Recovering from his first surgery

James has been doing good today and he has recovered well from his surgery. His blood pressure has been a little low so they have added volume to get it higher. He was taken off the medicine that was keeping him paralyzed and sedated. They hope to get the breathing tube out in 2-3 days and will start feeding him and the goal is to do it orally. All the doctors seem pleased and says that he is doing well. Now we just want him to rest, start eating and get stronger and ready for the Norwood procedure. He will have the Norwood procedure sometime between Monday and Thursday next week.

Click to see web site

 

What the Norwood procedure does is to connect the aorta with the pulmonary artery so all blood will be pumped in the aorta supplying blood to the body, secondly a Gore-Tex tube will be attached on the branch of the aorta down to the pulmonary artery to get blood back to the lungs. This way the right side pumps blood to both the body and the lungs. They will also cut all the tissue between the right and the left atrium out so it will be one big chamber.

A big thank you!

Thank you all for the love and support. We appreciate all the gifts and fundraisers you all have given us. We would like to thank friends and family, Eubanks Intermediate staff, students, and EIS Care Committee for all wonderful gifts and donations, my colleagues at General Motors that made a fundraiser for us, and Sisters by Heart (a HLHS organization) for the care package. All help is greatly appreciated and we can't thank you enough. We know this is going to be a rough road both emotionally and financially. So again, thank you from the bottom of our hearts.

Pulmonary Artery Banding

We came in at 6am to the hospital this morning to meet with the surgeon. The surgical team informed us that they had decided to put pulmonary artery bands in James chest. To do this they had to put him under and open up his chest. We met with the anesthesiologist and the surgeon and we received all important information about the procedure. At 11:45 am the anesthesiologist came in to get him for surgery. We were updated after 35 minutes that they were about to start the procedure. One hour later, at 1:22 pm, they were already done. We met with Dr. Forbess in the consultation room and he explained that everything went good and his blood flow was now spreading more evenly between his lungs and the rest of his body, all of his values went up and he will be more comfortable. He was rolled back into the ICU shortly after and we were able to see him for a short while when they rolled him down the hall. We will be able to go back and be with him in about an hour, they just have to get him situated in his room. He still looks the same and we feel so much better knowing we have one step down towards getting his heart better. He is one tough little guy! Thank you all for the support we are getting.

James Johan Persson

James Johan Persson

Time: 11:50am

Date: February 24th, 2015

Weight: 3050 gram / 6 pounds 11 and a half ounces

Length: 51 cm / 20 inches

Surgery

We met with the cardiologist today and she confirmed that James will be going in to surgery tomorrow. She explained what the two options are, either they will just put bands around the pulmonary arteries or they will perform the full Norwood operation. It all depends on how he will do until tomorrow morning, the Doctor will make the call then. We will meet with Dr. Forbess tomorrow morning and the surgery will take place tomorrow afternoon. He will be the second surgery of the day and he will be prepped and rolled in to surgery around 11 am.

First Visit

We are finally able to see him, me and Lindsey are in the room with him now. He was ready to take visitors shortly after 5pm. His heart cath went well and Dr. Nugent, the neonatologist came out and talked to me while describing how everything went. He does have some lung damage, but we can just hope that the new tissue in his lungs will grow strong. It went as smooth as he had hoped and James heart had actually provided more oxygen then expected. His decompression vein had done some good after all, so the Doctors could take their time and be thorough. Now we just have to wait and see how he will recover after the procedure. The next step will be to see how his blood will flow and he will need some pulmonary artery bands put around them so the blood will slow down a little. One more thing, I just have to say that he is a very handsome boy. We love you James!

He has arrived

James Johan Persson is born. He was born at 11:50 am today. He was 51 centimeters which is around 20 inches and weighed 3050 grams, it is around 6 pounds and 11 and a half ounces. He was nice and pink in his skin and he screamed as soon as he was born. His oxygen levels were better than expected, around 80% and was rushed over to Children's Medical Center. He is now in the cath lab getting the heart cath done. They are making a hole between his right and left side of the heart and then blowing up the hole with a ballon. Everything looks good so far.

The 38th week

We are now less than a week away from meeting our little boy. We have an appointment with Dr. Santiago later today and this will be the last appointment before the 24th.

This is how much we have grown...

the belly, and...

the beard.

