Monday, 2/28

As Gilda Radner used to say, "It's always something". That's sure been holding true for our little buddy the past week. He continues to be on the right track in terms of his infection and respiratory status, but now we have a new hurdle. On the right side of his neck he had an infiltration from his PICC line that created a massive blister that has now burst and spread. So he has about a 1-1/2 to 2" wound there. I don't really understand all of the mechanics of it but basically there was a fluid build up there that has caused this to happen. It is in a painful spot. They are putting "silvidene" on it, a cream frequently used on burn patients, to help it heal. Plastic surgery was coming by to look at it today but I wasn't able to stay to hear their assessment because we are having another snow storm. Basically they will make a recommendation on how to treat it. Worst case scenario would be surgery (a skin graft) but speculation about that is very premature. Right now they are just changing the bandage every four hours and hopefully it will heal. He is at risk for "contractures" (a thickening of the tissue that makes movement more difficult) so as his swelling goes down they will be working with him to make sure that that area doesn't get too stiff and tight. It's all very complicated. Speaking of his swelling, it has gone down the tiniest bit. The good news is he's been a peeing machine so hopefully that will continue to go down. To give you an indication of how swollen he is, his weight is now 1710 g. That's up 500 grams from last week and almost double what he weighed when he was born. Throughout all of this he has continued to be the sweetest, bravest little thing. He is definitely an amazing little boy.

Sunday, 2/27

Whew! What a week it has been. Today left me a little unsettled. Dinky is still so bloated. I didn't think it was possible but he seems more bloated today than yesterday. They continue to think it's just a side effect of all of the fluids and his infection. They did take out his "PICC line" (a central line that has been in his temporal vein for a few weeks) to make sure that's not the source of the swelling. They are also watching his kidney function as he is not peeing very well and some of his lab work is a little concerning. However, right before we left he peed quite a bit so we were very relieved about that. They went up on a few of his vent settings thinking maybe that would help with the bloating as well. He still hasn't been fed again, they just want this to resolve a little more before challenging his system w/ the milk (he is getting TPN, liquid nutrition). This has definitely been our hardest week but hopefully as he continues to get over this infection we will see him getting back to his old self again!

Saturday, 2/26

Things continued to improve for our little man today. He is still fighting this infection but in general he is improving. The hardest thing to see is he is very, very, very bloated. This is a result of all of the fluids he has received, the infection, etc. The doctor said he isn't worried about it but it's so concerning for me because it's the main thing I can "see" as opposed to everything else that's going on internally. In general his respiratory numbers are really looking better and getting closer to where they were before all of this happened. His oxygen is now at about 30% and he is doing well there. (He was at 21% before). His ventilator pressure (how much it blows up his lungs) is at 26 (it was at 20 before, 30 yesterday). His rate is also coming down. They are planning to try and feed him later tonight which is very exciting. They will start slowly but hopefully he'll soon be back to "eating" like he was.

On a funny note, in the children's hospital there's a giraffe that tells you to "stand under his neck and he'll tell you how tall you are". I did just that and he informed me I am "2 inches tall". I know I'm short but come on! That gave us both a much needed laugh.

Friday night, 2/25

Guess what? I don't have anything bad to say! Finally!! Yes, our boy is still very sick, but he is definitely better than yesterday. He has been stable on the vent with his oxygen ranging between 37-50%. That is higher than we would like but after yesterday I'm sure he needs time to rejuvenate. The doctor was encouraged by his progress today and said if he continues to improve like he did today we can get him over this hump. Our goal is that by next week his vent settings will be back to where they were early this week. He is still not getting milk but they will restart this once he tapers off his dopamine (a medicine they gave him when his blood pressure was too low). We were so thrilled to see him open his eyes today and look around. He even squeezed my finger a little bit. The doctor likened what he went through yesterday to being hit be a car, if you ask me it was more like a mack truck. We are definitely taking things day by day...today was better than yesterday...but hopefully not as good as tomorrow.

Friday morning, 2/25

Happy 3-week birthday Dinky!! We got a phone report this morning and so far Dinky has been pretty stable. His vent settings are still higher than we would like but that may just be what he needs to get through this infection. He has not had significant desaturations like he did the other night. We will have more to report tonight but just wanted to let you know that so far things seem to be going okay...

