Welcome Home Ruby!

Ruby came home yesterday! She was discharged with a pulse oximeter to wear while she was eating. They first tried to send her home on an apnea monitor which was terrible. She doesn't have apnea, so it didn't make any sense, and she had to wear these electrodes on a belt around her waist. The false alarm kept going off when the electrodes would slip, and it was so loud and obnoxious that I felt like we were causing hearing damage. I had to spend the night with her in the hospital to show that I knew how to use the monitor. I won't go into how ridiculous this was, but it's the rule and I did it. In a way it was good because I was able to tell them we didn't need the apnea monitor and the MD agreed, and we just came home with the pulse ox. She is still desatting some, but it is not bad and she doesn't do it every feed.

One day in and so far so good. I'm trying to get the girls on the same schedule which is working, although when by myself I feed one first then the next. It is still taking them 30 to 40 minutes each to eat, so I feel like my day is feed, burp, change repeat. Emmett hasn't paid them much attention but he is acting out so I know it is affecting him. One day he will thank me for giving him sisters, right?

Jake is off his seizure medicine. Small episode/seizure at school Monday morning but otherwise ok. We have an appointment with the neurosurgeon in April to explore surgical options to treat seizures. He just doesn't do well on medication. Hoping and praying for the best until then.

Together after 89 days in the hospital. 

They look so much alike now that we can really put them side to side. 

I love this one because Millie (on left) seems to be saying "what, I thought I was the only one and now I have to share?" and Ruby (on right) is happy to be home.

One week home and where is Ruby?

We've had a great first week home with Millie. She is so precious and seems to wake up a little more each day. She is not always making it 4 hours to eat anymore, but that's ok. Ruby is still on a 4 hour schedule in the NICU, so we'll have to work on getting them on the same schedule when Ruby gets home. Speaking of Ruby.......we thought we would get to bring her home yesterday, but she has continued to desat (drop her oxygen) off/on throughout the week when eating. It's not really when eating, but when we are burping her or after eating. She always brings herself back up without intervention, but we'd like her to not do that at all. It seems to be getting better. Two weeks ago she was dropping into the 40's and 50's, and this week she has just been dropping to the 70's and 80's. The MD said yesterday that we should be able to bring her home this coming week, and if they have to then they will send her home on a monitor. I can't wait to see the girls together. Millie was 6 lbs 4 oz at the pediatrician last Wednesday and Ruby was 6 lbs yesterday! I love seeing their fat cheeks.

Emmett is starting to figure out that "the baby" is staying. She is out of sight out of mind most of the time, exact when I'm feeding her or holding her and Emmett wants "UP!" He has also been taking her bottles and pacifiers and running away with them. Having two home is really going to rock his world.

Jake has been on the new seizure medicine two weeks now. He seems more irritable - not quite as bad as when he was on Vimpat, but he's on such a low dose that I worry about increasing. He has also had three weird events (maybe I already mentioned this) where he wants to fall asleep suddenly, and he gets very fussy. He can't keep his eyes open, and this has happened at random times in the middle of the day. Twice he went on to sleep for several hours, and then vomited later which makes me think it was some type of seizure. Very odd to me that in the three weeks that Jake was off medication he was happier and had no seizures. Now that he is back on medication he is having problems again. Seems like an easy answer - just take him off medication, but the neurologists are telling us that this will lead to worse and worse uncontrollable seizures. I think it may be worth the risk though, because it is heartbreaking when he is crying and crying and can't tell you what it is that is bothering him. Yesterday morning I was lying in bed with him at 5:45 am trying to buy us a few more minutes before actually getting up. He was so aggravated and kept reaching back to pinch me. I find myself getting angry because it hurts and when he screams it wakes up Emmett, but Jake has no other way to communicate what he is feeling at those times.

To leave you on a happy note.....here is Millie happy to be home.

