Me and my Husband were getting ready to have our 15 year Anniversary.(07) Then we found out I was pregnant. We were in shock and so happy. I even did 4 pregnancy  test's thinking each one was wrong. We already had Mikala who was  going on to 9 years old in June. With a miscarriage before and after Mikala, we were just so excited. I had an ultrasound in my first trimester to confirm the due date and then another one at 20 weeks. He told us that our baby had a diaphragmatic hernia. He explained how the hole had allowed his intestines/stomach to enter his chest, which had caused his left lung to be compressed, and his heart to shift to the right, and that his chances of surviving the surgery were 50/50. All I could do was cry and try to comprehend what he was telling me and my mom. My sister was in the waiting room and when we came out, me and my mom were both crying, we just kept saying he has a hole in his side. I don't think we heard one word the Doctor said to us. The only thing I heard was, it's a boy, and 50/50.

I had to go to Loyola to see a team of OBGYN Specialists and have another level 2 ultrasound. The news we got from them was even worse. They told us he only had a 4% chance of surviving or could go into heart failure and die, and that we could terminate the pregnancy. While crying from this news, me and my husband both said NO.

So during the rest of my pregnancy, I had  weekly ultrasounds, fetal echo's and fetal non-stress tests. They got us in touch with the Doctors from the NICU and we talked to them about what they could do for Dakota after he was born. Problem was they did not have an ECMO (temporary heart/lung bypass machine). So our plan was to have Dakota there at Loyola and if  ECMO was needed they could transport him to Chicago's children's Memorial. Around  37 weeks  I went into Labor and  we rushed to Loyola. The Doctor's did not want him to be born so soon and for him to stay put till he was full term. They said I had 46% water when I should have less, This was due to the baby peeing and not swallowing  like a healthy baby would do, this had to do with his CDH. They put me on bed rest and I had to take medicines to stop the contractions.

On 12-2-07 4:07 AM. Dakota was born emergency C-section. He let out 2 cry's and was taken to the other side of the room where about 17 NICU  Doctors waited for him. Sadly I never got to hold him. We had our Camera and a nurse went and took 3 pictures of him and I then got to see him that way. During the rest of the morning my Husband was with Dakota in the NICU. By 11:30am, the NICU Doctor came to talk to me, saying Dakota was stable and they were concerned he needed ECMO. So Chicago's Children's Memorial Ground Transport Team arrived to the NICU . I asked my Husband to go see if they could bring him to my room before they left with him. They had no problem with that. And by 1:00pm, they came in my room with Dakota in a small portable transporter along with My Mom, Sister Corie, My Husband and Mikala and my niece Madison. I sat in the bed crying as I got to hold his hand through the hole in the transporter. I kept telling him, Mommy's here Dakota and I love you so much. My Husband got to ride with them to Chicago's Children's Memorial. I told him not to leave Dakota's side and to keep calling me on what's going on. The first 3 days, they told my husband that he seemed to be going the opposite direction of needing ECMO. But this was just what they called the honeymoon stage. There is a duct in the heart that closes after a few days. Once his closed, this is when he started getting worse.

When I got to leave Loyola on my 3rd day we rushed right to Children's to see Dakota. I could not wait to see him, thinking I would be able to kiss him and hold his hand. When we got to his room I just started crying seeing him laying there. He had this ventilator in his mouth, his body was being shaken by a machine they call the oscillator, with all kinds of things hooked up to him. I was in shock and was standing by his bedside crying. One of the Doctors came over and got me a chair to sit on, because I was close to fainting. That's when they started talking to us saying Dakota was getting worse and needed ECMO. We signed the papers, and in just minutes,they had O.R. in his room and got him on ECMO.

We were so glad that the 1st time they weaned him down on ECMO, he did great and so he was only on ECMO 9 days. The day after he was off of ECMO and the oscillator, and put on a regular ventilator. The doctors got very concerned because he was moving back words again. They put him back on the oscillator, while giving him a medicine that opened the Duct in his heart to help with the pulmonary hypertension (severe pressure in his chest) and it worked. He was doing great again. The doctors then were on stand by for the open window to do his Surgery. He was so puffy and had so much fluid on him, that they thought it was best to wait until he was stable and having no other set backs. As of 12-31-07 he had lost all the extra fluid he had on him and they set the date for his surgery 1-3-08!

His surgery lasted 2 hours and when the Doctor came in the waiting room to talk to us, He said that Dakota's hole in his diaphragm was so big that he had his small and large intestines/ stomach and spleen in his chest. He had to use a gortex patch to seal the hole. He told us that Dakota had some muscle in the back but none in the front, so he had to attach the gortex patch to part of his ribs. He told us that Dakota was a very lucky baby and that he was surprised he lasted as long as he did. When the Doctor told us this I cried tears of joy, saying to my husband that the power of prayer is a very powerful thing. And of course, thank God for the Doctors for keeping him alive and with us. We found out also the next day that Dakota's left lung is close to a normal size, that he had more lung mass then they thought he had. Out of all of this, the hardest thing has been trying to get Dakota off of the ventilator. The 1st try only lasted 3 days with a C-pap in his nose. The second try he lasted one day and the third try was not even 3 hours. His blood gases would not come back so good, and in the end they had to take a small camera down his throat to see what was wrong.

They found out he had floppy airways called  Tracheomalacia and Bronchomalacia. So they had to do a Tracheotomy (trach) in his neck. At first when they ran this by us we were not so sure about this idea. The doctors told us this was the only way to help him breathe without gagging. And that keeping the ventilator in his mouth was not a good idea.

Dakota got his trach  3-2008 With vent support,  at 4 Months old Dakota was moved from the NICU  to the transition unit on the 9th floor at children's. where he stayed until 9-2008. We had to go though a lot of learning in order for him to able to come home.  vent classes, trach care, NG care, and much more. During that time we were also waiting for the our PEDS home Health agency to get 5 nurse's on Dakota's case so he would be able to come home, Since Dakota had a trach and at the time needed to be on the vent,  he could not be sent home unless we had home nursing. Dakota lived at Children's memorial Hospital from 12-2-2007 and came home for the 1st time on 9-3-2008.

 

Dakota  started weaning off the vent in march 2009, starting with 15 mins two  times a day. due to him not gaining the weight needed to wean off the vent longer then a hour a day by June 2009, We were able to talk to his G.I Doctors and found out he was able to get a mic-key button and Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) . Dakota started gaining weight and by June of 2010 he was off the vent all day and during naps, only  on the vent at night when he was sleeping.. In 10-2010 at pulmonary clinic Dakota's doctor took him off the vent during nights. saying bye to the vent forever.

 

12-2-2010 Dakota turned 3 years old and also started preschool..

12-22-10  Dakota stayed over night at children's with a cap over his trach. on 12-23-10 We got to say BYE to his trach.

4-2011: Dakota had his stoma closed..

Birth to age 3 years old.. copy right 2010 www.codysfoundation.com

 

 

Monday, January 23, 2012