Next Steps

Okay, we took this picture a few days ago but it's so cute I had to post it.

Today we made a decision on a childcare provider. We met her this week and talked to several references that had wonderful things to say about her. We feel really good about this decision and felt comfortable choosing her without interviewing any other people (we interviewed her and one other person). So we feel a little relief knowing that everything is on schedule for me to head back to work next Friday, Feb. 1st. While I know that Isaac is 100% recovered, that the doctors have all cleared him to return to daycare, and we have someone great to watch him, it's still going to take some time to transition back and not have my eye on him every second of the day.

We have decided to have Isaac screened by Infant Toddler Services for his fine motor skills. His grasp seems a little weaker than it was previous to our momentous event. He's still able to grab things, but he seems to have a little hesitation. The doctors did mention there is a possibility that oxygen deprivation could have impacted some skills (this can cause problems with some skills like fine motor and not necessarily all skills - so basically it doesn't mean he is cognitively impacted). I've been told though that anesthesia can impact skills like this as well and it takes one week for every hour that you were under to wear off - so that means this could still be due to the anesthesia and he really wasn't impacted by oxygen deprivation. Either way, we decided we'd feel better if we had ITS look at him and give their opinion. They see hundreds of babies and will be able to quickly tell us whether we need to look at further evaluation. My perspective is that if he is eligible for any therapy, it's better to go ahead and get started early.

We've been pretty busy this week with all of this so far in additon to his follow-up with the pulmonologist and some appointments that I have had. It feels like the week has flown by. Our little man continues to bring us so much joy and constant laughter. He truly knows how to win people over - especially mom and dad :)

Second Follow-up

We had Isaac's follow-up appointment with the pulmonologist yesterday at Children's Mercy. She said he looks great and is totally recovered as far as she can tell. She also said that the viral cultures she took from the broncoscopy did not reveal anything... which is great. So this is just one more indicator that Isaac is fully recovered and makes us feel very comfortable with sending him back to childcare. Oh, and he also weighed just over 16 lbs. which means he's gained 2 lbs. since we left the hospital - I guess all those night time feedings are paying off.

Kevin and I are pretty busy looking for childcare for Isaac. We are making lots of phone calls and doing interviewing. We have interviewed two people that seem like possibilities. It's very hard to make this decision. Right now we are trying to decide whether to choose one of these providers or continue searching. I would like to return to work by February 1st which doesn't leave us much time to do more interviews. Please pray that we will have good discernment in making this choice and that we find someone we can really trust. The whole situation is a bit, okay extremely, anxiety provoking.

Isaac is napping better. We began swaddling him again on Thursday and this has really helped. He is usually taking three naps a day now which range from 1 1/2 hours to 2 1/2 hours. He also has slept through the night once. He seems to be slowing down on his eating and getting back to a more normal amount. We have ventured into the world of peas and he seems to be accepting them without the full body convulsions he gave us when we first tried green beans. He is all about pulling his feet to his mouth right now and thinks his toes are his favorite toys.

Overall, Isaac is having the time of his life and changing so fast. We are delighted with his recovery, his current health, and all the fun things he is doing. Personally I'm still struggling with everything that's happened a little bit, and especially the idea of starting him with someone new when I go back to work.

Thanks again to all of you who continue to check in on his progress. We will probably turn this into a page that is just fun updates on Isaac and the family soon.

Follow-up With Doctor

Yesterday Isaac went to his follow-up appointment with his pediatrician. We changed from a family practitioner to a pediatrician due to this incident and tried somebody that a doctor at CMH mentioned. When we met Dr. Austin we realized that she goes to our church and it was an overall great experience. So Isaac is now at the 85th percentile for height at 27 1/2 inches and the 25th percentile for weight at 15 lb 10 oz. We are pretty proud of his weight considering he didn't eat for about a week and a half. She said his lungs sounded clear and he appears to be completely healthy. She reiterated what the doctors at CMH said - that Isaac is healthy, there is no reason to believe that getting a cold/sickness would bring on another hemorrhage, that there is no reason to think he will have another episode, and that it would be nice to not have him end up with RSV until he is recovered from the insult to his lungs from the ventalator and hemorrhage. Apparently it can take up to one year for an infant to totally recover from this, but can be sooner. We also got the go ahead to try some new foods. Isaac has been an all-star over the last week eating his cereal (we started working on this at Thanksgiving), so now we are venturing into the world of vegetables. A picture above shows his response to green beans :) . Strangely enough he kept opening his mouth every time I offered a spoonful of green beans, and also each time made a full body convulsion in response.