Welcome Home Millie

Sorry for the delay in posting this week. You'd think I had four kids or something. Millie is home! We thought we were bringing both girls home, but I have been a nervous wreck about Ruby. She has been dropping her sats after eating all week. She comes up eventually, but to watch her dip down in the 50's and bounce between 50 and 70 % for several minutes is pretty scary. It's odd because she has no trouble when she is actually eating, but afterwards when she needs to burp she tends to hold her breath. Our primary nurse has been out for 8 days and she was back today. She expressed concerns about it, because Ruby was still on oxygen with feeds the last time she worked. We both talked to the neonatologist about it today, and he suggested they keep Ruby for several days to watch it. The MD was actually there when I was feeding her and it happened today, so it was good for him to see it first hand. After looking at her chart he thinks she might just be over feeding. Apparently she is taking in about 30% more than they expect. She is "ad lib" feeding, so she can eat as much as she wants. She comes by that honestly! I was sad to leave her in the NICU but honestly pretty relieved. I am hoping that this will improve and she will be home in a few days. 

We're so excited to have Millie home. She's only been home 6 hours, and we've already had to change her clothes 3 times due to blow outs. The girls are on a 4 hour schedule right now which is pretty dreamy. I'm not sure that it will last when they "wake up" more, but it does make things easier. My boys always ate every 3 hours, so we'll see. We were worried about Emmett's reaction, but when he got up from his nap his Mimi (my Mom) and his Daddy were home in addition to me and Mamie (our nanny - not her real name but what Emmett calls her), so he was pretty excited. He looked at Millie and said "baby" but that was about it. Jake came home from school and went immediately to a swim lesson, so he didn't even really see her. By the time he got home she was asleep in her bassinet. Speaking of Jake, he has had 2 probable seizures this week, so please continue to pray for him. More on that later.

The hospital photographer took some pictures of the girls this morning. Wow - those have come a long way. I didn't even order any with Jake because they were so horrible and no one offered to take Emmett's pictures. These were pretty professional and they took multiple pictures. I snapped a few with my I-Phone during the session. 

Welcome Home Millie. We miss you Ruby.

Growing Girls

The girls are packing it away lately. Millie is 5 lbs 6 oz and Ruby is 4 lbs 14 oz! They are really filling out, and the preemie clothes actually fit now. They have been doing better since their setback, although just when I start to think things are really better they have a bad day. Millie is being weaned off the oxygen, but she still has the nasal cannula at a low flow and mostly room air O2. She needs more during and after feeds. Her nurse yesterday thought she was having some reflux, because after eating it seemed like she was swallowing a lot. Ruby has just been needing O2 when eating, but yesterday the nurse was able to feed her without O2 until the feeding I tried to do. She actually seems fine when eating, but she holds her breath when she needs to burp, and she kept dropping her sats after eating too. I'm wondering if both girls have reflux, but that's not a term they throw around lightly in the NICU, so we'll see. It does seem like they have both had more trouble since going to the open crib. In the isolate their beds were at a 30 degree angle and now they are flat. They will not elevate the open cribs, because they don't want you doing that when you go home (SIDS risk).

(Thanks to Liz H for these adorable onesies!)

Jake ended up staying two nights at Vandy. I was not planning on that. I had packed us up and had one foot out the door when the MD came in and recommended another night. They just wanted to make sure they captured everything they could. Jake did not have an actual seizure while we were there, but the EEG showed increased electrical activity/sparking in the right posterior brain. The MD recommended starting another medication. He said that leaving Jake off medication is not an option because most likely the seizures will increase and spread to deeper areas of the brain and be even harder to control. Jake was actually really good while we were at the hospital. By day 2 he was definitely ready to leave, but overall he was pretty content. Getting all the glue out of his hair is another story. Jake is also still limping. I took him to the orthopedic on Friday and they x-rayed his hip, knee and foot but nothing showed up. I think the limp is worse and it is really worrying me. He does not seem to be in pain, but he is not walking well. If it does not improve then we'll have to go back to the MD. Jake can't seem to catch a break lately.

We would appreciate prayers for Jake and the girls as well as their caregivers. We have been blessed with amazing nurses and doctors, but pray for them as they make decisions for all the kiddos.

