Update on Lily

I put off posting for a few days, because it isn't as fun to update with news that isn't just that things are going great. Things with the girls are still going very well, but Lily's follow up ultrasound wasn't exactly what we expected. The nurse practitioner tried to explain things to us (as you can see from my post before) but didn't go into the detail that the neonatologist gave us. What we found out, is that the report from one radiologist was worded strange, so Dr. Zac spoke with the pediatric radiologist. They ended up meeting and going over Lily's ultrasound together too.

Lily's bleed is still there, but what was noted are cysts outside of the bleed. This is known as Periventricular Leukomalacia (PVL). The doctor was fairly sure he saw these cysts in the ventricle-- although hers are very small and very close to the brain bleed. The cysts are essentially small dead areas that had trauma, likely in the days/hours before she was born. It seems Claire wasn't the only one stressed in the womb like we originally thought. They decided that since the ultrasound wasn't very clear, they will do a follow up in a couple of weeks. This will give us a more definite answer regarding PVL. If that ultrasound is also fuzzy, then they may opt to do an MRI.

So, what do these cysts mean, if Lily has a definite diagnosis of PVL? It ranges depending on the severity of them. Right now, Lily's cysts are very small and there are not a lot of them. It is also unilateral, which is great. This is all in her favor, and we're hoping if the cysts are definitely there, that it doesn't change. The results will be one of three things. 1) The ultrasound was just a bad picture and after all, she doesn't have PVL because it wasn't outside of the bleed. This option isn't all that likely, but still a small possibility. 2) No change (Dr. Zac believes this is a pretty likely to happen). 3) The bleed is dissolving more and we see more cysts/dead areas. This is obviously the last scenario we want. These dead areas are in the white matter of the brain- an area which is linked to motor control. The dead areas could result in nervous system issues (from slight motor control problems that physical therapy can help correct, to cerebral palsy in more severe cases). There is also a chance, that if there is no change in her ultrasound, that we see no difference in Lily at all- and she grows just the same as a regular child. We won't know this until she begins to move more (usually ages 1 to 2 would give us a better idea). Thankfully, she IS a newborn and the brain is still developing... meaning, even though very small areas of the brain may be dead, she will be able to use other areas just the same.

Obviously all of this information was a lot to take in at first. No parent wants to hear that there could be a possibility of developmental issues, and that there is nothing we can do but wait. But, we have accepted that 'it is whatever it is' and that through all of this, God has a plan. No matter what happens, it won't change Lily and it certainly won't change how much we love her. We appreciate everyone's prayers and support and ask for continued prayers for the girls.

I posted a while back regarding Lily's head ultrasound at 1 week old that showed a grade 1 brain bleed. The doctors told us not to be worried about it, because grade 1 brain bleeds will clear up on their own. One neonatologist said that, "If you take 100 babies with a grade 1 brain bleed, and 100 babies without a bleed- in one year you'd never know which were born with one and which never had one." So, we tried not to worry about it, but its been in the back of our minds since we got her results back.

They did a repeat head ultrasound 3 weeks later (at one month old). Claire's results were again normal, with no bleed. Lily's ultrasound still showed the bleed with a cyst. We met with a nurse practitioner who told us that the cyst is in the white matter, and in a location that COULD cause some slight issues with her lower extremity movement. Because of the location, she wanted to start occupational/physical therapy so that her brain will use alternate routes around the cyst & hopefully it will be no problem at all in her future.
I spoke with a neonatologist who said he thought the bleed was beginning to dissolve, but the other neonatologist wanted to speak with the radiologist about his report because he was a bit confused about it. So, right now we're waiting to hear back from him. Either way they will repeat the ultrasound in 3 weeks. Please keep Lily in your prayers.

Here are some recent photos:

                                                                       May 20, 2012

                                                                           May 19, 2012

                                               Lily going onto low flow nasal cannula! May 19, 2012

                                                    Dad and Claire, bath time May 22, 2012

One Month Down!

Happy one month (tomorrow), Lily and Claire! My apologies for not updating lately. As promised, here is a photo of Lily taken recently. I love how alert she looks-- both girls are spending a bit more time awake nowdays. They are also both doing well, Claire's creatinine continues to drop and is now at 1.0. Right now the focus is to get her to continue gaining weight, because she's very small for her gestational age. Last night she was weighing in at 2 lbs 3 oz. Lily has been gaining pretty steady and is weighing 3 lbs 4 oz. If she continues to grow at this pace, she'll be able to wear clothes soon and fairly soon start to be weaned into a crib. This is a process, because first they have to make sure she can maintain her temp by dropping it .5 degrees at each nursing shift. Lily is also now on low flow nasal cannula like Claire has been. So far so good-- and hopefully they won't have to go back to high flow.

They both continue to see occupational therapy for their thumbs (which is likely due to lack of space in the womb) and speech therapy. Speech therapy is trying to get them ready for breast and bottle feeding, which will begin soon. Lots of exciting things in their future! :)

(5/17/12)

                                            Claire Sophia, 3 weeks old (31 gestational weeks)
                      I promise I'll post Lily photos soon, this is the only one I had on my cell phone!