Kevin went back to work on Monday, but is still making sure to take time off to come to the appointments with us. Thankfully he hasn't been too overwhelmed upon his return to work and has had amazing support from his coworkers. Isaac and I are doing okay at home. He is still really struggling with naptimes. He seems very resistant to napping and has full out hysterics when I try to rock him or lay him in his crib for daytime naps. This is concerning to me because I don't know how much is behavioral or emotional. It's also really hard to calm him down if I do let him cry. So far we've had no luck with letting him cry himself to sleep since we returned home. Since we've started adding more foods in (on Monday), he's been falling asleep during his morning bottle, but still refuses afternoon naps. Considering that we basically had to hold him for 3 days straight because he was crying so much at the hospital, I'm guessing that can throw a little guy off for awhile.

Personally, I'm still really struggling with everything that has happened. While I know that God's hand was over every piece of this situation and that he made sure Isaac made it through safely, I am still totally broken hearted. Especially since there were zero precursors to the hemorrhage, I can't help but be overwhelmed by the idea that it might happen again. It's very confusing to look at this totally healthy baby, to be so overjoyed that he is doing well and we're having so much fun together, and at the same time feel so worried about him and know what he's been through over the last three weeks. What a rollercoaster! Thanks for all your continued prayers and support.

Life Is Good

It has now been almost a week since Isaac returned home from Children's Mercy. He is still doing fantastic. He is rolling all over the place, although he frequently gets stuck on his belly and squeals for help :) . He is smiling, giggling, and all out laughing most of the time. He has been sleeping and eating well. A couple of nights he got about 13 hours in. He even has two teeth that came through during this whole ordeal. We've gotten out a few times and had several visitors. Since Kevin and I took the week off we have also gotten some much needed rest. We really needed this time with just the three of us since we feel like we lost most of our holiday to Isaac's illness, and we needed some major recovery time after a week and a half of sleeping about 4 hours a night. Basically we wanted everyone to know that we are still doing great. We are soaking up every moment knowing just how quickly it could all be gone. In a lot of ways we are still mentally recovering and trying to reel ourselves back in to participate in the rest of the world.

A couple of steps left on this journey are two doctors appointments. Isaac will see his pediatrician on Tuesday, 1/15, and the pulmonologist on Tue 1/22. Hopefully the doctors will reaffirm that Isaac's recovery is as complete as it appears to be from his behavior. Then we will have to decide when he will return to childcare.... and I will return to work. We are hoping the doctors will help us answer that question as well. I love being at home with him but after missing three months at the beginning of the school year with my maternity leave, being gone again is pretty hard.

Moving on…

Our transition back to home has gone very well. Isaac has got some great sleep in. He responded great to his usual bedtime routine last night and slept until 8:00 am excluding waking up once to eat. He has been eating well, smiling, and playing. It was quite surreal to come home with a baby who looks just like the baby we had the morning of 12/26 and to a home that had been put back together by our friends and family. We picked up Mr. Fin (our dog) and he is trying to rest up after his adventures with Zane and Marley (our friends’ dogs). We keep saying that if we could just forget the last week and a half then we wouldn’t know the difference. To think that a week and a half ago I wasn’t sure I would ever get to hold my baby again and even a week ago I thought we would still be in ICU at this point… We always had faith that our baby would be healed, we just never dreamed that it would happen this quickly. Isaac is such a strong little guy, I still remember the doctors saying that they could support him to help him recover, but truly it was up to him and his body to truly get better. We always thought he was such a beautiful boy and we’re totally head over heels about him, but now we really see how perfectly he was designed. I think Isaac’s recovery is the closest thing to a miracle that I’ve ever seen, and is in no doubt God’s response to faithful and fervent prayers plead on his behalf by so many.

Kevin and I now have the task of emotionally and mentally recovering. We again are so blessed to have everyone’s support. I know that so many of you want to help but I don’t even know how to tell you to help us other than continued prayer that we can move on without living in fear and that this horrible thing will never happen to Isaac again.

