Jake and Jake

As most of you know, it was very difficult to name this little baby. In the end, we teetered between Jacob and Oliver, and actually he was Oliver for a little while. The main reason we decided to name Jacob Jacob was  because of my brother Jacob. He is a soldier, serving in Aghanistan. And I honestly could not think of a better story to be able to tell Jacob someday of why he has the name he has. To be named after someone who loved and served their country, not to mention one of the kindest-hearted people that I know. He was always the sweet, peaceful brother, and for anyone who knows Collin, we need a peaceful little guy. 

Well tonight, we were able to welcome home my brother Jacob. He is home for two weeks, and it was wonderful to me able to see him. And he was able to meet and hold his little name sake.

 

I love how cute these two are, and love even more that little Jacob smiled while his uncle Jake was holing him.

We pulled his feeding tube today. He is eating really well, and does better and better each day. I am hoping to see that he continues to put on weight. It was hard to pull our safety net. We are keeping track of the feedings still, and I know that if he needs it, we can always put it back in. So crossing our fingers that he continues to do well with feeds, and that he continues to gain weight. I might take him in on Monday and weigh him, to see how he is doing. I know it is not completely necessary, but I know it will ease or worries about how he is doing. I guess you never get over the new baby worries.

We see cardiology this week, and Jacob has another doctors appointment the day after. I do not foresee any issues, just need him to continue to gain weight. We love his little sweetness, love the smiles, and love seeing Collin and Jacob connect more and more as brothers. Some moments are hard, but we just try to make Collin feel important and know that this will get better with time. 

Adjusting

 You would think I would take a gazillion pictures since being home, but honestly between pumping, Collin, Jacob, and trying to survive each day, a lot of life has gotten pushed to the back burner (and sadly pictures/blogging/etc were what we pushed back!) It was wonderful to be able to leave the hospital, although there was still a little guilt in leaving some friends there. 

We got Jacob bathed (had to take pictures of his little golden curly locks)
and dressed to go home. 

After all the paperwork was completed, we got out of the little house on the hill. We came home on Sunday (late afternoon) with just a feeding tube and oxygen. It was neat to come home on Halloween, because it is the three year mark of Ryker having his open heart surgery. Also, we bought a little outfit for Jacob, and prayed he would be able to wear it. I know it was silly, but I kept thinking "if he is able to wear this, it means everything will be all right." Because to me, it meant he would be healthy. I know, it does not make a lot of sense, but it was just a miracle to go home.

 I will have to put him in the outfit again and take a picture because this was the only picture I took of going home since the camera was accidentally packed away. After getting a little settled, Mike left to get Collin and have some family dinner, sans Jacob and I (it was really nice to rest.) Collin is pretty indifferent towards Jacob, but seems to be warming up to him. 

He thinks it is pretty funny when Jacob is ready to eat and sticks out his tongue.

It is funny, because people think that the hard part of being home is Jacob. And really, Jacob does not really cry, is pretty peaceful, and really just wants fed, love, and sleep. Collin on the other hand, is nearing the terrible twos, along with feeling and dealing with a definite adjustment in his world. He is throwing more tantrums, screaming at the top of his lungs, and just having a rough time. That is probably the hardest part of all of this, and I am praying it will get better. So any tips would be appreciated, or just telling me it will get better will grant me an ounce of sanity.

You are probably wondering what this is. This little thing (there is a better picture two below) is what popped out after they delivered Jacob. Ironically, the doctor that pulled this out also has the name of Jacob and may or may not have swayed our decision in naming Jacob. We told the docs that whoever found the shunt would win a prize, and what better prize than having a baby named after you (well we let him think that at least!)

The shunt that was placed in Jacob's chest while in-utero.

You can imagine why this would be so painful to have placed, as it is big, and why Jacob yanked it out (I do not blame him one bit.) But this little piece of plastic with the metal tips truly is the reason we have our little miracle. Were it not for this, I am not sure Jacob would be here today.

These are Jacob's two week pictures. His little umbilical cord came off, and so he was able to get his first sort of bath (we still can not let him soak in the water since we want his incision to heal. something I will have to take pictures of after his next bath.) He is just sweet, loves to be held and really such a good baby. I know it may not last, but I am just enjoying our little miracle and his strong sweet spirit. 

Off to bed now. Love the sleep.