The neonatologist told us today that Claire's sodium is now in the normal range. This is important, because its an indicator of kidney function (along with her creatinine). This is another big step in the right direction! As of yesterday, Claire hit 2 pounds even! Lily is weighing in at 2 lbs 12 oz. It's amazing how much bigger she looks in comparison to her sister. 12 ounces is a big deal when we're at the two pound mark! :) In Claire's photo, you can see the sling on her left hand. Occupational therapy decided to make one for Lily too, so now they have one more thing in common.

This week has been fairly uneventful in the NICU... and in the NICU uneventful is really good!

3 weeks down...

Today Lily and Claire turn 3 weeks old, and yesterday they turned 31 gestational weeks. We feel blessed to have three weeks behind us, and look forward to hopefully the next few weeks being a bit more steady.  Today they have started weaning the girls off their oxygen. It's a slow process, but they are now on one liter of oxygen instead of two. So far so good.

Lily is still eating at 7 ml/hr and all of her blood work has come back normal. Claire is at 6 ml/hr and had fortifiers added in, but has since had it taken away. The fortifiers add extra calories but also has sodium in it. Since her sodium is on the high side, they decided to cut that out of her diet. They are keeping her on protein though. Her creatinine is 1.4 which is still high, but considerably lower than it was before. The doctors seem pleased with it continuing to drop. Yesterday Claire had a blood transfusion because of low red blood cells. The neonatologist said that it isn't unexpected and he's actually surprised that she made it so long without one (since they draw blood on her so often). Everything went smoothly with her transfusion.

Both girls see occupational therapy every day, and are now also seeing speech therapy. The speech therapist said that both girls take their pacifier and can suck well on it. This is great news regarding when they can begin taking a bottle or breast feeding. She said we can begin around 32 or 33 weeks but they would like to have them off their high flow nasal cannula first. Overall, things are definitely moving in the right direction.

"Stable"

Lily and Claire are both doing well. Lily is now up to 2 lbs 8 oz and Claire is 1 lb 14 oz. We're very excited for Claire to reach the two pound mark! For the past couple of days they have been talking about removing Claire's PICC line. The reason they haven't removed it yet is because her sodium is high. A while ago her sodium was low, so they added some to her TPN... and they believe they just over compensated which is causing it to be high now. It should go down now that its been removed from her TPN. I'm hoping by tomorrow they are able to remove her line. She is back on her nasal cannula after having it removed for a couple of days. It was so crazy to see such a tiny baby without ANY breathing support. She did really well for those two days, but had one day where she struggled a bit without it. So, they put her back on the high flow cannula and she seems content. The doctors mentioned that this was a possibility and to not be concerned about it. They don't consider it a set back but normal for a baby at her gestation. Lily is still on her high flow nasal cannula too. She hasn't had many changes since my last update, aside from them continuing to up her feedings (along with her sisters) and adding in extra protein and vitamin D. Claire is getting extra calories in her breast milk to stimulate weight gain.

This evening when Joe and I were at the hospital, both girls were awake and had their eyes open. The nurse commented on how good they looked and how active they are. I asked the nurse practitioner how they are doing in comparison to other babies born at their gestation and she told me that they are doing awesome. It's so good to hear that they are doing well and see them growing a little bit every day.

Zane took a sibling class today at the hospital. I wish we would have remembered the camera, because they were teaching them to gently hold the baby, burp them, wrap them, etc. He wasn't very careful, to say the least! As all of the kids were being so careful with their baby dolls, Zane was pretending to burp his and the doll was half way down his back-- holding onto it by the legs. It may be a while before I can leave him in the room alone with the girls! :)

Happy 2 weeks Lily and Claire!

Tonight was a very special night-- I was able to hold the girls at the same time! Finally what I've been waiting for...

When the nurse put them on me, they immediately started breathing better and their heart rates went down- they became more relaxed. During the day, Claire was using more oxygen than usual- she went to around 50 ccs. When I held them together, she dropped to between 6-12 ccs. Lily went to room air for a while.

 Claire even sucked on Lily's arm, which didn't bother her any. :) The entire time I held them, they did so well and their stats were great. It was pretty amazing to finally see them close together... and even more amazing to see the connection they have with each other. 

We just love them so much!

30 gestational weeks

Today marks 30 gestational weeks for Lily and Claire. It feels good to be in the 30's! The girls are doing pretty well. Lily is now weighing 2 lbs 3 oz. Last night she weighed 2 lbs 4 oz, but since it's just an ounce, it isn't concerning. Claire weighs 1 lb 11 oz. They are now seeing an occupational therapist and have gotten new pads to lay on. The new pad allows as little pressure as possible against their bodies, which will help with keeping their heads round. They are very picky about how they lay, and always want to lie on their stomachs... so we're hoping this helps. The therapist also noticed that Claire tends to keep her thumbs in, so they made a brace for her hand. The brace is switched during 'cares' every 4 hours. During this time they also do hand exercises.

Tonight during cares, Claire's temperature was 101.6, she was breathing very quickly, and her heart beat was around 200. The neonatologist and nurse practitioner checked her out & were concerned. She had just gotten a new bed at 6 pm, so they decided to put her into a new bed hoping it was her external environment and not her body causing the temperature to rise. Thankfully, switching her has seemed to solve the problem. Her creatinine this morning was 2.0, and is continuing to drop. Her BUN is doing the same thing, so it's hopeful that these numbers will soon be within normal range.