And once again I must say thank you to each person who has read one word of this blog, who has thought about my baby for one single second, who has asked for God’s healing hand to touch my baby’s body, who has physically helped us, who listened as we cried over the phone, and who held us through the darkest hours while Isaac was still in ICU. Each of you have truly changed our life and we are forever indebted to you. There are no words to truly express how much all of you mean to us. Our baby boy has brought so much joy and light to our life, it was truly the hardest thing we’ve ever experienced to see his body so broken, and as you can imagine the greatest joy we’ve ever experience to see him healed. We hope that you can embrace this joy as well and let your hearts mend as I know it was so devastating for many of you as well.

Discharge, Party of 3

Isaac had a great night of sleeping and eating so during rounds this morning, the doctors decided to discharge Isaac today. Yea!!! Hopefully it won't be too long before we are out of here. I'll post from home with an update later.

Eating Again

It looks like we are close to ending our stay at Children's Mercy. Isaac seems to be eating again. We tried this morning around 10:00 to feed by bottle and were not successful. However, we got him to eat some cereal (which he's been working on for the past few weeks anyway) and then we tried some sweet potatoes (which he had never had). He really liked the sweet potatoes and was eating them down. Too bad they don't really have any basic nutritional value for babies. So, we made a mixture of formula, cereal, and sweet potatoes. He seemed to tolerate it. And best of all, we decided to take the feeding tube out at that time because we felt like he was making it uncomfortable for him to swallow. Three hours later we tried the bottle again with a little something extra added: bananas. He seemed reluctant at first, but then starting sucking and ate 3 oz. in about 15 minutes! Julie said it was one of the happiest moments of her life. I'm not sure where our wedding ranks on that list, but I was pretty happy too, so I won't worry about it.

The rest of the day was spent seeing all the doctors Isaac has seen over the past 9 days: the pulmonologist (who let us know that they confirmed evidence of pulmonary hemorrhage from the samples from the broncoscopy but didn't have a reason why the bleeding occurred), the hemotologist (who let us know that most of the labs had come back from this morning's blood draw and they didn't find anything); the rheumatologist (who let us know that he didn't find anything from the broncoscopy as far as vascular abnormalities; we also saw the opthamologist today so she could look at the veins in the back of the eye for his vascular condition and she also didn't find anything); and the infectious disease doctor (cultures from lab samples and the broncoscopy still have not returned any findings of bacteria, virus, and fungus). All-in-all, Isaac has seen more than 15 doctors and no one has a reason why his lungs bled. So, unless something comes up in the virus cultures over the next week or we find a congenital disorder through follow-up appointments with our doctors, they're going to give us the diagnosis of acute idiopathic pulmonary hemorrhage; which means?... ta da... his lungs got sick really fast, bled, and we don't know why.

Meanwhile, Isaac is feeling a lot better. He's playing, eating, smiling, and just seeming more like himself. When we look back and see how quickly Isaac has recovered when his lungs were as sick as they were when we got here and they haven't been able to find anything seriously wrong, we cannot help but acknowlege that God listens to prayer. I remember when I was in youth group when I was in high school, when we'd go on service trips and stuff, our youth pastor would always ask where we saw Jesus. At the time, I didn't really get what he meant, but now I look back and realize that we were recalling instances where believers were acting out what it means to be the church - helping others, loving others, and doing it in the name of and because of their love for Jesus. But this, what we've experienced over the past week and a half: being served instead of serving, makes that love of and through Christ much more real to me. I just want to express how truly grateful Julie and I are for all of your prayers, visits, gifts, emails, and calls.

We ask for prayer for rest for all three of us, but especially that Isaac's body would continue to recover and he will continue to remember what it means to eat and nap and play.

(P.S. Isaac and I did get to watch KU play in the Orange Bowl last night; or rather Isaac slept in my arms while I watched KU. Rock Chalk Jayhawk!)

Another Day, No News

After another day of tests, we still have no answers. The broncoscopy looked pretty decent. They found no active bleeding or any red, irritated areas that showed where the bleeding occurred. Everything looked pretty normal. The took a sample to test for virus, bacteria, fungus, and evidence of old blood (although they previously took samples of blood from his lungs when they were suctioned in the PICU). Additionally, according to the nurses, the CT looked pretty decent as well. We'll see if the radiologist's report looks any different. Otherwise, the doctors are running out of tests and Isaac is definitely feeling better. He's still restless, cranky, and in general pretty fussy compared to his normal self. But who wouldn't be after all he's been through, trying to sleep in a new place and nurses & doctors poking, prodding, and disturbing his sleep all the time. But we have seen his smiling face return a time or two today.

