Sunday, March 28, 2010

Another Setback

Jacob has a bacterial infection so his surgery will most likely have to be pushed back until Tuesday. They don't want to do this major surgery until he has been on antibiotics for at least 48 hours.

Jacob's kidney levels are much better. They said his kidney's are fine, the issue was never the kidneys themselves it was the fact that if they put him on the diuretics then the levels would increase and they didn't want to hurt his kidney function. He is peeing great without the diaretics.

His lungs have been about the same. They told me yesterday that they were not so much concerned about the fluid but more concerned about the lung function. Jacob's lungs were premature even though he was over 38 weeks. Boys tend to be slower with lung development. Thank God they did not do the csection at 37 weeks. They started a new thing with the vent yesterday which increases a thing called "peeps" to a higher number for about 10 minutes every 4 hours. This increases the pressure and conditions the lungs or trains them to do what they are supposed to do. So far he has done great with this and his levels are much closer to where they need them to be for surgery.

Jacob is now back on room air. He had been there before but on Thursday he had a hard time breathing and they had to put him back on oxygen. Now he is fully on room air again. He has the vent to help him out but no oxygen.

We found out the reason this little guys SATs or oxygen levels keep dropping is because of the shunt in his heart. Basically the way his anatomy works is of course different than that of a normal heart. When he gets upset and sometimes when he doesnt, his SATS will drop down to low 60's. They go back up quickly but he was giving us a scare. The nurses said that it is common with HLHS babies and that it will most likely happen still after his first surgery. The only thing you can do is try to calm them and keep them happy. In otherwords he will be very spoiled lol. They said he may turn blue when this happens but we will learn what to look for and when t o worry.

Saying our world is about to change is such an understatement. Life with Jacob will be somewhat complicated and scary but I wouldnt trade it for the world. I love him so much. He is getting more and more active, we are starting to learn his little personality.

He has fallen in love with his binky. He cries when it falls out. I am very happy about the binki addiction because he has learned the sucking reflex. Jacob will not be able to have breastmilk before surgery because his body is not strong enough to tolerate it. They give him nutrition through his IV. Babies that don't get to eat right away tend to loose that natural instinct of sucking and swallowing. Jacob may have more feeding issues than a typical HLHS because he has been on a vent for so long and because he hasn't been able to learn to feed prior to surgery. That is why this is so good. Now he knows the sucking reflex. Now we will just have to teach him to swallow. When he is ready I have TONS of milk for him frozen and waiting.

So that is where we are right now. He is amazing and so strong. He is so beautiful. I love spending time with my little guy. I will let everyone know when surgery is definate but for now please keep praying for him.

Love you Jacob.


  1. Thank you so much for the update! I'm so glad to hear Jacob's doing better with his kidneys and lungs. What an answer to prayer! I'll continue to pray that the vent settings work well at conditioning his lungs to do what they need to do. Let's hope Tuesday is the big day!

    Chase was intubated the day after he was born and for 5 days after his Norwood for a total of 11 days. The entire time, he had a wonderful OT (occupational therapist) working with his gums and mouth so he could continue to work those muscles that weren't being used. When it was time to try a bottle, he went to town!! Maybe ask if there's an OT there who can see him daily if they aren't already. I truly think it helped Chase take to the bottle so well!

    I'll continue to pray for little Jacob and you as you recover from his delivery. God is good -- keep trusting in Him!

    Heart hugs!

  2. I am still praying for that little man and your family. The binky really helps with the sucking and it is also comforting him. My son Adam is a 1 1/2 years old and is still sucking the binky because he has to have another open heart surgery in 2 weeks. The doctor told me not to break him off the binky because it will comfort him. So that is probably what the binky is doing for him.

  3. Wow, you are learning so quickly... all the extra things that go with raising our HLHS kiddos!!! Yes, they are all spoiled... keeping them from crying, so not to see the blue blue... is a issue we all learn too quickly!!! Basically, I had to hold Jilliann 24hrs. a day in her first yr.... or she would cry, so I became her ball and chain... haha, really, I loved it... but it did get a bit exhausting at times! They really like to keep us on our toes, just when something gets easier... they throw in something new!!! Jilly did not get to eat because of her cleft palate, so the pacifier was great for her too! As soon as they allow it, be sure and give the flavor of milk or sugar water so that he does not become defensive of food in his mouth. We did not get to feed Jilly by mouth, her first yr., no one told me to at least give her tastes... I think it is very important, even if it is just the pacifier or finger dipped in something!!! Jacob is such a strong little guy, I will pray that he fights off this inf. and gets to that surgery early next week!!! Heart hugs!!!