A return trip to the hospital

Well, friends and family. ... we had her back for a week or so. I guess it was almost 3 weeks this time. We got her home on Thanksgiving night. We held our own for those few weeks for a while. The hard part was ALL Adrienne's for sure. She had to haul Olivia and her apparatus to the various doctors that she had to see. We had put in a request for a small much more portable O2 canister, but it never happened. And since they put her on O2 (that's oxygen to all you non-science folk) we had hoped to get the pulsamoter (sp?) which is the little sensor that is wrapped on her feet and keeps a running record of the O2 level in her blood ... they have these on the little ones in the NICU all the time ... so, we saw some doctors and changed some medication amounts and adjusted the feeding times and tried to keep the little one in the right way.

She started to have a bit more trouble breathing late last week. We tried to suction out any of the mucous and excess junk in her nasal cavity, but did not have much luck. They weekend was much rougher, and Adrienne probably slept around 8 hours all weekend total. She is the one who always be there for Olivia, and she doesn't miss anything.

We wondered what we should do for her ... should we go to the ER again ... (that was not a favorite idea for sure) we called the various doctors, but they were hard to reach. Olivia would have some down time, that seemed to be going well, and then she would wake up and be in a bad way. SO. ... on Monday, Adrienne called our cardiologist and told them that she was bringing Olivia in. They made room in their schedule for her. After a chest X-ray and some other checking, they decided that she needed to be checked into the hospital. Her breathing was so labored and her vitals were bouncing all over the place. I think the first night and last night too, were really rough for her and Adrienne, (Adrienne has stayed up there since Monday night, and will be there until Saturday, when I will not be at work). ... They went through various diagnosis steps and decided up pneumonia. They have been unable to find any bacterial infection or any easy to label viral infection. (no RSV or anything like that) but she had too much fluid in her lungs. Our cardio specialist decided that when she is stable, they will do the PDA procedure. This is a relatively simple surgery, that will clamp off the vein that is still open on the two arteries that leave the heart. This is the main culprit in almost ALL her ailments.

Once this is taken care of, her breathing should improve and she should have a better chance at growing and developing. They also diagnosed her with secondary pulmonary hypertension. This is because of the heart defects that cause her heart to work too hard and the lungs still were not pulling enough blue blood and returning enough oxygenated blood. The two were mixing at the PDA sight ... so, she is stable but not in an alert or active state at all. They have her all hooked up and intubated to have a machine do most of her breathing for her.

Now here we are again just waiting for her to regain some strength and for her chance to have her surgery. In the meantime, we are just hanging in, I am the solo parent at home for this week, and my folks and Adrienne's mom have been doing daytime kid duties with Sara and Andy.

Merry Christmas to you all out there, and stay in touch, I really like to get some emails from you all with your words of encouragement ... I will post again as I have some more news and time to do it ...

— be seeing you, Andrew

Olivia comes back home on Thanksgiving

Hey all,

We finally got her home again on Thanksgiving night ... She came home on 02 (only 1/2 liter rate) which has helped ease her rapid breathing. She is more than a full-time job for Adrienne and I. Adrienne mostly, since I work during the week. Olivia needed to have some suction done for her nasal cavity the first few days she was home, and then she started breathing much better. She has started to respond to her environment like a baby should. She will respond to faces and sounds by looking in the direction of them and she will startle at a loud sound. She will also mimic a face to a degree, i.e., she will stick out her tongue if you get kind of close and do the same ... she has been reaching for the little things that dangle over her in the bouncy seat. and she gave her first true and lengthy smile to Sara!!! Her big sister is one of her favorites. I think it is because she is one person around here who has not poked and prodded and upset her in any way. (Mom and Dad are always changing her and fiddling with her.)

After a couple of appointments ... she saw the surgery team who did the G-tube / fundoplication and they proclaim that she has had a remarkable recovery from that surgery!!! They also thought that she weighed about 6 lb and 14 oz, then Adrienne went to the pulmonary appointment. They pretty much confirmed their thoughts from before ... get the PDA fixed and her lung problems will all but go away ... they also weighed her at 7 lb 4 oz. Mmmmm 6 oz gain in less than 2 hours ... sure. I guess there is know accounting for the human ability to interpret data uniquely. ... So, we are all snug as bugs and hoping to avoid them as well. The appointments also tend to coincide with feedings of Olivia (who can not afford to miss a meal, unlike most of us) which Adrienne somehow managed to give to her ... as well as lug an 02 bottle around too (It is one of those ten gallon tanks on wheels) She is the one who is really doing the hard part ... mine is managing to stay involved at my workplace and make sure the "other" kids (hee hee) get some attention and plenty of time to themselves. ...

(The following is an excerpt from a letter to a family in Michigan who has a new baby who is also a CdLS child) AND it was written by Adrienne!!! woo hoo ...

She has PDA, PFO and VSD - 3 holes in her heart that we were told should not pose a problem to her. Now they were posing a problem. She was put on digoxin for her heart (which they told us if we didn't make sure her heart rate was within limits or were not careful with the dosages that we could kill her ... no pressure there!) They monitored her for another week on the meds and let us take her home. We had her for one week and she started having breathing problems again. We were told to take her to the ER at Herman. Here again, I had to be her advocate against tests that were clearly not needed. They took so much blood and she is such a hard stick (they previously shaved off wonderful curly hair to get IV's to no avail). They thought she was septic and must have some sort of bacterial infection. Cardiology didn't want to own up to her heart being involved after an unchanged Echo. Meanwhile, they are taking blood all the time. I finally got fed up and put my foot down and refused any more blood taken. They were wearing her out and she was not herself and could not be consoled. The resident was bound and determined that she was not tolerating her feeds and insisted that she go on continuous feeds.

Olivia is a very gassy baby and we desperately needed time to vent her tube. I refused continuous feeds, got a little mad and they sent in the Chaplain! I didn't say one mean word (out loud) but my husband says that my face says it all. The pulmonary team came on board and after another chest X-ray it is found that the PDA in her heart is pushing too much oxygenated blood into her heart causing pulmonary edema. Thank You!

We came home on Thanksgiving night! Now we go to clinic appointments very often. She needs the PDA surgery, but she is not big enough. At 6lbs. 4oz. (thanks to the G-tube) she may gain enough for surgery, yet with the syndrome's history of small growth, I don't know if she will gain enough fast enough or be strong enough to withstand the procedure. We are told now that our job is to feed her and keep her from any viruses or infections. (Again, no pressure there!) I guess my long windedness (this is the first time I have written about her, so forgive my ranting) comes down to becoming very bold for your child and insisting on what you believe is a serious problem. I am working now with a very good therapist and friend on what will probably be a long road to get her to be able to swallow properly. We have yet to see a GI specialist outside of the surgery and I do believe that is of great importance. With CdLS, even though there are very similar situations, I see parents charting their own course as it seems that EVERY child is so unique with this syndrome. Now that Olivia is a little older, she was given a confirmed diagnosis of CdLS. I am a very different mother now than I was three months ago. You become the advocate for your child. We love her so immensely and know that God has entrusted her care to us. We are not afraid of what is around the bend so much anymore ... probably because we know that there is always going to be something around the bend. A very good friend of mine told me "Peaks and Valleys, Peaks and Valleys". I know that God is walking us through both! God bless you and your family! This is an awesome responsibility. If you would like to correspond, I promise that I will never write so much again! Otherwise, I hope your son improves everyday. We will add you to our prayers and hope the best for you!

Sincerely, Adrienne and Andrew Schultz