Thursday, 2/24

It has been so hard the past several days knowing that I have to come up here and deliver sad updates to all of Dinky's friends and family. We so want to get back to last week where our main focus was how chubby our little boy was getting. Unfortunately the news today isn't good either. In fact today was the hardest for me and Martin, but especially for our little hero. While we were en route to the hospital the head nurse called to make sure we were coming. When we got there we were led past Dinky's room where there had to be 15 people gathered around his bed and everything that could beep or alarm was doing just that. I have never been so scared. The "working diagnosis", as nothing is definitive, is that Dinky's infection (probably sepsis but not verified) was just overtaking his little body. They were having a very hard time getting him stable from a respiratory standpoint. Finally, after hours, he seemed to stablize somewhat. The doctor had warned us that with sepsis things definitely get worse before they get better, we hope that today was our "worse" and that tomorrow will be our "better". Dinky is very sedated so is hopefully not aware of everything that happened today. It's so hard to see him like this. I long to see those little beady eyes and the wrinkles in that little forehead. Thank you again, and we cannot thank you enough, for all of your support.

Wednesday, 2/23

Unfortunately our little trooper is pretty sick. He does have an infection although they have not yet determined the source or type. It is taking a toll on that little boy. They have started antibiotics to treat him but he is really struggling from a respiratory standpoint. When we left they had switched him back to the conventional ventilator (from the oscillator) so we will see how that goes. His numbers are much higher than they have been, especially his oxygen requirement, which is concerning. Also complicating things is his PDA (the flap in his heart we talked about last week) which has reopened. They are trying to treat it again with the Indocin. It was a scary day, it has been a scary few days. Again we appreciate and need your prayers, love, and "strong world conquering thoughts" (thanks David ;) We love you all.

Tuesday night, 2/22

For those of you that know my mom you've no doubt heard her famous sigh. Insert that sigh here. I love this blog and love that so many of you are rooting for our little boy and I feel like you love him like we do. That being said I have to tell you that sometimes writing this blog is just plain hard. Unfortunately today is one of those days. Little Dinky is not having a good day. Over the past few days I have written about his continued episodes of brady and desats which have continued today. His blood gases continue to be poor so they are switching him back to the oscillating ventilator that he was on 2 days after he was born for one day. This ventilator "uses very small puffs of air delivered rapidly to oxygenate the blood without requiring full inhalations and exhalations". In the meantime he is being "worked up" for various infections. That being said he seemed quite comfortable today. He slept most of the time that I was there and when he wasn't sleeping he just stared up at me with his crinkly forehead and big, brown eyes. Since all this happened everyone has prepared us for the "roller coaster". Since the surgery this has been our biggest downward hill and we're ready to head back up. We thank you all again for your thoughts, prayers, and love.

Tuesday morning, 2/21

We just wanted to take a minute to thank you all for the comments you leave. We both read them every day and they mean so much to us! Thank you!!

Not too much of an update this morning. They have bumped Dinky's ventilator rate back up to 30 because he was just requiring too much oxygen to stay at 28. Hopefully as his lungs heal they will have better luck weaning him. They're also going to keep his feedings at 3.5 mL an hour until the respiratory status settles down a bit. In the meantime his weight has dropped to 1130g which isn't surprising because he had had such a HUGE gain a few days ago.

Monday evening, 2/21

Dinky 

Here's our boy. He gave us a fit today! He continued to have episodes of brady and apnea while we were there today. It was so hard. I think we were both just incredibly drained (and Dinky, too!) Finally, the doctor the nurse and the respiratory therapist were all working with him and suctioned out a big plug of mucus. That seemed to do the trick because he really settled down after that. His vent setting is down to 28 so that's pretty good but he is requiring about 40% oxygen. His chest xray shows that his left lung is still a little puny. The weird thing is they had put a little metal "clip" on his esophagus to mark it on xrays. Well, in the xray today they can see that it came off and is now in his stomach!! They have reassured us that it's nothing to worry about and he'll just poop it out but we're a little worried nonetheless. The doctor likened it to when a child swallows a small coin and says he won't feel a thing. So we'll see how that goes. Other than that he's trucking right along. We were able to snap this picture today when his little "house" was open.

Monday morning, 2/21

Just a quick update this morning. Dinky's blood work came back and his hematocrit and hemoglobin were low which they think accounts for his multiple episodes of apnea and brady yesterday. So last night he got a blood transfusion which will hopefully help things. He's also getting an xray of his chest and abdomen so we'll be anxious to get the results of that. We'll be heading in right after lunch so we'll let you know how things go this evening....

