soooo big

Gabe and I had a discussion at about 4am this morning. I was rocking him and telling him all the reasons why he needed to get better so we could go home. I told him about his fish cave (baby einstein gym), animal mobile, walks in the stroller, evenings on the deck, etc....I hope it works. The impedence study didn't really show a correlation between his reflux and oxygen saturations. I don't really buy it though and neither does the doctor. They put an NJ in and he seems much more comfortable. Pulmonary thinks he sounds a little course in his lung bases and think his chest xray looks viral. ENT wants to rule out floppy airway as the potential reason for the oxygen desaturations. They will be doing a double scope together next weeks to check it all out. Sedation makes me a little nervous, but I know they need all the info they can get. He is still requiring 1/8 to 1/4L of oxygen. We tried no oxygen yesterday and he lasted about 3 hours before he started hanging out at 70%. They may also do a sleep study next week to look at apnea. As far as the blood in his stool goes, GI did a barium enema to rule out Hirschprungs (sp?). It came back inconclusive. Since switching to the Alimentum, Gabe hasn't really had any blood in his stools. They're leaning towards it being just a milk protein sensitivity which babies often outgrow. I can deal with that. The doc told me that if after a week, I notice blood in his stool again, to call him and they'll do a biopsy of his GI tract if necessary. It's kind of just a waiting game to collect as much data as possible. The weekend will probably be slow.
Justin and I met with the First Steps Coordinator on Thursday. I also met the director of the Thomas Center for Down Syndrome yesterday. I felt better after talking to both of them. I know this is a hard stretch for us and they say the first year is the most difficult. It's good to know that Gabe will be in good hands with these services.
Gabe is so close to smiling. He loves to play "So Big"...it cracks me up.

Picture from Katie's wedding courtesy of Erin...8/22/09

Lots of work up

Gabe is being worked up for a variety of potential diagnosis. He is still requiring oxygen and what we suspect is reflux and aspiration is beginning to take a toll on his pulmonary function. They did an impedence probe study to look at the reflux issue and the results are pending. Pulmonary and ENT are involved to look at his airway. Sometimes in Down's Syndrome their trachea can close off related to poor muscle tone. They may do a bronchoscopy and sleep study if they think this is an issue after the reflux is addressed. This morning, we also noticed blood in Gabe's stool for the second time. GI is now consulting to look at what could potentially be causing feeding intolerance and blood in his stool. They will need to rule out Hirschprung's and food allergies. They pulled his NG tube and put in an NJ tube today. An NJ tube is inserted thru the nose down to the jejunum part of the intestines. With the tube being inserted this far, he should not reflux. The down side is, feeds have to be continuous from a pump. We are hoping to be able to offer Gabe 10ml of formula from a bottle a couple times a day. These tastes along with a pacifier will hopefully allow him to continue to use those facial muscles that will be so important for his speech later on even though he will be getting continuous feeds. They are also switching his formula to a milk protein free alimentum in case of allergy. Overall he had a good day. He seems comfortable and was awake, alert and playful. We have to stay patient while we're collecting all this information. Thank goodness we are at a great Children's Hospital and live so close. Special thanks to Kelly for organizing the Buddy Walk in Gabe's honor. https://www.syssolutions.com/CincinnatiWalk/Main/MyTeam.aspx?Reset=Y

Gabe just can't stay away from his second home.

We're back in the hospital. Gabe looked great last Wed. and Cardiology said they would see us in 2 weeks. On Thursday, he started having some upper airway congestion. The Pediatrician told me he may sound congested from time to time due to his narrow nasal passages. The home health nurse came that evening and said he seemed fine. On Saturday I started getting a little concerned. His retractions became a little more pronounced. His lungs were clear, no temperature, good color, good cap refill and he was playful. He started nasal flaring Saturday night and I started to worry. I thought I'd watch him close and maybe call Monday. On Sunday morning he started looking pale. Still no temperature, typical intake and output, lungs clear, labored breathing continued, nasal flaring had stopped. I talked to some other nurse's to get their opinion b/c sometimes my mom judgement clouds my nursing judgement. He continued to act himself, so I decided to keep watching him close and call Cardiology first thing Monday morning. Sunday evening during feeding, he looked really red faced. When we were securing the tape on his NG tube, he started crying really hard and looked a little purple-ish around his lips. That was the final straw and we brought him to the ED. When we got here, he was looking great and his O2 sat was in the 90's. I think Justin (and myself) thought I over reacted again. As they were getting ready to discharge us, Gabe was sucking on his pacifier and desated to the 70's. They decided to watch him during a feeding and he desated to the 60's. That bought us an admission. Since then, he's been on oxygen. He's on 3/4 a liter and is holding steady in the upper 80's to 90's. They're trying to ween him, but haven't had much luck yet. I'm glad I stayed on top of it and caught it pretty early. I wonder if he had a brief desat 2 weeks ago when I rushed him to the ED and he ended up being fine. They did a nasal swab to see if he has a virus. I don't know how he could have a virus...we don't take him anywhere and we wash our hands like crazy. They're having speech work with us and making notes if he desats with feeding or refluxing to see if there may be a slight aspiration component that didn't show on the video swallow study. They did another Echo to look at his pulmonary hypertension and left ventricular shunting. We're waiting for all these results to come back. Gabe seems very worn out today. He still looks pale. He desated to the 60's today while feeding, turned a little dusky and then recovered, and that was with 3/4 liter O2. Poor little guy. He looked great 5 days ago and things were on the up and up. 2 steps forward...5 steps backwards...this is getting old.

