Moving On

Sorry it has been awhile since I have written. So much has gone on. We are half way through our move and after a few days of going sideways, Joseph is moving forward. It took many adjustments but Joseph is doing much better. When he does better---his parent do better. Let me back up to a turning point on Tuesday.

On Tuesday evening I was ready to just unhook his tubes and take him home. The frustration of not seeing improvement and the lack of clarity as to why he was not improving, was getting to be overwhelming. Also, by Tuesday evening, it was clear that he was not coming home for at least a week. His electrolytes were still out of whack, he was still breathing rapidly and his heart rate was elevated. On the monitor above his bed it gives a constant read out of his heart rate, respiration rate, blood pressure, oxygen saturation and carbon dioxide level. Being a techie person, I have become obsessed with watching his "numbers." The doctors who only see him in short spurts during the day look closely at his lab reports and his charts. The nurses are the ones who constantly say "don't always look at the numbers---Look at the baby!" They are trained to look first at the baby when an alarm goes off. It is the nurses (and Mary) who pointed out that since Sunday Joseph looks better. And that is true---Joseph looks better. The system at Children's is set up so that the nurses have a strong input in the care and decision making regarding Joseph. There are three doctors during the day who consult and discuss with the nurses regarding the children in the NICU. It is interesting to watch. The nurses are on duty for 12 1/2 hours and they see the trends and often have the best information on the baby. The doctors write up the orders but it is almost always the nurses who carry out the orders. They see how the babies react to medicines and treatment. Don't get me wrong -- the doctors are great---but they are great doctors in part, because they listen to the nurses, parents, respiratory therapists and other caregivers.

On Tuesday evening it was the nurses who said "enough." The doctors agreed. The parents, after having it explained three times, agreed. (OK OK--Mary once and me three times) Time to make things easier on Joseph. They would put in what is called a "PICC" line. A PICC line is a more recent development using a line which is inserted into one of the large veins in the arm (usually near the bend of the elbow) from where it is threaded into the superior vena cava. (it goes through the arm and up towards the chest) The initials PICC stand for peripherally inserted central catheter. This is necessary because the heart medications were making it nearly impossible to put in standard IVs. The IV on Tuesday afternoon took four tries. An IV on an infant only lasts a few days at best, but a PICC line can last a month or more. The PICC line was put in Late Tuesday evening and since then Joseph has steadily improved. The PICC line lets them put in more nourishment to help him grow and to balance his numbers. He is currently getting two types of nourishment through the PICC line and Mary's milk through an OG tube. This combination is letting him gain the weight he needs for surgery. When I saw Joseph Wednesday evening he looked much better and all his numbers had improved. After being fussy like a regular baby and after a diaper change he fell soundly asleep in my arms. A small slice of heaven for a frazzled dad.

Where do we go from here? We did get word yesterday that his heart condition is getting worse sooner than expected. It is increasingly looking like he will not come home before he has heart surgery. We hope to get some news on this shortly. The time is coming to start gearing up for that surgery. We are not ready for that yet but with all the support and prayers and love that is surrounding our family, we will be.
Peace
Kenny

p.s. I know I promised pictures but they are on the computer that is packed away. Tomorrow for sure.

An OK Day

Monday was just OK. Nothing great and nothing real bad. They are still trying to find the right balance for his electrolytes. It is getting better. His blood count dropped a little so he received some blood to boost his count. I had donated blood in case he needed any during surgery. His surgery went well and he did not need any blood so mine was still available. Now he has 60cc's of my blood pumping through his body. I think his IQ went up 10 points after the transfusion! When I visited him last night he was working on geometry. (ok--that is not that funny but I am tired and it made me laugh) I forgot the camera when I visited him last night so I do not have a new picture of him yet. We will get a picture today.
The doctors are hinting at him going home before the heart surgery. When he goes home we will have him in hiding. Joseph will not be able to have visitors and we cannot take him out of the house. (I can almost hear the collective groan) We have to monitor him on a constant basis. They told Mary in the training that you have to be able to get to him within 10 seconds or the alarm goes off. Talk about nervous parents!
Due to our pending construction we are moving out this week and into my parents home. This way Joseph does not have to be moved twice. I really want to thank my mom, Mary's mom and our sisters who have been helping get everything ready for the move. Once again this is proving to be quite an adventure.
peace

Kenny

Two Steps Forward One Step Back

The good news is they were able to remove all the tubes that assist him with his breathing. He is fully breathing on his own. However, Sunday was not Joseph's best day. Just when he was making great progress he went backwards. It was very frustrating. The heart medications are mixing up his system and making it hard to find a balance for his electrolytes. Joseph began having "emesis." That is the fancy medical term for barfing. He has to work hard to eat and then all that energy is wasted in a few seconds time. They put an oral feeding tube back in and are feeding him slowly through that. So, he lost one tube and gained another.