Sunday, 2/20

I've had a little trouble with this site today so hopefully this will work. We've just gotten home from seeing our little fellar. Unfortunately today is not a very good day although we can't find a concrete reason why. Dinky had many, many episodes of brady and apnea and just generally looked uncomfortable. They did a blood gas to check his new vent settings and that seemed fine. He's now at 32 (remember he had been at 40-45) and his oxygen is between 25 and 30 (with 21 being room air). The blood gas shows us that he's tolerating that setting okay. When we left they were doing some blood work to make sure he doesn't have an infection although he doesn't show any clinical signs (no fever, etc.) So maybe it's just an "off" day. The good news is he is eating a lot and his weight is up to 1150 (they're sticking to the 1130 from yesterday). He's now taking 3.5 mL every hour and they will increase it be .5 every 12 hours as long as he's tolerating it. Since he was so sensitive to any touching or commotion I didn't change his diaper again today...I think he's still traumatized from yesterday! Hopefully tomorrow we'll have a better report.

Saturday, 2/19

Not a lot to report today. Dinky is eating well. He's up to 2.5 mL an hour for 10 hours, then he gets a 2 hour break and then eats 2.5 mL an hour for another 10 hours so he's getting 50 mL per day. The weight they calculated last night was 1130g, up from 1040...we don't quite believe it. I just don't see how he could have gained 90 g overnight!!! When they weigh him it is not an exact science, one nurse may disconnect more tubes than another, etc. So it's a guesstimate for sure. He's still on the bilirubin light but hopefully will be off by tomorrow. The excitement of the day was that I changed his diaper for the first time. That was a challenge!! His little legs are so squirmy and I can only reach my hands in the 2 holes on his isolette and you're trying to work around ventilator tubes, etc. It's not as easy as you might think!! Martin and I were joking that Dinky was probably thinking, "Who is this new nurse?? Get her out of here!!!". Watch out, Dinky, tomorrow it's daddy's turn!! :)

Friday morning, 2/18

We just got back from visiting Dinky. We went early this morning because I had my follow-up appointment and Martin had to do some work this afternoon. In general things are good. The one bad thing (but not so bad in the grand scheme of things) is that Dinky's bilirubin is back up and so he's back under the light with the eye patches. His number is not that concerning but because it's not going down they just want to treat it. The good news is the nurse couldn't hear a heart murmur this morning so that's encouraging regarding the closure of his PDA although we won't know for sure until they do an echocardiogram (maybe this weekend or Monday). Also, they feel like he's stable enough to start eating again. The surgeons want him to have a continuous feed rather than a feeding every 3 hours so probably what they'll do is give him 10 mL over a course of 10 hours and then stop for 2 hours and then do the same thing again. We'll see how that goes. They decreased his vent setting to 38 but we're not sure it will stay. When we left his blood gas was a little bad so they were going to repeat it in 2 hours and if it was still bad they might have to increase his vent settings again. (Blood gas: A blood test for determining the pH and levels of oxygen, carbon dioxide and bicarbonate in the blood. The test tells if a baby needs more or less oxygen or other changes in the respirator) And finally, our little porker weighs in at 1040g now, up from 965 at birth. Different conversions tell us different things but the NICU grams to pounds converter puts that at approximately 2 pounds 4 ounces! And so far he's had an increase of 20 grams each day for the past 2 days!

Thursday evening, 2/17

Just got back from seeing little Dinky. He looks really comfortable today. It's still so nice to see him without his "blindfold" on. He was able to finish the Indocin for his PDA and we should find out in a day or two if that worked. The nurse already mentioned that his murmur did not seem as loud so we're hopeful. He seemed to tolerate the medicine well. Hopefully this means he can start eating again in a day or two. The are trying to wean the vent down again. Hopefully his chest xray and blood gases will contine to look good so they can keep going down.