ugh...I'm tired

Doctor's visits are exhausting. I went to my OB today and got clearance for normal activity. I now no longer have any excuses for not mastering the hills of Fort Wright with a stroller. She also was nice enough to waive the cost of her cord blood collection since medical bills are expensive (even if you're only paying co-pays and meds for now). I then rushed to Gabe's cardiology appointment. The fluid accumulation settling around his liver has improved some thanks to diuretics. His work of breathing is a little better, and his oxygen saturations are in the lower 90's instead of the high 80's...these are all good things. He still has really bad refulx, so they gave me a Rx for Reglan...here's to hoping. His weight was up a little bit and he's now at 8lbs 13oz. This isn't as much as they want, but at least it's up. I went out last night and exchanged my regular similac for Similac sensitive, only to realize when I tried it today that it has a gritty kind of texture when it is fortified to 26cal and it will not go thru a nipple or feeding tube. What a waste of $30...back to regular Similac. Hopefully Reglan works. They also drew some blood work to make sure Gabe's heart is perfusing enough oxygenated blood to his digestive track and other organs and that's not the reason for the vomiting. I hope the labs come back okay. The ventricles are still an issue. There is no good reason for their poor pump function other than that he is still recovering from whatever event he had at the beginning of the month. I'm the type of person that needs a good reason. If the ventricles would improve I feel like alot of my worry would be gone b/c they could then confidently do surgery without giving me a bunch of what if's and maybe's and we don't know's. All these unknowns are testing this worrier's strength. Gabe is crazy cute. He was a very good little boy for the docs today.

long and overdue

So we've been home for over a week now. Gabe has his NG tube still. We are offering him 70ml in his bottle every three hours and whatever he doesn't take, we put down the tube. We went to the Cardiologist on Wed. His weight was up slightly, but they told us to up his feeds to 75ml per feeding b/c they want him to gain a little faster. They also made some medication adjustments. On Thursday, we went the the Ped. office. She thought he looked good. She reiterrated how sick he was and agreed with me that it would be a good idea not to take him out in really public areas b/c he CANNOT get sick. She also did not know why he got so sick so fast, but told me to go with my gut and if I'm ever worried, go to the ED. When we were at the pediatrician's office, Gabe threw up all over me which was odd for him. Throughout the day on Thurs., I also noticed he wasn't eating as well. Justin also changed a diaper that day that he thought had some blood in it. I didn't see it, but he thought it was definitely noticeable. Around dinner time, Gabe was not eating well. He seemed like he was in pain when I was giving his tube feed. He started refulxing some. When he does this, he kind of bears down and holds his breath to fight it. His face turned really red and he was crying unconsolably. When he finally stopped, he looked pale and kinda out of it. I called the pediatrician who we had just seen earlier that day and told her I was worried and she agreed with me that we should go to the ED. I called the Cardiologist on the way and he met us in the ED at Children's. Because we had made some medication changes the previous day, I was kinda worried about his potassium level and blood pressure. Of course when we get there, Gabe looked great and wanted to play and flirt with all the lovely nurses. I felt kinda silly, but I was glad that I knew he was all right. The Cardiologist didn't really have any good answers for the blood in his stool. He said if it happens again to let the Ped. know and it hasn't. Maybe he was just straining or something. As far as not tolerating the feedings well, he just said to cut the Lasix dose if we think he's getting dehydrated and continue to use refulx precautions and give the tube feeds very slowly. He also hinted at the idea that b/c Gabe is a pretty fragile little guy who leaves everyone scratching their head, they want to watch him closely and may be leaning towards surgery earlier than later. He also told me that he "misspoke" on Wed. when he told me the ECHO showed his vertricles were back to normal...they were actually the same as when we were discharged which is still not totally up to par. I was pretty upset at the doc for that. So, Gabe has still spit up from time to time. You can hear him refluxing with his feeds and you just hope he doesn't get sick. We're feeding him very slowly and then holding him upright afterwards. The whole process is taking about 60-90 minutes to ensure he keeps everything down. I know all babies spit up, but this is just new for him and he seems uncomfortable after feeds when he use to go into a food coma sleep. The dietitian is going to call me back tomorrow. Part of me wonders if he's Lactose sensitive, but it seems like we would have noticed something before now. Poor little guy. I hope so much his ventricles get back to baseline so he can be as strong as possible for this surgery. I'm starting to get really worried about the surgery. I feel like this last hospitalization was just a preview of what is to come. I need to stay more positive though. So, here are the positives: Gabe wants to smile so bad...he's so close...it's going to be so cute. Gabe is also sleeping much better at night. We are the one's waking him up to feed him. Katie's wedding was fun. I'm so glad I got to be a bridesmaid. I was worried I wouldn't be able to with everything going on with the baby. It was nice to feel like a girl again. Yay for Grandparents being able to help with Gabe and learning how to feed him and give him his medicines.

We're home!

We were discharged Friday afternoon. There is still no good reason for the poor ventricular function. He looks so good clinically, they are thinking it corrected itself. Maybe it's a miracle. They are going to do another Echo in Cardiology clinic on Wed. Gabe still has the NG tube. We give him a bottle and whatever is left after he is done, we put down the tube. He has to take 70ml per feeding. The tape makes his poor little cheek so red. The home health nurse came by today and his weight is up and he looks good. Hopefully the medications and feeding tube will buy us some time before surgery to fatten the little guy up. He definitely has his days and nights confused, but that problem now seems minimal considering what we've been through. He's been very alert and playful lately which tells me he's feeling better. Gabe wants to smile so bad...he's close.