Last but not least Emmett continues to get into trouble on a daily basis. I really find him hilarious, and it's so fun to see him develop. Everything is so hard for Jake that we marvel at Emmett when things come so easily for him.

"Who me? I have no idea how these spaghetti noodles got all over the floor."

Jake's EEG

One hour in it was looking like this:

Jake actually looks ok in this picture but it was mostly crying and kicking and trying to get those electrodes off or to get the techs to stop messing with his head. I just had to hold him tight. Afterwards he was very still and quiet for about 20 minutes just watching the Vecta machine (bubbles and lights) they brought in to distract him. I think he was so worn out from all the crying. Eventually he started playing and moved from the bed to the floor and back. The electrodes are attached to a long cord that allows him to move around pretty easily.

Jake ate a good dinner and Scott came to visit. He got several visits from Child Life (our nanny used to work for Child Life so we got primo star status!) and even got a pillow pet as a Valentine's Day present. He does not seem to be very bothered by the electrodes now.

As I write, Jake is supposed to be going to sleep. He is quiet but still rolling around. I am praying for a restful night for him. We should know the results of the EEG in the morning. I want to sincerely thank all of you for your prayers, notes, messages etc. It really gave me strength today as I got closer and closer to our 2 pm start time, and I felt empowered by all the good thoughts circling around me. It really does make a difference.

Millie and Ruby are doing better. Millie is on continuous oxygen although at a low flow and Ruby gets oxygen when she eats. Millie is getting a bottle every other feeding and Ruby is getting a bottle every feeding. The MD assures us that they will get back to where they where before the setback, but they need a little more time. Millie weighs 5 lbs and Ruby weighs 4 lbs 9 oz!

Ruby sucking her thumb today!

Millie

Emmett in motion about to pounce on Avery!

Happy Valentine's Day! Love, The Doolots

It's a Marathon, Not a Sprint!

Anyone who has had a significant NICU experience will tell you it's a marathon and not a sprint. Setbacks are expected, there will be ups and downs etc etc. I have been feeling pretty blessed that our journey has seemed so straight forward -  with each obstacle expected and then goal met and we moved on. My girls are clearly sprinters I thought. I tend to be slightly on the competitive side (ok a lot), and I have found myself wondering things like, "What's the fastest a 27 weeker has ever made it out of the hospital? Maybe my girls will be the record for the fastest NICU stay." The past 5 days have been a big reality check and reminder that it just doesn't go like that with preemies.

Last Thursday Millie started having some episodes of bradycardia (low heart rate) and apnea (low oxygen) spells. She seemed lethargic and was not feeding well. The MD ordered labs and it showed inflammation and possible infection. She said it might just be from the vaccinations that she got, but they needed to do a septic work up just in case. This meant that Millie got a lumbar puncture and urine culture, and they started antibiotics until those labs came back (which take 48 hours). This sounds over the top, but you have to take infection pretty seriously in the NICU. Babies can get infections which can lead to significant illness, disability and mortality. Her labs did not end up showing any infection, so after 48 hours her antibiotics were stopped. Unfortunately she has continued to be puny and need some help breathing, and she is back to getting a bottle every other feeding (they had increased her to bottles at every feed). We don't really know the cause - whether it was the vaccinations or her just getting worn out or reflux when eating - lots of possibilities. I talked to the neonatologist today, and she reminded me that this is the usual course for preemies. She said that we got a taste of how good they could do which makes this setback hard, but if they were able to do it before (be off oxygen and take their feeds well) then they can do it again. She also said that after a setback it takes awhile for preemies to get back to where they were - it's never an instant bounce back. We're still 3 1/2 weeks from their due date.