Many of you have asked about seeing a picture. We've been a little unsure how to handle this because I just don't think the pictures do him justice. Please know that he really looks comfortable when we look at him and is often sleeping very peacefully. The pictures look more "sad" than our boy does in real life. Keeping that in mind I'll post a link because so many of you have asked and we thank you for caring. Hopefully this will work...just copy and paste the link into your address bar. If it doesn't work please email me and I'll send you the link:
http://share.shutterfly.com/osi.jsp?i=EeGMnDdy4ZtCE

Thursday morning, 2/17

Just a quick update from overnight...One of the problems with the Indocin that he is receiving for his PDA is urine output being limited. So by 2 am when he was to have his 2nd dose he had not had enough output so they held it. They gave it to him at 4am after he peed just a little bit. So he hopefully will get his 3rd dose at 4pm if he contines to have a little output. His chest xray looked a little better and his vent settings are being slowly decreased. He's at 43 now with 25 percent oxygen (versus 45 with 21 percent). They up his oxygen a little to compensate for the lower vent setting. They are going very slowly and so far he seems to be tolerating it okay.

The night nurse took pictures last night since he has his little eye patches off. We will also be getting up there with a camera soon. It's been hard before now because you really couldn't see his cute little face. We will definitely work on getting some pictures available, thank you all for asking about him. I can't tell you how good it makes us feel to know this little boy is so loved.

One thing I forgot to mention. The night I got home from the hospital we ordered Chinese food. My fortune cookie said, "The path of life shall lead upwards for you". After the pain and heartbreak of the week prior to that it definitely felt good to read that. It's a keeper.

Wednesday, 2/16

It feels like there's a lot to report tonight! Dinky's bilirubin is down so he's off the phototherapy and has his little eye patches off! I hope it stays down, sometimes it rebounds. Martin and I could not take our eyes off of him. Now that we can see his whole face for an extended period of time we have just fallen in love with him all over again. He really is just the cutest thing. He seems to favor Martin quite a bit. He struggles to open his eyes (I'm sure it's hard when you've had a blindfold on for over a week) and his little forehead just crinkles up. He really is just adorable (and of course I'm not biased).

The other major thing is they have decided to treat his PDA. I haven't really mentioned that on here because we didn't know if it would be a problem. This morning they did a chest xray and his heart was a little enlarged so they have decided to treat it. Here's what it is:
Patent ductus arteriosus (PDA)
A PDA is small blood vessel within the heart that fails to close after birth. Premature infants are at greatest risk of PDA. Babies with PDA are treated with a medication called Indomethacin to try to close the vessel. If medication attempts do not close the PDA, surgery may be required to “tie off” the vessel. This surgery is called a PDA ligation.
They started the medicine today. He will get three doses, once every 12 hours. The sad part of that is he can't eat while having the medicine or for 48 hours afterwards. That makes us so sad because they had just increased his feedings to 6 mL and we could really tell his belly was starting to fill out. Hopefully he will jump right back to that point when they can feed him again.

Tuesday, 2/15

Sorry to be so late updating everything but we had a bit of a late evening at the hospital. Tonight Martin and I went to a support meeting held in the NICU that was pretty helpful. It was me and 2 other moms, and Martin was the only dad...bless his heart. Dinky seems to be doing pretty well. The good news is he is continuing to tolerate his feedings and weighs 1000 g (2.35 pounds) up from the 2.2 at birth. Go Dinky! His ventilator settings are still a little weird. He was at 45 initially and 40 when we left (which means the machine gives him 40 breaths a minute). The good news is he only requires 21 % supplemental oxygen which is actually room air. And with only 21 % his oxygen saturations are still 98-100%. That's very good news. The bad news is his left lung is collapsed. His lungs keep doing this, one and then the other (this is called atelectasis). It usually resolves when they position him w/ the affected lung facing up. The bad apart about this is that when his left lung collapsed it meant he had to lay on his right side which he can't stand. He can't make any sound but you could tell that if he could...watch out. I touched him a lot today which was nice. He put quite a squeeze on my pinky. It's so weird to see my hand next to him. I have small hands yet they engulf my little baby. I have noticed that Martin's little desk calendar has stayed on 2/4 since Dinky was born (his birthday). I guess neither one of us has had the heart to change it....