They worked all day with him to get him balanced. He lost weight and looks more frail. We are going to have to get used to this. His heart medication keeps his fluid levels down to make it easier for his heart to pump. As we understand it, he may be getting stronger but looking weaker. We still do not know when he will have heart surgery. Please keep the prayers up for him. He really needs strength and a fighting spirit. This leads to the picture of the day. When Joseph first got into Children's he was visited by two wonderful Carmelite Sisters. The Carmelite order has been praying for him since before he was born. Saint Joseph is the "protector" of the Carmelites so there is a strong connection. On the left is Sister Mary Joseph and on the right is Sister Madonna Joseph. So there are three Josephs in this photo. With friends like that we are sustained on the bad days and look forward to better days ahead.
With gratitude,
Kenny

Two weeks old and undeterred

I am starting this update with a brief synopsis because this blog began just after surgery. I hope this helps.
On Sunday morning at 10:38 Joseph Edward Lund will turn two weeks old. Having lost all sense of time through this journey, I find it hard to believe that much time has passed. Joseph was born at Verdugo Hills Hospital in fairly normal fashion. (In this picture he is literally a few minutes old) The nurses, however, quickly sensed that he was laboring too much to breathe. The doctor was called in and phone calls were made to get him transferred to a Neonatal Intensive Care Unit. Several hospitals were called and just like Mary and Joseph 2000+ years ago, my Mary and Joseph were told there was no room at the inn. Finally, there was bed found at Glendale Adventist Hospital. Mary had to stay at Verdugo and I went with Joseph to Adventist. Separated from mom only a few hours after being born is a tough day! The two day stay at Glendale Adventist was inspiring to see how much the doctors and nurses care for the most vulnerable little ones. The doctor from Adventist still calls to check on Joseph's progress. Joseph received top notch care but after he was put on a breathing tube and his heart issue was identified, it was clear he needed to be at Children's Hospital for treatment. (this is a picture of Joseph at Adventist and me holding his mouth open to help him breathe) After many prayers and many phone calls, a bed was found for Joseph at Children's hospital. It was a HUGE relief to be where the best care in the world for children can be found. The amazing Doctor Geller, who had performed surgery on our daughter Megan, could finally help us with Joseph. We found out later on that he played a big part in getting Joseph admitted. Joseph was diagnosed and surgery was done. Now we are in this strange time of recovering from one surgery and trying to strengthen up for the next one.
Joseph did well this Saturday and both Mary and I were able to feed him from a bottle. He is gaining weight and while not perfect, his numbers continue to improve. He has been more alert and awake. He is comfortable even though he is completely off all pain medications. The doctors are trying to balance his medications to help his heart and to let him grow strong for his next surgery. Here is his most recent picture:
The next few days are very important and will dictate when he can come home. It is also important for us as we get ready to care for him without the nurses nearby.

Thank you for the constant prayers. It continues to sustain Joseph and his family.

Kenny


p.s. if you would like to leave a comment, click on the word comment at the end of the update. When it asks for "identity" click on "other" and then just enter your name and comment.

Joseph is making strong progress. Saturday Morning Post

Joseph continues to exceed the expectations of the doctors. They are beginning to talk about when he can go home. He is off the IVs for fluid and medicines completely because he is drinking from the bottle so well and able to swallow his medicines. This was very unexpected and everyone involved is thrilled about it. We were able to hold him , feed him , and begin to feel "normal" with him. The nurses are beginning to teach us how to care for him once we go home. We are learning to suction out his nose tubes and to put on his monitors. Due to his heart condition we have to monitor his heart closely and because of his nasal tubes we have to monitor his breathing.

One of the many many great things about Children's Hospital is that they work with the whole family. They have been so good to us and the girls. Yesterday they let each of Joseph's sisters hold him. You can see how proud they are. It was the first time they were able to hold him and they were so excited. The rules in the NICU (neonatal intensive care unit) are very strict and you can see in the pictures that the girls have to wear gowns. They also have to scrub up to their elbows for two and a half minutes. It was very educational and they have learned how important it is to wash your hands to keep from spreading germs. I think one or two of the girls may end up in the medical field after all this.

