbed like I had never before. My baby was dying. We were taken down to see Alex and he was very very blue. I was scared of him and cried harder at the guilt of that thought. I looked at them bagging his tiny blue body and couldn't bear to watch my son die in front of me.

I stood there for a minute and the midwife I think kind of nudged me closer. Craig and I kissed his little head and told him we loved him. They asked if we wanted him baptised "if anything should happen".

We went back to our room to await the ambulance that would take Alex to a bigger hospital better equipped to care for him. Numerous people made numerous attempts to intubate him, with no success. Aircraft was grounded due to the fog. The 2 1/2 hour wait for the ambulance seemed an eternity and everytime I looked at the clock it seemed to be standing still. I was dishcharged and the midwife and nurse helped us pack up our belongings. They tried to get me to eat but there was no way anything was going down without coming back up.

Finally we were told the ambulance had arrived. We were taken back down to Alex to see him quick before he was loaded up. His color was worse but when the doctor lifted the mask off his face he let out a tiny squeak of a cry which for that moment I took as his way of saying "i'm ok". The NICU team informed us that they too had been unsuccessfull in intubating him and after we kissed him and told him we loved him they loaded him in the incubator and left with our sweet baby.
We went back to our room where the doctor sat down and told us the news, it was worse than we could have imagined. It was his heart, but they thought he had deformities in his breathing tubes as well, possibly all over his body.... she said "it's very very grave". We were given 2 pictures of him and they helped us to the car and we headed after our baby boy.