Monday evening, February 14th

Well, good and not so good news from our visit today. The good news is so far Dinky is tolerating his feedings which means I have to make this short so I can get upstairs and make some "food" for him! They just increased his feedings to 2 mL every 3 hours so we'll see how he does with that. The not so good news is his lung functioning. His vent setting is up to 45 mainly because of the collapsed lung. Poor thing. The doctor is generally pleased with everything but they are a little befuddled by the "mechanics" of his lung functioning. In general he seems to be doing well but he is so sensitive to any movement or anything being done to him that he has frequent episodes of apnea and bradycardia but there aren't any solid medical reasons for it. Obviously one problem is that his lungs collapse easily but when they are inflated he still has these problems even though the general condition of his lungs is good. He has some scarring but not a lot. The 2 times I was in the hospital with preterm labor they gave me a steroid that speeds up his lung functioning so hopefully that has paid off. Hopefully tomorrow will bring only good news. Thank you again for all of your support. Happy Valentine's Day!

Monday morning, February 14th

Unfortunately our phone report this morning wasn't what we had hoped. Dinky's left lung is collapsed (again). The nurse said, "it's just a part of prematurity" so we're trying not to be too discouraged. His vent setting is back up to 40 while they try and resolve this. The good news is that so far he has been tolerating his little feedings of 1 mL every 3 hours. They may increase it today. We'll be going in at 1:30 and will hopefully meet w/ the main neonatologist so hopefully we'll have a good update for this evening. Thanks again to everybody for caring and for your support.

Sunday, February 13

Dinky is doing pretty well today. The nurse teases us that he acts up whenever we get there. Apparently he had been having a good morning but when we got there he started having episodes of bradycardia and desaturations. They relate this to a few things: tube placement, immature lungs, sensitivity to touch. Hopefully as he grows and gains weight this will be less of a problem. He did tolerate a little feeding (1 mL of breast milk) through his g-tube. As longs as he tolerates that he will have 1 mL every 3 hours and then they will increase it tomorrow. This will be a big step for him because he needs to gain weight. He's down today to 940 which is about 2 pounds 1 ounce. We are also anxious for his bilirubin (related to liver function) to improve so that they can get rid of the phototherapy and eye patches and we can get to know his face a little better. Unfortunately his number was a little high today (a little over 5, it needs to be at 4) so we'll be watching that. .....

Saturday, 2/12

We just got back from visiting Dinky. In general he's had a good day. They are trying to lower his vent settings and unfortunately he didn't tolerate it. He had several episodes of "brady" (heart dropping) and low oxygen so they had to "bag him" (they disconnect the vent and breathe for him with a mask that they hand squeeze). He didn't tolerate a vent setting of 25 so it went back up to 30. The good news is he's only on supplemental oxygen at 25 percent...21 percent is room air. So that's good. They didn't try to feed him again today, maybe tomorrow. He has eye patches on because he's under a bright light for jaundice. Anyway, they took his eye patches off for a little bit. While it's so nice to see his full face, it's also very painful. Just to look into those little eyes breaks my heart. Right now he definitely has Martin's eyes. The nurses are all calling him Dinky. Poor guy. In fact the nurse put a sign on his isolette about something and she addressed it: Ruef, Dinky. That's it for tonight.

Dinky

Edison, "Dinky", was born on 2/4 at 11:50 pm via c-section. He was born at 29 weeks 5 days. At birth he was diagnosed with a traceoesophageal fistula (TEF) and an esophageal atresia. He had surgery on 2/5 to correct the fistula and will have another surgery in a few months for the atresia. He is currently on ventilator support in the NICU where he will be until sometime in Spring. This blog will be used to update family/friends who have been so supportive of us. We cannot thank you enough for all of your prayers, calls, cards, flowers and support. We will try and post a daily update on his status. Here is an update of what has happened so far:
2/4: born
2/5: surgery to repair fistula and to place g-tube
2/6: unstable from a respiratory standpoint after surgery. Severe case of respiratory distress syndrome. Possible pulmonary hemorrhage. Placed on oscillating ventilator which provides shorter, faster breaths.
2/7: placed back on regular ventilator, ultrasound of head is normal which is a big relief.
2/9: Jen comes home.
2/10: chest tube taken out, PICC line placed in temporal vein, he will received medicine through this which means he won't have to be "poked" every time.
2/11: Happy 1-week birthday!! They tried to feed him today but he didn't tolerate it :( We will try again either Saturday or Sunday. They are attempting to wean the ventilator which is happening slowly. When they try he has episodes of "brady" (bradycardia) where is heart rate drops. We will keep trying slowly. Talk with doctor today who reports they are please with where he is at this point while reminding us that he is still "fragile". His RDS (respiratory distress syndrome) seems to be resolving somewhat.