Reality of Heart Children in Sweden

If you want to see what the Children's heart center in Lund, Sweden looks like you can watch this documentary series. Episode 5 has several English speaking parents so have a look. Just push this link.

http://www.svtplay.se/rakt-in-i-hjartat

Dokumentär serie

Har ni missat dokumentär serien som gått på SVT så rekommenderar jag att ni går in på SVT play och tittar, eller klickar på länken nedan och kollar direkt. Där får vi träffa många barn med hjärtproblen bl.a HLHS och följa deras resa. Om ni tittar så möter ni Wille, han är ett exempel på en pojke med HLHS och har lyckats bra, det är vad vi hoppas på för James. Tre operationer senare och han blir starkare och piggare för varje dag som går. Det är ingen lätt resa dom har haft, men se på dom idag. Jag hoppas vi kommer dit.

http://www.svtplay.se/rakt-in-i-hjartat

Support James' Heart

We have been asked if there is anywhere to donate money for us. We have created our own donation site for any of you that want to help us. We do not know what is going to happen or what kind of help we will need, but we truly appreciate everything you do for us. Thank you everyone.

http://www.youcaring.com/medical-fundraiser/support-james-heart/301709

You can push this link or the picture on the right side to came to the donation page.

Parkland Hospital (English)

We only have two more doctor visits until we go in for the big day! This past Wednesday, February 4th, we went for a weekly checkup with Dr. Santiago to see that everything was OK, and it was. We are still scheduled for a February 24th delivery. Lindsey was actually 2 lbs lighter than last week, but she has gained enough weight so it is normal. They also let us know that everyone that wants to be around newborns should be vaccinated for whopping cough (Tdap vaccination), so I need to take care of that. And for all of you that are planning to be here with us, please get the vaccine too so you can see our baby boy. After the visit with the doctor, we headed over to Parkland Hospital; this is where James will be born. It is located right by Children´s Medical Center, but you have to take the elevator down to the basement to get there. The hospital is pretty old and it is a little run down, but I have heard that they have very good doctors and nurses there. This is where our local service men and women (police officers, fire fighters, etc.) are sent in emergency situations, and is also a trauma hospital where they deal with high risk emergencies. Now that we know exactly where to go when the time comes, we can feel it getting closer…excited, but also very nervous.

Parkland Hospital (Swedish)

Nu har vi två läkarbesök kvar tills vi skall in till förlossning. Vi var till Dr. Santiago igen i Onsdags, 4:e Februari och kollade så allt var som det skulle, och det var det. Lindsey var faktiskt ett kilo lättare än förra veckan, men hon har gått upp tillräckligt med vikt så det är normalt. Jag fick veta att dom vill att man skall vara vaccinerad mot kikhosta när man är runt nyfödda barn, så det måste jag fixa innan det är dags. Efter läkarbesöket hade vi även bokat in en rundvandring av Parkland Hospital som är sjukhuset där James skall födas. Det ligger alldeles intill Children´s Medical Center, men man måste ner ett par våningar till källaren för att ta sig under jorden in dit. Sjukhuset ser ganska gammalt ut och är lite slitet, men jag har hört att det är väldigt bra läkare där. Bl.a så skickar polisen och brandkåren dit sina anställda om dom blir skadade i tjänst. Dom skall tydligen vara ett slags trauma sjukhus som är specialiserade på akuta olyckor med extra hög risk. Så nu har vi fått se vart vi skall vara och hur vi skall ta oss dit när det är dags. Det börjar kännas att det närmar sig, jag ser fram emot dagen med skräckblandad förtjusning.

Rakt in i hjärtat

http://www.svtplay.se/video/2630792/rakt-in-i-hjartat/rakt-in-i-hjartat-sasong-1-avsnitt-4

Följ denna intressanta dokumentär på SVT play där vi träffar familjer som handskas med hjärt problem.