We will write more about Joseph's heart condition in a later post but we wanted to explain his nasal condition. It is called "Choanal Atresia." The medical definition is "a congenital bony or membranous occlusion of one or both choanae, due to failure of the embryonic bucconasal membrane to rupture." The choanae is the part of the nasal passageway that connects the nose to the back of the throat. One of the many miracles that takes place before the baby is born is the rupture of the bucconasal membrane. At just the right time in development this must rupture in just the right way so that the airway can form. This did not happen in Joseph's case and so his airway was blocked. This occurs once in about 11,000 births. One of the doctors commented that the more they learn about the building of a baby the more they realize what a miracle every healthy baby is.

For now we are happy with our miracle and thankful that in time he will be fine and running around the yard with the other children.

Love,

Kenny and Mary

Joseph can drink from a bottle!

Yesterday was a much better day than Wednesday. Joseph settled down and was able to drink from a bottle. That is "impressive" according to his doctor. He has to coordinate breathing through his nose, getting the milk, and swallowing. Late last night I was able to feed him two bottles of milk and he rewarded me with a loud burp! They were able to lower his pain medication and he is tolerating the rigors of nose suctioning every 4 hours. He is able to keep his heart rate and respiration rate down -- except for when they suction, but hey my heart rate and respiration rate would go up if they stuck a vacuum in my nose!

You are sure to notice more tape on his head. After finally getting the breathing tube out they decided to put an IV in his head. This may sound terrible but it is less pain and they got a better vein. It is very common in the NICU. They also added a device called a "vapotherm" that keeps the air he is breathing warm and wet. It makes it easier for him, but adds more tape to his face.

This picture is of Al. He is one of the great Respiratory Therapists. He is also a friend from our church and school. He is one of the many many people who have been so awesome to Joseph. We cannot say enough about the great care he is receiving at Children's Hospital. We will also never be able to thank them properly. So if you are saying prayers for Joseph we ask that you put in a word of thanksgiving for the doctors, nurses, respiratory therapists and all the people who care so much and do so much for the children who find themselves there.

Finally, several people have said they want a picture of Joseph with his eyes open. So here are a few more from last night. We agree that he does look much better with his blue eyes open.


Love ,

Kenny and Mary

p.s. I found the setting that lets anyone leave a comment. So, feel free to leave a message for Joseph and family.

Update 8-22-evening

Joseph had some success today and his breathing tube in his mouth was removed. Here are the before and after pictures. It is great to see his face without the tape moustache. He is not as yellow as he looks ---that is just the flash. He is learning to breathe through the tubes in his nose. It is taking a little getting used to. He has pain from the surgery and it makes him take too many short breathes. "Tachypnic" is the new medical term I learned that means he is breathing too fast. They doctors and nurses are watching him very closely. He calmed down after a few hours but then it came back. If he can slow down his breathing then he will be able to feed through is mouth rather than through a feeding tube. Today was the most frustrating for us because we could not hold him and it was hard to just watch him. We did get to hear him for the first time in eight days but his cry was very hoarse from the breathing tube. We do not know when his heart surgery will be yet. It could be in a week or in as long as three months. The cardiologists check him every day and it will all depend on how he is doing. They were happy with how well he tolerated the first surgery. Now they are watching his recovery and how well his heart is pumping blood. During surgery yesterday Mary commented that she felt a wave of peace surrounding us. I have no doubt that it was all the prayers working to bring us peace. We are very grateful to have so many prayers for our family.

God Bless,

Kenny

Joseph is resting comfortably!

Joseph entered the surgical ward at 10 a.m. this morning. The surgery began at approximately 10:30 a.m. and lasted one hour and forty five minutes. Joseph returned to the NICU at approximately 1:45 p.m. and is resting comfortably. During surgery, it was discovered that both nasal passage ways were indeed closed. After the passage ways were opened, two tubes were inserted and they will remain in his nose for three months. His breathing tube will be removed either tonight or tomorrow morning. At that time, he should be able to nurse. It appears that he may need the holes in his heart repaired sooner than anticipated. We will know more as he progresses...but for now, we are happy to have the first stage of Joseph's recovery behind us!

With great appreciation and love,

Mary and Kenny