The "H" Word

We are nervous to even say the word, but there is talk of our being able to go home this weekend. So we were moved to the infant surgical floor yesterday, which means I get to be a full time Mommy to Jacob *smile*. He is doing really quite well, although since moving to a higher altitude, (from the 2nd floor to the third floor) he has needed just a little whiff of oxygen. We are hoping that once we get to go home, to a lower altitude, that we will be able to discontinue the oxygen. He also has a feeding tube (an NG tube.) We feed him what he will take, which is anywhere from 20-30 ml typically and than feed him the rest through the NG tube. I actually learned tonight how to put one in. It scared me spitless, but was actually not bad. I am thinking we may be home by tomorrow. I am not 100% confident in this, but I have a feeling it will happen. The hydrops/congenital chylothorax has so far been a non-issue. And Jacob was able to get his chest tube out today, along with his PICC line. So in the last three days he has had his ventilator out, his IJ line, an arterial line, an IV, a chest tube, and PICC line all removed, and now gets to work on moving off the oxygen and feeding tube. He will come home with the NG tube (hence the reason I was taught how.) We also passed off giving his meds along with Jacob passing his car seat trial. He is our little miracle.

This last Wednesday was Ryker's third birthday. I feel bad because we did not get a chance to celebrate Lilly's or Ryker's birthdays, so once we get home, we will have to do something special in their honor. We miss Ryker, although I do not think there has been a day that has gone by that he has not been on our minds, especially being somewhere that our only memories of Ryker linger. I know he and Lilly have watched carefully over their family, especially Jacob. We love you Ryker and miss you.

I will try to be better about posting, but things are busy and about to get busier. Thank-you for the prayers. They are very much needed, appreciated, and just a wonderful support. I would also like to ask for prayers for my little brother's wife, my sweet sister-in-law Lindsey. She found out this week she has thyroid cancer, and I know they could really use the added prayers.

Poor Little Guy

 Our little Jacob had his heart surgery this afternoon. They were able to successfully remove the narrow part of the aorta. The surgery went perfectly, and seeing him was not nearly as bad as going to see Ryker after his heart surgery.  It was pretty hard to hand him over for surgery and so many emotions resurfaced of saying goodbye to him that we experienced with Ryker. I do not think it gets any easier sending a child to surgery.

 He was still under the effects of the anesthesia when we were allowed to go back so he was pretty snockered. He will rest tonight and than first thing in the morning they will start trialing him off the ventilator
, and than start removing lines through the day. There was scar tissue in his lungs so the surgeon had to actually loosen his lung from against the wall of his chest. He feels it is from all of the drainings and than shunt placement. All the nurses and doctors assured us that he is doing perfect and that with this surgery, these little ones are typically home in 3-6 days. I could not believe that we could have Jacob home next week.

We brought Collin up to see his little brother Monday night. We will not be bringing Collin up again before Jacob comes home, because Collin is not the best PICU/CICU visitor. Hopefully things will go more smoothly once Jacob comes home, but I know it is going to be an adjustment. I will update more tomorrow but hopefully Jacob will sail through everything and we will be back to feeding, holding, and loving on our little guy. So

mnnmnm

Another Update

I know I have not updated and I know that it this should have pictures. But sadly the internet in the hospital is slow. Once I am home tomorrow I will update pictures since I think our little guy is so cute! Nurses keep walking by telling us how beautiful he is and apparently there are many volunteers to hold him. Jacob is doing awesome even on the prostaglandins that keep his little PDA open. Ryker had to be intubated at this point, but Jacob is proving to be once tough little guy. He has also been able to eat, and sometimes does awesome, sometimes, does okay. He has eaten pretty well this afternoon and made up for the sleepiness during the day. He usually eats around 20-25 cc's, and seems to really be getting his role in eating down. We love feeding him. He came off the bilirubin lights today so now we can freely hold him. He loves to be held. We will know more about when the surgery will be on come Tuesday and hopefully will be talking with the doctors tomorrow about everything. The surgery is pretty cut and dry. Jacob will have to be intubated, but hopefully will only be intubated for 1-2 days. And than hopefully will be able to resume feedings and we will be able to come home soon after. We love our little Jacob. It will be hard coming home tomorrow and not to be able to bring him home. But our separation will be short. I had better get to bed. We have been going over to feed our little guy every three hours and I am pretty exhausted. Thank-you for the prayers. I will probably post pictures tomorrow once we are home!