Children's Medical Center Dallas

Due Date

Wednesday January, 28th, 2015, we were back at Children´s Medical Center for new ultrasounds and meetings with the cardiologist. We met with two other cardiologists that were already involved in our child’s heart. After meeting with the cardiologists we met with Dr. Nugent a neonatologist that will perform the first procedure on James. We had a long talk with him and he explained how he would go in through a vessel in the groin to put in a heart catheter. He will open up the intact atrial septum so oxygenated blood will come through to the right side. Then they will put the pulmonary artery bands on to slow down the blood flow. They won´t be able to see how much damage the lungs have and how the heart is working until they have done the heart cath. When this procedure is done James will be in NICU and get rest and plenty of nutrition to get big and strong for the Noorwood surgery. Dr. Nugent was pretty straight forward and let us know that his lungs could be damaged and if they don’t get developed enough they will let us know what they can do and it might mean that he is not strong enough for the Surgery. This is a very serious case, but we must stay optimistic. The doctors at UT Southwestern and Children´s Medical Center had a meeting over lunch and they had discussed our case and came up with a date where they would all be available. February 24^th, 2015 looks like be the due date for James. We met with Dr. Santiago at UT Southwestern who is a high risk OBGYN. She will be delivering our baby. We discussed when and how James will be born. A C-section will easier for the team to get ready for, but regular induced childbirth will be better for my wife. Our baby will be just as safe either way, so we are almost positive that we will induce the childbirth on the 24th. We also had an ultrasound to see how James was doing. He is growing and everything looked great, his weight was estimated to be 5 lbs and 13 oz. According to the new plan James will be delivered at Parkland Hospital in the morning by Dr. Santiago. Doctor Nugent’s team will be in the next room to take over, prepare him for heart catheter and connect all necessary machines. Security will stand by, holding doors and elevators for us to get James to Children´s Medical Center as soon as possible. The goal is 20 minutes, so we will be in a rush. We finally have a date, my wife will be 39 weeks and 2 days pregnant. It is getting close, keep your fingers crossed and thank you for all the prayers.

Förlossningsdatum

 I onsdags, den 28:e Januari var vi tillbaka till Children´s Medical Center och gjorde nya ultraljud och träffade Kardiologen. Vi träffade två andra kardiologer som redan varit insatta i vårat barns hjärta. Efter det hade vi ett långt samtal med Dr. Nugent som är specialist läkare på nyfödda barn s.k. neonatalogi. Han kommer att genomföra första ingreppet på James som kommer att vara en hjärtkateterisering, man gör ett ingrepp i ljumskvecket och går genom ett kärl till hjärtat med en katater som ska göra ett hål. Hålet skall göras mellan höger och vänster förmak, så att syrerrikt blod kan komma in till höger sida. De kommer sedan att lägga band på lungartärerna för att strypa till blodtillförseln något. När de har gjort ingreppet så kan de lättare se hur pass skadade lungorna har blivit och om blodflödet fungerar tillräckligt bra. Vi måste sedan bara vänta tills han är stor och stark nog för Norwood operationen och se till att han får ordentligt med vila och näring. Dr. Nugent var väldigt rak på sak och sa som det var. Är hans lungor skadade och inte blir bättre i rimlig tid så kommer dom att berätta det för oss och det är den värsta tänkbara utgången, för då kommer inte en operation vara möjlig för James. Han sa också att detta är ett mycket alvarligt fall men vi måste vara optimistiska men också beredda på ytterligare konsekvenser. Efter vårat besök på Children´s Medical Center så åkte vi till UT Southwestern där våran förlossningsläkare har sin praktik. Hon är specialiserad på förlossningar på spädbarn med exta hög risk. Hon har bl.a förlöst fyrlingar. Vi gjorde ett ultraljud för att se om James växer som han ska. De uppskattade hans vikt till 5 pounds och 13 ounces vilket är 2636 gram. Allt ser bra ut och han växer som han ska. Vi diskuterade när vi ska förlösa och hur. Läkarna var inne på kejsarsnitt, men sa att barnet mår lika bra om han kommer den naturliga vägen vilket är bättre för min fru. Så vi är nästan hundra på att vi kommer att låta James komma den naturliga vägen. De måste bara vara beredda med läkarteamet så fort han kommer. Alla läkarna hade ett möte under dagen och diskuterade vårt spädbarn och det såg ut som den 24:e Februari kommer att bli datumet för våran James. Han kommer att förlösas på förmiddagen på Parkland Hospital av Dr. Santiago, sedan kommer ett helt läkarteam stå redo i rummet intill och förbereda honom för hjärtkateteriseringen och koppla upp honom på alla nödvändiga maskiner. Sen kommer han att rullas över till Children´s Medical Center där ingreppet kommer att ske. Vakter kommer att stå efter vägen och hålla korridorer tomma och hissdörrar öppna. Det är brottom, de sa att det kommer att ta ca 20 minuter att få honom redo. Äntligen har vi fått ett datum! Min fru kommer då att vara 39 veckor och 2 dagar in i gradviditeten. Det börjar närma sig, håll tummarna.