Ruby seemed to sail through the weekend. She finally made it to an open crib (current weight today is 4 lbs 7 ounces) and take all her feedings by bottle. They even took her feeding tube out! She was on course to come home this week, then she had a spell yesterday where she dropped her heart rate and oxygen. This means an automatic 5 more days assuming she has no more spells. They call this "spell count down." Since yesterday she has had a hard time keeping her oxygen up when eating. She seems to need to burp, but can't burp then holds her breath and stops breathing well. Today she kept dropping down into the 30's (normal is 90-100%) and turning blue. It was terrible. I was feeding her, and I felt so helpless. The nurse kept coming over and giving her oxygen through a mask. We would get her up and start feeding again, and it would happen again. The same thing has been happening with Millie, but since she has a nasal cannula the nurse just turned up her oxygen while I fed her. After the bad feeding with Ruby this morning, the nurse asked for an order to put her on oxygen while she feeds. Their nurse called me tonight to tell me that her next feeding went much better. So....definitely not coming home this week. That is fine with me. I don't want them coming home until they are stable. I was sweating and having terrible anxiety during both girls feedings this morning. It's just so crazy how different this week is from last week when they were downing their bottles without any problems and not on oxygen. Of course, they were not taking every feed by bottle, so maybe it has worn them out and they need some catch up time. Millie's weight today was 4 lbs 15 ounces!

Jake got new braces and shoes last week. His PT decided to change up the type of foot brace he has because he has been turning his foot out. He has not been as steady in his new braces, because he has to get used to a different feel in them. Starting last night it went from instability to actual limping. It continued this morning so we switched him back to his old braces. I went to school and his teacher and I watched him walk in his new braces, his old braces and barefoot and the limp persisted. I took him to the MD this afternoon. He does not seem to be in any pain, so we decided to give it a few days. Jake has broken his foot twice in the past so I am nervous about this, but both times he fell and I don't know of any specific fall this time. We're going to keep him in his old braces for a few days and see if it gets better.

Tomorrow I am taking Jake to the Children's Hospital at 2 to start his 24 hour EEG. This is where they put leads all over his head to measure brain waves and look for seizures. They will also have a video camera on him, so that if there is an event then they can see what he was doing at the time. He will be able to get out of bed, but not leave the room. Jake is very sensitive about having his head touched, so I am really dreading it. It's going to be very difficult to keep him entertained and keep him from pulling all the leads off. I also just realized that I will have to pump multiple times while we're there. Hope they don't get that on the video camera. Please pray that it will not be as bad as I am expecting it to be. Thanks, Elizabeth

2 Months (Almost)

Millie and Ruby will be 2 months old tomorrow. It's hard to believe that in a "normal pregnancy" they would still not be here. They both got their 2 month vaccinations yesterday and today. They split them up and the girls got 3 shots yesterday and 2 today. The girls did great and only cried for a second. The nurses gave them sugar drops to suck on which really helped. I was kangarooing with Ruby when Millie got her shots. They brought her over to me so I could hold her for a few minutes. She's still a good bit bigger than Ruby, but she looks huge in this picture because she is all wrapped up in blankets and closer to the camera. Ruby let out a few cries as if to say excuse me "sista" but this is my time. Their coloring is also different, because Millie is still a little anemic despite her transfusion.

The girls were also given orders today to take all their feedings by bottle (if they can). Millie did not finish her 11 am feeding, but she did well with her 2 pm, and Ruby was doing well with her feedings when I left. They will try to feed them with bottles, but if it takes too long then they can always put the rest in their feeding tubes. They won't remove the feeding tubes until the girls have proven they can take all the feedings without any problems. Still no word on actual discharge. Millie needed a little blow by oxygen the other night so this is another thing that cannot happen for 5 to 7 days before discharge, so we'll see. We'll have a better idea next week.

Millie from the Hood

Cookies for the Nurses tomorrow to celebrate the girls' 2 Month Bday

These were made by the talented Maggie Jackson of Sweet Cheeks Cookie Co!

Jake is still off his seizure medication. He is doing ok. He has moments of fussiness that we can't figure out but not as bad as it was when he was on Vimpat. His teachers say he seems a little more focused, which is good. We have his 24 hour EEG tentatively scheduled for this Tuesday, so Jake and I will have a Valentine's Day date at the hospital. Tentatively scheduled because we have to get insurance approval and this is last minute, but I wanted to get this done before the girls come home. Hopefully it will work out.