There are two last obstacles before we can leave the hospital. The first is that they need to do a significant blood draw tomorrow morning. There are a few blood diseases that are still options and they need to test for them. Plus, with that much blood draw for someone his size, he's at risk to need another transfusion and we want to make sure that's not necessary before we leave. The other obstacle is getting Isaac to eat again. He still hasn't been interested in mouth feedings and is feeding via a feeding tube. So, we'll meet again with the occupations therapist tomorrow morning and see if we can get this boy to eat. If we can get those two things successfully knocked out, then maybe we'll be leaving Saturday or so. We'll have lots of follow-up appointments and stuff, but at least we'll be at home again.

Thank you all for your prayers and kind notes. We just ask that you pray for tomorrow to go well and for us to get some notice that we might be on our way of here.

8 Days and Into the OR

I'm forgetting what I've told people and what I've already posted, and I don't have time to go back through the old posts to see, so forgive me if I repeat myself. Now that Isaac is awake it's much harder to find time to write updates. He's normally so easy going and is so good at chillin' out and playing with his toys. But now he just wants to be held all the time and even that it's enough most of the time. Tuesday night was much the same as Monday night - full of fussing and crying. Fortunately we have some extremely hospitable and incredible caring friends from church, Warren and Bonnie Traynor, who have opened their home up to us. So Julie left Tuesday night and I left Wednesday night to catch some sleep. Last night however was a definite improvement. He slept for 3-1/2 hrs during one stretch of the night. Yea!

They let him eat a little bit yesterday evening via a feeding tube, then he got some gas medicine, some Zantac, some Tylenol and a little Benedryl and he was pretty happy for a bit. Also during the day yesterday he had an echocardiogram and an EKG. We heard today that the echo looked good, so no heart issues. :) At midnight last night, they took his feeds off because he was going in for a little OR action today. He's getting a brochoscopy right now, and is up for a high res CT scan afterwards (they decided to get a high res CT instead of the arterial angio-CT, which is more invasive so that's good). But the broncoscopy requires him to be put under. They are looking in his lungs with a video camera scope to see if they can find the source of the bleeding. They'll also squirt some saline in there and take some samples of the fluid to see what the stuff that washes off looks like. So hopefully we'll hear soon what these tests show. So, the next few hours he's in surgery and recovery and hopefully he won't have to go back on the ventilator and will be back in our room soon. I just heard that the doctor is on her way to me, so I'll post again later.

Please pray that the tests go smoothly, bring us some answers, and don't bring any set-backs. Thanks to everyone for your prayers.

A 24-hr Whirlwind

The last day has been crazy. They moved Isaac out of the PICU yesterday around 5:00. Unfortunately, he was due for some meds & food just as they moved him and he missed them because of it. Once we got upstairs to the floor, they tried to feed him fast as we thought he was really hungry. He's not sucking yet, so they fed him through his tube which gives him no way to tell us that he's done or isn't hungry. Consequently 10 minutes later, dad was wearing all 5 oz. After a few more feeding spat up and a very steadily unhappy baby through the night (he grunted and fussed from 9:00 pm to 4:00 am then all out cried from 4:00 am to 9:00 am... needless to say mom & dad are very tired) the doctors reduced and then eventually ordered a stop to feedings and ramped up his IVs instead. Through the day since then he's gotten less fussy, but has been visited by doctors, infectious disease specialists, pulmonologists, and rheumatologists and really hasn't slept much. He was able to sleep in short 15 or 20 minute intervals.

The doctors now seem to be focused on attempts to find a cause. The know he had a pulmonary hemorrhage (bleeding in his lungs) but do not know the cause. The rheumatologist told us pulmonary hemorrhages are very rare in infants (I think he said 1 in 100,000), the infectious disease specialist said there was a virus or two left to rule out that could cause this, and I cannot even remember all the things the pulmonologist listed; plus the haven't gotten the final virus cultures back. Basically, from what Julie and I can tell is that they have a list of things that can cause pulmonary hemorrhaging and they are going to work on ruling those things out until they find what caused it or we're left with nothing more to test for.

Tomorrow, Isaac is scheduled to at least get an echocardiogram (like a sonogram of your chest) and an arterial angio CT (they inject the dyes in your blood stream and look at your veins and arteries). Please pray that they results would show nothing serious and that Isaac won't get too stressed out on the day's activities. He is very tired now but is having a hard time finding rest. Thank you all for your thoughts and prayers. Words cannot describe how grateful Julie and I are to each and everyone of you for your kind words and thoughts.